toddm1960

I'm taking 1,000mg of Tishcon's ubiquinone CoQ-10 for my mito dysfunction, it's been on this dose for about 8 months now. I haven't seen any change in my BP, up or down. I'm glad you've finally been diagnosed and hope you can find something that works for you.

I'm like clock work, I'm up around 2am........back to sleep around 4am. I've been doing this for 4 or 5 years now, when I was working this was a killer, now that I'm off it's not as big a deal.

Dana is right as of today the treatment is a mix of vitamins and cofactors, I haven't seen any change in how I feel taking small and large amounts of these. I also have had no luck getting insurance to pay for these treaments, it's all there is for us and we're on our own to pay for them. Check out mitoaction.org, umdf.org and mda.org all of these sites have great information, good luck and hope these help you feel better.

I like your term "fizzing" it's a good description, I get them on random places all over my body also. Seems to happen more when all of the other POTS symptoms are flairing. I try to keep a list and tell my doctors everything. The bad ones will be overwhelmed by all the things we have going on. The good ones will try to sort through them and try to tie them to what ever you have, in my case is it more POTS or more a mito thing. You're not alone with these, hoping you feel better.

The pain in my back sits me down faster than all of my POTS symptoms and exhaustion. I wonder if it's the same fibro pain people feel. Mine is burning hot and sharp, very defined area (the size of a pencil) and burns from that spot on my back right through to my front. Only laying down flat or reclining takes it away, but as soon as I stand up.....it's right back.

Joe I went through 30 doctors in a 4 year period before I found my current team, most doctors you see don't know much about it and are to busy to look things up. My current team is awesome, they listen to information I get from the internet, look things up themselves. They email me back when items they find. These types of doctors are worth their weight in gold!! If you don't like what your doctors has to say, or they don't want any of your input..........find a new one.

The Cleveland clinic doesn't do fresh tissue testing, in fact they send out most of their frozen biopsies. I wonder what date that was from on their web site, the latest and greatest testing is now a swab test looking at the DNA and guess what their matching their results to......you guessed it fresh tissue muscle biopsy. The swab research is very new and only can detect dusfunction in complex 1 & 4, Dr Sims out of Mass General is leading the way with this testing. The meat of this matter is finding dysfunction within the respiratory chain, this can not be found with a genetic genome or blood tests looking for enzymes. The type of mitochondrial dysfunction we're likey to have is this type, not the very deadly known varients. They are no longer naming varients with these crazy acronyms MELAS, MERRF, they are now just listing the complex you have a substandard function with i.e. complex I or complex III. 99% of us with POTS will be negative for genetic or blood testing the only way to see this level of dysfunction is with fresh tissue biopsies.

The gold standard today is fresh tissue muscle biopsy, and they'll not only rule out the known varients but also look for dysfunction in the 5 complexes that make up the respiration chain. The best place to find doctors that deal with mito patients is to go on MDA.org (mitochondrial disease is an MDA disease) and find the closest MDA office. Check out both UMDF.org and mitoaction.org each has great information, good luck finding your answers.

I only do one small job each day and even that knocks me out for the rest of the day. I like Reen have a seated walker that I can either lean on if needed or sit on to finish what I'm doing or to rest. You can push yourself around so it works well doing almost anything. Dianne is correct lower standards are a good thing, we don't need to be adding stress into our lifes at this point.

Joe in my case I had a local neuro who worked with me through most of this, he sent me to a geneticist first. She looked over my family history and current symptoms and agreed mito testing was appropriate. After much online searching I felt fresh tissue muscle biopsy was the best route and picked a location for that testing. This months webinar on mitocation.org is about muscle biopsy testing. I hope you find the answers you're looking for.

I can only answer for myself because I've found information online stating both mito pateints need to exercise and that that they need to conserve energy. My doctors feels there are so many variations on mitochondrial diseases each pateint needs to try for themselves, use it or lose it might be a bit rough in the case of mito. I no longer feel that I can lift weights, my muscles cramp and give out well before I can do any work with them. I'll even get this cramping from minimal things like streching or reaching too far. I do continue to use my stationary bike, but like 1fast I can do a light ride on Monday and after can't get off the couch or out of bed the next day. Then try again on Wednesday, it never seems to get easier. Being a personal trainer I can see I'm going backward not forward with this, still I continue to try just to help with the deconditioning. I don't see my POTS symptoms changing at all, has anyone seen any studies on GET helping POTS? I must have missed these because I'm hearing many people on this forum saying their doctors are telling them that exercise and time will cure POTS. I find my exercise is just doing small housework, then crashing for the rest of the day. Clearing dishes, then rest for the afternoon. Running the vacuum in one room, then crash for the afternoon. Small activities are all I can manage.

Yes my POTS is secondary to mitochondrial dysfunction, many members have found the primary cause of their POTS. In my case so many doctors didn't know about POTS and once I found I had it they washed their hands of it and said you need to learn to cope. I think once we have a POTS diagnosis we need to continue to look for what could be causing it. I was lucky in a 12 month span I got my POTS and mito diagnosis, now I pushed it all and pushed the doctors and insurance company for it. Had I sat back I would have been stuck with a CFS dx and CBT and GET......pretty close to blood letting of the 1800's for our disease.

Brye you could be living my life, and the correct word is exhuastion this is not tiredness or fatigue. You may want to look for a mitochondrial cause of your POTS. Beta blockers have been added to the list of mito toxic drugs, when I take them I can just feel the exhuastion getting deeper and thicker.

Rest, sleep, relaxing don't help me at all, I wake up just as exhausted. My energy comes in small waves from time to time.

I'm sorry to hear you're flairing up appaloosatb, I understand how you feel. All my joints seem to be screaming at me from my ankles to my shoulders, the only difference is mine is both sides of my body. The one side pain only can point to specific types of RA, do you see a rheumatologist now? It might be worth ruling out RA if it continues, I hope your flair is calmed down soon.

I've tried Ritalin and Adderall both make me so shaky and weak, it almost made the exhaustion feel worse. I wonder if when the cause of exhaustion is mitochondrial if these amphetamines make thing worse, when there is a shortage of ATP you just can't increase a cells output. Just another question I guess. I do hope you find something that helps with your fatigue.

I'd be broke.......never passed out.

Hey Suzie, Add me to the list, all the exact same sypmtoms, it is very nice to know other are feeling them also. My only problem is with beta blockers, they negitively affect mitochdrial function so I can't take them. Hope this helps you relax and get through the crazy things are bodies do.

I have never been bothered like this year either, but I'm sure it's a much hotter spring / summer in the northeast. I'm a little different, I sweat buckets at the drop of a hat and never slow down. It pours out of me, but I still flush and feel over heated in minutes. It takes me over an hour to cool down, AC and cool wet towels and drinking a ton. I also found this past winter I couldn't stand the cold very well either, I got deep down shivers that shook me to the bone. I don't know if this will continue or if it's just a wave and next year things will calm down. I don't know how everyone in the southeast and southwest do it, it's hot all the time.

EM I'm crossing my fingers your 3 children are in the 80% group of teens that grow right out of this. It's a good sign they aren't held back by any of the symptoms.

Oh my you are not alone, for the past 4 years my line to everyone of the 30 doctors I saw was "I fell like an 80 year old when i wake up" Wish I has some answers as to why, but I hope you start feeling better.

I started with my neuro, once he agreed we should look into this further (he was the same doctor that had never heard of POTS but agreed to find me someone to do a tilt table) he then refered me to a geneticist. The geneticist did her own testing then agreed a muscle biopsy would be the best way to confirm a mitochondrial diagnosis. Check out mitoaction.org this months webinar is on muscle biopsies and new diagnostic testing. Just let me add many mitochondrial specialists think dysautonomia is a symptom of mitochondrial dysfuction, it still all very new research. Good luck finding some answers and I hope you feel better soon.

I gave blood every two months until I got sick (never felt bad after giving), I haven't since that point becuase if we're hypovolemic already giving blood can't help. I also can't help but think XMRV is going to end up being linked to POTS also, until this is strainghtened we probably shouldn't give.

It could be time to look into Mitochondrial cause for your POTS. Good luck with everything and I hope you start feeling better soon.

Any press is better than no press, but..........I've had doctors tell me just to relax this will go away on it's own. At least we (past our teen years) did get a paragraph in this article "POTS was first recognized in 1993 and some research has shown an association with chronic fatigue syndrome. It can also strike in middle age, but the prognosis is not as good" I do like how they used DINET as their information source and got the details correct. Thanks for the post Crow.