Another update from a 2003 twitcher

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Another update from a 2003 twitcher

Postby MarioMangler on October 29th, 2008, 4:02 pm

Okay here is another one. This is another 2003 message board regular that I tracked down and asked about their old BFS worries. I'm not going to post her name, but she wrote a LOT on the subject. It's a long read, but you might find it interesting.


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Hi there Mario :)

Ah, the days of fretting over BFS. I remember thinking I had tourettes for a while there. I don't. It's just BFS.

I'm going to have to type a lot of information for you that pertains to the central nervous system and the like. You don't have to read it, but I feel it's a nice gesture to try and share what I've learned since 2003 when I developed BFS.

I developed BFS due to a medication, and I didn't know it until a couple years ago. the neurologist I saw, was a pediatric neurologist at the time because I was only 16. He gave me sleep deprived EEGs, EMGs, and the whole deal to rule out any kind of neurological problem. I'll be 22 years old in very early November and have learned so much - so much that no doctor or Neurologist would ever tell you.

The first thing people fear is ALS, or perhaps try to link their condition to Lyme disease and such. They seem to think that medication is to help with certain health ailments to fight pesky little syndromes and disorders as if they have a disease. While it's true that medication is necessary in most instances, in most cases, especially those that deal with the brain and central nervous system go, the medications are the precise cause of the ailments, and so we look for more medication..... which only worsens the syndrome.

I'm sure you're probably looking for a straight answer somewhere in here.

The straight and simple answer is this: Yes, I still have BFS and it varies in intensity to from barely noticable to mildly annoying, and sometimes REALLY annoying.

But I know what caused it - at least in my case, I can't speak for anyone else. When I was 16 years old and I developed BFS, I was also seeing a Psychiatrist. I kept seeking his help for anxiety, or depression, low self esteem, or whatever it is teenagers go through. I was a teenager, of course I wasn't happy! I did not have BFS at the time. Just the blues that every teen gets, you know? So he put me on Xanax, as needed, and Zyprexa, an antipsychotic.

Well, I took the Xanax for about 3 or 4 days straight, at a low dose, when I first started the Zyprexa. At the time, I was not aware that one's brain becomes physically adapted to Xanax within days. When I quit taking the Xanax on a daily basis (4 days tops) the Zyprexa was beginning to help me with my confidence and whatnot ----- until about 2 months into it.

After having been on Zyprexa, the antipsychotic, for 2 months, I began to get Fasciculations going up and down my back and into my neck. They were accompanied by tingling sensations as if I was just very uncomfortable in my own skin. With that my Psychiatrist took me off of it. But.... I've had BFS ever since.

There is good news, though: You will definitely adapt to the twitchies. I'd say 98% of the time I don't even notice them anymore. Look at people who lose their limbs. They eventually adapt, one could only imagine how horrific that adaptation can be.

So, either the Zyprexa caused my BFS, or the cessation of taking the Xanax caused my BFS.

Currently, my BFS is at an all-time high, but that's not usual and I'll explain why:

When I turned 20 years old (still had BFS, just didn't care at that point), my general physician was a Pediatriction and told me I needed to find a new family doctor because I was too old to be seen by her. My new family doctor didn't like the fact that I was 5lbs underweight. So, this new drug comes out for breast cancer, and it was said to have side effects of an extreme appetite. So he told me to take it, and I of course trusted him. Turns out, this anti-cancer medication was a powerful hypothalamus stimulant. I did gain weight, from 92lbs to 108lbs --- in 6 WEEKS ---- along with my entire endocrine (glandular) system being thrown out of whack. I was bloated, I developed cystic acne, my menstrual cycles began to occur every 3 days for months on end - - I saw other specialists to try and stop the madness. They all said it was because I was simply too thin, and put me on more medication, like birth control pills, which affect the reprodyuctive endocrine system obviously.

I then began to develop severe vertigo, Panic Disorder and nonepileptic seizures. I mean SEVERE vertigo, requiring me to hold onto things just to walk a few yards, and SEVERE panic disorder, of the grandiose variety. I'm talking waking up mortified, screaming and crying for hours on end with a vast array of weird neurological symptoms. That was not typical of me as I was NORMALLY a healthy, well-rounded college student majoring in Law and I had a job as a Humane Officer at the local Humane Society.

Other than the BFS, which at that point didn't bother me at all, I was perfectly healthy up until these events occured in late 2006.

After about 8 months of madness I told the doctors to take their drugs and shove them you-know-where. Then my menstrual cycles stopped COMPLETELY, but the Panic attacks, vertigo and seizures continued to occur.

My Psychiatrist decided to throw me on Xanax once again, only, this time, I was to take 3 big doses a day. things settled down for a few months.

After a few months went by, (and still no menstural periods), all of a sudden the panic attacks, vertigo and seizures began to worsen. In fact, I'd say the rebound attacks were at least 3-fold more severe than they originally were. My cortisol levels were high, adrenals exhausted, I developed cysts on my ovaries and I was constantly having attacks of low blood sugar coupled with blood pressure crises. When my doctors got together and realized that they polydrugged me into nearly turning me into a psychoward, they all discharged me as a patient because I had a pretty legit lawsuit against them although I didn't pursue it cause I was too busy being sick.

So there I was, off their poisons, with new doctors, and on the Xanax daily. One day, my English professor told me that I "needed Xanax like a I need a hole in my head." This was around the same time I began experiencing unexplained vertigo and rapid heartbeat (about 120 - 180 beats per minute) I started looking up the longterm effects of drugs like Xanax --- a class of drugs called Benzodiazepines, with Xanax said to be one of the worst kinds.

I experienced almost every single mental, physical and neurological symptom, including a worsening of my pre-existing fasciculations, which to me, felt so minor compared to the horrific problems I was dealing with now.

The Xanax ended up going toxic in my brain, and I was switched to another type of benzodiazepine called Klonopin, which has an anticonvulsant effect and is thought to be easier to withdraw from.

Upon quitting the Xanax, I was mentally prepared for death; I convulsed, I hallucinated, I dry-heaved, I was bedbound - at only 21 years old. It took a few weeks for the Klonopin to stabilize the Xanax withdrawals

After those few weeks, I realized all this time that every ailment I ever complained about was either caused or worsened by medication.

I was completely stable on the Klonopin by May 2008 (this year), and the vertigo/panic attacks/seizures went away completely.

But - Klonopin is also a benzodiazepine - and unless I want it to go toxic in my brain just like the Xanax did - I MUST withdraw from it.

I have been reducing my dose by about 5% a month, and of course, when I began reducing Klonopin in August, I have been experiencing withdrawal symptoms - but I am mentally prepared for them.

You see, a doctor may want to prescribe you an antidepressant, an antipsychotic, or even a "nerve pill" like Xanax to help you cope with the BFS. But my advice is please, PLEASE, please, do NOT take it.

When they say they do not know the mechanism of action of psychoactive medication, they MEAN IT. It affects one's brain and central nervous system. It alters it invariably, and I believe these drugs cause things like BFS.

However, nothing compares to the horror that is benzodiazepine dependency and withdrawal.

Benzodiazepines such as Xanax and Klonopin work on brain receptors called GABA. GABA acts like the brakes on a car that is flying down a hill. Without GABA, you have no brakes, and your nervous system becomes a runaway train.

A benzodiazepine stimulates your GABA in your brain; but, because you have a synthetic form of GABA acting as your "brakes," eventually, your body becomes immuned to it and no longer produces its *own* GABA. So, you need to keep increasing your dose....until it ultimately goes toxic in your brain, like it did to mine.

Time is a wonderful healer. Time has been good to me. So far, after abstaining from birth control and other hormonal drugs, my glands are no longer being overstimulated and things are settling down with my endocrine system.

My balance system in my brain (vestibular) which was once crippled by Xanax toxicity, is also improving. I can now walk on my own and drive my car.

Panic attacks and seizure activity is at a minimum but still present because I am in Klonopin withdrawal.

Most people would assume it'd be better to just quit the benzodiazpines cold turkey but it just doesn't work like that --- cold turkey could cause irreversible neruological damage and at high doses could even be fatal in some cases.

So I am withdrawing slowly and suffering but I'm coping and I also joined the support group at www. benzowithdrawal. com and my username there is Comisado.

Hopefully, when my body is rid of this pharmaceutical holocaust, I'll be back at college and resuming my career in the legal field (and medical malpractice will be my specialty for sure!).

All right.... well, I hope this update didn't freak you out. but, I wanted to make it perfectly clear that your medication may be your problem or at the very least, may have caused your problem with fasciculations. I did go a year or two with no fasciculations, before the doctors decided to literally inject me with steroids, hormones, anti-cancer drugs, nuclear medicines, psychoactive meds, anticonvulsants and tranquilizers.
A book on this is called "your medication may be your problem," and there are also some books about benzodiazepine withdrawal and its effects on the central nervous system, called "Addiction by Prescription," and "Worse than Heroin."

Drugs such as Xanax and Klonopin are very useful as long as they are only used when absolutely needed---you should never take them regulalrly or you become physically addicted and can go toxic, like I have.

Indeed, my neuro did put me on Xanax when I was 16 to help with the fascics, but thank God I didn't take it for any longer than a few days!

With the benzodiazpine issue aside, in my case, the psychoactive medication called Zyprexa caused by BFS, and I lived a very normal life with my BFS as an otherwise healthy young lady from the age of 16 clear up until I was 20, like I explained, when all those doctors polydrugged me into oblivion.

Please know that any drug that acts in your brain is acting on your entire body. In my case --- the Zyprexa caused the BFS, the anticancer medication caused a part of my brain, the hypothalamus, to become overstimulated, and thus, my pituitary gland in my brain, became overstimulated as a result of the doctors trying to correct it, and once your pituitary malfunctions --- look out --- cause it controls your thyroid, your adrenals, your insulin, reproductive organs, etc. If ONLY I had just said no to the drugs in the first place, I would not be suffering today. even some antibiotics, of the quinolone family, can have detrimental effects on the nervous system.

Just because it is prescribed, doesn't make it okay. Do your research, consider yourself blessed that BFS is only a minor ailment, and please update me on any new information you might have regarding BFS! :)

Please let everyone there know about the dangers of pharmaceuticals; let them know that they will be okay, that BFS annoyances fade with time even if the symptoms persist, and please let me know how you're doing!

Thanks for checking up on one of the "oldtime twitchers."

:)


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BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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MarioMangler
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Another update from a 2003 twitcher

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