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!

48 thoughts on “Update from Admin

  1. 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.

  2. 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…

  3. 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).

  4. 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

  5. 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

  6. 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.

  7. 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!

  8. 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

  9. 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.

  10. 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

  11. 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

  12. “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

  13. 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.

  14. 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

  15. 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?

  16. 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

  17. 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

  18. 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

  19. 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

  20. 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.

  21. 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.

  22. 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.

  23. 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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