toddm1960

This is still a touchy subject, so much of the medical community still thinks all you have to do is push through this and you'll be fine. I was told so many times just make yourself excercise, you're being lazy, you want to be sick. We've all heard the lines from one doctor or another. I still have wet dreams about being able to exercise again someday, and I still don't give in but anymore being on my feet long to help make dinner is a major achievement. It's nice to hear that others are feeling better even if for a short time because they can exercise, one step at a time.

Never ending exhaustion, I wake up with it and go to bed with it. My POTS symptoms are standard, nothing much different from the group. POTS is mostly secondary to something, my case it's mito. I wish you luck with your testing, knowing what you have and what it's causing helps from the mental side very much. Keep us updated on how you're testing is going and how you're doing.

I had metobolic testing as part of my mito workup that included VO max testing, all done on a bike. It's not easy with your nose plugged and you're forced to breath into the mouth piece, but as long as I was sitting I was able to complete it. It is a much better gauge of our fitness level.

It's made all the difference for me. When I lean forward or when I'm laying flat I feel like I'm being choked, and also feel like my head is filling with fluid. Since I've raised my bed 6" those symptoms have gove away. Good luck I hope you find something that works for you.

Add me to the floaters list, and you're right I have learned to ignor them. I'm another one that always has to have sunglasses, bright lights drive me crazy. Let me add one question........how is your night vission? I see better at night than I do in the daylight hours?!? Just another crazy thing.

My team of doctors was greatly reduced once I had a positive TTT and muscle biopsy for mito. Never have been to to see an endo, only see my PCP and geneticist now. Even the neuro that did my tilt didn't know much about POTS.

Hey Reen I have mito and I take 1600mg per day of Tishcons Q Gel. Early on 6 years ago one of my many blood tests came back high cholesterol, so I was given a statin. It knocked me out, bed bound for 2 months. Had I known then what I know now statins deplete our Co Q-10 levels and can point toward mito problems, could have saved me a rough 6 years.

Well.....well......more of us are out there I'm also a possitive HLA-B27 person all the AS symptoms and a normal flow / hyperadrenogenic POTS person. This is the first thread that I've seen others get the ridges in their nails and bad floaters. This is just one more piece to our puzzle, but the problem I have is with a confirmed mito root cause of my POTS I can not take NSAIDS. These have the same Co-Q10 depleting actions as statins and beta blockers, so I'm really limited to what I can take. great attachments in this thread

Hey Lizzy sorry to hear you're not feeling well. I've always called those remissions, over the past 23 years I've had two major ones lasting almost a year. Now when they come it's a day here or there, but always remember there's another one in your future. How long have you had POTS? No matter how bad you feel today, you're one day closer to your next one.

I started taking 400mg twice a day, and now have moved up to 800mg twice a day. Tishcon's Q-Gel-200 lasts 20 days at that level and is around $200, I haven't been able to get insurance to cover any of it. To be honest I don't know if I feel a whole lot better, but it's only been two months on the higher level so I'll stick with it. I to have a CFS dx.....which I no longer talk about and even pulled from my profile. I do also think POTS, CFS and Fibro will all one day be found to have the same root cause. When I felt mitochondrial diease was worth looking into I started with a geneticist (I called to confirm they saw others with mito) After a 6 month wait to see her she felt there was enough cause to get a muscle biopsy. She had sent others to Dr. Shoffner before and felt this was the best place to go if I wanted to make the trip. the trip was killer but I'm so glad I went, I would highly recommend Dr. Shoffner to anyone thinking of having a biopsy.

For years to touted the European/Canadian medical systems........scares me now. No control over a worst than bad doctor....wow, I'm floored. Thanks for being honest.......can't beleive I'm going to say guess I'd rather have insurance companied screwing me over than to have no control over what doctors I can see. I've seen 30 doctors in the past 5 years getting dx'ed, I just kept firing them until I found a team that was willing to look deeper.

Just looked googled the "ageless xtra".....half the sites listed called it scam......nuf said.

I had a muscle biopsy done at Medical Neurogenetics with Dr Shoffner most frozen samples from U.S. mito clinics are sent though his company for testing. He advises the best testing though is done on fresh muscle tissue which means you have to travel to him. The problem with any supplements is the slow / poor absorption many of us have. I'm taking huge amounts of Co-Q-10 (obiquinol) creatine and carnitine all of which I tested low for, after 6 months I'm still low on them. I'll take a look at what's in the formula you talked about, but as with any supplement it's buyer beware.

Hey Angela, this sounds a lot like my path. Bad GI symtops early on, slow motility 120 hours. Then a possitive TTT and lastly a possitive muscle biopsy (the short version of the past 5 years). You should look to have either a mitochondrial genome test ( mine couldn't find a known varient ) or have a muscle biopsy. Just to guess on mito is leaving much open to worry about....like MNGIE. You're close to Boston, there's good mito testing there, keep pushing for answers. Good luck and keep us updated on how you're doing.

My worst symptom is also exhaustion, I have since been found to have a mitochondrial cause for my dysautonomia. I was dx'ed with CFS 3 years ago, at the time no one could find anything....so it's either CFS or all in your head. I think dysautonomia will be found to be the cause of CFS/fibro/MCS, if not mito problems also.

LOL......too funny

My vote.......nothing to do with the medical field. I can feel a poll coming on

Dump this guy and move on, don't waste a mintues worth of energy on him. Remember there was a time when the biggest brains on the plant said the earth was flat, and in the 50's people with polio were told they had psychiatric paralysis. Fire him and move forward.

Anyone that missed it can find the episode on youtube, any information out in the media is a good thing for all of us.

It's too bad the focus on POTS is the orthostatic hypotensive group, that form has little to do with what I go through. There was a post on a few weeks ago to see how many fainters were on this forum and I was surprised it's the minority (from that poll). If you didn't vote on that post go back and fill it in, I'd like to know if those symptoms really fit most of us.

I've had two, they're very easy and only very small amount discomfort as the capsule falls away from your esophagus. My results were just as you said, acid spikes even on Nexum twice a day. Now that the wrap isn't done as much you're correct even with these results it didn't change my treatment. Good luck and the test is very easy...no need to worry.

When I bend over it feels like a noose gets pulled tight around my neck, throat feels closed. Lifting is tough the valsalva maneuver gets a lot of us.

Hey Rama, nice to see you back. We were guessing if you had another nice long remission, either that or got married and no longer have time for the forums......lol. Welcome back, hope you're feeling better.

Hey noodle, we are a minority in this group of fainters......lol. The thing to remember about dysautonomia (POTS in this case) is one treatment that helps half of our fun group actualy hurts the other half of us. This could be a good poll topic, is it 50/50 between hypotensive and hypertensive in this forum? Increasing sodium also increases our fuild retention and helps with our low blood volume, but in my case it also increased my overall BP, both supine and standing. So I stay away from the large doses, but I don't worry about using the salt shaker and do drink my share of Gatorade.

Bows to Firewatcher.......that's exactly it, like the DINET newsletter said adjusting to the new normal.