Medication Caused Chronic Pain

My story is a bit unusual but not unique. Back in 1989 huge amounts of stress sent me to the doctors office. He prescribed Xanax and then Klonopin - I was on them two years and the whole time they were causing problems the doctors could not identify.

I finally carefully tapered off of them and went into a 4 year hideous withdrawal with over 60 disabling symptoms.

I have been off almost 20 years and twice now with moderate stress I have gone back to the full blown withdrawal symptoms (this time it has been 39 months with no let up) : EXTREME agitation (walk and pace most of the day) burning all over my body, paresthesias, extreme muscle cramps, insomnia, flu like symptoms times a hundred, anxiety bordering on terror and so much more.

There are no drugs to fix this ( have tried them all) so I am left to suffer. My world is 100% survival...all I do is cope and hurt 24/7. I have a wonderful wife and could have a good life.....I can 't work and am pretty much house bound pacing, squirming and crying...or begging God to kill me.

I no doubt have brain damage from these drugs and if I get too tired or stressed I am back into months to years of hell.

My wife sent me here as she thinks someone in chronic pain might understand and tell me how you face another day in total hell.

Thanks for reading

James

Hi, Raz,
I want to welcome you to the chronic pain forum of Healing Well. We're not doctors here, but a support group and although we don't give medical advice, we at least can lean on eachother while we're searching for help. And for many of us it's a question of managing symptoms, not eliminating them, so we have to use everything we can learn that's safe and legal to help.

Jim's suggestions are good. I think seeing a pain psychologist/therapist would be excellent because they can help you navigate the chronic pain road on many levels. I don't know much about these medication caused side effects, but I find it unusual a doctor would prescribe xanax and klonopin at the same time, since they're similar types of medications.

With the burning sensations you describe - and I am just tossing this out as a pure hunch - has anyone mentioned RSD or CRPS to you. (Reflex Sympathetic Dystrophy now called Chronic Regional Pain Syndrome)? A new member here just started a new thread (topic) and you also may want to google it and see if you think your symptoms fit. Again, I'm not a doctor and it's a pure shot in the dark on my part.

There may also be some things a good therapist can do to help you with the anxiety and stress. Have you struggled with any kind of phobias? Those can be helped by a good therapist who knows about anxiety, but I don't think what you're dealing with is solely anxiety - I'm not trying to say that. Just trying to offer some thoughts.

There's also an Anxiety disorders portion of Healing Well and you can post both here and there, and easily switch by using the 'quick jump' menu at the top of the page. But they may not understand as much about the pain dimension as the folks here will.

I wonder what specialists you've seen - like a good neurologist - and what he/she has had to say. Some of your symptoms sound neurological.

Hope this helps a bit.

Again, welcome to the forum.

PaLady

Hi Raz...

Welcome to the board. I'm sorry for all that you are dealing with, though. I'm glad you came here, though, and reached out to others.... I'm also glad that you have a supportive wife.

I hope you'll keep posting and sharing.
Tina

I would never deign to "prescribe," but have you given GABA supplementation a try?

A doctor favoring pharmaceuticals might suggest Lyrica (or in the past, its generally inferior cousin Neurontin), but there's another way other than Lyrica or Benzodiazepines to boost GABA levels....it's by taking the amino acid GABA itself.

This is a similar strategy to supplementing the body's natural production of Serotonin and Dopamine by taking 5-HTP and L-Tyrosine (preferably N-Acetyl-L-Tyrosine, a step closer in the metabolic process) respectively, which are precursor aminos to those neurochemicals. Rather than taking pharmaceuticals which prevent the re-uptake of those neurochemicals -- thereby boosting the levels in the spaces between neurons -- supplementation of these amino acids boosts those levels by ensuring that the brain has more raw material to make them with.

This is a more natural process, and doesn't try to circumvent the brain's self-regulatory systems, which always correct any such "artificial" imbalance. This is known as tolerance, dependence and withdrawal. I know all too much about it, having had to take myself on and off of various pain medications over the years and having to wean myself off of many other dependency-causing pharmaceuticals. Some of the least "demonized" prescription medications are among the worst offenders in this area; opiates are far from the only ones or even the worst by far.

More or less the only reason that these pharmaceuticals are prescribed instead of the relevant amino acids are that corporations can't patent a naturally occuring amino acid. So, they can't profit from it to anywhere near the same degree as some random artificially produced molecule. Every case is different, but IMHO supplementation of the problem neurochemical precursor (assuming that levels are really too low, which your case certainly sounds like -- a lack of GABA and possibly other neurochems, perhaps endogenous opiates and cannabinoids) is usually the best overall approach. It comes with little to no dependence, and tolerance is far less of an issue.

Of course it won't fix the underlying cause, but it might be a useful treatment to try. In the case of GABA, your metabolism breaks it down into a precursor which is then metabolized back into GABA inside the brain. This may not boost GABA levels in your neurons as much as 5-HTP boosts your Serotonin or N-Acetyl-L-Tyrosine boosts your Dopamine, it can be effective once you find the right dose.

If you decide to try it, please do let us know how it works (or doesn't) for you. There is no substitute for hands-on experience with things like this, and there's not nearly enough information out there about GABA supplementation. I've heard plenty of people report that it was beneficial, but the more we can all learn about it, the better.

Anniedaze, posting our history means posting about the stuff that's really happened or is happening to us. Telling our story could mean making up stuff. I'm the type of person who appreciates honesty, as I'm sure you are, so I'd rather hear about someone's history with pain.

I hope that makes more sense.

Pam

ps: if you've been using a computer for awhile, you shouldn't have any trouble finding the thesaurus as it's always in the same place...but if you do, you can always go to Google.com and search...that's easy enough.

Hi Raz and sorry your dealing with so much at one time. I am not sure I have any answers but a light went on in my head when I was reading your story here. It seems as though you were a earlybird on the klonopin wagon as a little more then 20 years ago I was just beginning to see this med come into the nursing homes and have to tell you I did not like it from the onset at least at this age grouping. One of my first experiences with this med was a very young 52 year old early onset alzhiemers patient and at this time she was still very functional but her family opted to institutionalize her for whatever reasons. She wondered constantly,sleep very little and was always wanting to smoke and drink coffee and so she was started on a increasing dose of Klonopin. Within days of tx she went from a walking most times rational and very nice lady to being bedridden and in a 5 point restraint. I recall how horrific this was for us to see and I apologize for this story being as long it is in content but I wanted you to understand and felt you hearing it in it's entiriety is important.

Her symptoms if we had allowed her to be up and not restrained were as you described. She literally screamed as if she were on fire and she bucked and fought the restraints as if she would climb the walls if released. She unfortunately lived only a short time in this condition and please dont be alarmed she was in a nursing home and not in the best of places to be treated.

Her postmortem and yes not necessary by law but family requested showed nothing out of the ordinary with the exception of the shadowy content of the dementia. I truly believe she had some rare form of reaction to the klonopin as did her Docs and most of the staff. Her family spoke to attys over the makers responsibility but I have no idea how that fared.

Again I apologize for the length of this and the fact it is a story but felt if the telling of it somehow could help you then it was worth it.

Have you in anyway researched whether this could have happened via the meds? Could it be some rare condition caused by it alone or a combo of? I recall she also had been on zanax and was weaned from one onto the other as well.

Med reactions as you know can come from many places and even taking OTC meds with prescribed ones can cause reactions. I know you may not be able to recall that long ago exactly what you were doing and everything you might have been taking but it may be something will click when you read this.

My goodness good luck to you and I sure hope you find some kind of answers soon.