Afraid I can only manage 23 years!

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Afraid I can only manage 23 years!

Postby pianola on March 13th, 2004, 4:31 pm

Dear Bee-eff-ess-ers,

Since I just now registered, it seems as though I ought to let you know who I am, and why I am here. I am very pleased to have found the forum, and I look forward to dipping in to all the posts.

I am a 55 year old classical musician, with quite a busy life. I specialise in pianolas, and I am quite physically active, not least since I have to transport all my concert stuff myself! I have never smoked, never done drugs, but I have drunk alcohol moderately, particularly red wine. I have had what I suppose is BFS since August 1981. I guess it has been fairly standard, if such a description can be applied to this condition. Like everyone, it seems, I started out scared, and I have come to live with my symptoms. The twitches have been everywhere, but everywhere, and the generalized tremors and aches come and go. Years ago I used to get what I reckoned was visual twitching, in the form of wild kaleidoscopic patterns, usually as I was dozing off to sleep, or waking up. Oh, and clicks and buzzes in the ears of course!

Overall, I have found it easy enough to live with BFS, except in two specific instances. Firstly, the aches associated with general tremor do sometimes make daily life more of a challenge. Over periods of weeks or months they bring on fatigue and a lack of lubrication in the joints, which crack away and make bending limbs quite difficult. But they do eventually go!

Secondly, and only when the tremors are centred around the upper part of my torso, and my upper arms, they can bring on adrenalin rushes or even make my heartbeat go completely wild. The adrenalin leaves my brain calm, but my body fearful, if I can describe it in this way, and it makes my heart roughly double in speed. I'm used to this, and it is more irritating than worrying, but it does lead to breathlessness, and is a real nuisance if I am in the middle of some public event.

Being a musician, my heartbeat has occasionally resorted to doing a tango. This has only twice lasted longer than, say, fifteen seconds, but on both these occasions it went on for several hours. Strangely enough, since I am certainly no hero, I found it didn't frighten me nearly as much as my friends and the doctors involved, and in the end, after six to eight hours, everything calmed down. The most recent occurrence was last November in Germany, in the early hours of a day when I had a very big concert. You might think it had to do with nerves, but I'm used to concerts, and they don't worry me especially. It's far more likely that good German beer the night before exacerbated the condition, although I have never been a particularly heavy drinker.

I am now teetotal, probably for life, which does have many advantages, or so they tell me! In general I would say to anyone just starting out, that you are very lucky to have found this forum, which clearly provides a magnificent service, so why not look on the bright side - you'll have a fascinating condition with which to impress your friends for years! But I'd be grateful for feedback from anyone else who has had weird heart rhythms as a result of BFS. I am reasonably sure that the tremors are to blame, and not some other hidden condition.

Regards to all,

Rex the Pianola
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Postby marieclare on March 13th, 2004, 5:44 pm

I get heart twitches and palpitations ALL the time--They have been checked out and i am told they areBenign--what else is new---so i will live with those too!! Have you ever tried any medications in 25 years/!!
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Postby pianola on March 13th, 2004, 6:17 pm

Not too many medications, really. For years my doctors told me I was stressed, or one even said I was a perfectionist. In other words, he didn't know what was wrong, so assumed I was bringing it on myself. He went on to become the President of the British Medical Association, and even a member of the House of Lords, I think!

In Germany last November, I thought I should be sensible, so I got a German doctor out of bed at 4.30 am in the morning. He checked my pulse and told me I had an irregular heartbeat - I had actually worked that one out. He stuck four acupuncture needles in my face, which did absolutely nothing as far as I could tell, injected me with something coloured blue, I think, and gave me twelve beta-blocker tablets. He charged €160 (about $200), smiled blandly and left my life for ever. I reckoned the symptoms would subside of their own accord, which they did by about midday.

I should go back to see my own doctor, but he is fairly sceptical of BFS, so I'm grateful for this website, and in particular for your observation, Marieclare. It's good to know that involuntary muscles can also be affected - I suspect the acid reflux that I get from time to time falls into the same category, but that is easily treatable.

My regards to Colorado - I changed planes at Denver in 2002, so I've probably twitched a few times in your state.

Rex the Pianola
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heart racing

Postby sdibble on April 2nd, 2004, 10:12 pm

I'm also a new member here and would like to say that just before I experienced all-over body twitching I had a catheter ablation on my heart for SVT(supra ventricular tachycardia). This sounds very similar to what you described. I don't feel that my heart condition (which is now considered to be cured from the ablation) is connected with the twitching except that it was a contributing factor as far as the stress that I had just before my other symptoms started.
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Greetings from another Rex....

Postby RexM on April 4th, 2004, 2:00 pm

Nice to "meet" you and hear your story....especially your long experience with what sounds very much like the same symptoms I have been experiencing for only the last seven months now. That is something from which us "newbies" can take some comfort.

I am recent with BFS, but have long had heart palpitations, and on two occasions years prior to the fasciculations, have had a racing pulse for an extended period [treated with Beta Blockers for years now]. So, it isn't necessarily connected to BFS, but as I have discovered with another symptom [pain/sensitivity in the bottoms of the feet] this weird condition does seem to cause a variety of "non-standard" symptoms. I guess if it is a "hyper excitability of the neuro muscular system", the nerves can produce lots of different sensations.

Thanks for your story.
PS, Although I live in San Diego County, I used to travel to London on business frequently, and have missed that regular contact since my retirement.
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Rex

Postby Katie on April 4th, 2004, 3:55 pm

Hi Rex,

Thanks for your story. Yes, this is a great site. It saved my mental sanity last year, when I thought I had MS, ALS, or some other bad neurologic disease.

We have a couple of things in common. I don't have any heartbeat issues, but I do have acid reflux also and I have also seen that kaleidoscope kind of thing with my eyes. It only happened once; I was lying down during the day and I thought I was going to go blind. The visions came from the outside of the vision of my eyes and kept increasing and building into the inside. At one point, I thought -- that's it -- I can't see anymore -- and then it went away. The whole experience lasted about 5 minutes. I felt like I was looking into a kaleidoscope -- the strangest thing. It only happened once. Never heard anyone describe it the way you did -- kaleidoscope -- but that's it perfectly.

As for the acid reflux, interestingly enough ... mine is not very well controlled. The ppi drugs [Nexium, etc.] don't seem to help it. Get this one: After lots of tests and doctor visits, I was told that I may have this condition called "sensitive esophagus" which has something to do with the nerves in my stomach. It's a foul-up in the wiring between my brain and my stomach. There's not a whole lot I can do for it -- other than take anti-anxiety meds and really watch my intake of fats especially [it really makes it flare] -- but I wonder if it isn't connected somehow to the nervous system issue that I have with BFS. As with BFS, not all doctors are on board with the "sensitive esophagus" diagnosis, either ... so there really isn't anyone I have found to try to connect the dots with me.

I wanted to ask you -- in all these years, have you ever had any "perceived" weakness? In other words, you're functioning fine, and your muscle control is okay, but it just "feels" weak? I've had an attack of twitching and tremoring in my left forearm and hand for a # of days and today it feels just darned weak. I'm lifting things okay, and it's strong when I test it, but it's really concerning with the way it feels.

Thanks for any of your thoughts.
Katie
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Postby kim on April 4th, 2004, 4:35 pm

I have had racing heart, skipped beats, weird flutters, and other strange heart related feelings for years. I was under so much stress with BFs that it seemed more prevelant at that time. I am sure there is some sort of connection, but I think it's more stress related.

I got the kalidescope thing too! Pretty freaky, but in a strange way it was kinda cool!

I think those strange heart things are very common. Not just BFSers but tons of people get these sensations. We just tend to dwell on them more.

Kim
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