Terrible muscle twitching years after using illicit drugs!

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Postby dogdogman on June 9th, 2003, 12:02 pm

Cheers Eric. I don't know what the hell is going on inside my body but it just continues and continues and I'm at my wits end with it all. It is very difficult to know what to do/where to get help as there is nothing out there to help this terrible affliction. I just keep looking back to the days when I was drug free and take snapshots of my life back then. No twitches, no feeling of nervous system damage, no extrasystoles (extra heartbeat), no nothing - just a healthy young male who enjoyed life. Now post drug use I am some awful mess who struggles to know where his nerves are touching. I have to concentrate that it is my back touching the floor as opposed to my hands. Sounds weird? I know it's f***ing weird but this is how it is for me. It's completelt insane and I think sometimes that I am too.
The drugs have ruined my quality of life - messed up my brain and left me with physical symptoms that are at times unbearable.
Last night I had another episode where it seemed like I was out of touch with reality. Everything was so sharp, colours intense, I was driving at the time and listening to the radio. The music seemed sooooo loud and distorted - it is as though I am having flashbacks to the bad trip.
Anyhow I met a really nice girl who seems to take my mind off things a bit.
I need something to help me that's for sure. I am currently taking Neurontin but it has not helped me completely - some relief has been found but predominantly the symptoms persist. I just think I'm absolutely f***ed. I do get very depressed mate. Anyway all the best.

Dogdogman :(
Some days are just complete hell. Surely there are some meds that can help me!
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Hi

Postby Flash19 on August 7th, 2003, 12:07 pm

Your problems are anxiety related. It sounds like you have had anxiety attacks during drug usage. This heightens the feeling of anxiety and such attacks can cause more longterm emotional problems. I can reassure you however that neither cannabis, LSD, or mushrooms will have caused anything permanent. Ecstacy may cause permanent damage, but millions of people take it multiple times and only a neglible few appear affected. Not counting those that died;)

Anxiety attacks are terrible things, but they can be dealt with. I suggest the following approach, Reuchian therapy (this is very hands on) followed by some specialised exercises to strengthen the 'will'. I too suffer from anxiety but only when I am mentally overloaded. But my experiences echo yours.

For the record I also took drugs recreationally in the early nineties. Now I can't handle them at all! That's called getting old and fearful. Remember that Keith Richards id still alive.


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Postby PamT on August 7th, 2003, 12:22 pm

To Eric: Look up BPPV on the internet. I think this is what you have - I had it and it can be fixed. Benign Paroxysmal Positional Vertigo.

DogDogMan - hang in there. Have you gone to any big clinics, like Mayo clinic, cleveland clinic, john hopkins? Maybe they could provide more help to you.
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Re:Drug use

Postby Zach on August 22nd, 2003, 10:32 pm

At the height of my college partying days, I was using cocaine and marijuana pretty heavily. I also used LSD a few times, all but one being very negative expieriences. I started off drinking alcohol and using marijuana in high school. By the time I was 22, I was using cocaine almost daily. I was having panic attacks quite often, no doubt due to my excessive cocaine use. When I was in high school and college, meth was nowhere to be found. Thank God, I'm sure I would have been sucking that up my nose too. I've seen that stuff destroy a lot of people.

At any rate, I ended up in the ER one night because I thought I was going to die. I had done a fair amount of coke, drank many beers and smoked several joints. It never ceases to amaze me at how ignorant I was in those days. That was 10 years ago. It was enough to make me stop for good. I have not touched cocaine since and have no desire to. I also quit smoking weed. I don't think marijuana is nearly as bad as cocaine and in some cases it can be helpful. It just has no place in my life. Some people do fine with it.

I don't think your symptoms are at all related to your past drug use. It's been many years. They could be related to high stress levels and severe anxiety. I think you'll be ok. You quit using and your making an effort to deal with your anxiety. Don't beat yourself up for mistakes made when you were a kid! I think we all felt invincible and some of us pushed are bodies to the limit with drugs and alcohol but there is no reason to think that this is what's causing your symptoms. IMHO

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Postby tlotoxl on September 10th, 2003, 9:51 am

i dunno if everyone read about this, but apparently the ricaurte study, the one that suggested a strong link between even one night's consumption of ecstasy and parkinson's, has been retracted:

Scientists at Johns Hopkins University who last year published a frightening and controversial report suggesting that a single evening's use of the illicit drug ecstasy could cause permanent brain damage and Parkinson's disease are retracting their research in its entirety, saying the drug they used in their experiments was not ecstasy after all.

The retraction, to be published in next Friday's issue of the journal Science, has reignited a smoldering and sometimes angry debate over the risks and benefits of the drug, also known as MDMA.

The drug is popular at all-night raves and other venues for its ability to reduce inhibitions and induce expansive feelings of open-heartedness. But some studies have indicated that the drug can at least temporarily damage neurons that use the mood-altering brain chemical serotonin. Some users also have spiked fevers, which rarely have proven fatal.

Last year's research, involving monkeys and baboons, purported to show that three modest doses of ecstasy -- the amount a person might take in a one-night rave -- could cause serious damage to another part of the brain: neurons that use the brain chemical dopamine.

Two of 10 animals died quickly after their second or third dose of the drug, and two others were too sick to take the third dose. Six weeks later, dopamine levels in the surviving animals were still down 65 percent. That led Hopkins team leader George Ricaurte and his colleagues to conclude that users were playing Russian roulette with their brains.

(cont'd)


http://www.maps.org/media/wpost9.6.03.html

Not to say that everyone should go out and eat some MDMA, but if you might be freaked out in retrospect by some anti-drug literature, it's useful to know what is good science and what is junk.
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Postby dogdogman on September 21st, 2003, 6:52 am

Hi everyone.
It's been a while since I posted on here as I have been trying to get on with my life without assistance. Recently however I am cracking up once more to the point of really struggling to cope with all my symptoms. I have started to get muscle jerks that occur throughout my entire body (mainly when I am at rest but do occur at other times too). I believe this to be myoclonus? myo = muscle clonus = jerk. These occur when I am laid in bed and sometimes my whole body will just flick up or an arm will flail across the bed hitting my girlfriend in the process - most unpleasant and *beep* scary stuff. On top of this I still have the all-over body muscle fasciculations which just keep on driving me mad. I have had one particular thigh twitch now for over two months and it just persists on and on and there doesn't appear to be a thing I can do to stop the b***ard!
I went to see another neurologist recently who lifted my top and examined my back and told me he could not see any fasciculation present. I showed him one that was occuring in my bicep and he just said "OK" in that medical fashion that they have. He did not seem interested to be honest. I asked him if my past illicit drug use could have caused brain damage of some sort but he thinks not. He says that the only brain damage that could occur from using drugs like ecstasy was due to the person having a stroke or losing their breathing whilst induced etc. Nothing like that happened to me - I just seemed to have a really bad trip but if my memory serves me correctly I noticed the twitching whilst panicking on the drug. He prescribed Clonazepam for the myoclonus and Propranolol for the twitching. All I can say is that the Propranolol (40mg three times a day) has not done a thing for me and the Clonazepam may have helped a little (0.5mg at night). He told me that he had seen only three other people during his profession who exhibited with this twitching phenomenon and that the two medications mentioned seemed to be the best treatment for this condition. Hmmm, no joy there then. I still feel weird all the time, my nervous system feels destroyed. Like when my girlfriend is holding me it is as though I can feel her body touching my bones (sounds crazy I know!). I am just a complete mess. My body feels strange when I am driving, my back pressing against the seat. I cannot wear a seatbelt as this feels strange too. I really need some sort of medication that will suppress these things as I am stuggling with life right now. When I get a whole finger twitch you can see the tendon in my arm move involuntarily. It's just one big mess and I don't seem to be able to get any help anywhere - where do you turn? Sorry to ramble but I aint doing too well right now. I have stopped taking the Propranolol and am trying to do it alone. I workout 5 times a week and am taking Creatine Monohydrate supplements (10mg per day) but this doesn't seem to help with the twitching although it helps the intensity of my workout. I have to say also that calf twitching seems to be the worst. They occur all over my calves all the time - little flickers and ripples of skin movement. You know the script I am sure.
I am still worried about brain damage as the symptoms are so bad. I do not know if any of you have this strange skin sensation or have to put up with myoclonus on top of your fascics but it is hard to imagine that ANYBODY is as bad as me with all of this.
My thoughts are with you all who have this affliction.

Dogdogman :(
Some days are just complete hell. Surely there are some meds that can help me!
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Postby sheilainsa on September 25th, 2003, 1:12 am

I've got all the BFS symptions, twitches, tremors and jerks and can honestly say I've never taken an illicit drug in my life. I also wish I knew where its coming from, but haven't got a clue. I'm not anxious, I don't think I had any illnesses prior to the twitching, and wasn't on any pills other than occassional nytol.
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Postby eric on September 25th, 2003, 9:28 pm

dogdogman wrote:Hi everyone.
It's been a while since I posted on here as I have been trying to get on with my life without assistance. Recently however I am cracking up once more to the point of really struggling to cope with all my symptoms. I have started to get muscle jerks that occur throughout my entire body (mainly when I am at rest but do occur at other times too). I believe this to be myoclonus? myo = muscle clonus = jerk. These occur when I am laid in bed and sometimes my whole body will just flick up or an arm will flail across the bed hitting my girlfriend in the process - most unpleasant and *beep* scary stuff. On top of this I still have the all-over body muscle fasciculations which just keep on driving me mad. I have had one particular thigh twitch now for over two months and it just persists on and on and there doesn't appear to be a thing I can do to stop the b***ard!
I went to see another neurologist recently who lifted my top and examined my back and told me he could not see any fasciculation present. I showed him one that was occuring in my bicep and he just said "OK" in that medical fashion that they have. He did not seem interested to be honest. I asked him if my past illicit drug use could have caused brain damage of some sort but he thinks not. He says that the only brain damage that could occur from using drugs like ecstasy was due to the person having a stroke or losing their breathing whilst induced etc. Nothing like that happened to me - I just seemed to have a really bad trip but if my memory serves me correctly I noticed the twitching whilst panicking on the drug. He prescribed Clonazepam for the myoclonus and Propranolol for the twitching. All I can say is that the Propranolol (40mg three times a day) has not done a thing for me and the Clonazepam may have helped a little (0.5mg at night). He told me that he had seen only three other people during his profession who exhibited with this twitching phenomenon and that the two medications mentioned seemed to be the best treatment for this condition. Hmmm, no joy there then. I still feel weird all the time, my nervous system feels destroyed. Like when my girlfriend is holding me it is as though I can feel her body touching my bones (sounds crazy I know!). I am just a complete mess. My body feels strange when I am driving, my back pressing against the seat. I cannot wear a seatbelt as this feels strange too. I really need some sort of medication that will suppress these things as I am stuggling with life right now. When I get a whole finger twitch you can see the tendon in my arm move involuntarily. It's just one big mess and I don't seem to be able to get any help anywhere - where do you turn? Sorry to ramble but I aint doing too well right now. I have stopped taking the Propranolol and am trying to do it alone. I workout 5 times a week and am taking Creatine Monohydrate supplements (10mg per day) but this doesn't seem to help with the twitching although it helps the intensity of my workout. I have to say also that calf twitching seems to be the worst. They occur all over my calves all the time - little flickers and ripples of skin movement. You know the script I am sure.
I am still worried about brain damage as the symptoms are so bad. I do not know if any of you have this strange skin sensation or have to put up with myoclonus on top of your fascics but it is hard to imagine that ANYBODY is as bad as me with all of this.
My thoughts are with you all who have this affliction.

Dogdogman :(
I dont know where you live but I must assume you live in england,your symptoms sound like lyme disease of the peripheral nervous system! I posted here before and that is what I had. you must try to get on antibiotics now! and see if it stops it , if it does you will have a bad reaction to the antibiotic first before you get better,I believe that a bacteria has gotten into your nervous system and it is messing you up,you also may have a lyme encephalapothy that is reversable. there is no accurate test for lyme. see an infectious disease doctor not a neuro they dont know about infectious disease.good luck!!!!!!
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Postby dogdogman on September 27th, 2003, 9:39 am

Lyme disease? Well put it this way I used to work on a sewage works so I could have been bitten by a tick or something. So what you are saying is that there could be a complete cure for me? If that is the case I will be overcome with emotion - I really will. Please could you tell me where I can find an infectious disease doctor in Preston, UK. Anyone help me out here?
It is my understanding then that if I am given antibiotics for Lyme Disease I will be cured (providing it is Lyme Disease). Are you saying that the muscle fasciculations/jerks would all disappear? The strange feeling of the nervous system - everything!!!
Please tell me that this could be possible and I will exhaust all avenues to seek the Lyme Test.

Cheers Eric. I just hope that you have stumbled onto something here - the relief from a cure would be tearful to say the least.

:)
Some days are just complete hell. Surely there are some meds that can help me!
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Postby eric on September 27th, 2003, 12:10 pm

dogdogman wrote:Lyme disease? Well put it this way I used to work on a sewage works so I could have been bitten by a tick or something. So what you are saying is that there could be a complete cure for me? If that is the case I will be overcome with emotion - I really will. Please could you tell me where I can find an infectious disease doctor in Preston, UK. Anyone help me out here?
It is my understanding then that if I am given antibiotics for Lyme Disease I will be cured (providing it is Lyme Disease). Are you saying that the muscle fasciculations/jerks would all disappear? The strange feeling of the nervous system - everything!!!
Please tell me that this could be possible and I will exhaust all avenues to seek the Lyme Test.

Cheers Eric. I just hope that you have stumbled onto something here - the relief from a cure would be tearful to say the least.
\
I had all you describe and yes I was the happyest man alive when the antibiotics started to get rid of the infection! i dont have jerks anymore and the fassiculation have come to a crawl.the wierd symptoms are gone. but it takes along time to get better, I had a spect scan which showed lyme. the uk has the same disease as we have here in the states.there is no test at all for lyme as they are inacurrate. you have to get on doxy from your doctor and see if you get much worse, if you do as i suspect you will then be on your way to recovery.I believe that you have lyme of the peripheral nervous system because you had the same symptoms as me!
go now to a hospital or a doctor and tell them your story and see if they will give you antibiotics,good luck!

:)
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Postby dogdogman on September 27th, 2003, 12:26 pm

OK I'll definitely do that. However I was put on doxycycline antibiotics for a prostate infection that I had some time ago but I did not feel myself getting worse as you have said. These antibiotics were prescribed for this condition (prostate infection) and were nothing to do with my terrible syndrome. If the doxy would also indicate the Lyme disease then surely I would have noticed myself getting worse whilst on it? What are your thoughts on this Eric?

Thanks.
Some days are just complete hell. Surely there are some meds that can help me!
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Postby eric on September 27th, 2003, 2:18 pm

dogdogman wrote:OK I'll definitely do that. However I was put on doxycycline antibiotics for a prostate infection that I had some time ago but I did not feel myself getting worse as you have said. These antibiotics were prescribed for this condition (prostate infection) and were nothing to do with my terrible syndrome. If the doxy would also indicate the Lyme disease then surely I would have noticed myself getting worse whilst on it? What are your thoughts on this Eric?

Thanks.

i do remeber having pain in the testicles and then pain in the prostate at the onset of my problems,if you took doxy the dose has to be large and sometimes doxy may not work and you have to try another antibiotic.
im not a doctor but if the antibiotics work its all worth the effort what do you have to lose,any look up als and lyme disease and you will see what im talking about.good luck
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Postby dogdogman on November 9th, 2003, 1:46 pm

The concerns I have are that the use of amphetamine/ecstasy in my teen years have "cooked" my brain. Sometimes I cannot recognise where nerves are touching, like is my foot touching the floor or is my arm touching the table. Sounds weird? I know it does sound *beep* weird but it is as though all my nerve impulse signals are confused. This leaves me feeling absolutely damaged and I do so much need help. I cannot go on like this feeling SO bad all the time. Finger kerks, toe twitches or jerks, twitches in the head, mouth, nose whatever - it all SUCKS!!!!! I sometimes feel suicidal but I know that I will never carry this out as I am too scared to do anything like that. I just seemed to be trapped in my own damaged body - this must be a severe warning to anybody considering using drugs. The drugs must have caused this condition, I cannot possibly have ended up like this if I would have never used. I guess that I will have to suffer for the rest of my life as a result of a stupid teen era. Man it aint easy living like this. What can I do?

:(
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Postby dogdogman on February 2nd, 2004, 3:27 pm

Sorry to harper on about all my symptoms but I feel like I need some advice from you people as to what I can do to help myself. As I said I am currently taking Clonazepam (Rivotril) 0.5mg twice a day but it doesn't seem to help that much - it just makes me tired. I do live an active and healthy lifestyle (albeit a little too late!) and try to get on the best I can. I am thankful that this condition is benign but I am mentally affected by it all. Is there anybody out there that can relate not just to the twitches and jerks but also to this weird feeling of nervous system damage - i.e., extremely heightened sensation of skin touching the chair or your clothes etc? I have read about the fascics and jerking but nobody seems to present themselves with this nervous system damage type symptom that affects my whole body. This is where I differentiate myself from many of you sufferers and this is why I think that the ecstasy has destroyed some sort of chemical which is vital to nerve balance and proper muscle impulses. Please reply. Many thanks. Any help/advice is always welcome - I feel like I need it!

Dogdogman :(
Some days are just complete hell. Surely there are some meds that can help me!
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Me Too

Postby Flash19 on February 3rd, 2004, 5:01 am

I have that symptom too. It's due to thinking about it too much.

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