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Post by lsmith on Apr 25, 2009 2:08:52 GMT
I started a new thread because I wanted to make sure there were still folks on this forum -and I'm curious why my medications seem to be completely different than the ones I've seen listed here. I've noticed that everyone here with a diagnosis seems to be male (I'm not...). I had been suffering with many misdiagnoses for years -and disregarded and treated as a case of arthritis and tendinitis for well over ten years. I have a confirmed case via muscle biopsy as of 3 years ago (I'm in the USA). I have been placed on a routine of carbamazapine and nifedipine during this time. Any complaints have and will result in an increase of these meds, so I try no to complain. Is anyone else out there on this regimen of treatment? Does anything work better or am I just progressing?
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Post by Craig Lane on Apr 28, 2009 14:29:01 GMT
Hi I must admit some suprise reading that you have been diagnosed with TAM as I was lead to believe that although it is carried by women only men showed symptoms. Pete may well correct me on this and your diagnosis also changes this.
There are folk which visit here but due to the few of us it may be quiet most times.
Welcome to our website I hope it is of benefit to you even if it is just the comfort of knowing you are not alone.
I was offered various pills and potions but as they did nothing positive I dumped em now just use anti inflamitories when I really can't cope. Fortunately I have a really high pain threshold but I don't know how long that will help. I am, as you will probably realise if you read more of our forum, the clown and deal with most things including my own downfalls by poking fun at them. Please don't be offended by me. My phylosophy is if you can't laugh @ yourself don't stop others laughing @ your expence.........
I hope you find some comforts from meeting other here who share your frustrations and troubles.
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Post by Pete on May 6, 2009 2:07:46 GMT
Welcome from me too. My thing is the medical/scientific literature and I tend to be very boring about it, so apologies upfront. Just as well we have Craig (aka Eric the half a bee) to lighten things up.
Our medications are not so completely different, just a bit different. I take verapamil, maybe the first calcium antagonist (calcium channel blocker). As you know, your nifedipine is also a calcium antagonist but a more recent one. Verapamil has a fairly general effect on muscles and blood vessels whereas nifedipine was developed because of its more specific action on the cardiovascular system. In the case of TAM, it is the general effect that we want. We are exploiting a side effect.
I have not read of the use of nifedipine in TAM. Is it doing you much good? My own experience was that it took months for verapamil to work and by then it was a fairly high dose. There are credible reports of dantrolene and diltiazem helping TAM but I had no benefit, quite the opposite with dantrolene, dangerous stuff.
There seem to be a number of different forms of TAM. The main one strikes middle aged-males and is not inherited. Another form affects both sexes and can be inherited. Of course TAM is so variable that for any statement that you can make about it there are exceptions.
I am very interested in hearing about you experience with nifedipine. I looked up carbamazapine and see that it is an anticonvulsant and mood stabilizer; does it help TAM?
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Post by Craig Lane on May 8, 2009 8:30:06 GMT
Very interesting to find that others are taking a different approach to releaving the symptoms. I guess the more folk there are out there trying different things the more chance of success in understanding this condition and how to help those suffering to live better quality lives.
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Post by Pete on May 13, 2009 12:17:08 GMT
Found this:
"Nifedipine relieves exercise-exacerbated myalgias
Authors: R L Sufit, H A Peters
Three women with exercise-exacerbated myalgias refractory to usual medications are described who responded favorably when the calcium channel blocker, nifedipine, was administered. The side effects were dose-related and prevented complete resolution of the symptoms. Three potential mechanisms of action are suggested for these effects.
Muscle & nerve. 01/11/1984"
Would be interesting to know the effect of nifedipine on TAM.
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Post by lsmith on Jun 18, 2009 23:19:29 GMT
Sorry it has taken me so long to find my way back to this forum. I switched computers and that was a nightmare...
My story is actually quite similar to most that I read. I was a pretty good athlete in my youth and teen years, always very active -but had some of the worst muscle cramping that progressed as I aged. I was always told by coaches that I simply needed more potassium. Sometimes the cramping would awaken me at night. It always followed sporting activities or even light runs or even just walking as time went on.
Through my 20's and 30's, I was wrongly diagnosed and treated for chronic arthritis, chronic tendinitis, fibromyalgia and even a examined for a mental disorder. I have taken almost every drug there is for chronic pain, muscle cramping and anything else you can think of. I kept returning to the doctor because none of whatever they gave me worked and things seemed to only be getting worse. About three years ago, I was sent to a local rhumatologist and was really just downright angry about it because I figured he would simply begin another course of anti-inflammatory meds after running another inconclusive round of blood work. Instead after reviewing my chart, he walked in and said "you don't need to see me, you need to see a muscle specialist". I owe this guy everything. Without his referral, I would never had been properly diagnosed. -I said all that to say to others out there -do NOT give up. After running all the test he could, the "muscle specialist" or neurologist said there was only one other test to run, and that the odds of finding anything were extremely low. He felt I owed it to myself to after all this time to proceed and eliminate all the possibilities.
After about 6 months of "thinking about it" a friend convinced me to have the muscle biopsy. I was prepared to receive inconclusive information and discovered that he was as shocked as I was to learn that there were unmistakable, conclusive evidence of tubular aggregates on my biopsy results. He repeated how rare of a find this was, and assured that he could get me on a proper course of treatment.
So this gets me to an explanation of my meds:
I take 10 mg of Nifedipine 3x a day, which is being used for it's calcium channel blocking capabilites
I also take 100 mg of Carbamazapine 3x a day (originally prescribed as Carbitrol, but my insurance would only pay for carbamazapine), and that is actually used to control pain. I actually have constant muscle spasms that in their extreme can even contort my extremities (fingers, toes, feet, tongue,etc.) and although they continue, this essentially blocks the "signal" to my brain that I am in pain. It is actually quite effective.
My quality of life has improved significantly. I do still have a difficult time with some people believing that I have a disease I have to manage. I measure enjoyment level factor over long term effect, short term pain factor in many of my activities. For example I love volleyball and tennis, a small injury for me (overworking one muscle) might take two months or more to recover from. I'd rather suffer from something I really like than say softball -which I hate (a discussion I'm having with my husband right now. I'm in so much pain from softball from a week ago and it's no worth it for me). If I end up in a wheelchair one day, I'd rather be remembering the great fun I had than be upset about doing something I didn't enjoy and having it put me there.
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Post by Pete on Jun 27, 2009 6:27:09 GMT
Many thanks for taking the time to tell us your story. You certainly have had the medical run around. Anything funny to contribute to the "That's what they say" thread? You have also had some very smart medical advice lately. Most of us were told after the muscle biopsy that there is no treatment. I had to find the medical research favouring Ca antagonists myself and get my GP to prescribe it.
Here's a hard question. Are you able to quantify the improvement due to nifedipine? Say by walking distance or something like that?
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Post by Pete on Jul 9, 2009 1:08:28 GMT
Found this in the the book Congenital Muscular Dystrophies by Y Fukuyama, chapter Tubular Aggregates Myopathy:
"Therapeutic trials with nifedipine (35 mg/day) and spironolactone (100 mg/day) were ineffective. Myalgias were improved by diltiazem (120 mg/day)."
Well contrary to this you have found nifedipine effective and diltiazem had no benefit for me at all. So you have to be prepared to experiment to find the particular drug that helps you.
I have to say that regardless of the book title TAM is not a form of muscular dystrophy despite what you may read on the net. Dystrophin deficiency has never been implicated in TAM. I guess that TAM is so rare that it is never going to get a book to itself.
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Post by lsmith on Jan 15, 2010 3:16:53 GMT
Wow! Where have I been since July 09... Sorry, many computer problems, life situations, new job and now I will be relocating soon. Not looking forward to having to find new doctors. I can say that since the nifedipine, I have noticed a marked improvement -but I do think that the two things work very well together for me. Although I cannot provide a good measurement such as walking distance, I can say that I am able to sleep through the night and have recently begun playing on a recreation volleyball team with no problems. I have learned my limitations and stick to them. And most importantly, I am able to work in an office again. I have to say that if I miss a dose of medication I most certaintly notice it. I whole heartedly agree that we each must find what works for us. Perhaps one day collectively we will notice similarities in treatments and then be able to gather data that will be helpful, but until then don't give up and find what works for you and your lifestyle. There is no way to know how long this treatment will work, but I will be sure to enjoy it while it last!
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Post by Pete2 on Jan 19, 2010 3:37:26 GMT
Welcome back, always good to hear from you.
I agree, finding a new doctor can be a real pain. You have a doctor who takes you seriously and understands that you have a real disease, then you have to start again and train up another.
My own experience with the calcium antagonist Verapamil is that it enabled me to do things that I never expected to do again, such as walk. But it has a downside in that as well as backing off the disease it seems to me that to an extent it also masks the symptoms that tell me that I am doing too much. So damage from exercise has occurred and is only apparent in the long term. As you say, enjoy it but take it easy. Good luck with your relocation.
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Post by lsmith on Jun 28, 2010 0:42:35 GMT
O.K., pete -here's some more info for you... I held back for a bit. I am taking one other medication. It's a bit of a story how I got on this med, but I have also been taking Topamax 100 mg 1x day. Don't know why it helps, but it does. I actually can't seem to stop taking it without experiencing set back, so the solution has been to keep me on it. I wanted to make sure it was helping and I would still be on a regimen before I reported it in my list of meds. But add that to my regiimen now. It's been a couple of years with success.
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Post by larrys on Feb 12, 2012 3:07:57 GMT
Hi lsmith! My name is Larry Smith and I too live in the US. If I remember right, I saw you live in North Carolina. I currently live in Maryland, but my wife and I just bought a place in Greer, South Carolina and plan to move there in the next few years. What are the medical odds of two people with TAM living in adjoining states with the same last name?
As I'm sure you are aware, we TAM's are a rare breed indeed and despite my efforts I have not been able to find an active forum on the Internet about TAM. Based on what I learned here, my GP is letting me try verapamil since it helps with my high blood pressure as well. So, lsmith if you are interested in emailing back and forth here is my email address blsmith@comcast.net I would love to hear from you and compare notes. Good luck to you.
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Post by Craig Lane on Feb 27, 2013 21:02:24 GMT
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