brethor9

I was diagnosed as Hyper Pots.....had elevated catecholamines at baseline and on tilt.....when tilted my HR goes over 30 and my BP rises significantly then falls....my specialist said this is deemed hyper....in fact when they gave me only a tiny dose of isopropolol? (similar to adrenaline) I had one of the strongest reactions he had seen (it was nasty lol!)

yep me too....initial rise of 30 beats and elevated blood pressure; after awhile they drop but I become very symptomatic and my legs mottle....my specialist said POTS just isn't about HR and BP that's why we can still feel like crap even when our HR and BP is fine

Peace I think the big thing for me that won it was the absolute chronic exhaustion and the fact I could not maintain homeostasis at times. Ask your doctors to not sugar coat anything....there is part of the documents where you explain the impact on your life....dont be afraid to really slam the point home that you are unable to function period (I know now when I see my GP I tend to down play how craptacular I really feel because she doesnt understand the illness itself...she keeps asking when I will return to work lol!.so I understand you on that point....luckily I have a specialist in Hamilton that just looks at me and knows )) not sure where you live but is there any way you can get in to see an actual POTS specialist? duh just reread your first post and you are going to see an EP....good....when you see her be sure to be very clear with her that you cannot function and that you are disabled enough to not be able to keep working....ask her to make sure she writes that in her consult note so you can apply for disability

I live in Canada and was approved for CPP the first time. I was diagnosed in Hamilton with POTS/OI and autonomic dysfunction......I think the real reason why I was approved was my specialists in their consult notes and in the CPP documents were very clear and concise that I was severely disabled by my illness and severe chronic fatigue and could not work. We also sent over 65 pages of documentation from the onset of my illness (you can never send too much information ) and information about the illness (because its rare and most medical working for CPP probably hadnt heard of it ...) basically you have to be very black and white and leave no doubt that you are disabled by it....at the time I applied I was just started on my first medication. Just dont take no for an answer....... good luck! Bren

This also happens to me every time I over exert myself in any way....one of my dr's thought it was due to catecholamine dumping (too much adrenaline in the system and my body takes along time to filter it) Bren

keep us posted liz ! thats the next one on my list to try Bren

Hi Katybug! I don't have EDS but I just went through a scare with this actually just recently. My mother is a survivor of bilateral breast cancer several years ago.....because of that I now have to have mammograms every year due to the high risk. I went for my mammogram and about 3 days later received a call from my Dr's office saying they needed me to have a follow up ultrasound to my mammogram.....they said no reason why and it was a friday...figures.....I spent the whole weekend sick to my stomach that something was wrong. Any ways long story short I was told I too have very dense breasts and they are fibrocystic also and on a mammogram the density shows up as white snow as does cancerous nodes so because of this they cannot tell the difference. A breast ultrasound allows them to see the fibrocystic glands and surrounding tissue better without the snow. So now every year along with my mammogram I will have to have an ultrasound also its actually quite common among women.....hope that helps Bren

Christy I wish you all the best and hope your son is on the road to recovery soon hope you score a goal!! I wish we had a specialist like Dr Afrin here in Canada...I have been consulting with him by email but unfortunately we have none of the applicable testing available here in Canada except for Tryptase....there is talk of it but it could be ages away right now mine is based on clinical symptoms only and only stumbled on it through an oncologist I worked with. Crossing my fingers for you Bren

lol I hear you! Like we dont know our bodies by now right? Also, I dont know about you but with any med it seems I am always the one to get the "rare" side effects Bren

Thanks guys for the input! Peregrine I agree with you! For me I am pretty darn sure its the beta blocker as all the other meds I am on I have been on for a long time and they never affected my weight. Also my son just recently in the last month or so was also put on a beta blocker and he has gained major weight so I dont care what doctors say they do make people gain weight! I am now going to go off the beta blocker and see if I can try Clonidine....side effects from the beta just arent worth it.....messes with my MCAS too much and now the horrible weight gain.....I am done ;( Bren

Hi Corina! Not to hijack Tennille's thread but I just wanted to ask you a quick question? How did they determine you had stomach pooling? I feel this is becoming a huge issue for me and have no idea how to get tested for it? Thanks Bren

Hi all! Just looking for some input? Over the last month or two I have had what I would consider an extreme weight gain....at least 20 pounds which is very odd for me considering I hardly eat anything....I have never had a problem with weight before..if anything I have always been underweight. The only medications I have started within the last several months are a beta blocker and antihistamines. My regular meds that I have been taking for over a year are florinef and lorazepam and I am pretty sure its not them causing the gain. I have heard some people say beta blockers can cause this. My concern isnt out of vanity but I am wondering if this could be why I have been suffering extra joint pain lately also..... Does anyone have any input on whether this is true? should I be concerned? I also have suspected MCAS and really want to be off the beta blocker because it aggravates my other symptoms but my Dr is being sticky about it. Is there any other type of medication like a beta blocker but without huge weight gain issue and would not aggravate the MCAS symptoms? Thanks Bren

I think it runs from the brain down to the abdomen and has many branches....it controls alot of bodily functions...handles incoming and outgoing signals from the brain to nervous system...effects breathing, digestive system etc and is very sensitive lol! hope that helps Bren

YES!!! I have the same symptoms.......crazy my dr also said it was likely to do with the vagal response Bren

oh lilybits I am so sorry to hear about that hang in there....... wondering if I could ask how does the dr know its what is causing your POTS? and what symptoms did he base it on? big hugs! Bren

Thats weird I actually have no problems with magnesium but I just started caltrate with calcium and vitamin D and boy did it make me feel strange.....wondering if it could be a filler reaction? Goes to show how different we all are and some of the crazy things we react to Bren

Beautifully said Issie Thank you for that!...... Bren

I have had the same type of vision issues since getting this illness in the last year I have had to have my eye scripts changed twice Bren

Thanks Schorobi! Thats good to know does it effect your blood pressure at all? I mainly have high but it swings alot and can go as low as the 90's on some days...thats why the beta isnt working so well Bren

Thanks Issie! I was warned about the beta blocker making the mast cell worse but my auto doc felt it was absolutely non-negotiable as I was having irregular heart rythmn not just tachycardia anymore. I am on a really baby dose but it still sets me off. We are trying to find an alternative...he is thinking maybe a CCB or Ivabradine or Clonidine next...... its hard having 2 illnesses that work against each other isnt it? Bren

actually Sue I agree with you! I strongly feel this illness is somehow tied into hormone balance whether it be cortisol, insulin, alderstone etc... just dont know where the link is.....wish more endo docs would do some research on us... Bren

I have reactive hypoglycemia "adrenergic postprandial syndrome" — the glycemia is normal, but the symptoms are caused through autonomic adrenergic counterregulation[......I found cutting down on my carbs intake has helped a little but I still suffer with it no matter what I do.... Bren

Issie I can sympathize with you I am also one of those people that had hourly surges all day, every day it was miserable...(my best med for that was lorazepam...recently read that it is also a mast cell binder....explained for me why it calms alot of my MCAS stuff down). I mostly have high BP with high tachy but if I get episodic enough it will go to the other end of the spectrum. I recently had to suck it up and give in to being put on a tiny dose of beta blocker but am finding its wreaking its own havoc now I am edging into bradycardia and BP under 90......and it makes the pooling and Reynauds sooo much worse....and like you I have been getting horrid water gain. You are definately right 6 pounds in one day is not normal and is not good for your heart....thats fluid build up.....hope your docs can get you figured out. I was thinking of trying clonidine but now not so much......hate this illness..its always such a catch 22.....wish we could all just shut down and reboot the system hang in there Issie...Hugs Bren

Interesting read Issie! It goes to show that there is so much going on in the body and how it reacts that we just dont have an understanding of yet its why I think its important for Docs to pay attention to the clinical symptoms and not just what the lab tests say..........off topic but I actually met a woman the other day who has the opposite illness ....hypohistaminemia ?......she has hardly any and it makes her very sick...who knew? too bad we couldnt balance each other out Bren

Hey Kat! Welcome to the site but sorry you are sick you will find lots of caring people here and an endless amount of helpful information in answer to your question I most definately notice my symptoms get alot worse when my digestive system is in shut down mode. The bloating, heartburn, pain, loss off appetite...I always know I am in for a flare when my stomach starts acting up....I am just starting Domperidone this weekend to see if it helps....here's hoping feel better soon...hugs Bren