Discussions By Condition: I cannot get a diagnosis.

Full Body Spasms, numbness

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Hammilton
  • April 11, 2007
  • 03:14 AM


I have a problem, and unfortunately I no longer have health insurance. I should in a couple months, but I dunno if it can wait that long.

I have been on methadone for the past year and a half, for a peripheral neuropathy, excluding a month long self-imposed "kick" (from 40mg daily), a three-month long Suboxone "kick" a few weeks on the Mylan Fentanyl Patch, and I'm currently on 4/1 - 8/2mg of Suboxone (buprenoprhine/naloxone) daily.

I have also been on Depakote, which was believed to have caused hand-trembling at one time- for which I got an MRI that showed nothing. Just to rule out brain cancer or something cool. I have taken Olanzapine (Zyprexa), and some Atypical-antipsychotics for mania in the past, although I haven't taken them in a few years.

I'm prescribed Adderall XR, but I only take that extremely rarely, and since the doc messed up and gave me 20mg bead-filled capsules, instead of the 10mg ones that my body could handle rarely, I never had to fill the extra prescriptions he predated for me (i realize that was probably illegal for him to do.... so that was really a lie)- 4 months now I'm on the same bottle.

Extremely occasionally I'll take Quetiapine (Seroquel) for sleep, to keep my body in a fairly natural rhythm. I figure it's a Super-Benadryl, or TylenolPM on steroids. Diphenhydramine causes an increase in blood pressure and EXTREME dizziness- I fell down the stairs in my house recently the day after I took Benadryl to sleep.

I don't know now if that was the cause or not, I worry that it may be my twitching problem.
I can't think of any other possibly related medications I take- besides the occasional Tylenol, Aleve or Ibuprofen.
I should say that I DO NOT believe that this is medication related, but I need to be thorough, because to date, I have no clue what's wrong.

I don't remember when it began, but I do remember seeing my pain-doc last summer, and bringing it up with him then. At the time, it only involved my lower extremities, and was only noticable when I was "relaxed"- 90% of the time, when I was lying in bed trying to sleep. Even then, they were VERY large jerks. I wasn't the only one who wasn't able to sleep- my fiance hated it too.

We've gotten used to it now, but in the last two weeks my body has gotten worse. Still, it doesn't interfere with my walking or during motion- so my conscious muscle use is apparently able to "beat" whatever abberant impulses were flying through my body. Now however, during these rest periods- including just watching TV, not only lying flat, they're getting much worse. Last tuesday I was laying down though and all of a sudden my right, non-dominant arm, punched the wall as it thrust forward. It felt EXACTLY like the typical "entire lower-body" jerks, but now it moved WAY up my body.

Then on Sunday, at home reading, my legs, below the knee went entirely numb. They were Novocaine numb, to brunt whacking (with a mini-baseball bat) and sharp, knife cutting. At the same time they were moderately tingly, like when Novocaine wears off.

To combat this, I've stopped taking Depakote- since my Psychiatrist said that might be a potential cause. I did do this without any MD help, however. I started taking the GABA derivatives, GABApentin (Neurontin) and pregabalin (Lyrica). At first they made me MORE unstable during daily activities, but (i forget the proper word) they are apparently "co-tolerant".

Despite 900mg daily, up- and 150 or so mg of neurontin, lyrica, respectively.

What should I do- what are the possible causes? I've even gone so far as to take an old diazepam to see if it's anti-epileptic effect would help. it had no impact.

So I assume this isn't some sort of seizure, but I dunno what it is.

Please! I really need help. If I can take care of this on my own, no doc's, it'd be great- but most of the meds a doc would give me have done nothing. I just don't know where to turn next. I don't know what other meds might stop this.

I think I have some old Baclofen, but I doubt if the other GABA-derivatives didn't work that this one will.

most of my meds are old- i never through away potentially helpful pills- though according to the pharmacist I talked to, all but one (I forget which) was very stable and age wouldn't affect them much at all.

btw- when I was younger, I did try some psychedelics, mushrooms and something called 4-hydroxy-diisopropyltryptamine (4-ho-dipt), but best I can tell, both are extremely safe. I dunno, though.


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6 Replies:

  • Have you been to a neurologist yet? That's probably the best type of doctor to see since your symptoms all appear to be related to muscles and nerves. Also it's quite possible that the combination of medications you're on is causing some of the problem.
    Anonymous 42,789 Replies Flag this Response
  • Good lord! What an insane cocktail of pharmaceuticals you have been and are currently taking! And you think they couldn't possibly be the cause of your tremors? I would disagree, and I STRONGLY suggest you list all your meds you are currently taking, and go to www.drugs.com. Click on their Drug Interactions tab, and type in all of these meds and check for interactions. This is an excellent website and gives so much more info than you will get from your doc or pharmacist. Look into vitamin and mineral deficiencies as a possible cause or factor. Potassium, magnesium, calcium, are just a few that can cause muscle spasm. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • i take two meds a day: Suboxone (so I don't feel like death) and either Pregabalin, neurontin or Depakote (so I don't feel euphorically manic or hurt too much, since Suboxone sucks as a pain med).tried other things to stop the twitches, but nothing has made a difference.plus, i've thoroughly checked all interactions before taking anything- and twitching has never been listed. Only thing that comes up, ever, is "moderate drug to drug interaction" increased drowsiness followed by "moderate drug to food interaction" grapefruit-juice.i hate taking pills, so I have a lot of bottles here with only a couple days worth used up. Lots of stuff from treating Mania and Depression, an idiotic add diagnosis, treating my neuropathy, and finally trying to get off of the meds to treat the neuropathy, without hurting or feeling like black death.It seems like it's getting worse the less meds I take though, but none of the meds I take that should work seem to do anything. I suppose the GABA-meds may mask the symptoms a bit, and the methadone could have slowed my CNS enough that either I wouldn't notice it as much, or to slow down whatever caused it.Fortunately, I have more training than most people do, so I'm not one to blindly take meds- but unfortunately I left my job to stay at home with the kid so my wife could climb the corporate Mc-ladder, and her insurance doesn't cover me for 2 months.hey, at least i'm not likely to die in the mean-time.Hammilton
    Anonymous 42,789 Replies Flag this Response
  • Hi Hammilton,While there might be something besides your meds messing you up (highly likely, since you had reason to get on all those in the first place) I really think that the combination of your own problems and the meds you are taking, have taken, and have gotten off of, are causing this.In other words, maybe someone else on and off your cocktail of meds probably wouldn't have exactly your responses, but YOU do. What you are on, I agree with Acuann, get online, at the sites specified, and start checking interactions. But as I said above, you might or might not find your answers there (though you absolutely need to start there) since the side effects you are getting might be specific to something about you.Next, write out a time chart for the past two years, and on the top, write what meds you were taking (put a line along the time, and stop the line when you weren't taking it) and on the bottom, write the symptoms and successes (write when something hurt, but also write when something was feeling better, etc.) and include when they started, stopped, changed.When you are done, you will have a complex chart, to be sure. But you ought to be able to look at it, and see if there are any clues to what causes you trouble, and what helps you. Sometimes, getting OFF meds can be as dangerous as getting on. Sometimes one med may be helpful, but when another one is added, the side effects get you.Since you don't have health insurance right now, and you are spending a fair amount of time awake in bed, you can do this: you have time. And judging from what you wrote in your first post, you have the mind for it, too.Oh...the reason I said 2 years, rather than a year and a half, is you need to have something of a baseline, including the time before you started getting medicated for the peripheral neuropathies. You were probably on other things, for other problems then, too. And if 2 years back isn't enough, keep adding 6 months back at a time. There will be a pattern there, somewhere. And when you find it, you'll be better able to know what works and what doesn't!Finally, if you need to, go to an emergency room! But don't keep getting on and off meds without getting this chart down on paper first. Without being able to chart out your history, you are ******g into the wind, if you know what I mean. :)Good luck,Shula
    Anonymous 42,789 Replies Flag this Response
  • you are describing some of the sx of ME go to www.ahummingbirdsguide.com it is a neurological disorder that affects several systems in your body go to symptoms page write down how many you have...take info to Dr. if you beleive it's what you have...good luck and let me know what you think of the site...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • I feel as if I tripped into a bad movie....I am 46..I have had muscle twitching since September, I felt it was related to the steriods I was taking for an Auto-amune (Sp?) disease in my middle intestine (receintly diagnosed).. Then in January my arms and legs started going numb (not a strong numb, that would keep a person from functioning) I went to the doctor again because I was having trouble sleeping, he prescribed something that worked for two weeks then something that didn't for two weeks (I needed to sleep, & this wasn't happening for me). I did tell him I was feeling numbness, he thought it was possibly related to the sleeping meds...The numbness became stonger, I felt it sweep over my body core, my head, face and throat bothers me a bit..I also have spells of exhaustion with a sick feeling, especially if I have had a long day..I finally went to a neurologist who sent me for a MRI, the MRI doctor suggested I have an enlarged pituitary (tumor), but otherwise I am fine. The blood test that I had taken showed a lack of B-12. The internist gave me a shot and sent me to a rhumatologist and an endecrinologist and a sleep specialist. The rhumatologist said I had fibromyalgia but it is not associated with numbness. The endecrinologist (who was extremely rude) said there is nothing wrong. The sleep specialist said I had apnea, I am still waiting for contact from c-Pap people. I still don't know what is wrong with me, I guess it wouldn't bother me so much if I didn't feel so bad. The doctors have ran all of the bad tests and thankfully they have all turned out negative. I am on Gabpentin 900mg everyday as well as sleeping meds every night. They have suggested I go up to the neurogists at the university. My doctors have all said they do not want to see me again(with exception to my internist), my internist has stopped looking for the problem as well. So I continue searching myself...wondering if it has something to do with early menopause or back related stuff...oh yea the MRI people said I had malformed disc's in my neck and a very small protrusion of fluids at c5, everyday is an adventure, I am thinking of getting myself off the neurological meds and see what happens.....
    Anonymous 42,789 Replies Flag this Response
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