Medicine that works for me

Information about how to manage or reduce the severity of BFS symptoms

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Medicine that works for me

Postby jCherie on September 4th, 2003, 12:35 am

In short, my symptoms developed in 10/01 following an infection (coincidence? unsure). I have had various tests and have seen a few specialists. I am convinced I have BFS, and it was the opinion of one of the neurologists I've seen. Anyway, I have been taking Nortriptyline for appx. 5 months which has been the best management for my symptoms. I would say my twitches have decreased by about 60% (though I still have them daily) but the pain and discomforts throughout my body as a whole has decreased by about 85%!!! I haven't seen anything about this medication the few times I have scanned this site. I am wondering if anyone else has had any success with it. I took Neurontin, prior, but had to discontinue due to a serious allergic reaction I had in the first few weeks of use. I believe now that Neurontin wasn't what caused the reaction, but my MD had me discontinue as a precautionary. I would be glad to discuss my experience with this condition. I would like to talk to anyone with experience taking Nortriptyline. I know this medicine works because when I decreased dose by 10mg. after about 3 days the symptoms returned. My hope is to find another way to manage symptoms without use of medication as I plan to have children some day.
Last edited by jCherie on September 5th, 2003, 9:32 pm, edited 1 time in total.
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Postby garym on September 4th, 2003, 9:57 am

Jcherie,

I'm just curious, were you taking one of the following antibiotics to fight your infection or any other problems prior to onset? They are: Cipro, Levaquin, Floxin. Think hard about it, I feel there is relationship for some of us to these drugs. Especially those of us that have painful joints/muscles and fatigue, in addition to the twitching. My trouble started after i completed a seven day course of cipro for a urinary tract infection, that I didn't have!

Gary
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Postby Arron on September 4th, 2003, 10:58 am

Gary, we did an antibiotic study about 2 years ago on the original web site for AboutBFS.com and it came-up totally inconclusive. I had the same thoughts, that an antibiotic started this "syndrome", but there were just as many people with twitches that hadn't had any medications in years compared top the other half that did before the symptoms started.

That went along with the theory that a virus caused BFS, and again, there was about a 50/50 split between people that had a viral infection (cold, flu, or whatever) just before their symptoms started. What we came up with is that colds and general illnesses run so rampant and allergies are pretty much a constant in people's lives these days that there is a large percent of the population that has seemingly pertepual colds, flu's, allergies and so on, and that is why it "appears" that a virus could have been the culprit to the onset of symptoms.

The same thing for the Herpes theory. Hell, 1 out of 3 people have it as a general rule of thumb, and proibably more than that, because most all kids get Chicken Pox and have cold sores at one time or another, so saying that Herpes could be the cause was like saying drinking sodas was the cause. Everybod has that in common, just as most people have the Herpes virus in common, whether they know it or not. So that theory was kind of "shelved" as well. keep looking though. It's new ideas and new looks at old ideas that make the difference.

As far as medications go to aleviate the symptoms, Morphene makes the symptoms go away, smokingh a big fat doobie makes them go away, drinking a 5th of Bacardi does this as well as do many other things, BUT what is actually happening, and it has been proven a few times, is that you just don;t "notice" the symptoms while you're on these things. Especially meds like SSRI's. You get so calmed down and so unaware of things around you that even while you twitch, you simply don;t nmotice them.

It's kind of like saying you need to have a few beers before you can play your musical instrument with "feeling" and better than you normally do. Well, in your mind that's true, but what is reality is completely different. Just like no feeling or being "numb" to the twitches and other BFS symptoms, a musicician also doen't "notice" all of the mistakes he normally makes. It isn;t that he is playing any better at all... it's just that he isn;t in tune to his mistakes anymore. I was a recording engineer / producer in Hollywood and SF for 14 years and I can tell you without a doubt, that this is how it goes. The same analogy goes for BFS.

When I drink, (as many other's have stated as well), it appears that my twitching goes away. When I take an Ativan or valium, it appears that my twitches go away. In reality, what is happening is that you are so calm and un-tuned to the twitches, that you just don;t notice them as accutly as you did before you took the medication.

Also, we all know that stress and anxiety feeds these twitches, so ANY antidepressant or SSRI will "seem" to aleviate the symptoms BECAUSE you have calmed down, are less anxiuos and less tensed-up. Most of the pain from BFS is caused because of muscle tension. When you aren't so uptight over your symptoms, you tens to not be so tensed-up and low and behold... the muscle pain subsides a little as well.

Trust me, I've been following this stuff with LOTS of other people and it pretty much goes like that. That's why we start with a little twitch, then we look up "twitches" on the internet and find out about ALS, which at that point sends our minds into a frenzy, we tense-up and freak-out and guess what? Our symptoms skyrocket! We twitch all over the place and REALLY freak-out. Then we end-up here, and start to calm down. Once we start top calm down, the symptoms subside a little as well. Some days we get flare-ups and our minds start to "wonder" again, and then things escallate all over again, but once we calm down and take our monds off of what we are doing, (obsessing over these twitches and the fear of having ALS), then things start to calm down yet again.

This is also why peole take breaks from this site. Once you start to not think about the twitches, they "seem" to subside, but if something triggers you to get all freaked-out, such as watching a TV show about someone with ALS or something, then it all starts over again. There;s definately a psycho symatic thing going-on besides the physical thing that at least helps trigger the symptoms, which is why there is a hard core group of us that believe BFS is caused by a natural body chemical, because when you are all worked-up, your body produces and releases all kinds of chemicals and these chemicals seem to increase the occurance and duration of the twitches and overall symptoms of BFS.
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Postby Jenn311 on September 4th, 2003, 11:28 am

Great post Arron! My nuero said that adrenaline can cause you to twitch when produced in excess amounts...she said it is a powerful neurotransmitter. Goes along with what has been discussed before.

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Postby garym on September 4th, 2003, 12:52 pm

Arron,

I appreciate the time you take to reply to all of our questions. Your are such a help, your BFS in a nut shell post was the first real relief from my original A%! scare and all the anxiety associated with it. As far as the cipro and a connection, I was curious if you have read the cohen report that can be found on http://www.geocities.com/quinolones/. I'm sure you have as i originally found the link here, but just in case. It was striking to me how many of the symptoms I have that match those linked to the drugs. At the same time, I try to avoid that site and stay here. I don't need anything else to worry about right know. However, I have started avoiding foods treated with that class of antibiotics. The people on that forum are convinced it makes their symptoms worse.

As far as medicine, i'm back on the trileptal (anti-seizure), at a reduced dose. So far, it hasn't really helped much. It has seemed to reduce some anxiety so i'm going to stick with it a little longer and gradually work my dose up. Just in case it actually helps. I will keep everyone here posted.

Jenn,

I definitely think that my conditions worsen with adrenaline. Every time I get worked up, start producing adrenaline my twitches and muscle pain/fatigue fire up.

I guess i just need to relax, and remember that this is benign.

Thanks for the info. Gary
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Postby jCherie on September 4th, 2003, 11:31 pm

Hi garym-
I am not sure of the name of antibiotics I was taking at the time my symptoms began. I don't think it was any of the ones you listed because it didn't ring a bell. I don't think, from talking to my doctors, that the medication caused this condition, but I must admit I have avoided taking antibiotics since then. The infection I had was from an ingrown toenail. The pains started in the opposite foot which I attributed to the way I was walking due to the infection of my toe, however, about a week later I had a major, ongoing twitch on the side of my hand which over the period of about 3 weeks became widespread, throughout my whole body and the pains developed too. I couldn't tell what the pains were coming from. Some felt like my joints, others like my muscles, and others like nerves. It took a while to adapt to living with this but I am thankful it is benign. I am also very thankful that I found a neurologist that, though couldn't definatively diagnose a condion, has offered relief from the symptoms. They don't know why Nortriptyline works for these types of conditions but I can except that :?
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Postby Arron on September 5th, 2003, 2:21 pm

Garym, I've seen those reports, but there are many other's with very similar symptoms and side effects to BFS as well, such as Lyme disease and even MS. If you read the symptoms of MS alone, you would swear the whole world had it to some extent.

Also, keep in mind, I didn't say that it was impossible for BFS to be caused by antibiotics. I just said that so far it has been shown to not be conclusive and that it just didn't pan-out. But every time something gets re-looked at, there can always be a new discovery. Remember how Penacillan was discovered? It was an old experiment that was accidentally left behind (after being found to not work) and when it was re-looked at, a new discovery was made. Worcesteshire sauce was exactly the same way some 7 years later, as was cold fusion some 10 years later, which has been found to be true once again.

BFS might have an answer sitting right in front of our faces that we just keep overlooking. I don't know. It never hurts to re-look at old ideas though, so keep the thoughts coming, OK?
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Postby garym on September 5th, 2003, 2:41 pm

Arron,

I agree that there are so many possibilities as to a cause for this problem. I only hope that there are people far smarter than myself looking for an answer. I'm also caught up in the thought that many bad things come from ADR's. I wasn't two months ago. As far as MS, I don't even want to go there, I'll be self diagnosed in an instant.

Gary
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Postby garym on September 5th, 2003, 2:42 pm

Arron,

I agree that there are so many possibilities as to a cause for this problem. I only hope that there are people far smarter than myself looking for an answer. I'm also caught up in the thought that many bad things come from ADR's. I wasn't two months ago. As far as MS, I don't even want to go there, I'll be self diagnosed in an instant.

Gary
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