BSmith85 Posted August 3, 2012 Report Share Posted August 3, 2012 Hey everyone I'm new to the forum. I am 27 yrs old & have been dealing with symptoms of dysautonima since I was 17 & was only diagnosed a few weeks ago. My situation is unique in 1) I am Male & 2) I experience tachycardia & ELEVATED BP's with prolonged periods of bring upright. Was just curious if there is anyone else here who falls into the same category of autonomic dysfunction as I? Quote Link to comment Share on other sites More sharing options...
roxie Posted August 3, 2012 Report Share Posted August 3, 2012 Hyperadregernic POTS can cause high bp Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 3, 2012 Report Share Posted August 3, 2012 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. Quote Link to comment Share on other sites More sharing options...
BSmith85 Posted August 3, 2012 Author Report Share Posted August 3, 2012 Thanks for the welcome! Have not had catecholamines checked that I am aware of? My 1st visit to the specialist (2 1/2 hrs) from my home resulted in my diagnosis & being placed on 50mg atenolol bid as well as .5 klonopine at night in addition to norvasc I was already taking. Blood work was performed & I have yet to hear results? Know part of that was checking for vitamin D deficiency. My heart rate & BP have improved greatly but other symptoms such as stomach pain, chest discomfort, inability to take a full breath & hearing changes seem more prominent. Have always experienced PVC's but with the beta blocker my rhythm abnormalities seem to bother me a little more? Maybe it's just because I have been so accustomed to "skipped" beats & "flutters" with a HR of 90+ instead of 50-60 range it has been holding in fairly consistently? Anyway HUGE relief to have a diagnosis after all of these years. Just a shame I had to do my own research & make the appointment w/the specialist after thousands in med bills Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 3, 2012 Report Share Posted August 3, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted August 4, 2012 Report Share Posted August 4, 2012 You guys are not alone here. There are many of us with the high bp's. We still have the drops in our bp's and therefore have the tachy part of the syndrome - but, our drops may just put us down into a more normal type of bp reading. Like you NM, I drop even further with lying down. The docs still seem to be concerned about the highs through because of the damage that could potentially happen with those numbers. I've tried just about every type of med. available and haven't been real successful with any of them. Right now, trying a diuretic type drug - since I have horrible edema going on and that will pull your bp down too. I wasn't successful with the propranalol because it lowered me down too low at night - since I go low when lying down any way. And then I would get really bad bp hikes when the med started to wear off. Called rebound hypertension. Also, some have mast cell activation disorders and any type of beta blockers seem to cause a flare. So, I was somewhat successful with clonidine - except it made me really lethargic and a little blue in mood. I'm not on it at the moment - but, could only tolerate 1/4 of a pill - and that was really still too much. I'm super sensitive to meds.There is a whole lot of trial and error to figuring out what to do and what to take. But, with time - each thing you take - whether it works or not will give you clues as to what subset type you have and what is going on in your body.I have high NE (noriepi) levels and terrible surges with that. If I get those levels down - things seem to be better for me.Sorry you guys have this too. But, you will start to get your own pieces of the puzzle figured out . . .it just takes time.Issie Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 4, 2012 Report Share Posted August 4, 2012 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! Quote Link to comment Share on other sites More sharing options...
issie Posted August 4, 2012 Report Share Posted August 4, 2012 I think all of us are individual and what will cause a problem for one - may not cause a problem for another. I didn't do horrible on propranalol either - except it dropped my bp too much with lying and I couldn't take the pm dose ---so had rebound hypertension from it. It's been awhile since I took it - but, I thought in some ways it helped - but, since my bp is usually pretty high - couldn't have the wild swings from low to high.I think most docs try clonidine if there are high NE levels. The other drug my doc tries is guifacine. I could only use 1/4 of the lowest dose of clonidine 2 times a day and that had me very lethargic. But, it stopped the wild bp and hr swings and I leveled out more. It will be a reserve for me - if that starts to happen again. The amount of time I was on it helped to level me out and now I'm off it. I'm still trying the diuretic type things right this minute - had to go off the diamox - because of side effects - but, now using it only at night and only 1/4 of a pill. We will see how that goes. It does seem to calm the sympathetic reactions. And for me, it helps drainage in my head. Without it, I feel like I have way too much pressure in my head and almost like a sinus infection - but, there's no infection - just the pressure of too much fluid and it also affects my eyes.You and your doc will have to decide if the med is causing a degranulation on you. If you are on histamine blockers - you could be counter-acting that effect. It's hard for me to say for you. There is so much trial and error here. I think I've tried almost everything that has been tried in POTS and most things have been a no go for me. But, I haven't given up searching and having hope of finding a "purple band-aid" that will give better quality of life.Issie Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 4, 2012 Report Share Posted August 4, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted August 4, 2012 Report Share Posted August 4, 2012 Are you still having flushing, hot flashes, itching, asthma type symptoms? If so, you are could possibly still be having mast cell degranulation issues. Some of us have found NasalCrom to be of benefit - it's a mast cell stablizer. But, if that doesn't help - then you might consider your meds.Even with all the mast cell helpers - we still have issues with MCAS. It just helps it to not be as severe.Issie Quote Link to comment Share on other sites More sharing options...
BSmith85 Posted August 4, 2012 Author Report Share Posted August 4, 2012 Thanks Issie! I too failed to mention that I am also in a "normal" BP range when lying. With my new Beta Blocker I am actually on the low side when supine. The new meds seem to be controlling the BP spikes quite well so I can deal with the remaining symptoms ok. Quote Link to comment Share on other sites More sharing options...
issie Posted August 4, 2012 Report Share Posted August 4, 2012 Another thing to possibly think about -----there seems to be a sort of triology with people who have HyperPOTS with high NE levels and MCAS - many of us also have Ehlers Danlos (EDS) which is a connective tissue disorder.Issie Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 4, 2012 Report Share Posted August 4, 2012 Thanks Issie. i will bring all of this up to Dr. Goodman because though the flushing has lessened I am still definitely itchy, with random and spontaneous rashes. I do wheeze at night sometimes, but I think that's the beta blocker because it started almost immediately when I began taking it. Quote Link to comment Share on other sites More sharing options...
issie Posted August 4, 2012 Report Share Posted August 4, 2012 Dr. G. is really trying with all of us. I guess there is a new doc at Mayo that he is sending some to for mast cell issues - Dr. Rank. I had seen Dr. Lewis. But, there is another poster that said Dr. G was sending her to this new doc. I guess he has been transferred in from MN. It will be interesting to see what this new doc has to say about MCAS. Keep us posted.Issie Quote Link to comment Share on other sites More sharing options...
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