NMPotsie

Thanks so much for your answer. I am on both h1 and h2 histamine blockers, as they had suspected a histamine issue prior to the pots diagnosis because I was flushing a lot and my urinary methyl histamines were very high after the flushing episodes. I was on these prior to starting the bbs so maybe that helped. I have a couple of great doctors but they don't really explain anything to me (or maybe they do but I'm too foggy to get it lol) so its great to have you guys here help explain stuff. I hope you find some relief. I'm so sorry no one has been able to find anything that sticks for you.

Yeah absolutely I will let you know. The problem is I could see another doc tomorrow who says the opposite. I have no evidence that most of them know what they are talking about. They need to do a study on that!

Lol mcblonde that's so funny because I was reading this laying in bed with a spontaneous attack of resting hr at 125 and pounding so hard my teeth are knocking together thinking the exact same thing! Stupid pots.

Issie I have a question about that, if you don't mind. I have high ne and symptoms that are clearly mast cell related, but the bb works so well for me. I read the study about bb and MCAD and I thought well that settles it I don't have MCAD, but the doctors still seem to think I might. Is it possible to have MCAD and still respond well to bbs? Or should we go down another road? P.s. I had the same reaction to clonidine as Issie did to the bb. Rebound hypertension like the devil!

Thanks for responding. Naomi he is a doctor who treats people with LDN, which is partly why I sought his opinion, but he said it hasn't shown any success with ebv. He also said there are many studies that show promising results with retrovirals in ebv but that when applied to people (rather than animals or test tubes) they don't show any effect. So basically he doesn't see any useful options in those areas. He suggested strengthening my immune system by replacing some of my low vitamin counts and possibly adding 600 mg ALA orally (or intravenously, which may work better) because it somehow helps vitamin c do its job and also scavenges free radicals. I am currently researching this angle. He also suggested an immunologist. I have a followup at mayo with dr. Goodman in sept., so he told me to contact them for that. Klues I'm sorry you are having those issues. It's so frustrating!

I've had issues with chronic infections and have seen a host of specialists trying to figure out what is going on. Recently I saw a doctor who ran a host of immune system tests and everything looked great except the ebv panel, which showed chronic Epstein Barr. All of the numbers were high, but the one he pointed out was the recent indicator, which was over 1500. This is out of my area. Can someone help me understand if this could be causing some of my immune system issues, and how?

The widest I've ever had in the doctors office was 154/52, and the narrowest was 140/120 neighborhood.

I know exactly how you feel! I spent two years going from one specialist to another dxd with everything from anxiety (of course!) to sulfite sensitivity. I found this forum and diagnosed myself. Then had to convince my dr. that my referral to mayo was necessary. Even after all the research I did, he referred me for orthostatic hypotension and said he didn't think I had pots! My pots doc is 7 hours from me. I feel your pain. I don't know about your beta blocker, but low dose seems to be better with pots especially for the breathing issues/chest pain. I was started on the low end and settled well with 10mg propranolol 3 times a day. My gp says that's not enough to do anything, but it has absolutely changed my life! It did take awhile for me to adjust to the bb, though. About 3 weeks in was when everything just smoothed out.

Oh yeah, and it's good to take B in the a.m. because it helps with energy and, like Issie said, magnesium in the p.m. because it has a calming effect. I haven't noticed symptom improvement except from the B12. I was SEVERELY deficient and my fingers tingled and fell asleep all the time. I was also spacey and (according to my husband) kind of demented (like I would ask a question and then repeat the same question and not remember the conversation). All of these symptoms have gone away now that my B12 is up to a whopping 300! LOL

I couldn't tolerate magnesium due to severe gi side effects. The resultant dehydration exacerbated my pots and really did a number on my bp. Now I take oodles of vitamin B (all of them) and vitamin D3, as well as low-dose CoQ10, fish oil, and a multi vitamin. I did notice some slow-movement in my gut when taking them all together, so my doc added a probiotic and it all sorted itself out. I have no issues from anything except the magnesium, which is a total no-go for me so I just have to eat magnesium-rich foods. I recommend choosing vitamins carefully. They are not well-regulated for potency, and my nutritionist (who has both an MD and a PhD in biochemistry) says it is a crapshoot with many companies; also, hard tablets are often not as well absorbed as capsules/powders (creating very expensive urine LOL). I take Metabolic Maintenance brand because they have independent testing to ensure (and document) potency. This is crucial for people like me who take CoQ10 but cannot tolerate high dosage due to effects on bp (I need to know what I'm taking). Sorry, maybe TMI. I'm a vitamin nerd.

Sorry you have to be here, but glad to have you. There are quite a few of us who have the symptoms you describe. I have fairly low bp when supine (90/60 area) but got up to 140/96 at 10 mins on tilt. I also have the adrenaline spikes that many of us hypers have; my bp gets up in the 180/160 area with a spike. Have you had your plasma catecholamines checked? Those are usually high with those of us with these symptoms.

Alex when I have gone to the ER for spikes and they have given me clonidine I have had issues afterward. Typically my spikes last 2-4 hours and then I'm just out afterward for days. When I was given clonidine, though, I had multiple spikes afterward, which my doctor attributed to hypotension from the clonidine and rebound hypertension as a reaction to the hypotension (wow, that's a mouthful). Anyway, he has cautioned against clonidine and leans toward valium or xanax for quick relief. I'm not saying it's the same for everyone (I know Clonidine works for some) I just wanted to offer that to you since your bp is usually low and it sounds like you might have potential for the same issue. That being said, I have limited success with the xanax as well. I just have to keep telling myself I'm not going to die, even though it feels like I am, and that it will stop eventually.

Propranolol has really worked for me; I am much less symptomatic and as long as I don't have a blood draw I'm pretty functional after appointments, but everyone seems to be so different it's impossible to tell. I am much less lightheaded and dizzy than I used to be, but I would not say it has gone away at all; it's more like you acclimate to it. I think I'm not as tired because my heart isn't running a marathon like it used to when I did anything, but it races sporadically or when it's hot, if I drink alcohol (big no no!). etc. Overall, in my case, I would say I am conscious of my POTS symptoms on a daily basis, but where they used to keep me functioning at about 40% I now function at about 70% (some days more, some less). I'm incredibly grateful for this, though. If I had had to continue living feeling the way I did I think my mental health would not have withstood it.

A few times for bp spikes; they gave me clonidine, which made me feel terrible, so I quit going. I have a standing order for IV fluids now so if I need that I just take it in with me and skip the explanation. When I feel awful, trying to explain POTS just makes me feel worse. When I was given clonidine in fairly high does at the ER, I ended up having an additional spike within the next few days. Dr. says it's because of resultant hypotension, which can create rebound hypertension and can be a vicious cycle. So, no Clonidine/ER for me if it all possible.

I get nauseated, shake, and am very agitated. People tell me to lay down but it's impossible; I get almost manic. I pace around, sweat, have hot flashes, but am shivering and feel cold generally. I get weird ear symptoms too, like I hear buzzing/rushing in my head. Like alex, I am a mess once it is over; exhausted, nauseaous, and I get a terrible headache that lasts for days. I am often completely bed-bound for 4 to 7 days after one of these surges.

I get headaches chronically, but when I'm off my meds for even a short period of time they are much more intense and last much longer; my hr also skyrockets much more quickly. Before I started the bb I got headaches but not nearly as bad as the ones I get now if I miss a dose for a day. No idea why.

I take an extra half dose of propranolol, and if that doesn't bring it down I chew a .5 mg xanax as suggested by my doctor.

I have pernicious anemia, with B12 in the low 100s, and vit. d/magnesium/potassium deficiency. I was told that malabsorption is a common problem in dysautonomia and nothing to worry about other than the B12 (because that is related to another issue). I just take the vitamins. I also always get that white cell note on urinalysis because my POTS seems to be autoimmune related and I'm constantly fighting infections. Still, they never worry unless I have an active infection. I've gotten so good at knowing when I'm coming down with an infection that I go to the doctor completely asymptomatic except that my white count is through the roof. As long as the white count is okay on the cbc they don't worry.

I guess mine isn't quite as bad, but I am incredibly dizzy after I eat and I constantly have to urinate, which my doctor attributes to abdominal pooling I also get mottled skin in my abdomen, but I don't seem to bloat like everyone else.

I have had some degree of OI my whole life, but the H1N1 vaccine in 2010 was what triggered my current symptoms (and much more severe ones right after the vaccine). I couldn't walk without bumping into the walls, ride in a car without getting sick, or stand without flushing and passing out. It's better now, but I would NEVER get another h1n1 vaccination. I've had mast cell symptoms since I was 13, but the flu shot was what pushed me into POTS.

I get severe, stabbing left-side chest pains, and feel like I can't breathe. I will double over from these suckers. My heart is "perfect", according to my Mayo cardiologist; Dr. Goodman says it's typical for POTS.

Propranolol 10 mg 3 times a day.

That is great, Issie. I would give a lot to be able to go to a store for that long. I got yelled at at a big chain do it yourself store for sitting on their ladder the other day, so I sat on the floor. It just *****.

Thanks, squirrel. That's helpful. I'm also glad to hear I'm not the only one, though I wouldn't wish any of this on anyone. I do work out, quite a bit, so in my case that doesn't really seem to be an issue. I do notice it's worse when the weather's bad, esp. if we have a low front (as we have the last few days).

99% of the time when I feel bad extra salt and extra fluids ease my symptoms. This is the only addition to my POTS regimine that I can see clearly makes a difference. However, I can't even wear my wedding rings anymore because my fingers are so swollen! I would love to get off the salt!