toddm1960

Jumping in with my two cents.......I have orthostatic hypertention, I just took my standing BP and HR 121/102 & 136. I have tried beta blockers and alpha agonist and they both turn my regular exhuastion into bone crushing non functioning exhuastion. I'm a normal flow, splanchnic pooler and had really hoped the bb would help, but like most of us on here nothing seems to do much for us. Still in all, it's nice to hear all of the differences within our group.

1) Need to have one. maybe two cups tops. Gets me moving in the morning, breaks the foggy head. Also I'm a stomach pooler and if I have more than two I become pregnant man. 2) Helps me first of because of my delta / alpha sleep problems and I need a kick start. Second it clears my head to start thinking for work. 3) My hands and feet are cold but never turn color.

Hey Rachel, Thanks for the feed back, I read your singnature........OMG it sounds just like mine. Where did you go? Have you found anything out about your possible mito? Keep us updated, and good luck finding help.

Hi Gift, What part of New York, I'm in central/western New York. Rochester has been a challange for me finding doctors also, but can give you the names of a couple. Welcome to the forum it has been a life saver for me also.

Just returned from my appointment with the genetics doctors and they want to send me on to a mito center. Has anyone been to see or know of John Shoffner and his center Medical Neurogenics? I'm much closer to Boston or Cleveland, but they are pushing for Atlanta. Let me know if anyone have any info on them. Thanks

I'm a stomach pooler also and get very bloated even after a few bites, and I also have a hard time breathing. No matter how deep a breath I take seems like I can't fill my lungs.

Hi Mother, that's the first video I watched after I was DX'ed and to date I have never found anything better. Thank you very much for making it and good luck in feeling better.

You've been wearing pants your whole ( your Dad also I'm sure ) and this just started happening. HUM................Do doctors really think of dumb they sound at times, or better yet how dumb do they think we are? I've seen many doctors like that myself, fire them and move on to someone that will help. I hope you find someone that will take you seriously and work on finding out why.

I was hoping to see a ton of responses to this post, my worst system by far is bone crushing exhaustion. Yes all of the others are bad to, but this is the main reason I can't take beta blockers or alpha agonists I'm so tired I can't get out of bed. The treatment makes me feel worse than the disease. Or is it there's not enough research out there to know the reason for the exhaustion? Darcy you should have the TTT done it's way better to know what you have, and I do hope you find something that works for you.

Hey Shell, My neurologist had the same thought, I couldn't get in to see a Genetics specialist for 3 months but my appt is next month. Please keep us posted on what you find out. Dr Cohen is one of the leading doctors in the U.S. in this field. Good luck.

Hey Fire, What a great post!! It's very honest and blunt, while still being understanding. I think at one point or another we've all felt down about our doctors either not having a clue or giving up on treating us. We just need to stay positive and learn all we can to help our doctors each step of the way. That's why this forum is great, both the inforamtion in it and also the idea's that are generated to get me do look up other things.

It's nice to see so many stomach poolers on here, I was worried I was one of the few. So what has worked well for normal flow? I've tried two different beta blockers, didn't do much but make me feel like I was wearing a lead suit. I just started Clonidene so we'll see how that goes.

Hey Ram, I really do like reading your responses, I've learned alot about OI or at least have been pushed to look different things up online. I was tested for hypoglycemia, and was neg but boy that's what it feels like when I get the clammy sweats and minor internal tremors. I seem to fall into the normal flow POTS, because I have the cold hands, feet and nose but bad stomach bloating. I am also flush almost all the time, but doesn't seem to follow mast cell. So again thanks for the info, and Erica good luck finding what may be behind your sweats.

Hey Erika, I get the exact same feeling, I always blamed it on hypoglycemia. I agree with you that it's nice to find others going through the same things as yourself.

It's kind of crazy but since the CFS / dysautonomia started in Nov 2005, I haven't been sick. No colds, no flu, nothing. I was always good for one big cold every winter. It's funny how this effects everyone so differently.

I have gained alot of weight latly because of my lack of activity and the fact that I feel hypoglycemic all the time. Or at least every 30 minutes, so it seems I'm always eating now. Does anyone else have this?

Hi Melissa, Good luck with your weight loss, it's never easy. I've put on alot of weight my self latly and it's mostly because I feel hypoglycemic all day long. I have to eat then 30 minutes later I feel it again, so I'm eating all day long. If I could just exercise I'm sure mine would come right off also like you were saying. Well good luck with everything and I'll keep up with how you're doing.

I was dx with Dysautonomia POTS in February of 2009 after 4 years and 25 doctors of finding nothing. Now with this positive TTT I thought things would be downhill, but the problem I have now is of all the doctors I see none of them know anything about dysautonomia or how to treat it. When I say nothing I mean they know nothing!! I also was dx with CFS in December of 2008, I wonder now if this was just to get me off their backs because they have never once tried anything to help or even run one blood test. My question is this, are there any of you out there that live in Western New York, if so do any of you know any doctors that treat this?

Hi Fire, I'll add my 2 cents, like most others on here I feel them all the time. Am I the only one that has ended up in the ER because of them? The tight chest and at times pain in my jaw or left arm. They are very scary, but don't feel alone with them at all. One more thing we need to learn to relax ourselves through.

I seem to have the flushing all the time, but like you when something happens it worsens. I'm also on Zegrid (PPI) now, but I don't see any difference from when I was taking Nexium. I wish doctors in my area knew more about any of this, I seem to have to bring them idea I read on a few of these message boards. Good luck with your flushing and let us know if you find anything out.

I'm in the internal tremor crowd, always way worse when I'm flairing. I was dx just this past February, but have had these for the past 3 years. While they haven't improved any, it's just nice to know why I'm getting them.

Put me down for the low D levels also, I started in the teens to. I've been on 50,000 IU's started one per week, didn't come much. Then two per week and my levels only came into the 20's. Now I'm taking three per week and my last test came back at 31. There has to be some type malabsorbtion problem going on with this also. Good luck with your levels and no the high does shouldn't bother you.

I'm 48, male was dx in February of 2009.

Is it true that dysautonomia isn't on the approved list for disability list for SSI? That seems crazy.