Update from Admin


While I am committed to continuing to offer this site for those who need the information, I will no longer be able to respond to readers personally. Between time constraints and liability, I find that it is no longer in my best interest to correspond with readers. I have put ALL I know about this subject in these posts and if I come upon any new information that may be helpful, I will surely post that information immediately and without hesitation.

Please know that in due time (whatever time frame your body/mind need to heal) you will indeed heal. In all the years I ran this site, every single person I’ve encountered (even very rough cases) has healed and resumed a normal, happy life.

Please take my suggestions seriously. Even simple things such as vitamins, sunlight and eating well can have a profound effect on the body and mind. Don’t underestimate the power of simple cures and the power of affirmations and prayer.

Godspeed in your healing journey and know you will come out the other side STRONGER than ever before!

80 thoughts on “Update from Admin

  1. Hello Again- i just wanted to say that I’m convinced now that my driving has been a catalyst for my waves. In has really backed off of things for a good week or so. Over the course of that week things started to settle down some. Last Wednesday and Thursday things were pretty calm and symptoms had reduced a fair amount. Then i had to drive 3 hours for work on Thursday. Since then, I’ve progressively gotten worse where last night was rough. I’m very sensitive to all stimulus (sound, jumpy) and i had that feeling of terror and doom when i woke up last night. The actual restlessness has not been as intense which I’m thankful for. I get surges of this feeling like i want to cry throughout the day and that’s in response to the sensitivity. The evenings are a little better overall. This morning I’m still feeling it the slight feeling of fear and my body is very tired. I really had backed off of things including my walks where now I’m just going slow for 30 minutes. I guess in learned that while in this acute state I’ve entered i need to really back off of things. Its hard Though because i do get bored just sitting around. I’m not really able to watch tv and reading is hard. I try to do simple chores and activities around the house. Nothing too activating. Anyway, i just thought of share the driving experience. I believe it is what caused my flare ups and it may be what has kept this going like it has. I’m open to any thoughts or insight.

    Thanks!

    Craig

    1. Craig,

      Yeah, I found when I was healing that instead of TV or reading I actually found some relief in tinkering around the house with small projects and cleaning. SOMETHING to do, but not too stimulating.

      It’s really good you’re figuring out what works and what doesn’t work. You’ll get through this…and with your mindfulness on what works and what doesn’t, the healing process really should go fairly quickly.

      All my best,
      Angie

  2. So i had improved some over the past few weeks. Still up and down but I was feeling a little better. This morning though I’m now in an intense wave. My actual inner restlessness is not terrible it’s the fear, doom and feelings i won’t survive, etc that is really intense. I’m uncomfortable. Yesterday was an intense day driving and working. My day started with a 40 minute walk with my wife who walks fast. The activity has to be what is setting this off. I’m going to really back off driving and really everything the next 2 or so weeks. Even after that I’ll keep my driving to a minimum. I have to get my self back to a baseline. Monday night i was feeling ok. Things were calmer. Today is the worst I’ve felt in a while. I may have to just concede and take time off from work. I’m not sure yet. I can work from home to some degree so maybe they can work. Regardless I’ll go low stress for awhile. I know ups and Downs are normal but i think in this case my actions are causing more downs. Really the only thing to do is reduce stress as much as possible? Do you have any suggestions?

    1. I’m sorry Craig. The doom and fear are just a terrible part of akathisia. If you’re able to cut back on stressful stimuli I think that’s a good idea. I also think it’s better to walk in a way that refreshes and rejuvenates (relaxed meandering, really taking in nature and taking your time) rather than speed walking. Maybe you should walk alone for now, or maybe she’d slow it down for you?

      I agree and it’s this way for most, the activities you partake in each day dictate how your brain/body will react, so in turn, how your healing process plays out. While I think it’s probably a good idea to stay engaged on some level with the things you enjoy that connect you with others..cutting back a bit on taxing activities like driving excessively is also probably a good idea.

      Even when you’re feeling your worst, just keep in mind that this too shall pass..it will. You will heal and you will be totally back to normal. Trust in yourself and the ability of the body and mind to heal with time. Even when you have a setback you’re still in the process of healing.

      Sending positive healing thoughts your way 😀
      Angie

  3. I’m aware of the windows and waves pattern of recovery. Currently I’m in a wave with my inner restlessness and my Akathisia in general more intense. That said, compared to 9-10 months ago it’s much better. Is interestingIn that they are similar in feelings but just less intense. Still very uncomfortable but better. Some symptoms have improved overall. Some have almost disappeared. My sleep has been a little bit better recently. Still broken but I’m getting more of it. It also seems deeper when I’m sleeping. My question is with recovery is it typical to have these ups and downs? I ask because as I’ve mentioned in other posts i have to drive for work a lot. Probably 4-5 hours a day a few days a week. It’s always been tough but it seems a little harder recently. I’ve had improvements and I’ve had windows so i know I’m healing. I’m just curious what I’m going through is typical and the driving isn’t the problem. What’s interesting is when i get to my destination many times when i socialize i feel better. The past free weeks I’ve not felt as good that way. Maybe I’m in ax wave and the stimulus is causing me more issues than when i was in a window. It’s so hard to balance. I want to heal but i also need to find a way to provide for my family. I’m wondering if i should reduce my work schedule by going part time, etc. I’m just scared i May lose it. Any thoughts? Will i heal if i keep this up? My kids schedule has reduced which is good. At least for a few months.

    1. Craig,

      There are a few people I’ve talked with that have worked through it, but it is hard. If there’s any way even to reduce your driving a bit, my guess is that it would help soothe your nervous system. Driving was the LAST thing I was able to do. It was VERY problematic as it requires the whole body and mind and is very stimulating. But I’ve seen people deal with A LOT of stress and still heal. You will heal. How quickly you heal depends on how much positive input you get (positive thinking and imaging whenever possible and positive interactions with others as tolerated) and how much over stimulation you can avoid for the time being.

      You are definitely healing. The up and back process is absolutely 100% part of the akathisia process and the good times will get more and more and the bad less and less.

      All my best,
      Angie

  4. Hello,

    I now understand I developed Akasthisia last April from taking to high a dose of Zoloft. I took that for 4 days. I was switched to lexapro which i then took for 11 weeks. I was also on buspirone for 5 weeks during this time. Took trazadone probably 3-4 times, ambien maybe 4 nights. Since July 4th I’ve been off everything. So I’ve also been in WD as well. Overall, 10 months later, I’d say I’m slowly getting better. I’ve had several windows the past months and there have been moments where I’ve thought’ I’m turning the corner’. This past Sunday for most of the day i felt pretty normal but later in the evening i got hit with the symptoms. Generally, my mornings are the worst. It used to be pure anxiety. Now it’sa little bit of that restlessness especially in my legs. I’ve had mornings that I’ve felt ‘calm’. As the day goes on i generally feel better. Later afternoon and early evening I’ll get that inner restlessness where i have a hard time sitting still. It seems like it’s worse now than a few months ago but it’s not as bad as the beginning. I’m not having the panic like i did. Fear seems to come and go. Generally i have low anxiety now. I’ve been sensitive to sound and ‘startle’. I also have sensitivity to touch at times. They all seem to be calming down overall. I really can’t watch TV or handle very emotional things yet. Sleep is erratic. I typically get a stretch of 4-5 hours then it’s hit or miss on falling back to sleep. I’ve had stretches of sleep where I’ve slept closer to 6-7 hours straight. Recently though I’ve been in a sleep wave. I’m taking magnesium glycinate several times a day and melatonin at night. Probiotics and vitamin c. I eat healthy and try to walk everyday for 30-60 minutes. My job requires that i drive allot so that’s been tough at times. But i have to work so i find away. I have 3 kids from 10-16. A wonderful wife. This all brings me to my question. I’ve always ‘pushed’ myself to move forward. Recently I’ve had a very busy schedule with kids activities. Volleyball games, cheer competition (loud and busy!) track meets, my sons confirmation. It seems the past month in many ways I’m better (my mind seems stronger and less ‘frantic’) but I’m having more symptoms that were not as strong. For example, the feeling of fear and wanting to cry. That’s been strong. Also the actually restlessness seems stronger. Sleep is worse. Do you think my activities are triggering me?

    I only found this blog this past week. I really never realized that i had akasthisia until i found it. I had heard of it but didn’t realize that was what i was dealing with since i really didn’t have that constant pacing. This has been helpful. I especially like the positive mind set. I’ve been repeating to myself constantly the i will heal, that i feel better and I’ve been focusing on the positive. As soon as my mind goes towards symptoms or scanning my body for symptoms i redirect and think positive things like i am healing, etc. i really believe this is helping me.

    Also the yam cream; do you know of any men have used it? I’m thinking of it but I’m hesitant because of the hormones.

    So I’m definitely better than back in July as a whole. Very little anxiety, minimal depression if any, calmer mind, less panic, no heart Palps, sound sensitivity is better, touch and startle is better, appetite is better. My mind is stronger. I’m left with periods of restlessness, fear and sleep issues.

    That was a long post. Sorry about that but i want to share where i am and get thoughts on things that i can do to help my recovery.

    Craig

    1. Hi Craig,

      Yes, it’s likely all the activity, even driving is not helping the healing process. All those taxing activities and sensory input take a toll when you’re trying to heal from akathisia. On the other haaaand,,, staying up with supporting your kiddos and all the positive energy at these events is probably actually helpful. Which is likely why you’re a bit all over the place with some symptoms getting worse, while others getting better.

      It’s wonderful you’re already doing so well and are able to function as well as you are…so it looks like it’s only a matter of time before you turn that next corner toward getting truly back to normal. : )

      No reason to worry about the hormones in the yam cream,, for a short duration it’s really not going to have any lasting impact. But could be helpful for the short term. I remember one guy who said it was helping, other than him, I haven’t heard from any other guy who tried it. It’s mild and safe but may just give you a nice result. Probably worth a try.

      Please keep in touch during your healing process.. it’s helpful for others to hear from those who have walked this path before them and nice to hear details such as what you’ve included in your message here. Keep up with the walks and positive redirecting!! Excellent!

      Let us know how things are coming along for you or stop in to share or vent anytime.

      All my best,
      Angie

    2. Hello Angie- thank you for the reply! I just ordered the yam cream so we’ll see how it goes! I’m definitely in a wave now. Symptoms are strong. I’m pretty sure my activities are causing this wave. But like you said, i believe the positive interactions are helpful. It’s so hard! I’m hoping this passes quickly and I’m closer to healed! But who knows. I’ll take it slowly these next few days. My problem is i hate to sit back and not stay busy when i don’t feel well. I can’t nap or watch tv so it’s pretty hard. My Sloan to myself during the hard times is ‘i can do hard things’. I have no choice with this. I’m hoping to sleep better tonight and tomorrow is a better day!

      I’ll be sure to stay in touch. I hope you’re right and I’m not too far from getting through this but we’ll see. When this started i thought by Christmas last year I’d be back to normal.

      One last question for you-prior to this mess i was an avid workout person. 6 days a week of 1-2 hours working out. Now, like i mentioned, i walk most everyday for at least 30 minutes. When do people usually return to working out? Meaning late recovery or when they are completely healed? I almost jogged the other day when I was feeling decent. But i knew better.

      Thanks for all that you do! This is an incredible service to so many people in need.

      Craig

    3. Craig,

      I haven’t heard much about people’s workout habits. I’d say work back into it slowly now. Maybe just some strength training, slow and easy. I know when I workout with weights I actually can feel the “feel good” chemicals starting up. I think as long as you aren’t over taxing your body or mind it can only be a helpful adjunct to healing.

      Keep us posted. I know not a lot of people comment, but a lot of people read these posts and it’s helpful : )
      Thank you for sharing,,
      Best,
      Angie

    4. Thanks Angie! I do want to share my latest experiences. My symptoms really seem to be changing. I’ve had several decent days and last night was a very good night. I went to my Sons track meet which ran late. I socialized for probably 1-2 hours and felt good doing it. I wasn’t thinking about feeling bad or my symptoms, etc. in truly enjoyed the evening! I slept about average for me last night. Today, I’ve had more symptoms. I’m guessing from the busy, late evening last night. I’m feeling more’ sick’ like and just off. Burning chest, etc. the restlessness is not bad and my general sensitivities are doing ok. I’ve felt kind of a Sadness. I do believe I’m healing considering I’ve had some better days but I’m just not ready for too much stimulus yet. After this week my kids activities drop off and I’ll keep work as light as possible. But it’s interesting how much different i feel than even 1 month ago. In some ways better but others worse. Its hard when you feel better and then get hit with the waves but oh well. I woke up with a back ache last night so i knew i was in store for this. I find i get a physical symptom before the emotional ones come.

      Thanks again! I’ll probably start light lifting in a month. I just want to give my body a little more time.

  5. Hi there,

    I unfortunately, have had akathisia twice now, once in 2019 and again today. The first time I had it I came across Angie’s blog, which was a godsend considering that I had received Compazine. Your story resonated with me completely and it took care of me. Fortunately, I recovered from it’s grip in about a month, but as everyone here knows even one second is too long.

    The tough part here is now I have it again, and I received it from Zolpidem Tartrate 10mg as I have been taking it on and off to help me sleep for 2 years. Suddenly, yesterday it brought on symptoms which have raged on since. Symptoms I didn’t have the entire time I had been taking it. This really breaks my heart as I for quite foolishly didn’t think Zolpidem would be a perpetrator and thought it was on the side of being more as a healing modality for Akathisia. I also thought this because of the insidious “non-benzo” tag, and when I look it up I find 0 evidence of Zolpidem causing akathisia specifically. Truthfully, I only have myself to blame to be put back in this spot.

    I just wanted to know if you had dealt with anyone in a similar situation and if they made it through. Furthermore, are there differences that I should expect from acquiring it in two different manners? Thanks for all your work!

    1. Paul,
      There’s no reason to think it’ll be worse the second time. Actually, from what I’ve seen, if this happens it usually resolves a lot quicker. Not sure if it’s because you are already armed with the knowledge and understanding of what to do for yourself from the start or if somehow the body deals with it more effectively after having already been there. I haven’t heard of this med, not sure how the after effects play out exactly.. but that probably wouldn’t matter if I had heard of another person’s experience with it, because as we know how you recover very much depends on where your body is at when it starts and the things you do to facilitate healing.

      I know a great deal of help comes from having a steadfast optimistic outlook on your own recovery process. It feels impossible at times with akathisia, but just keep in mind your body is working every single second on recovering and do those things you know help it along the way.

      Keep us posted and write if you just need to talk/vent or get some support.
      All my best,
      Angie

  6. So glad that I found this site. I have been suffering from akathesia for about three and a half months. I had a nervous breakdown last June. I was admitted into the psychiatric ward for 6 days where they prescribed me a low dose of the antipsychotic “invega”. Around August I began to have some strange symptoms. It started with some anxiety and confusion with ordinary household tasks. It was like I was beginning to become unfamiliar with cooking, cleaning, dressing, etc. I thought I was getting dementia or something. Before too long I began becoming uncomfortable sitting down and my concentration was going away. I could not sit down and watch television or pay attention to much of anything. I found it too difficult to go for walks and was getting a sense of panic when trying to go anywhere. By late September, I visited my doctor who told me to double up on my meds. I got worse and ended up going to the hospital emergency thinking I was having a heart attack or something. I thought that I might have had a brain tumor or something. I thought I was going crazy. I checked out fine and was released home. My doctor then decided to start me on a mood stabilizer, Lamotrigine. He said it would straighten me out. It did not. I phoned him 2 weeks later telling him I thought I was going to lose it. Very nervous, agitated, can’t sit still, etc. In agony. This was early October. My doctor recognized that it was akathesia. He instructed me to quit the invega and he started titrating me up on the lamotrigine. Then things got bad. To make things even worse, I noticed that I was starting to lose a ton of hair. Going back to the doctor, I was given a script for zoloft. He said that the antipsychotic was out of my system and all I had now was anxiety. I went home and filled the zoloft script. I only took it for four days, but by then, I was scouring the internet for info. I was reading some terrifying accounts of people who were addicted and screwed up from so many meds. So I quit the zoloft and quickly titrated back off the lamotrigine. That was about 5 weeks ago. Ever since then I have been having panic/terror/anxiety on and off. I had been using an old prescription of hydroxyzine since I dumped the invega two months ago to help with the insomnia. I got freaked out on that about 4 days ago and quit that too. Half of my hair is gone now, which does not help with the constant panic attacks. I don’t know if it was due to meds or my nervous breakdown in June. Anyway, I am fortunate enough to be getting between 5 and 7 hours of sleep at this point. Food is difficult to eat. I get hot flashes and feel like I want to get out of my body, like I am being held hostage by it. I have to step outside into the cold and breath very deeply when I panic. I am terrified of everything. I had been attributing all these symptoms to withdrawl, not to akathesia. I could not figure out if I was just going crazy, getting dementia or what because I was told that akathesia would instantly go away. WRONG! I am grateful to read this website and everyone’s experiences. Now I am sure what I have. I am scared though at the same time. I have often described my symptoms to others saying that I have claustrophobia and panic attacks along with dementia type anxiety. Just weird stuff. Everyone I talk to discounts it a little as it being stress or covid anxiety. They do not even comprehend how horrendous this affliction is. I am thankful to everyone who posted and for this site. At least I have now confirmed that my akathesia never went away. I hope it does. Good luck all.

    1. My prescribing doctor didn’t think the terror/panic even went with all the other symptoms of akathisia. It wasn’t until I talked to a psychiatrist who deals more with akathisia that I was told the truth… akathisia can come with bad anxiety. I suffered months on the drug because my original doctor got it wrong and thought all my symptoms were just anxiety related. I was kept on the drug and up dosed needlessly also. Keep your environment as serene as possible. Look up techniques to help with anxiety (such as meditation etc) and do what you can. Sometimes they take practice to work. Follow as many directions as can on this link. Keep note of anything that triggers symptoms so you can avoid them. You will recover and will be amazed at how strong you are.

  7. I experienced severe akathisia from Latuda. It was tardive akathisia. It began with a slight hand tremor with agitated anxiety feeling. Within a week grew into full blown pacing, inability to sit down at all, inner vibration, doom dark painful emotional feeling, muscle twitching, brain zapping, and insomnia. When I called my doctor they upped the dosage thinking it was just anxiety. My symptoms obviously didn’t get better. I called numerous times and always heard, “anxiety…give the med two weeks for the med to work”. I stupidly believed them. I had brain zap, heart pounding, and difficulty breathing at night With all of the other symptoms in the day and with those symptoms given propranolol. This helped the anxiety some but was miserable. It was unbearable and got off the Latuda cold turkey (not good) and experienced symptoms for many more weeks. I stayed on the propranolol as long as I could in order to deal with the panic and muscle twitching. It’s two and a half months later and weaned off the propranolol. I did experience a rebound of physical symptoms at wk six of getting off Latuda. I no longer have the need to move but still experience the rush off and on of inner akathisia with difficult to think through anxiety. My sleep is still a wreck but with Cognitive Behavioral Therapy-insomnia I was able to get 4 to 5 hours. I’m taking magnesium, vitamin D and Zinc. Vitamin B6 seems to bother my sleeping. I’ve stayed away from anything too activating like TV, computer, cell phone, and any type of stress. My biggest trouble now is sleep, anxiety, fears, and slight depression starting. I am getting better but as severe as it was, I never thought it would happen.

    1. Jen,

      Thank you for sharing your experience. It’s GREAT your duration of severe wasn’t that long! It sounds like you still have a ways to go before feeling 100% but also sounds like you’re well on your way and doing everything right in taking care of yourself. These personal accounts help others who are
      in the midst of full blown akathisia to realize it WILL resolve in time.

      Again, thank you for taking the time to share your story!
      All my best,
      Angie

    2. Can someone suggest ideas for better sleep? I’ve done Cognitive Behavior Therapy-Insomnia which helped a little. I’m currently doing 2-5 hours a night every night. Doctors are prescribing Trazadone which is a antidepressant. Terrified to take that. Have done melatonin, Benadryl, Tylenol PM, and magnesium. It’s been five months and wondering if this will ever get better.

    3. It will go away. Adding more drugs, especially trazadone might thwart your efforts in healing. I’m not a doctor so I can’t guide you in what to do, but I’ve seen people have trouble when they continued taking antidepressants. Several people have had luck with propranolol, but I don’t have any personal experience with it so I can’t say for sure. If the majority of the agitation is gone and you’re just left with the insomnia portion, I’d say you’re in a very good place and to ride it out rather than throwing drugs at the situation, you’re closer to being over it than you think!

    4. Just wanted to come back and say things are better. Not 100% but I’m back at work and doing day to day things. Still deal with some sleep issues off and on but manage to sleep 4-5 hr stretches. I’m struggling with what feels like inside tremors or nerve vibration. It’s been a long time with this symptom and still wakes me up at night sometimes. My female cycles, harder physical labor, or just fatigue makes it come. Really I have it still every day. I’ve not heard anyone say theirs has lasted over a yr but it’s been 15 months since I’ve been totally off meds. Hoping for a full recovery, still worried about it coming back and still mad at the doctors and big pharma for ignoring what so many are dealing with.

    5. That’s really great news! Thank you for the update. It all affects hormone balance as well, so it kind of makes sense. I’m eternally angry about this too!

  8. Hello All,

    Before I post my situation I noticed this blog hasn’t had some entries for a while so wanted to see if I would get a response begire I reach out.

    Thank you
    Becky

    1. I always consider it a good thing when there’s a lull : ) ..but if you post it’s still an active group.

    2. Hello,

      Sorry I never noticed you replied to me.

      I have been struggling for over a year with what I believe to be akathisia I was given a few different medications last April to try and help with my anxiety. While starting on one of the meds I began to experience the issues in my legs the constant on edge feeling, can’t keep still need to keep crossing uncrossing my legs inner restlessness and upset, no appetite tearful and just feel completely doomed of course more meds were added to the mix. I have been going for walks to get me through. Of course nobody believes me and said it was all anxiety which I do suffer to a great degree. Therefore I was told to stay on my medication. During this time I never had any rest bite but I guess as I’ve seen in your other posts you will not heal on the offending meds.

      The final med which I have tapered off off was (Escitalopram) now been off for 7 weeks but have not seen an improvement I now am struggling to sleep again which is making all the sensations so much worse!! I feel like my head is in a bubble and I can’t concentrate… Would this also be to do with akathisia or withdrawal off my medication.

      I need some reassurance as I feel I am doomed forever I always feel like I’m getting spurts of adrenaline through my body is that a part of it? Will I ever heal? I understand you are not a medical professional but if you could give me some advice or support I would really appreciate it.

      Thank you for your response
      Becky

    3. Hi Becky,

      Not able to concentrate and those spurts of adrenaline and brain zaps and not sleeping, agitation, feeling doomed and hopeless and inability to sleep at all.. it’s all so common to akathisia. It’s just going to take time. Taking walks was the main thing I attribute to my body and brain finally getting back in balance. I’d sometimes do it 2-3 times a day if I was physically up to it. There’s something so healing about nature and sunshine.

      Keep doing everything you can to nurture your body like this and it will definitely take less time than it may otherwise have for you to heal.

      My thoughts and prayers are with you..keep us posted on your progress.

      You WILL HEAL!
      Angie

    4. Hi Becky,

      So sorry to hear you are suffering from Akathisia. I too was prescribed different meds to help control my anxiety and suffered similar symptoms with restless legs, the need to keep constantly moving and that awful feeling of terror and doom, that this will never end. I seemed to have the 24/7 variety, with no respite and was averaging 2-3 hours sleep each night, usually up and about and pacing around the house by 4am each morning. When I spoke to my doctor and suggested I might have Akathisia he simply replied – “Aka what?? That’s a big word”! Most doctors are supreme in their ignorance of this side effect! Nobody believed me either and my husband thought I was going mad! It was only through careful research and helpful, supportive forums such as this one that I knew my gut feelings were right and this wasn’t part of my initial anxiety. If my doctors had had their way, I would have been back on the meds and would never have recovered!

      After tapering off my final med (too quickly), I felt much worse for about 5 months. In desperation, I got in touch with a top neurologist who specialises in movement disorders and for the first time, I was treated like an intelligent human being and finally got my diagnosis of Akathisia both verbally and in writing – a copy of which was sent to my GP’s surgery! I was offered some meds to help me through, but by this point I was terrified of taking anything else and I was starting to feel my symptoms lessening anyway.

      I found nature was my best friend in all of this. Being outside in the sunshine, walking and trying my best to take care of myself; eating healthily although I had no appetite; avoiding over-stimulation such as too much time on the computer and watching certain TV programmes would make me feel worse. Being around positive people who were supportive also helped, not being believed, or other people’s negative reactions only made me feel sicker!

      Overall I experienced Akathisia at it’s worst for around 6 months. But I did eventually completely heal and now lead a normal happy life – med free! I feel the important thing to focus on is that this will end and you will get better, although that can feel hard to believe when you’re in the middle of it, but you will, just try to survive this one day at a time.

      Take care and best wishes,

      Judi

    5. Hi Judi,

      Thank you so much for coming back to me I really appreciate you taking the time to answer me.

      I really just needed hope that this will all get better as at the moment I am in a very dark place and can see no light at the end of the tunnel with this constant suffering.

      I will keep you updated with how I’m doing.

      Thank you both again
      Becky

    6. Hi Becky,

      I will be thinking of you and wishing you the speediest of recoveries!

      Although I experienced Akathisia several years ago now, I still remember only too well how dark that dark place really is. Looking back, I found the cruellest part of Akathisia was the way in which it seems to rob you of all hope, making it so hard to even visualise recovery – at the time I didn’t believe I would ever recover or have any kind of future.

      Every small improvement can give you hope – I saw them as chinks of sunlight amongst the clouds, but I found sometimes I would take a step back, but try not to be disheartened if this happens, I found that gradually the good days became more and more frequent as my body healed itself.

      Stay hopeful and be kind to yourself – I now enjoy a full life with a new career as well as studying, travelling and enjoying family life with my children, something I could never have imagined a few years ago!

      Take care and best wishes,

      Judi

    7. Hi Becky ,
      How you feeking?
      I’m wondering how you getting on and if you feeling any better?
      May inaske how have you tampered your offending medication?
      Did you tamper fast or slow?
      All the best and would like to hear back from you

  9. I want to thank you so much for this blog, the information – and all the encouragement it gives! I always return to this page as soon as I am having a bad spell, or a setback. It gives me hope! There is always some info here I had forgotten about that pinpoints to what might be going on this time, and suggestions for steps I can take. Thank you again for creating a “first-aid” for my akathisia!

    1. Fredrik,

      You’re very welcome. I’m glad it’s a help. If you ever have questions or need to vent, feel free to post. I wish you a quick
      road to recovery!

      All my best,
      Angie

  10. Would anyone know if you can take the Wild Yam Extract or any of the other recommendations during benzodiazapine withdrawal? My whole withdrawal, I have suffered endlessly with this. Thanks.

  11. Just wondering if anyone here has had experience (both good and bad) using the supplement NAC (N-ascetyl-cysteine) to help akathisia. I think I have experienced some benefits from using it at 600mg 2x a day. It seems to work by modulating dopamine and glutamate is some way, possibly through the antioxidant glutathione. As well as helping akathisia it seems to also benefit a number of psychiatric conditions such as OCD, depression and psychosis…

  12. I would love to hear positive stories from people that healed specifically from benzo withdrawal related akathisia.
    While I am in other meds it was the steroid then benzo that caused the damage to my Cns. It literally hurts and feels fried
    I have shown this blog to two doctors. I hope they read it. But bc of their arrogance I doubt it. I hope so.

    1. Hi Lisa, I am in a similar situation. I was given a benzo initially because doctors didn’t know what I had. A few days later I realized it was akathisia but the benzo seemed to be working so I took that occasionally for about 2 weeks – when I stopped, I crashed hard and was worse than when everything started (this also gave me very bad tinnitus). Now I had to go back on the benzo (.125 Klonopin 3x per day) and I’m also on Lamictal, Gabapentin (only 100mg) and Propranonol (5mg 3x daily). All kind of small doses except for the benzo. You are doing the right thing by coming off of that one first which is my plan as well – I may increase the gabapentin to offset it. I hear you, I didn’t want to be on ANYTHING now I’m taking 4 things. At this point, you just have to take it slow and not rush any tapers even though the goal is to be on nothing. It’s natural to want to speed things up to get it over with but that also comes with repercussions (I feel aggravated about this as well). You’ll get over it though, none of this is permanent. The body has a tremendous capacity to heal.

      Can I ask how long you were on the steriod for it to cause akathisia? That sounds like a rare instance but I’m sure it’s possible (I also had withdrawal from steriods after just a couple weeks of treatment but more in the form of aches and nerve pain).

  13. Hi Angie, I’m hoping you might have some insight for me. I’ve had akathisia for almost 2 months now. I must also note that my akathisia was mainly subjective (inner torment, fear, feel like I’m going crazy, suicidal ideation to make it stop – not regular anxiety). I do not feel the move to pace but did do occasionally out of nervousness or for a distraction. I’m able to sit still for long periods of time but can not watch TV or even look at things that are too stimulating.
    Here are the details:
I was on Celexa 5mg for 3 years, weaned off in early February 2016. I was in a very mind protracted withdrawal for 8 months which was almost non existent (I had gone through severe Paxil withdrawal in 2010 so I know what it feels like, I also know that has probably made by CNS more sensitive). I had pretty severe situational stress for 3 months so I felt I needed a low dose antidepressant again.

    OCTOBER 1 (REINSTATED CELEXA AFTER 8 MONTHS OFF – ADVERSE REACTION)
    
I developed Akathesia as part of an adverse reaction after trying to reinstate the Celexa in early October of this year on the day of my 3rd dose. It was weird because after the first occurrence which was horrible (was up all night pacing, cortisol rushes, intense fear, burning arms and legs, no appetite, shooting pains, sensitivity to all surroundings). I stopped the drug right after the reaction. It went away completely for almost 5 days where I was totally back to normal then came back again (slightly less intense) then disappeared for another 3 days… Then continued every other day and up all night (sometimes 2 nights in a row). It went up and down like this for almost 3 weeks.

    NOV 1 (INTRODUCED CELEXA MICRO DOSE (1 WEEK)

    About 3 weeks in, I tried to reinstate a micro dose of Celexa .5MG for a few days due to suicidal ideation but seemed to jarr my physical reaction symptoms like the tremor, ataxia, cortisol rushes and muscle spasms. During this time, the symptoms (both physical reaction symptoms and akathisia) built up in frequency to an almost a regular state but much less intense. Eventually, the physical reaction symptoms from the adverse effect have mostly subsided, like the burning skin and muscle spasms, blurred vision. It’s hard to say at that point if the mental akathisia was lessening in severity at that point or staying the same. It was apparent through most of the day and I would get a couple of hours of mental peace from it here and there. Also must note that in the beginning when I was having these up and down bumps during the initial reaction, I would go totally back to normal mentally, now my “normal” an almost state of normal but not really. (Sorry, not sure if that makes sense).

    NOVEMBER 11 INTRODUCED DIAZEPAM

    After already starting to feel a little better from the physical symptoms, I couldn’t handle the mental subjective akathisia, it was just too much so I introduced 2.5mg of diazepam once at 8am and once at 4pm daily. I felt like even though it wouldn’t get rid of the feeling completely when I had these spikes (usually once or twice a day lasting anywhere from 2 hours to 5 hours), it did make them less intense and I was less worried about them coming back when I wasn’t having one. I was certainly helping me.

    This past week, I seemed to be also doing a lot better with the fear issue and all physical symptoms have seened to dissipate as well. I can’t tell if what was helping was the fact that I stopped taking the celexa completely or if the diazepam was helping (note that there were a couple days where I felt that I almost didn’t need my diazepam dose when it was time to take it but I took it anyway to stay on course. During each day, the feeling would go up and down (worse in the mornings usually) but really tapered off significantly after around 8pm.

    *Have been off the Celexa mico dose for around 4 days, when I started getting the infamous “brain zaps”. Very mild but apparent and this scared me a little because that may or may not mean I have a withdrawal coming.

    Issue at hand:
    
About 3 days ago, I had a very short “fit” where I felt extremely nervous, I was actually doing the dishes (I clean a lot to distract myself) when I felt like everything I was doing I needed to do faster to release this weird nervous energy – like I was on speed. My mind also felt very fast and rushed. Made me feel like I wanted to go outside and run down the block screaming. I think it happened around early afternoon so I wasn’t toward the end of my morning diazepam dose – it then passed after about 5 min. Over the course of the last 2 days, I would get this feeling for a few seconds sometimes after eating my first bit of food, then it would subside. Yesterday I had a pretty severe longer lasting one with a weird nervous feeling in my arms and legs, and my mind felt very fast and nervous as well (not like the mental fear I was having, just really fast but similar in the sense that I felt I could not stop it). I went outside and went for a very walk even running a little at time. The running almost didn’t seem to ease anything. After about 15 minutes I went back inside and it felt like it was starting to subside a little. I did notice I was talking to my partner very very fast. This feeling is BRAND NEW and I have not felt like this at all even during the worst part of the reaction.

    1. Even though I thought I was doing a lot better, could it be an evolved form of akathisia coming on perhaps from stopping the low dose medication and now I’m withdrawing from it?

    2. Could the diazepam be causing harm and adding this form of akathisia (I know you can not give medical advice but I need to know if that possibility exists and I will talk to my doctor about it). Or if from your experience, you’ve only seen benzos prolong the akathisia but not really change or make it worse.

    3. Possible connection – I have cut my diazepam down to 1/3 instead of 1/2 over the past 3 days to try and taper off it. Could the freak out be caused by that? Overall I have not been on it very long maybe just 8 days or so consistently.

    Basically, I know benzos are addicting and have tried to be conservative with my dosing but I need to know if they can make me worse or if coming down from them will worsen the condition and add an additional level of akathisia, only been on them 7 days and usually right before my next I don’t feel “tweaky”. I originally wanted to try propronol but I heard some people reported it make them depressed and I couldn’t risk that.

    Thanks for all your work and helping a countless amount of people.

    *Disclosing that any ideas or explanations provided by “Akathisia Info” are not to be taken as medical advice and any changes in medical regimen will be discussed with a physician beforehand.

    1. Hi Dee,

      I’m sorry you’ve been going through this. It certainly sounds like Akathisia, even with the mild differences from “classic” Akathisia. I believe the only way you will know how the benzo is affecting you is to try tapering off and see how you feel. I found relief with a little piece here and there,, but then sometimes would have rebound the next day. Everyone is different, every situation and body and brain are different.

      I’d say be very careful and conservative with experimenting, but it seems like you need to at least see how your body is without them. After all, they are highly addictive and you don’t want to have to go through trying to get off those and then restart Akathisia once you’ve healed from it.

      That’s my thoughts on it anyway. And yes, thank you for acknowledging I’m not a doctor, nor able to give medical advice on any level.

      I can say the coherency with which you write is a good sign to me that you’re doing fairly well with this. When it’s at mach 10 there’s no coherency or organization in speech and writing. I also think the fact that you are having relief from symptoms here and there are able to sit still and are able to sleep at all are all very good signs as well.

      Do all you can to keep your environment peaceful and uplifting and do all you can to allow your body to do the great healing work it’s capable of doing : )

      I wish you all the best in your speedy recovery,
      Angie

    2. Thanks Angie, I work in advertising and on medical products so I can’t help adding disclaimers 🙂

      I’ve been off the Diazepam for about 4 days now and I’m not sure how much it was even helping me except for keeping a little more calm if I was panicking about my condition. I haven’t any more of those “speed/need to run” feelings since I wrote the above. Most of my physical symptoms aside for some adrenaline discomfort in the morning have all subsided (even the light sensitivity has gone down).

      What’s still messed up is my mood, I have fears and discomforts about things and going certain places like the grocery store and soetimes become disoriented while I’m there. I can stop by office and visit my staff only for short periods of time but the idea of looking at or wrapping my head around any project seems impossible and frightening (as I mentioned, I’m the creative field). The emotions are not nearly as strong as they were in the beginning but are nagging and persistent vs really high (normal) and really low (bad akathisia) as they used to be. At times, I feel almost entirely like myself but a slightly “crazy” version of myself and worry that the feeling, although much more mild than in the beginning, will never lift fully since it seems to have stabilized like this vs going up and down. My mood fluctuates throughout the day (from very depressed to scared to feeling like I might have brain damage). Have you heard of this or perhaps felt this way toward the end of your experience?

    3. Dee,

      Once the crushing horror lifted for me, I spent many months in the state you’re describing. It sounds exactly like the final healing portion of Akathisia.
      Do not worry about permanent brain damage,, it’s just a matter of getting the pendulum to stop swinging, so to speak. You will heal. : )

      Know you are going to be fine, because you will. It will just take time for total resolution.

      Sincerely,
      Angie

    4. Thanks again, that made me feel so much better. I have had some physical symptoms come back in the past couple days (I think because I started my period – can you confirm if that can aggravate things?). I feel like every time I get physical symptoms, the next day or several hours later, the mental ones come on. To avoid the mental stuff, does prescribed medication like Propranol or Diazepam (or even Vitamin C, benadryl or other supplements) stop the relapse in it’s track so I can try to the avoid the mental reactions the next day? I feel like if I can catch the physical ones right as they start, I can put a hault on the process going any further and continue my healing. I just don’t know what most people have had success with as an “as needed” approach (like once a week or so) on the start of a relapse.

      Once again, I know this is not medical advice and any changes will be discussed with my physician. Just looking to find out about other people’s experiences.

      Thanks again for your help, you have no idea how invaluable it is.

    5. Dee,

      Yes, generally that time of the month does aggravate symptoms. If that’s the case, I’d def consider trying the wild yam cream, as directed on the jar.
      Vitamin C can make you anxious if you take a lot.. it’s most suitable (from what I know) if you catch it RIGHT AWAY and take mega doses. I’ve read that
      can thwart drug reactions. Propranolol has helped a lot of people, not sure about how to take it though for best results.

      Not sure I’d recommend a benzo at all really. Maybe in a desperate case where you just have to have relief in the moment.

      I’m glad to help.

      All my best and keep us posted with your progress! 😀
      Angie

    6. Hi Dee and Angie,
      Im dealing with akathisia for 11 months now. Dee, I had the feeling of being on speed too for many months, now it has lessened the intensity. For months, I pace and run all day long. I tried to detox myself so I quit all medication (zoloft that caused thr akathisia and Klonopin) withouth a medical guidance. After 5 weeks, my anxiety went to the roof, my parents saw me in a really bad condition and they inmediatly took me to the doctor.
      He said I had anxiety and gave me Lexapro in a very low dose and Klonopin 0.25 mg once a day. That happened 6 weeks ago. Since then Im improving very very slowly. I sleep 6-7 hours a day and can sit for longer periods. I dont need to pace a lot now but I still have light tremors and Im afraid of going to restaurantes or stores etc. Before the akathisia, a year ago, I loved to go out, worked in two places and had a normal life. Angie, do you think I will heal although Im still taking medication? Did you have tremors and weird sensations in the head( like tension or heaviness? I pray every day because i have had these symptons for many months and I hope they will go away. Kind Regards for you Angie. Dee , I understand you and hope you will heal soon.
      *Sorry for the mistakes. English isnt my first language.

    7. Hi Mimi,

      I’m sorry for what you’ve been through. I’m not a doctor, so I really can’t say, though I don’t even think doctors really know how it will go for you.
      I’ve seen a lot of people try to stay on certain meds and heal and many tend to have to go off the meds before getting the body/brain back into balance.
      I’m certainly not telling you to stop the med, if it’s giving you relief it’s definitely a very personal decision as to how to move forward.

      The symptoms you’re talking about can all be related to detox or Akathisia for sure.

      Keep us posted with your progress, and thank you for sharing your experience.

      All my best,
      Angie

  14. Hello Angie and everybody on this blog.

    Would just like to say a big heartfelt thanks to Angie for providing this blog and to share my own Akathisia journey so far.

    Having stopped taking Mirtazapine approx 6 months ago (rapid 2 week taper – not recommended), I developed Akathisia 5 weeks later (constant pacing, racing heart, insomnia, inner restlessness and anxiety, severe claustrophobia, panic attacks and utter despair that it would never end). Although I had suffered from anxiety and low mood, I was acutely aware that what I was experiencing had nothing to do with my previous symptoms. When I started doing some research on the net, I found Angie’s blog and realised that I probably had Akathisia. I was able finally to recognise this by others sharing their symptoms and experiences which I could identify with.

    I found that many of the tips on this blog were so helpful, particularly attention to diet, walking in the countryside, being out in the sunshine (not always possible in England!), plus avoiding anything that overstimulates the cns.

    I approached 3 different doctors at my local surgery, none of whom had heard of Akathisia. I did try Propranolol, but this gave me severe heartburn and I had to stop taking it. For a while, the symptoms seemed to be getting better and I was hopeful that it was on its way out. But approx 5 weeks ago, the physical symptoms in my legs became much worse and the inner agitation and need to pace started to increase.

    In desperation 3 weeks ago, I wrote to a neurologist who specialises in movement disorders and he replied the same day suggesting I go to my GP and get a referral to the movement disorders centre. This provided me with the confidence to approach my GP (printed email in hand) and ask for a referral.

    Today I met with my neurologist and for the first time I felt understood and supported and was indeed diagnosed with drug induced Akathisia. He has devised a treatment plan that will include starting with low dose Clonidine (other treatment options are available if this isn’t effective), plus counselling and the support of a neuropsychiatrist.

    I am hoping that this approach will work and I will post again with an update.

    Take care and stay hopeful.

    1. Judi,

      Thank you so much for sharing your story. I’m thrilled to hear you’ve found a medical professional who actually acknowledges and understands akathisia! It sounds like you are
      on a very good track toward healing with the help of this person. We would love to get updates from you as you move along on this healing journey. With good support and a solid plan for recovery it should be a short journey and be resolved soon!

      Keep us posted.

      All my best,
      Angie

  15. Thank you for your words. I am having my second bout of Akathisia. It is not always started by psychiatric medication. I have had Akathisia twice only the first time, I did not know it was drug induced. Both times I got Akathesia were not from psychiatric medications. It was from sudafed. I found I am very sensitive to drugs. Even benedryl, and tylenol cause me severe restlesness. The second time it was induced by Prevacid which is a proton pump inhibitor. Both times I went to the psychiatrist because I didn’t know any better, and the drugs they gave me just made it worse. Now after much research, I know this is what I have. The irony is that I have to go on psychiatric medictions to get better, otherwise I would never sleep. I just wanted others to know that if you are very sensitive to medications, then you can get this from drugs that would never suspect to get it from. It is normally listed as a rare 1% of people who get this reaction from drugs, but that 1% is me unfortunately.

  16. Thank you Angie! Your words mean a lot to me! I believe I will heal, God is going to help me, I pray for healing every day! Blessings!

  17. Hello Angie and everybody in this blog:
    I would like to know how the process of the akathisia healing is. I have it for 9 months and I notice that it is very very slowly improving. Now I can sit longer, but the mental torment that something could happen is still there.
    Is the mental torment going to go away in time or it is anxiety? I still have some tremors during the day, I dont know if it is because akathisia or benzo withdrawal. ( I stopped Klonopin 15 days ago cause I hit tolerance and didnt want to increase the dose) Im not taking anything now only taking care of my food and having healthy habits. Another sympton is the feeling of being in constant hurry. Is a sympton of akathisia too? Thank you Angie for having this blog, it is so helpful for people dealing with akathisia. God bless you!

    1. Mimi,

      I’m sorry for what you’re going through. It’s different for everyone. It depends if you’re still taking meds, depends on the state of your body/brain before it happened and really depends on what you’re currently doing to help your body heal. Everything you’re mentioning sounds like Akathisia, that frantic being in a hurry feeling is hallmark to Akathisia. Tremors, weird sensations and neuropathy also very much part of it.

      You WILL heal, read all you can on this site about what works for others and things I’ve suggested. Get some yam cream, that was a big help for many who have been through Akathisia. Take is as suggested on the label. Do all the natural dietary and daily habit things you can to help your body get soothed and balanced.

      Keep us posted and have faith in your body’s ability to get back to balance!
      All my best,
      Angie

  18. I just had my appt checkup with my Movement Disorders Doctor. She told me akathisia shouldn’t interfere with my sleep which doesn’t make much sense to me. I take Zoliperderm (Ambien) and Valium at 3am to make sure I sleep through the morning. I also take benadryl then. This strong combination usually allows me to sleep till 7:30. Amazingly, I don’t feel any drug effects.
    Sometimes I have to take Valium and benadryl at night to get to sleep.
    I don’t take anything during the day and just put up with the agitation best I can.
    Just curious to now if anyone sleeps through the night without medication.
    I’ve had this for 2 years now.

    Thanks for any feedback.

    1. Hi Marie,

      I have been suffering from Akathisia for approx 3 months now following an abrupt taper from Mirtazapine. I am currently taking no meds for sleep, and although I manage to get to sleep okay, I find I wake very early (sometimes 3 or 4am) with a pounding heart and a feeling of panic, then I can feel the Akathisia kick in and getting back to sleep is usually impossible.

      I have an appointment next week to see a neurologist who specializes in movement disorders so hoping to get some support and information as my GP has never heard of this.

      I’m so sorry to hear you have had this for 2 years now – it’s so hard to live with and simply just getting through the day in a challenge.

      Take care.

  19. Hello Angie,

    Thank you so much for this blog. It’s giving the power to keep on going.

    Will you kindly spare several minutes to tell me :

    How gradual or windows/waves was your recovery?

    And how are you sleeping now, many years after the event?

    1. Adrian,

      You’re very welcome : )

      The up and back recovery is classic to Akathisia. But everyone’s time frame is different. For some it happens pretty quickly,
      for others it takes a long time. It just depends on what state you’ve started in and how you’re treating your body in order
      to recover.

      My sleep has returned almost to normal. Hard to say why I still have bouts of insomnia. Hormones and stress and lots of other
      things play into it. But for most, the severe insomnia that comes with Akathisia goes away within months or a year or so. Again, depends.

      I wish I could give concrete answers but we’re all so different. Even day to day your own body is different. So I’d say just
      do the best things you know to do to balance your body and take care of your health overall. This will speed up the process.

      All my best,
      Angie

  20. At the risk of commenting too much, there is one symptom you are missing on the list, Angie. PAIN. Pain in the middle of your chest going down into your gut. A feeling like it hurts to breathe. So painful you feel the area and it actually feels like it’s burning inside. A psychic pain so intense that it reduced me to sobbing to my husband an telling him I would do anything–ANYTHING–to make it stop. Please, please make it stop. I would beg him, and my poor, sweet husband would just hold me and try and comfort me the best he could.

    Incidentally, I became an atheist over the last few years. An atheist who doubted the existence of any being who supposedly loved me, but could allow me to suffer the way I had been suffering. I thought if I suffered like this, either God didn’t stop it because he didn’t care, or he couldn’t. In either case, I didn’t want any part of him. Thank you again for this. I can’t tell you what finding this blog has meant to me. Both of my daughters are bipolar and both are on Latuda. I am talking to them and making sure they are educated so that if the medicine turns on them like it did me, they won’t go through what I did for so long.

    Okay, I think I’ll stop monopolizing now and get to work. I have a life to take back.

    Peace out

    1. JulieAnn,

      Yes, you’re right. I don’t speak much to the pain and zaps and such. This is because of all the inner terror and agitation, it’s minor. For most anyway.
      I remember feeling like my entire torso was filled with hard concrete. Odd feelings. Definitely pain. But they just paled in comparison to the agitation,
      anxiety and lack of sleep. Definitely everyone has a bit of a different experience, but pain and neuropathy are certainly a big part of this whole process.

      I found an author that has a very different bent on the God concept, well, two actually. They are a bit different than mainstream thought, but align more
      with the philosophy that resonates for me. And may be of comfort to anyone going through suffering. I’ll post the names here, but am in no way affiliated with
      these folks. I just think what they have to say may soothe the soul in times of need.

      The Top 10 Things Dead People Want to Tell You – Mike Dooley
      The Book of Mastery – Paul Selig

      Please don’t blame me if you don’t agree with their philosophy or don’t like them. I’m just throwing it out there for anyone
      who may be interested 🙂

      Keep us posted JulieAnn.

      All my best,
      Angie

  21. “You just need to dig deep and tap into your patience and faith in your own body and brain’s ability and desire to get back to homeostasis.”
    I wonder if any medication except the necessary sleep meds keep one’s brain from reaching homeostasis? I am taking Benadryl and diazepam to sleep but Dr. has offered Propranolol during day to help with agitation.
    Does anyone out there have an opinion on taking too many medications instead of just waiting for the brain to heal?

    1. RMP,

      From what I’ve seen the less taken the faster the recovery. Some don’t recover until they’ve stopped taking all meds.
      But it really depends on what state you’re in, if something is helping it might be good to continue and titrate slowly
      one at a time.

      I’ve heard only good about Propranolol. I wish I would have tried it when I was suffering but was too scared to try it.
      But again, in all the years since, I’ve heard only good.

      Benadryl and tranqs can have a rebound effect, so you really just have to monitor exactly how they’re affecting you, day of
      and day after and figure out what your body wants.

      Keep us posted.

      All my best,
      Angie

  22. I have been dealing with akathisia for 2 years now. The worst is the lack of sleep even with sleep medication like Ambien (Zolpiderm), Valium and benadryl. I was relying mostly on Zolpiderm but that has quit working so now waiting for Dr. response for new sleep meds.
    If I try to stay active, I get too agitated so just spend most days working then on couch watching TV trying to calm down. The only thing keeping my alive is my cats that depend on me but don’t and won’t spend the rest of my life like this. I will end it if this doesn’t end. This is not living, it’s just suffering existence.
    My diet is fresh juices (not canned) with mega minerals and electrolytes, fresh vegetables, etc. I don’t have the energy for getting and maintaining outside support so I just needed to get this out there since I’m having a bad day and had to come home from work.

    1. Hi rmp, I’ve also had akathisia two years now. Just barely scraping by. It’s really good you can still work though I know it’s extremely hard. How’re you doing now?

  23. Has anyone had to take barium or an antibiotic while still having akathisia because of a bladder infection?

  24. Hi.
    I have to have surgery in a couple of weeks and i’m still not in a great place health wise since coming off prozac. What should i be asking for from the anesthetist? I have considered canceling the op but i’m in a lot of pain.
    thanks

  25. Thank you for this site, It has been really helpful. Please, help me, somebody tell me what kind of symptoms have after eating bread, for example, or sugar. I have internal tremors because akathisia but something that is affecting me (I’m afraid) is that after eating bread or cheese I feel something like anxiety (sweat, heat, throat inflammation, more tremor). It is going to go away?

  26. I know you wont be responding to readers personally any more but I really need to hear from someone who’s been through this and come out the other side. I was put on Risperidone, an antiphychotic, when I was about 11 years old and was on it for at least 7 years, I came off it when I started experiencing extreme Akathisia in November and shortly after coming off the drug in December it seemed to calm down a bit. I’m 18 now and the akathisia seems to be coming back now in the form of restless legs and a slight urge to get up and pace but not as bad as before. Iv’e also been on Fluoxetine for the 7 years and I’m still on it but I’m tapering it off now in order for my brain to stabilise. I tell myself this will go away but I’m terrified that I wont be able to live a normal life again. My dreams and aspirations have gone out the window for now. I’m not even sure there’s a reason for me to live if this doesn’t subside.

    1. Neirin,

      I’m so sorry to hear what you’ve been going through. There’s no reason to believe it won’t subside. It will. I see it over and over again.
      You just need to dig deep and tap into your patience and faith in your own body and brain’s ability and desire to get back to homeostasis.
      It will. The more positively you can keep your mind focused, the faster your healing will happen. I’ve seen this time and again as well.
      Soothe your body and your mind as often and best you can. This is the healing salve you need.

      Please read my post on healing.

      It’s a very good thing you aren’t having symptoms nearly as bad as last time. That’s a great sign that your healing will be quicker.
      Please keep us posted with how you’re doing and let me put a call out to readers, if anyone feels an urge to connect with Neirin to lend
      some support that would be great!

      My thoughts and prayers are with you,
      Angie

  27. just found my husband has this also dementiia by chance saw the word akathisia on script so what does a wife do of course google. Amazing all fell into place now I know my husbands agitation level drs had him on endeb 25 years so much for medication reviews and dementia awareness absolutly mind blowing thank thank thank you for this knowlege you have helped a full time carer and my dear husband. GOD BLESS YOU

    1. You’re very welcome. Dig around on the other posts and replies to get lots of good info and advice.
      Let us know how he’s doing.

      All my best,
      Angie

  28. Angie,
    Thanks so much for your reply. You are so brave, kind and sweet to have devoted your life to this cause. B/C this is really a painful condition and you are so right that it is kept hush hush and so many people suffer with it. We went on a walk at the park a while back and this man was sitting on a bench moving is legs up and down so fast. I felt so bad for this man — if we open our eyes it is all around us.

    It is so strange but my husband has this love relationship with Zoloft b/c he took it for over 20 years and pines for it wishing he had never taken the Seroquel or Lexapro as he is convinced that is what caused the akathisia, not his beloved Zoloft. Yet he really needed about 125 mg to 150 mg of Zoloft for his OCD syx and I could tell his OCD was acting up since I am married to him and tried to get him to up the dose. Yet he had trouble taking the needed dose for his OCD had taken himself down to 50 mg b/c he experienced increased tinnitus and anxiety when he went above 50 mg. The low dose is what landed him in a major depression. I keep telling him it was a blessing in disguise that the Seroquel or Lexapro caused the akathisia b/c IMO he was headed there anyway w/ the Z, and the anx symptoms going over 50 to 75mg were the beginning of akathisia. But him having OCD he cannot stop wishing he had ever taken Seroquel and switched to Lexapro. He is so convinced b/c he had taken Z for over 20 years it was his friend. At any rate I think it so synchronistic that he developed the akathisa via either the switch to Lexapro or the Seroquel so he was forced to wean off Z as that is where IMO he was headed w/o the other medications even being prescribed.

    Am I posting to the right place or should I be looking elsewhere in your blog to post? I have read some of the other posts below and what is and what is really disturbing to me is the post from Liz below is that 2 years after taking Cymbalta she still suffers from akathisia.. Liz does not say if she weaned down slowly or went off cold turkey. I thought once we weaned off the akathisia would go away. Or at least there was a better chance of getting rid of it by weaning rather than cold turkey. Now I am afraid that it is only the syx of coming off the med that are deterred by the weaning and not the akathisia.

    II know you are not a doctor, but I wonder where would I find other people’s weaning experience. I think we have been pretty conservative on the weaning process. We only get to see the P Doc once per month and finally my husband got through to him that it wasn’t just anxiety he felt and to his credit the P doc diagnosed my husband with akathisia and prescribed proparanol for the syx. It helps some but not that much. But all he tells us about weaning is not to slow b/c of the akathisia and to fast. Then the latest email from the P Doc was it was better to wean slowly.

    But when is enough weaning to go off the meds. The PDoc thought my Seroquel weaning experience was “brilliant”. Well, who am I to come up with one, but I cannot stand to see my husband suffer and at least the PDoc has given me the blessing on my plan which is 25% every 3 days. We are now down to 3.754234 mg which comes out to be about 60% of a quarter of a 25 mg tablet. I am here just winging it. By our next appointment we will be at 1.187863 mg which is 19% of a quarter of a 25 mg tablet. It seems there has to be a point where I can tell my husband to just stop the medication. Wondering if anyone else had any experience with Seroquel weaning?

    To me the Zoloft weaning is more tricky b/c he took it so many years whereas he only took Seroquel for about 3 months before I started the weaning process. BTW the PDoc wanted him to keep on the Seroquel b/c the syx seemed to be coming more from the Zoloft since the burning skin hits about 6 hours after the Zoloft dose. But I said no way are you staying on Seroquel. Anyway we are now down to 12.5 mg of Zoloft.

    Do you know if there is a special kind of doctor like a psych neurologist that can give a clearer weaning schedule?

    Thanks again for you wonderful site. I have such back pain I find it hard to stay on the computer long, but I intend to explore more and thanks for the suggestion of the Oct 2014 newsletter.

    Paulette (David’s wife)

    1. Paulette,

      It just astounds me how the doctors are handling all the issues related to meds. They want so bad to avoid being liable that they are just misleading people left and right. It’s become a circus of horrible errors. Eventually people are going to figure all this out and it’s going to be one hell of a ride from there!

      Any GOOD psychiatrist should know how to titrate off meds. That’s what they are, psych med specialists. So, I think to just keep looking till you find someone who makes sense and feels right to your gut would be a good bet. I don’t know proper titration schedules, but it sounds like maybe you’re going a bit fast. Not sure? Again, I’d really try to find someone more competent to help him.

      OCD and anxiety can be overcome WITHOUT meds, but he needs to get all stabilized before tackling anything really. A behavioral therapist or Cog-B therapist would probably be your best bet for that. But again, just work to getting him clean and clear of symptoms first.

      Some people do take up to 2 years to heal, it all seems to depend on their own brain chemistry, their outlook, their daily habits, what one is eating, drinking, vitamins and supplements being used, etc. and so on. Two years tends to be the longer limit for those who are having a particularly hard time. Many heal sooner. In all my years of studying this and hearing people’s stories, I have only heard of a few cases that went longer than that. I really wouldn’t worry about that.

      Stay in the moment, take it day to day and EXPECT that he will begin to heal rapidly. HE needs to believe it too! Faith and optimism have A LOT to do with how quickly we can heal, from anything. It’s a proven fact.

      Keep us posted with his progress. And be sure to write if you simply need emotional support.

      All my best,
      Angie

  29. Thank you so much for this wonderful site. I was looking at the list of medications that cause akathisia under AKATHISIA INFO and some are listed with **, namely the tricyclics. I searched the list and the whole article and could not find what ** meant. The reason I ask this question is my husband is currently weaning off of both Seroquel and Zoloft b/c of akathisia. We had been researching on the internet and came across a list of medications causing akathisia put together by Dr. Feingold who is a psychiatrist who is British and the tryicyclic group of medications was not on his list. Could you please tell me what the ** on the medication list means? He is so depressed he needs something.

    We are not sure which medication caused the akathisia but he was prescribed the Seroquel to try to knock out a major depression. We were never told that Seroquel would cause akathisia. We are so upset with ourselves that we ever agreed to take an antipsychotic drug for depression. My husband had been on Zoloft for well over 20 years with no side effects but had gone down on it because of tinnitus. He tried switching to Lexapro and then went back to a Zoloft. He is long weaned off the Lexapro. The akathisa seemed to start once he tried Lexapro but who knows what really caused it,as he had racing up his arms when he first started the Seroquel (which he took before the Lexapro) and continues to cause it to this day. Zoloft seems to be the akathisa culprit as the syx hit about 4 to 6 hours after taking his dose of Zoloft which is the time frame for it being fully activated in his plasma. Propranol helps some with the syx. But I always suspected it was the Seroquel that started this whole thing rolling because he noticed the racing in his arms then, but didn’t think much of it at first.

    We are lucky that we caught the akathisia early as at first my husband was shaking his legs and felt like he wanted to crawl out of his skin, with restlessness and tension, but after weaning down on both the Seroquel and Zoloft his syx are about 80 % better over all. But he continues with a sensation/burning/racing in his arms right around the area where the arm bends, but occasionally it extends midway up his arms along with an aching pain in one of his triceps.

    One other article I researched on the web said that because there is no known cure. Treatments aim to reduce pain and discomfort by relaxing the muscles. Treatment included the withdrawal of the causative agent, warm baths, heat and ice, stretching massage and low doses of propranolol and few other medications listed. He doesn’t seem to have some of the awful syx I read about on these posts of people pacing and not being able to sit still etc., although he did have a milder form of those syx before the propranolol and weaning off the meds. So sorry for the long winded question, but I am wondering if any of any of you out there have the milder symptoms I am describing? As sometimes I wonder if he has something other than akathisia when I read about what others are going through.
    Thank you
    Paulette (David’s wife)

    1. Hi Paulette,

      The symptoms of akathisia do certainly run from mild to severe, but all have very similar overtones. From what you’re describing it certainly sounds like akathisia..but let me say again, I’m not a doctor in any way. I have though talked to LOTS of people suffering akathisia, so it’s at a point now where I can pretty easily see when someone has the basic hallmark symptoms.

      Every med you mentioned (aside from Propranolol of course) has caused akathisia in people I have talked with. As you know by now, akathisia is kept hush hush by many agencies, so you won’t likely find any complete info out there, so I’m not surprised the doctor’s list was missing some offending meds. Also, things down to certain fish oils, essential oils, etc. can also cause it, but it takes great presence of mind and tons of research to figure these ties out since there’s no real good info out there to forewarn or refer to once one is suffering such a “side effect”.

      That list of offending meds is originally from a medical site, I should have referred to it at the time, but didn’t, so now I don’t know where to go to find it, if it’s even still available online. It may have been in a research document as early on I scoured medical research for as much info as I could find to post. SO, I don’t know what those were referring to.

      Anyway, through the years I have added medications to the list, after learning they too offend, but as far as the original bulk of data, that’s from elsewhere.

      I’m very glad to hear David has a milder version of akathisia and also that he has a loving wife to help him through it. Many people struggle through this alone, as others just simply don’t get it and don’t believe what the sufferer is really going through. You being so supportive will absolutely make his healing go quicker. : )

      Read the October 2014 for many ideas on how to get the brain back in balance. Whoever said you can’t heal from this is flat out wrong. I’ve seen nothing but healing over the years. It may take way too long for some, but it always does happen. The more support and the more dedicated to soothing one’s brain, the quicker it seems to go.

      I wish you both all the best and please feel free to post here as much as needed to vent, ask questions or simply ask for emotional support.
      Angie

  30. Thank you for this site. It is so reassuring and encouraging. I developed akathisia shortly after stopping Cymbalta almost 2 yrs ago. Many days I pace all day long. I have had some windows over the last two years, some lasting several days. I’m not on any other meds, I take magnesium and melatonin. Occasionally I take Vistaril for sleep. Right now I’m in a severe wave. It is as bad as it has ever been. I’m feeling so scared and hopeless because this has lasted so long for me. Can I still recover after two years? Mostly I see people recovering in a few months. This is the most terrifying experience I can imagine.

    1. Hello Liz. So sorry about your awful experience. You will heal, don’t stop believing, your body is designed to heal itself.

      This is all about neurotransmitters, receptors and its interactions in the brain. Try not to take melatonin, because it interacts with the serotonin, maybe that is not good in your situation. Pay attention to your food, make a food journal and look for a conection with the intensity of your symptoms. Look for a conection with other triggers. Avoid those things. Maybe something you keep doing is delaying the process, try to figure it out.

      God bless you. Hugs.

    2. Thank you so very much for the response, Elle. I really do so much appreciate
      your reassurance. Thank you for your input about melatonin. I actually have
      cut way back on the dosage. As soon as this bad wave passes, I will work on
      cutting it back again, and hopefully phasing it out. It could possibly be causing
      problems. Since this withdrawal, I’m hypersensitive to many things, so I think
      the less the better for me. Thank you so much for your thoughts.

  31. I originally got akathisia from taking abilify which was added to wellbutrin after no results. I started getting better very slowly about 12 months after discontinuing the ability, but the sleep depravation, stomach issues. and brain mush continued through 18mths and more. I kept telling anyone who would listen that my switch was off…I didn’t have trouble sleeping, I could not sleep! Finally an acupuncturist I saw listened and just said hypothalamus. I took a supplement called hypothalamus PMG the next morning and that evening I yawned (for the first time in 20 months), turned off the light and went to sleep unaided. That was a month ago tomorrow and I have been sleeping on my own since…5 hours the first night and now up to 8+ hours some nights. What a relief…this switch is back on and all symptoms have dissipated. Just wanted to share since the stuff I read on this blog gave me the glimmer of hope that I otherwise would not have had.

    1. Whoa Dean! This is amazing news! The inability to sleep is one of the worst hallmarks of akathisia. Finding something that really works to help you sleep will in the long run help the healing happen so much more quickly. Well, I’m just very excited for you and so very grateful you’ve shared this with the board!

      Thank you,
      Angie

    2. I am so tired of the day to day agitation and having to take drugs to sleep. I’m willing to try anything. Dr. put me on Elavil and Temazepam to sleep but didn’t help day agitation so went back on chlonazepam which caused the akathisia to begin with. It’s not helping the day time agitation. I might just take the supplement. I am going on one year with akathisia and really getting fed up.
      Did the acupuncturist give you any treatments also?

    3. The acupuncturist gave me needle treatments a few times with no results…the hypothalamus supplement worked immediately and I am still sleeping 2-1/2 months later…energy coming back much slower than I expected, but getting better slowly.

  32. I just read your post and at least have more hope now. I was pretty frustrated about acquiring this movement disorder and Dr.s not helping. I would love to hear from people who have gotten total remission of akathisia.

  33. Angie

    Just wanted to thank you for everything. I am going to save this post and read it when I am having a bad time. Your blog has been a blessing to me.

    God bless and keep you

    Inez

    1. I would love to hear how and if everyone posted healed
      I accidentally cold turkeyed 3 day a week usage of Ativan
      What I didn’t realize was my initial akathisia was from a steroid. Things have gone from bad to worse
      I have been micro tapering a benzo now (after cold turkey the fast taper )
      Got down to 1mg and crashed.
      I am on neurontin 200mg three times daily
      And 15 mg remeron
      This is from someone who never took a pill before.
      All because the Akathesia was misdiagnosed in the beginning. Had no clue what it was and my whole body feels as though it is in literal shock
      Anyone get SEVERE chest pain like a feeling of shock? That’s what I had plus inner restlessness no sleeping literally Moaning w pain.
      Neurontin helped me. But it’s a chemical. I am using it to taper off the last 1mg of Valium.
      Anyone here on a benzo or z drug that’s why your sx aren’t getting better.
      These drugs are poison. Check out benzo buddies
      So.. Angie can u tell me the longest someone has had it for??? I had to close my beloved business. This is just horrid

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