Sarah4444

I have been told I have hyperadrenergic POTS, but I don't have hypertension. However, I think I may have postural hypertension - sometimes. My bp is about 90/60 lying down and more like 120/80 standing, at first, then it seems to fall. Other times, it falls when I go from supine/sitting to standing. The last doctor I saw told me that I can't have hyper POTS, as I don't have absolute hypertension. Can I still be one of the low flow people? How do you figure all this stuff out?

What is the theory behind this?

I hate to sound dumb, but what are angiotensin II catabolism problems?

I hate to sound dumb, but what are angiotensin II catabolism problems?

I think that a big part of the problem historically has probably been mis and underdiagnosis, most likely due, at least in part, to the fact that many more women than men are affected. However, I have heard other people comment on the fact that it seems increasingly common - because it is still so under-recognized by the medical community it would be impossible to tell. Are more people getting it or are more being picked up and referred? Or both? One theory from the EDS world is that people who would normally have gotten into trouble in old age are now for some reason getting POTS in their 30s/40s for my generation, and now our children seem to be getting into trouble even younger. I don't know enough to evaluate this, but would be interested to hear others' opinions.

I know exactly what you mean about the acting. Because this snuck up on me and I couldn't explain it, I just got really good at acting normal, to the point that I was even fooling myself. I blamed my symptoms on other things, like pain, and it wasn't until I literally could not stand up that I was forced to look at things again. It has helped me to be able to name things, but like many other posters here, I think I expected others to care and understand more than they do. I am lucky with people close to me that I can be honest and get support, but in the outside world, I am back to acting again - it's like a habit I can't break. It's hard on my kids, because they get to see the real me, who can barely move after going out for a short time. I have also had the weight things you mention - for 20 years I would stay 130 lbs no matter how much I ate. Then I suddenly gained 30 lbs (and started to get migraines and had galactorrhea). I was diagnosed with a pituitary microadenoma. Since then my weight fluctuated but stayed high while I was really sick, and now seems "stuck" again around 160, even when I can barely eat or manage to exercise. I think that before, I was burning lots of calories just trying to stand up and function with POTS, but now I feel like my metabolism has been highjacked and is unfamiliar to me.

Hi Jennifer- I get episodes when my legs feel heavy and wooden and it's hard to walk, especially if I try to hurry. I haven't had the limp. I also get lots of weird tingling/numbeness in my arms. It is especially pronounced when I try to raise my arms above my head, but was happening a lot at night last summer. Sometimes I would feel like I couldn't sleep because the discomfort from the arm tingling was so great and drove me nuts. Don't know if this helps at all.

Thanks, Crow. I feel like I'm trying to learn about so many things at once, it's a bit overwhelming. Does this test look at collagen defects? Or metabolic disorders like the glycogen storage disorder mentioned on a recent post?

I can relate to the kind of desperation you describe. Have you had a chance to look into whether you might be one of the people with mast cell activation? I am, and the MCAD meds have helped me get out of what you are describing. If you haven't had a chance, Google the article out of Vanderbilt by Shibao et al (2005) called "Hyperadrenergic Pots in Mast Cell Activation Disorder" and see if it might apply to you. Hang in there.

This is a really interesting topic, please keep us posted!

What do cc and snp mean? Also, how is the test you guys had done, and what do they look for?

In the Vanderbilt article, they mention that sexual activity triggers increased symptoms in those with hyperPOTS and MCAD. When you really think about everything we have to deal with, it's amazing that any of us ever feel like having sex. I can't help but feel that this is another area where we are hurt by the fact that so many more women than men get POTS. Male sexual troubles seem to be taken so much more seriously by the medical establishment, and I feel like if I even brought this up with doctors I'd be risking that I would just be brushed off or stereotyped.

I know exactly what you mean dani, this is so hard. Once I finally figured out what I had had for so long, at first it felt so liberating and amazing to have a name for all the strange symptoms I had been hiding as well as I could. But then I realized that there were no easy answers or cures, and I got really angry again. I feel like my life is being stolen from me and it's so hard that most medical professionals can't even relate to what we feel and how severe our disability can be. I am trying my best to cultivate patience, to educate my doctors and to enjoy the time I have with my kids rather than always feeling left out of everything. At least here there are others who get it, who know what we are up against on a daily basis. Hang in there.

Thanks, Julie, you're the best. I wonder if I could try taking Florinef just one week a month. Has anyone ever tried this? Would it mess with my system too much to go on and off like that?

Thanks, guys. Julie - I started with 1/2 tab daily (.05mg) and seemed to be able to manage it at first, but didn't notice any positive effect. When I increased it to 1 tab I ran into those odd side effects, and ended up in emerg within a couple of days. Then as I reduced to dosage to go off it, I felt awful too. When you say you take it during flares, are you able to take it for a few days and then stop with no problem? I am doing much better most days than before, but am basically back to bedridden the week before my period. I'd love to try something I could just take during that time, when I also find I am peeing constantly. jenwic - That feeling you describe having at night is what used to happen to me every night, until I started taking 20 mg doxepin before bed. Is there any chance that MCAD is affecting our kidneys, making the Florinef potentially helpful? I don't even know exactly what the med does - makes us retain fluid somehow/replacing aldosterone or something?

I tried taking Florinef last summer for about a month and felt terrible. While taking it, I had eye pain and pressure, headaches, and increased chest tightness and discomfort. However, at the time I think I was having symptoms of mast cell activation, which are now better controlled, and I don't know if the "flare up" experience I had was due to untreated MCAD or taking Florinef, or both. I am now taking 35 mg of midodrine a day, but still have less than an hour of tolerable standing on a good day (often MUCH less). I know that I have to come to terms with the fact that this is disabling (I am not doing a very good job of that), but also don't want to accept an unnecessary level of disability, if I could be doing better. Would it be worth trying Florinef again? Is it something that can be taken indefinitely? Can you share your experiences with it, side effects, that kind of thing? Thanks in advance for the advice.

I have difficulties swallowing, choke on food and drink occasionally, and used to wake up with a choking feeling as well. I associate it with POTS/MCAD because these difficulties have gotten worse as POTS has. There is a study on the EDS website about people with Ehlers Danlos commonly having the feeling that they can't swallow properly, and I also read a study reporting that the sensation of swallowing air (which I also have) is found in people with mast cell disorders, who often apparently also have esophageal inflammation. In my case, I think it's some combination of these factors.

In addition to the webiste Chaos mentioned, I would recommend taking a look at the youtube video series about MCAD that features Dr. Castells and a few others. Just search for "mast cell activation". I also find the reseach/info available on the Mastocytosis Society of Canada site to be very helpful.

I didn't understand exactly what you meant about not being able to go without eating if you had MCAD. For me, eating is a major trigger of MCAD/POTS symptoms.

Welcome, and sorry you have to be here. I have had many of the bizarre symptoms you mention. My digestive stuff got very bad as well, and didn't get better until I started MCAD meds. With regard to exercise, I find that I am still unable to tolerate land exercise, but do gentle swimming with a float belt. When I started last summer I could only do about two minutes, but now I can do 20 minutes a day. Progress in every area seems to be extremely slow and variable with POTS. If you haven't, you should go to the Ehlers Danlos website and read about it at www.ednf.org. Many people with EDS get POTS, and some of them seem also to have MCAD, which I am still trying to figure out. Good luck with all this.

I did not know I had this at the time, but years ago when I took birth control pills my illness was worsened and I had to stop taking them. Looking back, the mast cell activation part of this for me seemed to particularly worsened by the bcp hormones - I was itchy all the time, had GI symptoms flare ups. I also had worse tachycardia/POTS symptoms.

You are right, I was trying to steal a quick shower standing up. Absurd, the things we are penalized for. For those of you who added fainting to their delightful repertoire, if I avoid things like trying to shower standing up and getting really cold then warming up too fast (hard to avoid way up here in the North!), is it likely I will have to worry about fainting in other, less orthostatically stressful situations? I don't want to stop driving again. I can do so few things that feel normal.

Overall I am doing better. I was totally bedridden for months last year, but once I figured out this is POTS and got some meds going things have improved. I still am far from normal/functional but at least am no longer bedridden. However, over the past couple of weeks I have had two very near-fainting episodes. I usually just have the intolerable orthostatic intolerance/not enough blood in my head/major fatigue feeling along with a bunch of other things, and haven't passed out since one time in the 80s. One recent episode was after seeing a lot of blood after a child bit her tongue badly and then coming inside from being very cold, and the other was in the shower trying to shave my legs (I got the "LIE DOWN!" feeling but have always been able to push through it long enough to do things like finish shaving a leg). Why, after all these years, and now that I am on more midodrine (35 mg total) would I start having these episodes at this point? My only theory is that the increased midodrine dose is dulling the "have to lie down now" feeling and I am pushing farther into it than I realize, but this is new and any input would be very appreciated.

I think I read that if the symptoms are very severe (and I don't know how they define that) they have been experimenting with plasma exchange, with some positive results.

Well THAT made me cry. Best wishes, Another "Life Amputee"