toddm1960

I've tried two beta blockers, an alpha agonist, alpha blocker and a benzodiazapine. The alpha blocker and benzodiazapine didn't do anything, felt the same, no better or worse. The two beta blockers increased my already extreme exhaustion, so I was much worse on those. The alpha agonist increased my brain fog so bad I couldn't function at work. The only thing that works is sitting, reclinerville as it were...........

Ana, any motility problems? My levels were low also and once I started taking 800mg each morning it helped get my GI trac moving......even a little helps.

I know, there are thousands of unknown varients but it's silly to not have the test at this point. The important results were for the mitochondrial diagnoses. Have you seen any improvement of symptoms on which ever mito cocktail your doctor believes in?

The muscle biopsy and cerebral spinal fluid came back with the results for a mito diagnosis. I did have alot of blood drawn but it came back unremarkable. I'm going to have a blood test now to map my mitochondrial genome, this will find the exact mito varient if it's a known one.

Yup my problem also.......just can't stand for very long.

Mitochondrial disorders should be checked as a cause for dysautonomia, just like autonomic disorders should be checked for slow motility and strong GI problems.It was my research on the internet that pointed me in the direction to push my doctors to test for me autonomic problems. Once a TTT showed I had dysautonomia I looked for possible causes one of which is mitochondrial disorders. I pushed my pcp to send me to a local geneicist, they then thought it was worth contacting Dr Schoffner who confirmed my dx. All this being said I've been on the mito formulas since March / April when I thought I could have this. I haven't seen much change in how I feel. I don't think the treatments for mito are much better then the treatments offered for POTS, I haven't found anything that doesn't make my exhaustion worse.

I'd love to lose some lbs, but if I'm on my feet for 15 minutes today......tomorrow I'm not able to get to my feet. Sitting has become my lifestyle, guess I'm living in reclinerville. Maybe we could get Jimmy Buffet to do a song for us

Costs too many spoons to exercise......................

Hey Keli let us know how your apptointment goes, I'm in Rochester and thinking of going to see her as well. Good luck with your records, it's very tough getting everything pulled together. I have seen 28 doctors in the last 4 years ( why stay with a doctor that tells you this is all in your head ) I'm starting the process now.

My results are back from Dr Shoffner and I was positive for mitochondrial disease. Abnormal decreases in complex I and III, abnormal increases in CSF proteins, amino acids and very low levels of 5-methyltetrahydrofolate and CoQ10 in muscle. Abnormal OXPHOS enzymology. Just a few more blood tests to go now to complete the whole process. My treatment plan for right now is Tiscon CoQ10, Folinic acid, Carnitine and Creatine. It's good I've found the cause to all of this, it's too bad no doctors thought to give me a TTT or think mito could be cause. After 22 years I'd like to email these results to the 50 or so doctors that told me it's all in your head.........

I didn't decide anything about the mito testing, they told me what was needed and off I went. I'll add a new post but I just got the results back and I'm positive for mitochondrial disease. At least now I have a cause for everything.

Great question...... I have to be sitting for 15 of those 16 hours, if I'm on my feet for more than 15 minutes or so I get real potsy. The only reason I can still work is I sit at a desk for 8 hours, and this still kicks my butt. I have no energy left when I get home.

1) Pupils get larger 2) My head fills up bad if I lean over, it happens even when I lay on a flat surface. 3) bluish / purple

Hi Megan I went to Atlanta this September to see Dr Shoffner, I had a muscle biopsy, spinal tap and loads of blood work. I should be hearing back any day, seems like forever ago. I had looked into going to the CC but once I found out they sent all of their samples to Dr Shoffner and his group I decided to go directly there. Good luck with your tests and let us know how you do

I raised the head of my bed 4" and feel way better, if I sleep on a flat bed my head fills up so bad. I tryed a wedge also but when you bend at the waist it doesn't help me as much and I get reflux from that. Hope you find something that works for you.

In the 22 years I have this I've had two major remissions lasting a year or longer. I've never been able to pin the remission or the relaps on any one thing ( I've tried for years ) Enjoy every minute of feeling well, and don't look back.

Doesn't this happen to most teenagers who have POTS? It's something like 75% have total remission no matter what they do isn't it? Having said all of thing I'm going to try the lower carb diet, hey you never know.........

This isn't fatigue.......it's bone crushing exhaustion. Count me in with you, as bad as the other symptoms are exhaustion is an everyday minute of everyday thing for me. My sleep study came back with alpha / delta disruption which doesn't help, but I think they'll someday find CFS/FIBRO/POTS all intertwined. I wish I had some answers but I haven't found much that helps, I hope you find something that makes you feel better.

My internal tremors hit during flair ups, they'll last for hours once or twice a day and put me on my back in bed the whole time. I can hardly walk, and I'm very light and sound sensitive while I have them. This will go on for months, then clam down when the flair is done. Only to return with the next flair

As bad as working is the worst part is that it robs all of my energy to do anything else. After work all I can do is sit on the couch and go to bed early. How many of you that can stay up past 7?

I work full time, but have missed so much time. The only way I can still work is because I can sit in my office all 8 hours if needed. The company I work for has been really understanding with time off or letting me work from home.

Cheers to all....... A couple of beers is fine, feels really good. Any more though and I start to feel very potsy, just like coffee a couple is fine but no more than that.

Sounds like reflux to me, have you had a bravo? This a test where they clip a small sensor to your esophagus and track your acid production for 48 hours. You wear a small receiver that records everything. Many don't feel the heartburn that they do have.

I am on the other side of that, I seem to have an upregulated immune system........until H1N1. I'm on my third day and still have a temp over 100, the highest I had was 104.3 Needless to say the DINET group has been great company while I spend my days on the couch.........THANKS ALL

do you think it's blood filling our sinuses? When I sleep and lay on my right side, my right sinus is full and I can't breath out of that side. I'll roll over and the other side fills up. I do have my bed raised 6" but still fill up. Does everyone else have this problem?