Discussions By Condition: I cannot get a diagnosis.

It's AKATHISIA when will it go?

Posted In: I cannot get a diagnosis. 105 Replies
  • Posted By: Searching
  • February 21, 2008
  • 04:55 AM

I posted my symptoms a few days ago (can't rest my body) and as a result I and my doctor are sure that I am suffering from Akithisia. I can't sit for long, always needing to get up and move around. As soon as I'm up I feel exhausted and need to sit down. At the worst of it my stomach goes into a spasm and my legs begin to cramp and at the same time I can't stop drinking water - about 2 to 3 litlers in about 2hours - and my skin felt like it was burning over my body. THe affect continues on and on and at times it reduces me to tears. I am exhausted. It starts at about 4.a.m. and goes on to late after noon. It seems to ease a litlle around bed time. This condition I believe was brought on by a trycyclic antideppressants trofinal after the third aday of taking it in May 2007. When it first occured it was so distressing, the Doctors' thought I was manic deppressent so they pescribed heavy doses of anitphsycotic drugs - lithium, vlapro, serequol and also valium and xanax. (not all at the same time, tried one then the other sort of trial.) Nothing helped just made to feel like a zombie, and guess what antiphycotic drugs cause Akathisia. I've stopped most of the mood stablizers but symptoms persist. Perhaps not as severe but are still very distressing. I'm having trouble getting rid of the seroquel 25 mgs at night. It has a sedative affect but I suspect it is a double edge sword. It may be prolonging the Akithisia because it is an antiphycotic. Can Anybody tell me have you experience prolonged Akathisia. Will it go away and what did you take or do to make it go away. P.S I am not Manic Deppressent but have suffered from what I believe is mild to moderate deppresion on a few occasions over my life - 49 years old.

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  • Did your symptoms every go away?
    Anonymous 42789 Replies Flag this Response
  • This happens to me after taking metoclopramide. The symptoms last like a day and a half... It's horrible.Did you successful treat your symptoms?
    Anonymous 42789 Replies Flag this Response
  • Hi Mark, No the symptoms have not gone away but they have changed to a lessor degree. I found that stress and laying down in a prone position makes it worse. I have now discovered, after a great deal of self research and demading doctors do tests that I believd need to be done, that I am suffering Neuropathic pain. This is caused by various things but in my case most likely damage to my perrifial or central neverous system through injury to my spinal cord. Some tests are still pending. Medication does not help. Medication can also cause these symptoms, they are identical to Akathisia. But now I am geting pins and needles in my arms and a burning sensation over my body mouth and tongue. It is more the symptoms of neuropathic pain.
    Searching 14 Replies Flag this Response
  • Seems like yours is a different disorder. Mine is caused my some medicine and I swear that if I have it longer than a few days I would go totally insane. I have had about 3 episodes in my life and I don't wish them to my worse enemy.Have you tried Valium/Xanax and Beta Blockers? Since your symptoms comes with pain, why don't you ask for some pain medication?Post back in this thread whenever you get your results.Best of luck
    Anonymous 42789 Replies Flag this Response
  • Hi Mark, Yes I;'ve tried valium 10mgs does not do anything - will not even put me to sleep. Xanax is a bit better but I'm trying to stay away from them because they are highly addictive and I get side effects. They have a shorter life than other drugs in the same family. Pain killers will reduce the normal pain only just a little but the neuropathic pain will not go away. WhatI believe is happening, from information I have received and read, is that the neurotransmitters or nervous system in my body, for some reason, are miss fireing into wrong pathways. What I should be feeling as pain I am feeling as heat, electricity and pins and needles. I've tried beta blockers early this year but only stayed on them for a few weks. they seemed to help but there is a trade off. I suffer from depression and beta blockers are know to worsen depression over time. I can;t seem to win at the moment but I will beat it. Then I hope to help aothers. Nobody sems to know much about the condition or how to teat it effectively without putting you to sleep. Im on a drug could gababentin (spelling?) at first they were working a little so I uped the dose but know I feel the neuropathic pain in a sharper feeling. Hard to explain. I have no doubt that the problems sem from my spinal cord. I have had injuries to my back ove the years and a recent MRI confirms I have wo slight cor compretions and a few disk protrusions. I will not know any further until I see the neuro on the 02/09/08 and the pain specilist on 04/08/08. And yes I know what you mean about it being unbearable. It has taken a lot of stregth for me to cope with this for over 15 months.
    Searching 14 Replies Flag this Response
  • Ask your doctor for a blood test for the varicella zoster virus antibody test. It sounds like it could be one of many herpes viruses. Seems like they are thinking shingles since they gave you gabapentin.
    Monsterlove 2921 Replies Flag this Response
  • Do you know your serum B12 levels by chance? B12 deficiency can cause irreversible neurological problems and is almost always dismissed by doctors. DOM
    acuann 3080 Replies Flag this Response
  • To follow up on the B12 question, have you been tested for achlorhydria, or helicobacter pylori (stomach ulcer conditions)? You may have a condition called small bowel intestinal bacterial overgrowth; which you can learn about through google. If you have this, you may have a production of methane gas by the bacteria, which can make you very sick--it is a poison. I have some similar symptoms to yours, in that if I lie on my back I have "rushes" of what feels like hormones or something (read as, I get worse); feel like my nerves are encased in an electric web; it takes til evening to begin to feel able to sit up and do anything; I have to drink at least 3 liters of water a day to keep up my volume (but I can do it throughout the day). I eat very carefully, mostly protein and limit the carbohydrates because I feel worse when I eat much of them. Have you noticed any difference in your symptoms based on what you eat?If you think small bowel intestinal bacterial overgrowth fits, consider enteric coated peppermint oil capsules; and replacement of B12 with methyl B-12 -- check out the B12 blog.This may be way off-base for you, but who knows.
    marionstar 228 Replies Flag this Response
  • Dear all, Thank you for all your advise and replies. I have had a number of blood tests to rule out possible causes such as toxins, lead poisoning, B12, Lyme Desease, electrolites, and othrs some of which I have not got reply yet. I did ask my doctor to do a Zoster Herpies virous test (shingles) but he was convinced that I did not have shingles. I have never had a rash or soares that accompany shingles but does that mean I haven't got it.? Is there any obvious pysical signs that need to be present?. Al these tests are diffeential diagnoses for the casue of Neuropathic pain. I have recently had an MRI on my neckand back - located 2 slight spinal cord compressions and a number of disc protrusions. Unbieliveably, when I was having the MRI done, at the locations where the spinal cord has minor compressions, I felt electric shocks go through both arms. I told this to the MRI driver but he dismissed it and stated there's nothing wrong with machine and this has never happened before. I did not know I had these problems with my neck and back spinal cord before the MRI. At the time the MRI magnetic force was focused on the injury sites, this is where I had the electric shocks. Seemed like strong 12 volt shocks. one made me jump. I see a pain management physician on Monday 04/08/2008 Australia time, he ordered the MRI so I don't know what the diagnoses or prognosise is at this stage. Or even if it is related to what I am experiencing. The gabapentin medication for neuropathic pain seemed to work for about one week, decreased the sensations enough to cope. My phsychologial state improved during this time. Then the symptoms returned. Just like the other medication - Lyrica. I upped the does as advised by my doctor and the symptoms became worse than not having any medication.Unfortunately I'm sensative to food dyes, colours, chemicals etc. And I suppose some medications can give me unusual symptoms. It only becomes a phsycological or physical problem when I continue to put these into my body for a few days or weeks. Procees foods and additives are a problem for me if I eat them every day. The affects are not severe but they can alter my mood and increase pain if I eat them every day. Pardon my language but, ****, I'm exhausted. Coming off the medication is worse than the conditon itself. It magnifies the sensations as I am withdrawing. The sensation seems to be worse in my left shoulder blade area. I am thinking that possibly there is a nerve damaged or trapped in this area. It may be contributing or even be the cause of the problems. I've got no idea but the medical system is to slow in helping me. At thew worst of it I feel like crying and going to the nearest hospital and begging somebody to please help. The only way to cope with this feeling when it gets to bad ( mostly around the morning and lasts to about7p.m.) is to be sedated, it gets that bad. Stress aggravates it. I cannot sit still with it. When I move around I get tired and want to just full down, although it seems like I have nervous energy from the cratching your nails on the black board feeling. It is a cycle that has at times nearly caused me to become histerical. I can't go to a doctor or hospital in this condition because I fear that they may think I'm nuts. I can only describe it in this sort of metephor - imagine you had a broken leg the bone is protruding, you are in so much pain you cannot bare it, you just want to get knocked out. But the doctor, (who has never seen or dealt with a broken bone before, he does not know what it is) is telling you that it is all in your head. he can't see any problem and that it is a symatiphor disorder because you are depressed. ****! how can I not be depressed, I have a bloody bone sticking out of my leg. Can't you see it. I'm frustrated with the doctors, and the specialists, I've been waiting 4 months to see a neurologost. I will insist on further blood tests if this MRI investigation is not the cause. I'm learning every day - don't wait for somebody else to fix you . I have to help them help me. It has taken me a great deal of research, to educate myself and my local GP, but I am getting closer. In my unprofessional suffering opinion, I have neurologic pain syndrom due to perifial or central nervous system damage somewhere. I need to find somebody that can test the nerve pathways. I assume that would be a neurologist but I have to wait untill 02/09/08 to see him. Thankyou for writing and your interest. I will keep you informed of my progress. I will find the answer and hopefully pass on what has worked for me. My name is Tass.
    Searching 14 Replies Flag this Response
  • Dear Tass, it sounds like you may be on the track of your problem, with your response to the MRI at the site of your nerve compression. Don't expect your doctor to note this as important, but frankly, we are very intuned to our bodies, and if you felt a shock or pain when the MRI was sending its magnetic pulsations through your problem area, it was related to your problem!A neurologist can do nerve conduction studies to see if you have nerve injury, and I'm not sure what the pain Dr. will offer, maybe electromagnetic stimulation (that is often helpful for neuropathic pain).Anyway, a couple of vitamins that might help you, B6 up to 50 mg a day, and B1 (thiamine) 100 mg. a day. Also choline and inositol. And Omega 3 Fatty Acids. All of these are for nerve support.Good luck. Marionstar
    marionstar 228 Replies Flag this Response
  • Dear MarionStar, Thank you for your support and advice. You sound as though you know what you are taklking about. Have you been through this or are you a medical professional of any form?. I'm seeing the pain doctor tomorrow. I'm going through a rough time at the moment coming off the gebapentin. It is distrubing my already poor sleep patterns,causing a nervous depressed feeling on top of that bloody awful scratching your finder nails on the black board feeling. It is bad in the morning. I go into a back room and cry for about 10 or so minutes. I just can't stand it. I would rather feel the pain of cutting off my own leg without anasthetic, than go through this feeling. Yes it is that bad. But don't worry I will not cut off my leg. I know this will not fix the problem. I am drawing on every bit of coping skill that I have to get through this. It's not perfect but I'm going through hour by hour until I can get back to bed and sleep. My strength is my children. I need to get better for them. They do not know what I am going through, nobody does, not even my wife. Only my doctors and people that read these messages. Unfortunatley my wife and kids are very sensative to stress and worry. I cannot bring myself to cause them more pain. They know I am not well but I put a smile on my face every day for them. I am nothing special I just love my family. I know I am on the right track and I will help the doctors help me. I am a police officer by occupation but have been off work since this illness started in May 2007. I know how to investigate crime and police matters and I am greatful that these skills are helping to research and find answers. I think I am even educating my family doctor in the process. Many thanks Tass
    Searching 14 Replies Flag this Response
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  • Dear Tass, I am sorry that it has been so terribly hard for you, and glad that you have the strength to persist. I assume you are not taking any medication that you did not list...for example for your stomach--tagamet and the like can cause akasthisia, not just (some) antipsychotics.If you have stomach problems, you are a set up for B12 deficiency. There is an excellent blog on B12 on wrongdiagnosis.com, which will tell you everything you need to know about B12...you would be amazed at how many symptoms can be caused by its lack. Your blood level does not always reflect the B12 available to the body.Please consider taking the vitamin supplements mentioned, including methyl-B12 (sublingual will work), thiamine, B6 (up to 50 mg), folic acid, choline and inositol and omega3 fatty acids. The B12 blog lists another form of B12 that is important too.I've worked in a variety of medical offices. Let us know how it goes with the pain doctor. Take care. Marionstar
    marionstar 228 Replies Flag this Response
  • PS to Tass, if you'll send me your e-mail address, I'll forward the B12 blog to you so you can look at it. I haven't learned how to negociate the blog format too well; I couldn't find the B12 blog by "search," although the title of it is:"Vitamin B12 deficiency is commonly misdiagnosed"You may be able to find it. Marionstar
    marionstar 228 Replies Flag this Response
  • Hi, Tass, I'm wondering how you are doing...please keep posting. My e-mail is marionstar@aol.com. Maybe you were able to find the B12 blog. Marionstar
    marionstar 228 Replies Flag this Response
  • Hi Marion, I saw a pain specialist on Monday, after a three week trail on Gabapentin - used for Neuropathi pain amongst other things. The MRI results of slight compression of spinal cord and a number of disc protrusions was not considered to be the problem by him. The first week on gabapentin seemed to be doing good but the affect wore off so I up the dose as dircted by Dr. It then caused what I think was a paradoxic affect. The syptoms became hightened and worse. I could not withdraw from it to fast as this even caused more of the nervous, cratching your finger nails on a black board feeling, I got very jumpy and had a lot of energy and wanted to do a miilion things at once. It seemed that it was interferring with my brain chemistry. This drug is also used to control epeleptic fits, I'm not epileptic. So the past few weeks it's been crap. I have an appointment with a neuro tomorrow. I have lost faith in the medical proffession, it seems nobody really cares to listen. I know my body and how I'm feeling. It is giving me clause every day but the Doctors aren't looking at the clause they just want to treat the symptoms. Try telling a specialist what he needs to do to help you. It's like your asking for their pay cheque. Not good enough for me. I want the problem gone, identified or minimused. I know this can be done. I have started treatment with an oestiopath. His diagnoses is C4 syndrom - being a problem with the cervical c4 back bone - causing the weird sensations in my body. This makes sense since I have had trauma to my back over the years and I have had alot of pain and muscle tightness. I'll give him a few months and see how this goes. Failing all this I think I'll give them all the flick and concentrating on trying to heal myself through meditaion, healthy eating, reduced stress and anything else that does not involve the medical profession unless they can help. I know I should be doing all this at the moment and I am. Although much of my thoughts and energy is going into the trust of others to cure me. This is not helping me. In fact it seems to keep me in the moment of this illness. I'll keep in touch thankyou for your interest. Tass
    Searching 14 Replies Flag this Response
  • Hi, Tass, your osteopath may be right...good luck. Massages, yoga, meditation. Be sure you are sleeping on a good pillow roll under your neck, and that your mattress is good, somewhat firm. If you don't have a firm mattress, or if it is sagging in the middle, for starters you can put a piece of plywood between the mattress and box springs. Keep us posted. You're right about drugs...you can NEVER tell what they are going to do. And AMEN on talking to specialists...I have decided they just want to give you a script and move forward. It is sad. Marionstar
    marionstar 228 Replies Flag this Response
  • Hi Marion, I was examined by a neurologist today, no suprise to me, there is nothing he can do for my condition which he believes to be cronic pain syndrome. Not a phsycological conditon that 4 Psychciatrists have diagnosed. (symetaphor disorder). Well now I have 4 different diagnosise and it is time for me to take charge and try and heal myself. They cannot help me. I need to help them help me, although it is not easy trying to tell a doctor what I need to check. So I will look at more alterntives such s excercise, meditation, diet, improve my happiness by buying myself a long wanted motor bike and do what feels good for my soul and family. Lifes not fair but I'm not going to let it kick me around without a fight. I was once a fit person, competed in triathlons and long distance running. I can remember during races that I would be absolutley exhausted during the final minutes of the race, which sometimes went over two hours. I would never stop or give up during a race. It was a battle of mind against body. On most occasions when I past the finish line I would almost collapse in fatigue and at times begin to throw up, I had punished my body so much. There seemed to be some reason I was putting myself through this trauma but I couldn't figure it out. Why I was doing this to myself?. Now I have found the answer. This persisitance over some years of not giving up in races has strengthen my spirit. My stubberness and will to fight on is helping me right now. There is a reason for everything, I will eventually figure out why I am going through this suffering now. I'm sure there will be a good reason, but only god knows right now, or maybe I'm being punished. When I get through this I will be a much better and wiser person. RegardsTass
    Searching 14 Replies Flag this Response
  • Hi, Tass, thanks for your note. You have the right attitude, and will work through this.Did you check out the B12 blog? I don't know how to send it to you, but it might help you. It is a very long-running blog...over 400 pages, with tons of information.Although we sometimes think our maladies are a punishment, remember it is not the will of our Creator that we suffer...Marionstar
    marionstar 228 Replies Flag this Response
  • I've not heard of Akathisia until tonight while I was doing some more reading on Encephalitis. I had Herpes Simplex Encephalitis four years ago and now struggle with quite a few emotional problems. Another problem is the constant need to be doing something, not staying asleep and frequent urination. I've found that it's worse at work where I'm usually a basket case and am wondering if going to the restroom is a signal my brain sends so that I can get up and destress. I noticed that it is worse everywhere but home which makes me lean towards the fact that it's stress related. The brain injury effected my central nervous system also which may be the culprit. Does anyone else have this problem associated with a brain injury?
    BLYTHE 1 Replies
    • August 11, 2008
    • 03:58 AM
    • 0
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  • Hi, Blyth, The Zoster Herpes virious can cause these symptoms. I have had all the blood tests in regards to the symptoms I am suffering, which you will find under the heading of neuropathic pain or chronic pain syndrome, similar to Akithisia in my case. Both these illnesses can be casued by central or perifial nervous system damage or restriciton in spinal canal. I have been researching for the past 15 months - I have had to educate the doctors, and only now have just started to understand what is going on. I have had trauma to my back so it is likely my symptoms are from the nervous system. My advice, I am not a doctor! Go and speak with your family doctor after you have read the subject of neuropathic pain and the symptoms. The causes can range from biological such as toxins, lead poisoning, Zoster Herpes virous(shingles) or nerve damage. It can even be caused by some medications. YES - stress is a major problem for this illness. Try and reduce it or get rid of the high stress if you can. In my cause it is perifial damage so it is impossible to locate the exact area so I am trying different medications and meditation and mild excercise. Sometimes it's good and sometimes it make things worse, but I am determined to beat it. All the advice and treaments are on the net under the heading of neuropathic pain. (Neuropathy) Have a look. Good luck. Tass Hi Marion, I had the neuro exam - nothing he can do but he has confirmed or he believes that it is perifial nerve damage. I need to lower my stress levels, obtain physical treatment from osteopath and look at healthy living, and I will have a look at the B12 Blog. Thankyou for your adivce. Tass
    Searching 14 Replies
    • August 11, 2008
    • 06:08 AM
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