My Story, My Solution....I hope

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My Story, My Solution....I hope

Postby Cutte on December 12th, 2004, 4:30 pm

I've been twitching for approx 6-7 weeks. Like many of you I never had any symptoms that would suggest BFS was on the horizon. I tried to retrace my steps to determine what I was doing or had done to cause them. The only thing I could reliably say that was different was starting birth control pills. As a hypertensive, I knew that I was on shaky ground taking them (contraindicated for people with high bp), but with my doctor's ok, I did it. So, for the three weeks prior to the start of the twitches I was on a bc pill and taking a hypertension medication-diovan hct.

I saw my PCP the same week the twitches started, she thought they were benign and it was the first I heard the word fasciculation. But, she still wanted me to see a neuro just in case. She also thought I should discontinue the bc pills as well. When they first started I was twitching almost constantly-and they were quite intense. Also, I had that weird buzzing feeling on the bottom of my feet and on my calves. My legs felt stiff when I walked. Also, it felt like my heartrate was elevated as well. But, unknown to my doctor I discontinued the Diovan too.

I saw the Neuro almost four weeks ago and he performed a myriad of neuro exams many of which I was familiar with from reading sites on the internet-like Babinski's reflex. He told me definitely not ALS. But, since I had pain in legs and some tingling in fingers he wanted a brain and cervical MRI. Lastly, he wanted a blood workup. A week later the results were that everything was fine. A true relief.

For three weeks, I noticed that the twitches weren't as frequent nor were they as intense. Also, that buzzing feeling didn't happen so much. Don't get me wrong I still twitched but not anywhere near the severity of when this hell started. I thought I was going to lose my mind in the beginning. :shock:

Well, here is where the story get interesting. My PCP called to follow-up with me after the Neuro visit. I confessed that I stopped taking the Diovan, she chastised me and instilled a fear that I could have a heart attack by abruptly stopping the med. So, under feelings of guilt I took it that night. Now, I don't know if this is my mind or what, but the twitches came back stronger and more frequent. Needless to say I have stopped taking all the meds all together and I am back to the point I described before. They are still present but not anywhere near as bad.

I can only hope and pray that maybe over the next months I will continue to get better. I believe one of these meds or the combination of both was the culprit. This is my story, I hope it helps someone else. :?
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Postby eleven on December 13th, 2004, 1:51 pm

i find your post particularly interesting because you noted the elevated heart rate. at the beginning of my BFS, i experienced the same sort of tachycardia, as well as the feeling that my pulse was bounding. my GP sent me for a MRA (Magnetic resonance angiography) of my head because I complained of the fact that my entire head was pulsating; I could literally count my heartrate without touching a pulse. My MRA, as well as MRI, were both normal. the pulsating subsided for the most part, and my cardiologist attributed it to anxiety. hmmm.
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I also had some hypertension issues....

Postby lots of girls here on December 13th, 2004, 3:59 pm

My twitching began just as I was weaning off my high blood pressure medicine. I had the loud head pulse that you describe. It was sort of a swishing sound that got louder and softer - usually loudest at night while laying down. It is completely gone now as is my high blood pressure. For 11 months prior to the twitching I was on blood pressure medicine because I had severe post-partum pre-eclampsia that caused high BP and some congestive heart failure. It took 9 months for my heart to return to normal and I was able to go off meds. HOWEVER, the whole heart thing turned me into a hypochondriac. As I was weaning off the meds and nervous that my blood pressure would skyrocket - I started with the twitches!!! I guess I traded one evil for another but anxiety is definitely the common denominator (I was having panic attacks that I thought were "heart" issues when in fact I was healing according to my cardiologist). Instead of worrying that I would go into heart failure I began to obsess about the ALS. I'm now 6 months 1 week into the twitching with no weakness and trying to relax. I think that going off my meds increased my heart rate (it was a beta blocker that had been lowering my BP & heart rate) and my anxiety increased as well possibly causing the twitches... Who knows but I wish they would just go away....
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hypertension

Postby eleven on December 14th, 2004, 8:23 am

My cardiologist and my GP, as well as my med student husband, all said that I did not have hypertension. However, just as you described when laying down, my head pounded with pulsing. My temporal arteries would feel enormous when I touched them. My cardio said I was fine. And believe it or not, all of that sort of disappeared. weird, huh? My cardio even did a Carotid Doplar ultrasound of my carotid artery to check for blood volume etc, and aneurysm. the doplar was totally normal. How this relates to BFS? I am not sure, except for the fact that my twitching started at the exact same time.
The eagle never lost so much time as when he submitted to learn of the crow -William Blake
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Pulse

Postby Cutte on December 14th, 2004, 9:37 am

I had that feeling to that the veins/arteriens in my neck were pulsating harder than normal. I was convinced something was wrong but then when I touched my husband's neck his fel the same. But, I know for sure that my heartrate was elevated because when the twitches were at its worst, my pulse was approx 112. Now it's averaging 100-and that's not much better. I believe it is all linked together.
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Postby Stephanie on December 14th, 2004, 1:50 pm

My mother had that also, where her temporal arteries got huge. There is a condition where that happens but I forgot the name of it.
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Postby eleven on December 14th, 2004, 3:06 pm

stephanie. i think the condition you are refering to might be temporal arteritis. my GP considered this with me, but then the cardio. ruled it out.
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Postby Stephanie on December 15th, 2004, 3:01 pm

Yes, that's the name. Glad to hear you don't have it.
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Postby LeeNC on December 15th, 2004, 8:28 pm

Wow, I have to comment on this thread.

Off the top of my head, I can't come up with the chronology (because I'd really rather not think about all the bad stuff). But I think my trips to the doctor for "vibrating feet" and "racing pulse" were just months apart. I really never thought they were connected, til now!

It would be hard to prove the connection between BFS and tachycardia, however, because racing pulse is such a common complaint. After I had numerous episodes of tachycardia over many, many months, I did enough research to comfort myself that everyone has numerous irregular heartbeats - as often as once per minute we have a skipped or double beat. For instance, I was waking up in the night with an uncomfortable "feeling" that proved to be a heartrate of 120 bpm or more (but not super-fast, like 200). This tachycardia would last minutes, sometimes many minutes, before settling down. I attributed that to a significant life stress, and eventually these episodes kind of faded away. (Had an episode just a few days ago, however, at work(!), after many months of relief.) There's atrial fibrillation (common, harmless) and ventricular fibrillation (more serious). I chalked this up to stress-induced atrial fib and learned to ignore it.

I didn't have the kind of BFS symptoms that make a person google "twitches" until many months later. Wow, maybe they ARE connected.

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Postby Cutte on December 16th, 2004, 4:48 pm

In the beginning, I also woke up many times in the middle of the night to find my heart racing. My PCP noted it on my first visit as well. I do believe it is all connected.
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Postby mml on December 17th, 2004, 7:17 am

A month or so before the twitching started I was also haveing irregular heart beats mostly at night when I would get in bed but sometimes in the day. A ekg showed extra beats even though I could not feel them at the time my next ekg a few months later was fine I was not under any heavy stress at that time. I also had a feeling I can't describe other then to say if you could feel high blood pressure that is what it would feel like my pressure is fine though and I know you can't feel if it is not it is the only description I could come up with. I often wondered if they were related to the twitching at all.
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Postby eleven on December 17th, 2004, 11:49 am

I am so intrigued to read that others also experienced the cardiac symptoms prior to or during BFS. I believe that magnesium levels, and calcium levels are both connected to cardiac symptoms and muscle symptoms. Hmmm. When all of this started- on my first EKG , my doctor noticed some strange wave, which he said often indicated low magnesium levels. A later blood test for magnesium indicated that my levels were normal. But then I have read that blood tests for magnesium may not be sensitive enough.
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Postby Cutte on December 17th, 2004, 3:15 pm

Here's another thought along that thread. I read on the internet that birth control pills deplete the body of vitamins and minerals. So, maybe when I was on the pill it depleted the magnesium and calcium leading to the increased heartrate and twitches.... :?:
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Update to this post

Postby Cutte on January 29th, 2005, 11:43 pm

I felt I had to update this post that I wrote approx 6 weeks ago. I now firmly believe that the cipro, taken one month prior to the start of my symptoms, caused my bfs. While I still believe that the Diovan makes the twitches worse, I no longer believe it was the source.

I still hope that my story, with this recent amendment, helps someone... :wink:
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Update to this post

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