toddm1960

My scopes didn't show a HH, and since gas-x doesn't work I'm wondering if it's all blood pooling in my stomach. Do you also get back pain along with it? My guess is the bloating is hitting a nerve and causing that pain. It's nice to hear someone else has the swelling tummy with activity, well I'm sorry you have it also but I don't feel so alone with it now. That's part of what keeps me sitting all day long.

Add me to this list also, it seems to be getting worse as time goes on. I have had all of the transit time studies, and more scopes than I want to talk about. I've tried gas-x and probiotics, nothing seems to help. I will even bloat with activity, if I'm on my feet for 10 or 15 minutes the pain in the my back starts and my stomach starts to grow. It can grow as much as 3 inches!! I hope you can find something to help you feel better.

My results from Dr Shoffner should be back any day, if he does find a varient I'm hoping it one he's doing research studies on. Right now I'm taking 1,600mg a day, this stuff is crazy exspensive even with the mito pricing we get from Epic. I have to say I don't feel any different taking this much Q-Gel. I'm wondering what drug or drugs his studies are using?

I stopped using the word fatigue, this is bone crushing exhuastion. With flair ups it's even worse than any of those choices.

I don't have any info connecting the two, I can tell you I'm waiting test results from Dr Shoffner on my mito testing. Who did you go to for testing? Did you have fresh or frozen tissue testing? I hope you get some answers that help your feel better

I have this constant ringing in my ears also, it's hard to fall asleep or sit in a quiet room. Some days worse than others, but I've had it for over 3 years.

You're not alone at all.........if I'm awake 16 hours a day, I have to sit for 15 and a half of those hours.

No mice for me..................

Catherine how were you dx'ed? In your post you say you had to very bad TTT, why two? What were the results of the first? Then the second?

I drop things way more than I ever had, and my signature doesn't look as good as it used to either. The fine muscle control in my hands wears out very fast and will cramp up.

I'm so exhuasted all the time I have no trouble falling asleep at night or for a nap, the problem is I never wake up refreshed. My sleep study showed I don't get enough delta or rem sleep. So to nap or not to nap.......doesn't matter much, it doesn't help anyway.

I take an omega 3,6,9 gel cap, they don't bother me at all but exactly how I feel better? Good question, when I stop taking them I don't feel any different. Maybe I should save the money........lol.

Hi Jen, welcome to the board. Your story sounds just like 90% of us here. Glad you found DINET take advantage of all the information here, you'll learn more here than anywhere else. Good luck, hope you find somethings to help you.

I have this same type of pain, it did get my gallbladder removed....but didn't change the pain. What was found later is that I have a malrotated stomach, and when it's cramping up or unwinding the pain is crazy. Have you had an esophageal or gastric monomitry?

Nauthiz how were you dx'ed again? I hope this one lasts for you, I've had two major remissions since 1987 when I had my first big flair of this. I was 27 when it all started, you may be young enough to be in that group that has a complete return to health. Most of things that worked for you only have made me worse, seems like my remissions just happened. I'd spend the next years trying to figure what caused them, never did, never will I'm sure. Here's to all of our next remissions.....let's hope they're right around the corner. Take no offence, I hope we never see you again.......lol.

It seems to be a trend, a drug or treantment will work for awhile......then out of the blue not help at all. Keep your head up, something good is always around the corner.

Hey Not, never give give up, tomorrow could be start of a long remission. We all go through the ups and downs, blow of steam, yell and scream on here. Then try to relax and look for the next thing to try. It will get better.........

Welcome to our club Miss, sorry you're here but you'll learn more than you ever dreamed. I hope you find something that helps you..................

Sue I had the same reaction, how did it effect your brain fog? Clonodine had me in a fog all day long, along with the narrowing pulse pressure and being very dizzy. We all react so differently to meds others need to try it for themselves. I've also had bad luck with all of the beta blockers I've tried, I hope you find something that works for you.

I'm flushed most of the time, but go pale when I'm feeling worse. Those black circles under my eyes look awesome when I'm flushed or pale, they go with everything...........lol

Glad you've found something to help..........this is your POTS on pot, kewl.

I was starting to beleive dr myhill's site and the information there until............the site was linked to one those 50 page infomercals that was only selling some crap longevity program. I understand why we can't regulate companies and "non-drugs" like this, so buyer beware. Don't get sucked into these silly programs and waste your money.

My GI doc had me try this last year, I took it for two months but see or feel any different. Does anyone know how long they are saying to take it? I take a different probiotic now, but don't think that's doing much either. Good luck with this I hope it helps you.

Not dangerous at all Amy, congress has to remember they represent the people, not the lobbiest that funnel millions to them from corporations. If we the people are feed up.........VOTE THEM OUT! Health care is not a privilege! Sorry I'm off my soap box now.

Wait a minute.......I keep hearing this is the best health care system in world, we don't need to change a thing. It's an outrage this goes on in this country. Until the masses stand up and vote these corparate rats out of office it's only going to get worse.