Sarah4444

I'm so glad that you finally got someone to listen and help, that must be such a relief. I hope that they are able to sort this out with you as soon as possible. Please let us know what happens.

So far that's how doxepin has been helping - I fall asleep more easily, stay asleep better and it doesn't make me groggier than usual the next day. I have only been taking it a few weeks, though and others find it quite sedating - some only take 10 mg. Let me know what happens if you try it, and good luck.

Friedbrain, please keep us posted re what you find. I find the things we have in common interesting. Whatever's wrong with me is also much worse pre-menstrually and I was also having odd episodes like you describe at night - I wondered if they might be a kind of seizure.

Hey Jonathan - The 20 mg. doxepin I was prescribed for mast cell activation is helping me sleep better. I also find that mindfulness meditation helps me slow down enough to fall asleep. There's a book called Full Catastrophe Living by Jon Kabat Zinn that has a good program for living with chronic illness. It's been quite unpleasant here in Canada too and I have also been having more trouble with tachycardia than I had for a while - do you feel the cold is related to your symptoms increasing?

That's very interesting. I took large doses of folic acid for years when I was having my kids, and did get much worse over that time. Sorry I can't answer your question.

Irish, French and Scottish here. Lots of Irish on this list...I picture travelling to Ireland and seeing a whole country of people lying down...

When I feel really rough I also have the feeling that I am literally being sucked into the earth, like someone has turned gravity up too high, or even that I have something wrapped around my neck that someone is pulling downward - so yes, I guess it sounds weird, but you're not alone. I wish I had more things to suggest that might help. The only thing I can think of is that I take midodrine 5 mg four times a day, but when I tried to increase the dose to 7.5 I started getting high bp readings for the first time. Did you recently increase your dose? Sorry things are so difficult right now, let us know how you are doing.

Rachel, I really hope you continue to improve. It's so scary not to know what can cause a flare up like that. When I read your most recent post I was amazed at how many things I was feeling this Aug-Sep that were very similar. My palms didn't peel, but they are itchy and burn sometimes. I also had to stop Florinef because my eyeballs felt they were going to explode - what is strange though, is that I have a friend who is an optometrist, and a couple of days after I stopped taking it he measured my eye pressure and it was below normal, even though it still felt high. If you have the energy, please let us know what you find as you continue to see doctors, and what helps (or doesn't). I have learned everything about this by reading posts and articles, and need to keep learning. Take care.

I have an appointment with a geneticist in two days to look into whether I could have a partial DBH deficiency. I needed my catecholamine results from my TTT so I spoke with a nurse who faxed them in. On the phone she reported that my epiniphrine had been normal/normal/high (0.4/0.2/20.2 with the normal being <0.8) while my norepinephrine was low/normal/high (0.6/2.2/9.2 with normal 0.8-3.4). Can anyone explain to me what these results might mean or their implications? Does the high final level suggest hyperadrenergic POTS? I don't have an appointment with the autonomic specialist for another couple of months, and when I see him will most likely forget most of what I am trying to ask, like I always seem to do when I finally get to see a doctor about this stuff.

The MCAD meds have been helping me breathe better: Reactine/Zyrtec, Zantac, Gastrocrom/Nalcron and 20 mg doxepin at night. I still have most of the other symptoms and problems but at least I can usually breathe better - I hope it's not just because summer has left and it's full blown winter here!

Hi Susan- I was interested to see what you wrote about migraines. I have had episodes of whatever this is for a long time (I seem to have MCAD symptoms along with POTS). However I got worse after having my daughter 10 years ago, and then much worse during my second pregnancy with my son who is now 6. About a year and a half after he was born I started having migraines for the first time in my life, and these went on frequently until the spring of this year. My POTS seems to be getting worse too. I wish I could be more help. I recently posted about a genetic test I had - if you're interested just look at my post.

I'm sorry I can't help autumn, actually I am wondering if you can tell me whose idea it was to have IV fluids, and how you and your doctor decided to go this route. Had you tried any meds yet? How did they work? I am just wondering because I have seen some very slight improvement with meds but am still pretty disabled and housebound. I am wondering about trying IV fluids but none of my doctors have suggested this or even seem to know it is an option. I am not sure how to proceed.

Another thing that I forgot - from what I have read about most forms of Pure Autonomic Failure, they expect that the fall in blood pressure on standing would not be accompanied by a rise in heart rate. I believe that DBH deficiency is a form of PAF, but in this case the OH is accompanied by the compensatory tachycardia. I wonder if some POTS diagnoses may arise from this effect.

I had the uncontrollable shaking this summer too, when it was cool at night and I got up to use the bathroom (but I was July, so it wasn't really cold). Will you keep us posted regarding what they find out?

Just another piece of the puzzle. In August a geneticist up here in Canada ran a test for dopamine beta-hydroxylase deficiency. When I looked it up at the time I read that only 18 or so people have been identified with it so far, so I assumed my test would come back normal - I mean really, what were the odds...? They seem to think it is an autosomal recessive condition, so I would need two abnormal genes to have the condition. So, the test results came in last week and apparently one of my DBH genes is normal, and the other has a sequence variation of unknown clinical significance. So if the condition is recessive, that would mean I don't have it and am at most a carrier of something. But DBH deficiency causes severe orthostatic hypotension due to autonomic failure. Although my bp didn't drop during my TTT (of course), it does all the time when I stand up, and this summer was dropping all the time even while I was supine. So now I'm thinking what are the odds that I have an abnormal DBH gene but have orthostatic hypotension caused by something else, and this is just a coincidence? As I read further about DBH, it seems that the mode of inheritance is not totally finalized either, with one study from the Netherlands stating it is an autosomal dominant condition. DBH is the enzyme that converts dopamine to norepinephrine, so people without the enzyme have no norepinephrine (or epinephrine/adrenaline?) and seem to use dopamine in its place. I don't have my catecholamine results from the TTT yet, but I have a lot in common with the hyperPOTS people on this site - Friedbrain provided a great explanation last week as to how this could be even if I have low levels of NE (thanks!). So now I am confused. I also have many things in common with the DBH deficiency people - this orthostatic intolerance has been creeping up on me as long I can remember, my mother has a history of pregancy loss, I have a high palate, some hyperflexible joints, a history of anemia, insomnia, polyuria, postprandial hypotension, some evidence of hypoglycemia and increased creatinine... but I don't have the two abnormal genes. I have an appointment with a new geneticist this week (the one who originally ran the test is not coming back to my local genetics clinic as far as I know). Am I crazy to want to see if there might be a significance to my genetic result? What if I have a partial, but not total deficit of DBH and could still be helped by L-DOPS (Droxidopa?), the medication they use to treat orthostatic hypotension caused by this condition? I am very worried that they may have stumbled upon the cause of my POTS and yet not know it because not enough is known about the DBH variations. The internet tells me that they only test for this at three centers in North America - Toronto, Atlanta and Dallas I think. This means that few people are getting tested, and there are probably others out there with at least some degree of DBH deficiency who will not get tested - if few doctors know about POTS, and fewer seem to try to identify causes, how many would know to test for DBH deficiency? Does anyone have any knowledge of this condition, and/or advice regarding how I should approach the upcoming appointment? Much of my life has been slowly stolen from me over the years by OI, and I'm desperate not to let that happen to my kids. The genetic counselor at Dr. Francomano's office in Baltimore suggested I email Drs. Robertson and Garland at Vanderbilt and outline my situation, and ask if they know of any instances of carriers being symptomatic or of variations which might have clinical significance. Should I do this before or after seeing my local geneticist? Should I do it at all? Any input is so welcome. Here's a link if anyone is interested: http://www.ncbi.nlm.nih.gov/books/NBK1474/

I had similar sleep problems and have been doing much better after starting 20 mg doxepin at night. Do you know why you are waking up? I found that I was having some kind of episodes in my sleep that would leave me waking with tachycardia, feeling very odd and wired.

I think that on the Canadian Mastocytosis Society there is a link to or information about the UK masto site. It was through the Canadian site that I located a doctor who is familiar with mast cell disorders and who prescribed and epi pen for me (he's a dermatologist). I have no history of allergies but seem to have developed the kind of anaphylaxis that goes along with MCAD. It happens in conjunction with my POTS (they may be the same thing, or one may cause the other - I can't figure this out).

I wish I was an expert, but am just in the diagnostic process too. To learn about the connective tissue disorder that seems most commonly associated with POTS (or most easily diagnosed, maybe) go to the Ehlers-Danlos foundation (www.ehnf.org), and to learn about mast cell disorders, try www.tmsforacure.org. Many people with POTS seem to have one or both of these, but I'm not sure how they all fit together yet.

K's mom- Sorry for all you and K are going through. I wish I had answers, but just wanted to comment on the hypermobility you mentioned. I don't have obvious hypermobility or hyperextensible skin, but still have a Hereditary Disorder of Connective Tissue (there are over 200, EDS is only 1). I also have the MCAD-type symptoms that many people with POTS and a HDCT have - treating those has decreased the critical nature of my symptoms and has allowed me to begin sleeping again. I am not clear whether I have MCAD which causes POTS, or the other way around, or something else causing or worsening both. But while I try to get help figuring this out, it seems to help me to treat the POTS and MCAD at the same time. Good luck.

Hi, and welcome. I drink warm broth and eat olives and pickles - I didn't like the effect of salt tablets. Good luck with all this.

I have been fighting with this since at least 1985. My mother is a doctor, and I had hoped to be one too, but I now realize I had my first episodes of severe orthostatic intolerance in my mid to late teens and then had to fight my way through university sick as well. I was able to get grades high enough to go on, but my body was alreading giving out. I managed to get a teaching degree and then an master's degree, but had to do the latter lying down on a lawnchair. I kept pushing myself for years, thinking at one point I would get better and then could pick up with a career. But having kids has been physically very challenging, and I have only managed to work 4 years part-time since graduating many years ago. I have been bedridden and unable to function this year (a little better now), but I wonder if pushing myself through things I was physically really struggling with has made me worse over time.

Sorry to hear what a bad time you have been having, sandyshell. Your doctor seems great. Mine is nice, but doesn't search around for what is wrong - he will make referrals, write prescriptions - but I have to tell him the doctor's name and specialty and ask for the referral. I asked him to test me for EBV and I was positive, but that doesn't really tell me much I guess. I suspect that immune issues affect me as well when it comes to POTS, but don't know how to look into this. Is there any research or articles from your doctor's conference or that you have come across re how this could link with POTS that I could read and maybe bring to him to try to start this line of inquiry? And if you don't mind, will you tell us what you find out? Thanks so much. Without this forum I'd probably be dead.

Hi autumn- I don't know if this will help, but I also have strange tachycardia issues. I kind of divide them into two categories - I get the "regular" POTS tachycardia when I stand up and move around, which can be anywhere from 100-150 bpm or so. But I also have episodes where I can feel a strange, uncomfortable feeling in my chest and my heart rate goes up to around 200 (and my bp drops). I caught one of those when I was wearing a loop monitor and my cardiologist said it was an episode of heart block (a P wave conduction abnormality?). However the episode I caught was a very brief one, so he didn't get to see much of the very fast tachycardia. I find I can usually avoid "clunking" over into the heart block episodes if I stay well hydrated, change positions slowly, and breathe in as I bend over or get back up. If I forget and quickly bend to do something like catch a glass that falls off the counter, I am likely to start one up. I don't know if this helps at all or how it fits in, but welcome. I was also terrified that my body may have not cooperated on the TTT, but apparently it did - now I'm having trouble getting to why I have POTS... It seems like a very slow process, but your doctor sounds great. Did she suggest IV fluid therapy or did you? I asked my cardiologist about it and he laughed at me. Sarah

Sara, I also take midodrine, and have since August. It still gives me a tingly scalp sometimes. I did not notice a dramatic improvement in symptoms, but definitely feel it if I am late taking a dose - once I added the MCAD meds, the two seem to be working together to gradually help. As long as it's not doing anything bad, give the midodrine some time - and let us know what happens. Good luck.

I hate to think of you not eating. I have been trying to sort this out too - it might be worth looking at the low-histamine diet to get an idea of which foods might be troublesome. I had a bad reaction after eating ratatouille, then found that eggplant is on the list of foods with high histamine levels, therefore likely to trigger MCAD people. I could send you a handout I have - just PM me with your email if you'd like it.