toddm1960

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.

I ask of you on this forum are my expectation too high?

Yes and No. Not even a cancer doctor who has studied cancer for 50 years completely understands every cancer. You must remember that while this disorder (POTS) has been seen and written about since the 1800's, it has not been "classified" as an "official" disorder and studies since the 1990's! It crosses too many systems and does not present exactly the same way in every patient. You MUST be your own best advocate and researcher! Only you know how you feel and what each medication does to you. An open minded doctor with a healthy respect for YOU and what he does not know is your greatest ally! How long has diabetes been an issue? Billions of dollars in research has been thrown at it, and there is still no cure! It is going to be trial and error for a long time. There are too few of us for this to be a huge area of medical concentration, and even then one doctor could not have enough braincells to understand the scope of our conditions. We'd all need a cardio-neuro-psych-endo-rheuma-nephrologist!

Start clicking your heels Dorothy, you're not in Kansas anymore! If you come across some pixie-dust let me know! I've got some doctors I'd like to sprinkle it on!

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.

If you are sweating too much it much more likely to be an excessive norepinephrine/epinephrine response to standing than to autonomic function (which in most POTS patients is suggested to be either partial denervation which would equate to less sweating or patchy distal denervation - irregular sweating patterns).

Sweating is probably a poorer tool in determining the disfunctions present that blood pooling location.

I wouldnt assume it was hypoglycemia. Have you been diagnosed with that?? In POTS when blood flow to the heart and brain become sluggish the body shoots off norepinephrine/epinephrine to re-regulate it - and that will produce all of those symptoms.

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.

Well...then that is it. I am so grateful for the knowledge here. I do also feel jittery and sometimes shake when it is all to much...then I sweat...not profusely but I was always one to be cold and relly not sweat much at all. Even if i turn the ac on cooler I am just cold but still sweating in spots then...

Thanks for the help!

Erika

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?

Hey guys,

I have been getting kind of desperate lately because I'm been packing on the pounds big time just these past few weeks. It's kind of scaring me, like I've lost control of my metabolism.

I guess the truth is, I'm not moving around at -all- because I haven't felt well enough. So every meal I eat never gets "used" by my body. I don't eat that much I guess, but it is definitely too much for my energy output and it is the wrong kinds of food. Healthy food, but extremely high in fat. Fat content isn't always bad because it is fuel that gets burned pretty quickly throughout the day, but only if you are active, and I am certainly not.

So I read the reviews on Amazon.com about a fat-blocking diet pill called Alli. It doesn't have caffeine or anything that will help you LOSE weight, it'll just block fat while you are dieting so that you won't gain any MORE weight. The only real side-effect that seems to effect most people is loose stools after you eat---supposedly you can actually see the fat and oil in the toilet. The less fat you eat, the less oil/fat and loose stools in the toilet. It is also the bestselling diet pill on amazon, so that's a good sign I think.

I'm pretty sure that once I start physical therapy and exercise, I will lose lots of weight pretty quickly, but I will -never- change my diet because it's already pretty healthy and I NEED to eat frequently. I have a combination of stomach ulcers, and extreme sensitivity to hunger, and I just need a lot of food to feel better when I stand up. If I stand up on an empty stomach, the word "weak" barely describes how horribly starving I feel. I feel like death itself if I don't have something in my stomach at all times. I'm thinking that at least with taking Alli, my body won't store some of my intake (25% in fact, according to Alli). Maybe it'll make my diet a little more "normal" when it comes to how much my body is using and storing.

Any cautions or advice? Anyone else try Alli or know anyone with positive or negative results? I didn't consult my doctor, but has anyone asked their doc about fat-blocking pills before?

Keep in mind that fat-blocking pills are completely different compared to diet pills---sometimes diet pills have caffeine and other things that us Potsy people wouldn't be able to handle, and it obviously wouldn't be healthy for our bodies. But Alli is completely different and I have high hopes.

I'll let you know how I handle it in case any of you were wanting to try it in the future =)

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.

Hi,

I also was found to have vitamin D deficiency. I take prescription 50000 IU vitamin D. I took it every week for 6 weeks, had my labs checked again to see that it was in the normal range, and then was switched to the 50000 IU prescription twice a month. I was worried about reacting to it, but I haven't had any problems.

~ Broken_Shell

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 am a new member to this site and am wondering if there are any others on this site who was diagnosed with pots at an older age. I started having issues in nov 05 and finally received my disgnoses of pots in oct 06. I am now 55 and am looking for support from anyone who is older dealing with this disorder. I guess it doesn't matter what one's age is but I am interested in this.

maggie

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

Hi, I have been sick with dysautonomia for the past 4 years. From the beginning my mom and I have searched the internet and books for any and all info on this not well known subject. Still with this knowledge the past four years have been an on going fight. A fight with uneducated doctors. A fight with insurance companies. A fight for diability. A fight with uneducated family and friends. This I wish to change.

I along with my mom want to be advocates in bringing to light this very real, very life changing condition. Let America know this issue is out there. Fight to have this condition on the approved disability list for SSI and Medicaid. Try to stop the mental abuse caused by uneducated doctors that are too lazy to do some research. Having psychologist and life coaches, who understand dysautonomia and how it limits patients lives, help patients and their families live as normal of a life as possible. Helping lessen the number of families that fall apart due to living with this condition. Bridge the gap in communication/understanding between patients and their families.

I would appreciate any input or advice on organizations we can get involved in to help make these goals a reality. Thank you, Chrissy.

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