Terrible muscle twitching years after using illicit drugs!

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Terrible muscle twitching years after using illicit drugs!

Postby dogdogman on April 27th, 2003, 9:12 am

Dear all,
When I was in my teens (around the time of 1991-1993) I was a cannabis smoker and experimented with LSD, amphetamines and then moved onto Ecstasy. Anyhow in Dec 1993 I endured a massive panic attack where I thought I was going to die (after eating a cannabis cake) and the hallucinations were so severe I just could not cope with the panic. I eventually laid down and slept it off, however it did seem to affect me for days after. Now as if that wasn't a big enough warning I took 2 ecstasy tablets on New Years Eve at a party along with some amphetamine. This time the feeling of impending death came back but because I was on E I really did think I was going to pop my clogs (never heard of a death from cannabis but from E there are reports!). Anyhow my friends did not help as they just kept reinforcing me with bad thoughts. "He is going to die" was what I kept hearing. I totally lost the plot and after this terrible ordeal I then started suffering terrible panic attacks where the heart would race and skip beats. I once even ran to the doctors surgery and banged down the door but it was closed. I felt so isolated and just cried and I ended up seeing a psychiatrist and in turn signed myself into a psychiatric unit as I felt I may get a 'quick fix' and a cure. Of course conditions like this do not work like that and I soon signed myself out after seeing psychiatrically ill (schizophrenia etc) people in there! Anyhow every day since I have had muscle twitches all over my body, the face, legs, arms, neck, buttocks, genitals (you name it I get them everywhere!). Along with these symptoms I feel uncomfortable wearing a seatbelt (it feels like my nervous system is strange when the belt touches my skin), wearing a T-shirt (I take it off when I get home from work) all for reasons of strange skin sensations. When I attend the gym and do sit ups my back feels funny touching the floor. Now I know all this sounds sooo strange but I tell it as it is. I put myself through University recently as a challenge to convince myself that I had not lost my intellect. I came out with some great results and now hold down a good job. Sometimes my heart skips a beat and that can be really frightening. I have seen Neuros and Cardiologists in the past. The Neuros ruled out any disease (which is obviously pleasing but they do not know what it is!) and the Cardiologist says my heart is absolutely fine. What worries me (and also the Consultant Psychiatrist from 7 years ago) are the muscular twitches which are quite pronounced. You can actually see them all over my body. I once went to my GP to show him one in my calf. I managed to arrange the appointment the same day and show him the twitch 6 hours later! I am concerned that I have damaged my brain through illicit drug abuse and if anyone is considering using illicit drugs I can only tell you what has happened to me and you make your own decision. I am now trying Neurontin 10 years later when the symptoms still persist. I get some better days than others, live a healthy lifestyle, no caffeine, no fat etc but the problems are still there. I do get feelings of being out of reality too and not in touch with the world, like I am still high on drugs. It really is awful and I struggle at times to know where to turn. I just try to make the best out of a bad body now! What could I try next?? Any help would be soooooo appreciated. Living like this is just no fun!

Anyway everyone the best of luck with everything!

Dogdogman.
Some days are just complete hell. Surely there are some meds that can help me!
dogdogman
Member
Member
 
Posts: 20
Joined: April 27th, 2003, 9:04 am

Postby vessel on April 27th, 2003, 7:07 pm

I personally think that your symptoms are NOT from past drug use. I also experimented quite heavily with LSD, mescaline, PCP, pot, mushrooms, THC pills (the list goes on and on) back in my teens and early 20's. I had many bad trips and had the feelings you described that sometimes lasted for days. It does not mean they "messed you up" so bad that you are still suffering today.

It sounds like you have benign fasiculation syndrome (see many posts related to this on this forum) and also suffer from anxiety and panic attacks. You might have additional psychological problems. I suffer from these things as well as so do many of my friends and relative who have never touched drugs in their lives.

I would start reading up on BFS to see what you can do to relieve some of your symptoms (like stop stressing out about them and learn to calm down). I would also continue to get counseling for any psychological problems and see if you need meds. Most importantly..........NEVER do drugs again!!! People with nervous disorders usually have problems with any type of drugs.

Hope this helps. Take care!!!
vessel
Interested
Interested
 
Posts: 14
Joined: April 27th, 2003, 12:55 pm

Postby tlotoxl on April 28th, 2003, 2:12 pm

I've suffered from BFS and I swear the worst bit is wondering if my problems were brought on my previous use of weed/lsd/mushrooms/ecstasy...

I seriously doubt that's the case, though. Although we can't say anything certain about those drugs, from what I've read aspartame is implicated as a neurotoxin to the same extent as ectasy, and no government study has yet linked ecstasy to any sort of movement disorder (aside from a really really distant and unproven, suggestive PD claim). As for weed/LSD -- those may be damaging psychologically, but aside from HPPD (hallucinogenic persistent perceptual disorder) as far as I know, no physiological damage has been found.

On the other hand, a friend of mine ate too many mushrooms on his 22nd birthday, got really confused, and walked into a river in winter and died. I have to think that we are lucky.
tlotoxl
Selfless giver of time
Selfless giver of time
 
Posts: 223
Joined: August 16th, 2002, 8:17 am
Location: Fukuoka, Japan

Postby dogdogman on April 29th, 2003, 4:47 pm

I would just like to thank you both for your replies. I think you are probably both correct in saying that this affliction is not drug related at all. Hmm, somehow though I cannot help but feel if I had not taken any drugs then I would not be in this state today. I guess I'll never know! The worst part of all this is going to bed and waking up feeling like my nerve skin sensations are not right. I am not sure if you will understand what I'm saying because it is hard to explain. I feel better when I am not wearing any clothes because then my clothes are not touching my skin. Yes I know this sounds crazy but the twitches that occur all bloody day along with this strange sensory perception must be linked. I guess there are a lot of you out there that have NEVER taken illicit substances and are in the same boat as myself. Do any of you feel this strange sensory stuff? I hear that many of you suffer from these awful fasciculations/twitches but have never heard anyone say that their nervous system feels "strange". Does anyone suffer from these terrible twitches as a result of taking drugs?
My thoughts are with you all as they are with myself!

Thanks.
Some days are just complete hell. Surely there are some meds that can help me!
dogdogman
Member
Member
 
Posts: 20
Joined: April 27th, 2003, 9:04 am

Postby reneeintx on April 30th, 2003, 12:59 am

Hi dogdogman,

Are you in the UK? It doesn't matter I was just wondering about the word you used "bloody". Not heard much in the states.

Anyway about the twitching. I smoked weed when I was in highschool and used to think it felt fun to be jumpy, nervous- like. I wish BFS worked like pot and we'd just come down from it. I never took acid, or pills. I was too afraid.

I sometimes feel like my body isn't mine anymore, that something has taken over. S~c~a~r~y. My nervous system is on overdrive. I can say I've been twitching for 5 months and it has decreased. I'm thankful for that. :)

Don't beat yourself up thinking you caused this. Most of us will never know why we have this crazy thing. I say most because I still think it could be caused by vitamin deficiencies, thryoid, or spinal problems and many other things that I can't think of at this moment.

All the best to you,
Renee
reneeintx
Selfless giver of time
Selfless giver of time
 
Posts: 185
Joined: January 23rd, 2003, 11:33 am
Location: deep in the heart of texas

Postby fastpage on April 30th, 2003, 9:19 am

I have never used drugs except alcohol but I was a VERY heavy drinker for 20 years (quit entirely 10 years ago). I sometimes wonder, since alcohol abuse can cause peripheral nerve problems, if it has something to do with my twitching, but it seems like an awful long time between the cause and effect if so.
fastpage
Senior Member
Senior Member
 
Posts: 90
Joined: March 10th, 2003, 2:33 pm

Postby reneeintx on May 1st, 2003, 1:17 am

Congradulations fastpage on stopping the alcohol abuse. My mom is a retired nurse and she said cirrohsis(spelling) of the liver is a very painful disease and the outcome is quite bad. I rather deal with BFS anyday.

Renee :)
reneeintx
Selfless giver of time
Selfless giver of time
 
Posts: 185
Joined: January 23rd, 2003, 11:33 am
Location: deep in the heart of texas

Postby fastpage on May 1st, 2003, 9:10 am

I agree Renee. In fact it was some odd liver enzyme readings for an insurance exam that finally got me to quit. They have been back to normal for years, however. Just like smoking it was pretty easy to give up once there was a good enough reason. 10th birthday is coming up June 24th. Hope all is well with you.
fastpage
Senior Member
Senior Member
 
Posts: 90
Joined: March 10th, 2003, 2:33 pm

Postby dogdogman on May 7th, 2003, 4:04 pm

Thanks for your replies. The twitches just keep persisting and persisting all over. My neck, shoulders, biceps, triceps, calves, genitals, bottom, inside my nose, on my face, my temples, eyelids, fingers moving from side to side, chest, stomach just about everywhere! It's doin' my 'ed in! Also I get myoclonic jerks where my whole leg will just move to the side or my head will jerk upwards. My arm may just flick to the side at will without me having any control whatsoever over the affected limb. I just want to be like I was before - it really is getting me down. On top of this if I am lying down say on the bed it feels horrible as my body is touching the bed. Very hard to explain - as though there is some definite damage. I believe that I have got some form of brain/nervous system damage caused by the ecstasy abuse. I just feel like writing myself off and giving in. I am at my wits end. I do get some comfort from your replies but there does not seem to be any light at the end of the tunnel. Also some nights I feel like I am out of reality with the world. A bit like I am still on LSD or something - completely awful. I am suffering a lot here. Thanks anyway people for all your kind words/advice.

Dogdogman :(
Some days are just complete hell. Surely there are some meds that can help me!
dogdogman
Member
Member
 
Posts: 20
Joined: April 27th, 2003, 9:04 am

Postby tlotoxl on May 7th, 2003, 10:55 pm

After the last time I took LSD (a long time ago, now) I was feeling pretty dissociated for the better part of six months and had a lower-level of dissociation that lasted for over a year. In the months immediately following it, the world seemed too 'sharp', angles too acute, the blue sky too bright and my multiple internal thought processes too loud and disorienting. That lasted a long time, and like you I was just desperate to be able to climb back in to the body and brain of my former self.

Well, that not being possible, time has passed and gradually those persistent dissociative feelings have faded away and I don't find the world's angles to be too acute anymore.
tlotoxl
Selfless giver of time
Selfless giver of time
 
Posts: 223
Joined: August 16th, 2002, 8:17 am
Location: Fukuoka, Japan

Postby dogdogman on May 8th, 2003, 3:15 pm

Yes that is how I sometimes feel except this is ten years down the line! I am a lot lot better than I used to be with all this sh*t but it still is bad. I do not know how I used to cope to be honest - it's bad enough now. I guess that is why I signed myself into the psychiatric hospital to seek a 'quick fix'. Of course there is no such thing. In fact there does not appear to be a fix at all. Anyway I do seem to get some relief from exercising so I go running/to the gym every night. I am really toned up now and look healthy. Little do people know how I feel inside!

A despairing dogdogman :(
Some days are just complete hell. Surely there are some meds that can help me!
dogdogman
Member
Member
 
Posts: 20
Joined: April 27th, 2003, 9:04 am

Postby Jenn311 on May 8th, 2003, 4:02 pm

Dog dog man ,

Have you had your lithium levels checked?
~Jen
User avatar
Jenn311
Saint
Saint
 
Posts: 681
Joined: April 4th, 2003, 3:26 pm
Location: Central Texas

Postby tlotoxl on May 8th, 2003, 9:54 pm

dogdogman - have you checked the hppd forum? i dunno, you might find some ideas or consolation there.

http://www.stormloader.com/hppd/
tlotoxl
Selfless giver of time
Selfless giver of time
 
Posts: 223
Joined: August 16th, 2002, 8:17 am
Location: Fukuoka, Japan

Postby dogdogman on May 15th, 2003, 5:54 pm

I have not had my lithium levels checked. At least I do not think I have! I have had investigations in hospital for all the symptoms but nothing conclusive was found. The neuros never seemed to call it BFS but they did say it was benign and nothing to worry about. The thing is I think I could put up with twitches but it's this feeling of nervous system damage that is the worst. I wonder if it's all related to what the docs call "acute anxiety". Anyway there does not appear to be a quick fix as many of you know! BTW I do not do any type of drug and have not done for 10 years. I do have a drink cos I like it. At least we know what alcohol does to the body.
I also have to agree that there has been no conclusive physiological damage reported from LSD/cannabis/ecstasy abuse. The problem is that you do not know what you are taking and it could have been some other ingredient that has caused this. Are there any substances that could have been in the ecstasy that could have caused me to be like this?

Thanks,

Dogdogman :(
Some days are just complete hell. Surely there are some meds that can help me!
dogdogman
Member
Member
 
Posts: 20
Joined: April 27th, 2003, 9:04 am

I know where you are coming from!

Postby eric on June 8th, 2003, 7:23 pm

your story sounds familiar with the funny sensations you are not alone.
I have fassiculations all over the body, and when it first started it was after a fever.the twitching was everywhere even behind the scalp muscle. strange nervous sensations in the arms and legs.this is two and a half years and now I have the jerks while asleep.when it first started I felt like I could not go on and went into a hospital for 5 days. so I have been through the mill. I just could not think why this is happening. two weeks before the start of bfs i had vertigo only if I tried to put my head in a certain way,if I kept my head straight I was alright.all of this made me very worryed. I thought I had cjd and had that ruled out by the experts of that . so here I am hoping it will one day stop. everything the wierd feeling and all
hope it helps
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

I know where you are coming from!

Sponsor

Sponsor
 

Next

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 4 guests