deneb

Several years ago I read about Stevie Nicks' (Fleetwood Mac) horrible nightmare with trying to kick Klonopin which she had been given during a bad, long bout with CFS, or so she said. She had quit several addicting drugs in her life, but said Klonopin was the worst and hardest of all drugs she had to kick (even in a rehab center!). She had also gained about 60 lbs from the drug, which is one of the reasons I think I have gained as much weight as I have, plus the lack of proper metabolism. This, of course, was after I was addicted to Klonopin. I had gone from the one mg that had originally put me to sleep to 6 mg. per night over a year's period. I have slowly weaned myself down to 3-4 mg per night now.

My warning is this. Although I still take it and cannot go without it for more than 24 hours without starting to get withdrawal symptoms, I did have it taken away COLD TURKEY by a witless doctor. I did not sleep, eat, nor do anything requiring brain power, held for dear life onto my mattress at night, had horrid herxheimer effects, my hands and feet would go flying in the air as though I had CP and without any control. I went through 10 days of hell, frying then freezing, lost 14 pounds, looked like death warmed over, could not think of anything reasonable, and went to the toilet every 15 -30 minutes. My speech was quite slurred. Once I did return to the doctor, I had already collapsed to the floor at least twice, had my pulse go down to 40, and by the time his nurse took my BP, it read a lovely 55/40, twice. The doctor even took the BP himself, not believing the results.

Finally, after arguing with this moron of a doctor, he asked me to stand and check my gait and hand tremors. As I was walking toward him, my right leg began to drag. Then my right hand turned in, as did my arm against my body. I couldn't walk straight and I started having a stroke right there and then. He jumped up and down and said, "what is this" literally! He was white as a ghost. He was calling the hospital (a good 30 minutes away STAT) when I somehow reached the phone, tore it out of his hands, and stated very calmly that the wasn't going to finish killing me. I had him write a quick prescription for Klonopin......was in a hunchback position with all the dragging and blood red eyes...hanging on a grocery cart, while my husband went to get the script filled. From a pharmacist who had never wanted to fill it (his own personal thoughts shared with the doctor were the ones who almost killed me, small town, old-time thinking)...and it was filled within one or two minutes. I took two before leaving the pharmacy (which I'm sure saved my life, with my husband holding me up).....and somehow got to our home, still having the stroke. I could feel the electrical nerve pulses going from my brain straight down my right side and back up again for nearly an hour. But I knew the Klonopin just might save me....and it did. I came close that night, but since, have never run out of Klonopin, except maybe one day.....and always convey what happens if I don't take it to any doctor who looks askance at my request. After the story, I've never had it refused to me.

It does help a great deal with my anxiety, which is what it is prescribed for......but has long since quit putting me to sleep. I take it for fear of anything close to that stroke I had coming to me again. I want to get off of it, but will do it only under a rehab program and slowly weaning myself off. I have tried that before....getting to just a half tab a night (1/2 mg), and then the mental and physical withdrawals started slowly, and I needed medical intervention to deal with the effects and not have another stroke.. I intend to either check myself in or have a psychiatrist at a phone, ready to intervene if I should try to get off the drug. It can kill you.......if you try it cold turkey, even after taking it a fairly short time.

It was a good drug for me the first year or so, but after that, has become an addiction I wish I'd never gotten. It is recommended highly for CFS/ME, but this is my warning. If you must take it, be SURE to find out how you can take it, if possible, without this very addicting nature taking over. I will let you know if I can get off it and how successful I am. I'm not looking forward to it. I am only telling you this as I have two CFS friends who are in the same boat. They can't get off it either. One has severe herxheimer effects just 12 hours after missing a dose. So know what you're getting into taking this drug.

The only positive thing that came out of my stroke, was that a nit-witted doctor who was very arrogant came close to losing a patient that day....and when his nurse put down his diagnosis, for the first time put the words, "chronic fatigue syndrome" instead of just Chronic fatigue. I would have sued the guy if he hadn't had such a small practice, but I do think I put the fear of being ****y without knowing about an illness into him and his staff, and found that he had told the state he was an expert in CFS.. I hope he learned his lesson, and I did write the state, explaining my cir***stances and how I'd almost lost my life to this guy, who knew absolutely nothing about my illness..
..
Lesson learned. BE VERY CAREFUL with Klonopin. It's not a big deal while you're taking it (weight gain was what I noticed most, but a little fuzzy head), but it is a very serious drug. Hope all that take it take notice. Suzq in Vegas, where we might get a flake or two.....wait a minute, we already have lots of flakes here....LOL : )

ahaber5598

I took Klonopin for a year when I was first dx with CFS and going through a
period
of extreme stress. It was prescribed by a psychiatrist who kept a very
watchful eye
on me re everything. I took one to three mg. I stopped it gradually over a
three month
period with no problems. I take it occasionally now during periods of severe
anxiety
but feel it has lost it's effectiveness. I have been told it can be severely
addicting
but that was not my experience. I never take more than three mg and that might
be the secret. And I was closely monitored. My doctor would have figured out
very
quickly if I was escalating the dosage. Also, I know him well and would have
told him
of any side effects, etc. Many drugs are potentially addicting--if I know I'm
on one,
I make sure it's properly prescribed because once addiction happens it has a
life of
it's own--the patient is vulnerable and cannot help oneself.

dashadow07

Hi Suzq -

Heard you got more than a "flake or two" in Vegas!! I live in Michigan and
we're still getting rain!! Enjoy your snow!

I wanted to share that I have been taking Klonopin for a year or two. Small
dosage - 1 mg at night. BUT I recently had some bloodwork done and one of my
liver enzymes is up. Alkaline Phosphatase. Further bloodwork indicates that
it is coming from my liver. (It can come from the bones or the liver - both
bad outcomes!! ) I read in a PDR that Klonopin CAN elevate these enzyme
levels. I'm going to have to have more testing, but I also need to wean off of
the Klonopin. My "medicine manager" gave me smaller doses of Klonopin so I can
wean off of it. And he told me to up the dosage of my Ativan by an equal
amount that I cut from the Klonopin.

After 7 years of this dd I thought my meds and I were doing pretty good. Now
this. The condition I might have can come from ulcerative colitis. I read
that the condition is common in people with IBS or ulcerative colitis. The
last test the numbers came down, but I'm still very concerned.

All of our meds have to go through our livers, and that is the largest organ in
our body. It's the one that takes the first "hit" of all this stuff we ingest.


I'm going to try to set up an appt for an MRI after the first of the year to
see if they can figure out what's going on. I don't like this black cloud
hanging over my head!!

Wishing everyone a Happy New Year.

Sharon. :]

ahaber5598

If you have ulcerative colitis you should see a board certified
gastroenterologist. It is
a serious disease. Elevated liver enzymes often accompany it. I have Crohn's
disease and have had elevated liver enzymes on and off for thirty years. Long
before
cfs and klonopin or any other med. Liver enzymes can go up and down without
danger but should be followed. See a good gastro, soon.

ahaber5598

A colonoscopy is the definitive test for ulcerative colitis.

pcmorton

This is an interesting site and has some good info on how to discontinue
benzos (like Klonipin) safely:

http://www.benzo.org.uk/manual/bzsched.htm

Pat

dashadow07

I've read that there is a new "virtual colonoscopy" that is done with an MRI.
It is non-invasive. Only problem is, IF they something wrong, you have to have
an actual colonoscopy to have polyps or whatever removed.

Sharon. :]