Benign Essential Tremors

[nancyl]

Does anyone have tremors? I have had them for about 30+ years, but never bothered me as much as they do right now. It's gotten a lot worse over the last two weeks. A few months ago my doctor put me on Propanalol, I stayed on it for awhile, because anything would be better than this. The results were so slight that for me it wasn't worth staying on that kind of drug. I do have an appointment with a neurologist in Dec. One who's specialty in tremors. I have never seen a neurologist about this, only diagnosed by my PCP back in the late 70's. Just curious if anyone else suffered from this.

I tell you since last year, I am falling apart.

Nancy

[tex]

I tell you since last year, I am falling apart.

I know the feeling.

I haven't had major tremor issues, but back when I was still recovering, I did notice that I often had tremors that were serious enough to cause problems with manual dexterity. They would come and go, and they were usually much more noticeable with one hand, than the other. I decided that it was probably due to gluten damage, over the years, before I started the GF diet.

As you may know, two years ago, following a TIA-like event, a neurologist diagnosed me with Parkinson's disease, based on obvious problems with my balance, my gait, poor reflexes in my lower legs and feet, (and poor sensory perception in my feet), and a history of occasional hand tremors, (though the tremors were not present during the exam). I tried to convince him that the symptoms were probably due to years of accumulated damage to my nervous system caused by untreated gluten-sensitivity, but he had never heard of neurological symptoms being caused by gluten, , so he just blew that off. He prescribed Azilect, (rasagaline), and gave me some samples of Metanx, which is a prescription combination of large, (and balanced), doses of vitamins B-12, B-9, and B-6.

Azilect is a selective monoamine oxidase inhibitor, and about 6 months later, I discovered that I was having blood pressure spikes, due to drug interactions with an antihistamine that I took for hay fever symptoms. One morning in late January, my systolic pressure was over 180 mmHg, and my diastolic BP was around 100 mmHg, so I went to the ER. By the time I got there, it was up to 225 over 125. I stopped taking the Azilect immediately, but it has a very long half-live, and about a week later, I woke up with massive colonic bleeding, and when I checked my BP, it was very high again, (in the 180 mmHg + range). Anyway, I was bleeding profusely, and since they couldn't locate the source of the bleed, in order to save my life, they removed my colon, my cecum, and part of my terminal ileum. Anyway, if nothing else, this is a good example of how overlooked drug interactions can get way out of hand.

I could be wrong, but I'm convinced that the BP spikes, caused by the drug interaction, played a major role in the bleeding problem. It's certainly possible that I might have had a bleeding episode even without the BP spikes, because I have a family history, (on my father's side), of colonic bleeding issues, but there is no question that BP spikes can trigger bleeding problems in individuals who are vulnerable. Anyway, that's the bad news associated with the Azilect, which was prescribed for a disease that I did not believe that I had, at the time, (Parkinson's).

The good news is that I took the Metanx suggestion to my PCP, and he wrote me a prescription for it, (this was back at the same time when I started taking the Azilect, (2 years ago). The Metanx improved my perpheral neuropathy so much, that after taking it for about 9 months, I convinced another neurologist that I do not have Parkinson's disease. I've been taking it for 2 years now, and about a year ago, my hay fever symptoms started disappearing, and I haven't had any hay fever symptoms at all, in over 6 months, now. My peripheral neuropathy is also much improved. I still have balance and gait issues, but my lower leg and foot reflexes are much better, and I haven't noticed any tremors, since I've been taking it.

So why am I telling you all this? Because, IMO, if you have certain additional symptoms, there is a very good chance that if you see a neurologist, he or she may well diagnose you with Parkinson's disease, based on your neurological symptoms. It will depend on whether or not you have any other neurological symptoms, besides the tremors. Of course, there is still a chance that I may develop Parkinson's, because the disease can be slow to progress, for some people, so the jury is till out. However, I'm not just idly sitting by and waiting for it to develop - I smoke cigars like George Burns and Groucho Marx, (nicotine is protective of Parkinson's and Alzheimer's), and anytime a doctor points out that I really should get rid of all those big cigars in my shirt pockets, I just point out that they're part of my treatment.

My point is - someday, I hope to find a neurologist who is actually aware that gluten-sensitivity can cause neurological damage, but so far, I've been examined by 3 of them, and even though the last one admitted that she had absolutely no idea what might be causing my symptoms, she refused to acknowledge that they might be caused by gluten-sensitivity, (just like the others). IOW, gluten associated neurological damage isn't even on their radar, even though Dr. Maios Hadjivassiliou, (a neurologist and neurology researcher in Great Britain), proved the connection and published his findings roughly 10 years ago. At least the last neurologist who examined me, did agree to undiagnose me with Parkinson's, (though she advised me that I should make an appointment to see her ASAP, if my symptoms should become worse). They haven't, though. Since then, my symptoms have been pretty steady, and may have even improved, a bit more, (thanks to the Metanx).

Here's something to keep in mind. I never noticed that I had tremors back when I was reacting, (but maybe I was so sick that I just didn't pay any attention to little details such as that. ) When I noticed them, I had already been on the GF diet for 3 or 4 years, and I had been in remission for at least 2 or 3 years. Of course, bear in mind that we are all different, and even with Parkinson's, some people rarely have tremors, while some have them frequently, or all the time. I have no doubt that tremors caused by gluten-sensitivity would almost surely behave in the same way - some of us may rarely notice them, while for others, they may be a frequent or constant problem.

We have another member, (who lives in Great Britain), who had/has major problems with tremors, and while I'm pretty sure that her tremors are due to gluten-sensitivity, to the best of my knowledge, we were never able to convince her to try the GF diet, and she hasn't posted in several years, unfortunately, so I have no idea how she might be doing, now.

I'm pretty sure that your tremors are due to neurological damage caused by long-term gluten-sensitivity, rather than Parkinson's. If you had Parkinson's disease, in 30 years, surely your symptoms would have progressed to the point where the disease would be disabling, by now. IOW, by now, sometimes, you would be unable to move, at all, if you had Parkinson's. If you are interested in trying what I'm using, you might ask your PCP, (or the neurologist), for a prescription for Metanx. My doctor takes it himself, to improve his memory, and his cognizance.

http://www.metanx.com/

On the other hand, I would be very reluctant to recommend Azilect. It might be good stuff, but it interacts with either 525 or 625 other drugs, (I don't remember which), and many very common drugs are on that list, and my neurologist failed to mention that it interacts with any other drugs. He did warn me that it interacts with certain foods, (dried or aged foods can cause BP spikes), but one of the many drug interactions is what did me in.

Tex

[TXBrenda]

Nancy,
I was diagnosed by a neurologist with benign essential tremors about 2.5 years ago. Mine haven't gotten worse from the doctor's stand point. I can tell they are worse if i'm feeling bad, hungry, or stressed. My left hand is worse than the right. I've been GF for over 8 years now. My mother has the same thing. I can't remember what she takes for hers. It does help. My PCP prescribed me the same drug (i remember that much!) until I could get into see my neurologist. The drug made it very difficult to breath so I stopped taking it. Only time I really notice the tremors is when I have to use both hands to do something since the left is worse. Hope your neurologist can find something that will reduce the tremors. Mine said we hopefully would find a med in that class that would reduce the symptoms & I could tolerate.

Take care

[nancyl]

Tex,
Thanks for all the information and sharing what happend to you. Like you, I do not believe this is due to Parkinson's and will make sure to ask about Metanx that you are taking and make note not to take Azilect. It may be worse right now because my body is in shock from being gluten free. I'm not seeing the neurologist until Dec. so I have time to see what happens.

You brought a big smile to my face when you mentioned the cigars. I never saw my Dad without a cigar, there isn't a photo of him without that cigar. I use to say, "Dad, you need to give up those cigars", and he would answer, "but, I don't inhale, my doctor said my lungs are perfect", as he sat in such a cloud of smoke I could hardly see him. When he died we put cigars in his suit breast pocket to take with him. I hope he is still enjoying his cigars.

Nancy

[Zizzle]

Nancy,
Back when I had a bout of vertigo 10 years ago, a neurologist also diagnosed me with benign essential tremors. I've had them all my life, or for as long as I can remember my older sister exclaiming "why are your fingers always trembling?!?!" I think it was worse when I was younger, but it's very mild. You only notice when my hands are outstretched. I think my B-complex supplement helps, as does extra magnesium. I also have slightly restless legs that have also improved with the vitamins.

I haven't thought about it in a while. I just stretched my hands out and, yup, still trembling. My grandfather had Parkinsons late in life, but not the trembling kind. He had gait, coordination and swallowing issues. I hope there is no connection!!

[nancyl]

Brenda and Zizzle,
Mine is also worse when I stretch out my hands. Also, worse if I'm fatigued from doing something athletic. It was never been that bad and nothing I concerned myself with except for the last couple of weeks. It is worse. I use to take a B-Complex and should look into that again. I do take enough magnesium. I have no other issues, such as gait, balance, etc. Tonight it's a lot better than it was this morning.

Nancy

[sarkin]

Nancy,

It does sound as though it's "all connected" to the underlying food sensitivity. I have had good luck with the Bluebonnet brand of B-vitamins, (everything-free) - I take the B-100 complex. They aren't the only GF/DF/SF/etc.F brand - Solgar as well as Freeda have similar products (but this one was available). I also take 2000mcg of additional B12, and try to buy the same type of B12 that's in Tex's prescription medication, which is methylcobalamin. That form seems to be more readily absorbed. I do have some (pretty subtle) balance issues, and when I ran out and got a new bottle, I forgot that each pill was 1000mcg instead of 2000 - and noticed a difference within a week. (It was also a different brand - so many factors.)

Glad to hear your tremors improved by evening. Every symptom I have ever had is worse when I am fatigued - and the B-vites do help with fatigue, so... here's hoping this is helpful to you. My mother had essential tremor, and I have added it to my list of 'family stuff that may be connected to gluten sensitivity' - I hope this will help me catch things early (and hopefully *not* too often).

Z, I hope there's no connection, too - for both of us, to lots of things on the "family list"...

Good health to all,

Sara

[MaggieRedwings]

Morning Nancy,

So sorry to hear about the tremors and not much I can add to what everyone else has said. Not something I have had but my husband had them severely for about 1.5 years. His neurologist does get the gluten connection to the tremors so we now know of at least one who is progressive. Since Frank ate little gluten due to my diet he has eliminated his dinner sandwich - only gluten he was taking in - and he is now fine.

I really believe it has to do with diet issues.

Love, Maggie

[tex]

Maggie,

Kudos to Frank's neurologist.

It's good to hear that avoiding gluten did the trick.

Love,
Tex