Hyperadrenergic Pots???

[jpjd59]

My daughter was diagnosed with POTS in November 2011. At that time I didn't realize there were different kinds of POTS. She just received copy of medical records from a neuro specialist in POTS that she recently saw and it says that he believes she has "hyperadrenergic POTS".

From what I can tell from research, hyperadrenergic POTS usually comes on gradually. In her case, it came on suddenly after a virus. Does anyone else have hyperadrenergic POTS from a virus? If so, what have you found that works for you (because she has not been able to tolerate any of the drugs that they have tried to give her).

[sue1234]

I don't think mine was caused by a virus(but who knows??), but mine started pretty suddenly. I also cannot tolerate any of the drugs or the extra salt. Not much for me to do.

[issie]

Yes, I'm HyperPOTS with high bp's and terrible tacky. I also use a good bit of alternative stuff
Issie

[jpjd59]

Issie:

I'm kind of confused about the doctor's report. He says that she has HyperPOTS because of her tachycardia and high standing NE level - but her blood pressure is not high. From reading posts on the forum you seem really knowledgeable about POTS. Do you know if you can have HyperPOTS without having high blood pressure?

[kayjay]

Hyper pots has to do with adrenal "dumping" when you move from a resting position to moving around a little. Most people with pots do not have hyper pots. I think the number is thought to be around 10%.

I have hyper pots and have had low and high blood pressure. Beta blockers help me because they block some of what the adrenals are producing.

You can have hyper pots without high blood pressure.

[issie]

There are a few that do have only the high NE levels and not high blood pressure. They go on what the levels of norepinephrine are with standing. If they go above 600 - according to some researchers you are considered to have HyperPOTS. Some of us, this doesn't only happen with standing. Mine will happen with movement and I might be lying in bed and roll over. It doesn't have to be only related to posture. Usually, it has to do with an over-reaction of the sympatethic nervous system and it does cause a fight or flight type feeling and along with this is an anxiety feeling. I have talked with some that say their release only happens with a posture change. So we are all so different. (My doctors tell me that I'm one of the hardest types to treat. I have both high and low blood pressures - but more high's. I have the postural orthostatic issues, where there is a drop - but mine usually starts from a higher level and may go down to a more normal level. But, with lying mine goes really low. I'm all over the place with my blood pressure readings. It's hard to treat because of the drastic swings in numbers.) Hopefully, some of the ones with the more low blood pressures and high NE levels will chime in here and say what's working for them. Since, I'm not one of the majority at all - what I do will probably not work for her. Whether or not the problem is with the NET (transporter) not working correctly or there is just too high levels that is a response to either low blood volume and it's a compensation type thing - it's hard to say. But, I can tell you one thing - having the surges that happen and the panic type anxiety is NOT at all fun. I hope that if it's a low volume thing - something maybe can get her blood volume up and there won't be such a strong reaction with the release of NE. If it's an NET dysfuction - then working on it at that level may help. I think there isn't as much research being put into this subset of POTS and we don't have any real clear answers as to what is really going on and what will help it.

It would be good to determine what her blood flow type is. If she is low flow, or normal flow, or high flow. I think alot will depend on that and if she is hypovolumic or not. Some of us need to vasodilate others need to vasoconstrict. The medicines can be used to do both of these things - depends on which one you are using. There is a whole lot of trial and error - more error than anything. There's no set rule or forumula that will work for everyone.

Some of us with HyperPOTS are finding out that we have mast cell activation disorders and some of our HyperPOTS reactions may be related to a mast cell degranulation. There also seems to be a problem with EDS with some of us too. Dr. Grubb recently did an interview on HyperPOTS and MCAS issues. That interview is listed here on the site. You can do a search and probably pull it up.

Here is a site from wiki - that tells you what NE is and where it is derived from. Do some research on NE levels and you will understand how the body uses this in your body. Basically, if he's saying she's HyperPOTS and she has low blood pressures - it's because her NE levels are too high with standing.

http://en.wikipedia.org/wiki/Norepinephrine

Issie

[jpjd59]

Thanks Issie!!!

[issie]

Hoping for answers for all of us. Hope that helped some. You're welcome.

Issie

[heathmcev]

I'm Hyper POTS with low BP, and am hypovolemic. I agree that it may be helpful to find out if your daughter has low blood volume to further tailor treatment. You could talk to her neuro about doing a blood volume study. I also have over-dilated blood vessels much of the time, contributing to my low BP. Knowing both of these things has helped me understand my illness even if I still have a long way to go to feel better! What has helped me most is a low dose of mestinon, which raises my BP enough (to a low-normal range) so that I don't feel like I'm going to pass out every time I stand! I'm also on florinef to help raise blood volume. Being super sensitive to meds makes starting out low and slow really important... I'm always cutting pills in halves and quarters and building over weeks and months. I hope you all can get more specifics and find things that help!

[Lovebug]

I am hyperPOTS with high BP. When I was first diagnosed I didn't know what was going on b/c I woke up one morning, rolled over in bed, and my heart started racing with a BP 180/120 (lying down). I went to ER in a dehydrated state, they gave me IV fluid (which as a nurse did not make sense b/c that would normally make someones BP go up). However, mine gradually came down. It was all so weird and I started to realize something was wrong with my nervous system. What helps me is in my list below. I recommend reading the book on my personal page as that is the book my doctor gave me when he diagnosed me.

Good luck!

[issie]

I am hyperPOTS with high BP. When I was first diagnosed I didn't know what was going on b/c I woke up one morning, rolled over in bed, and my heart started racing with a BP 180/120 (lying down). I went to ER in a dehydrated state, they gave me IV fluid (which as a nurse did not make sense b/c that would normally make someones BP go up). However, mine gradually came down. It was all so weird and I started to realize something was wrong with my nervous system. What helps me is in my list below. I recommend reading the book on my personal page as that is the book my doctor gave me when he diagnosed me.

Good luck!

You sound like me - Lovebug - tried to look up the link that is on your personal page and it isn't working. Maybe, you could list a different address for us - so we can look up this book. What is the name of it?

Saline and nitroglycerin brought my bp down during an ER visit. Who would have throught that one?

[Anoj]

ladies ... do you know if the type of POTS change over time? mine started with low BPs and now i've ended up with BP spikes. this changed over the course of about a year in a half. first TTT BP was low (summer 2010). second TTT BP shot thru the roof (April 2012).

Very good info in this thread. I'm so happy for this board.

[issie]

What meds are you on Anoj? Maybe, that has something to do with it.

Issie

[Anoj]

well, for the first tilt in 2010 i was on nothing (low BP). then recently i had been on florinef and midodrine, but i got off of the meds before the TTT. now i'm on a beta blocker - i seem to have adjusted to it pretty well! the hyper symptoms are much better, but i still deal with the pooling.

[issie]

well, for the first tilt in 2010 i was on nothing (low BP). then recently i had been on florinef and midodrine, but i got off of the meds before the TTT. now i'm on a beta blocker - i seem to have adjusted to it pretty well! the hyper symptoms are much better, but i still deal with the pooling.

The midodrine will increase your blood pressure - so maybe, it wasn't completely out of your system when you had the last TTT. Depending on which beta your on - wonder if it affects NE levels. Are yours high? Pooling is a problem for many of us and - my doc just recently had me go back to wearing compression - despite it making my neuropathies worse. But, it does make my legs feel some better - but, it will also increase my blood pressure. (I don't need for my bp to be higher - I have high bp's.) But, the constriction on my feet and legs - make them more numb - so it presses on the small nerves on the surface more and makes the neuropathy worse. Nurse, told me to just go to a lighter weight compression and see if I can tolerate that.

What did the florinef and midodrine do for you? Did you think they helped?

Issie

[Lovebug]

I am hyperPOTS with high BP. When I was first diagnosed I didn't know what was going on b/c I woke up one morning, rolled over in bed, and my heart started racing with a BP 180/120 (lying down). I went to ER in a dehydrated state, they gave me IV fluid (which as a nurse did not make sense b/c that would normally make someones BP go up). However, mine gradually came down. It was all so weird and I started to realize something was wrong with my nervous system. What helps me is in my list below. I recommend reading the book on my personal page as that is the book my doctor gave me when he diagnosed me.

Good luck!

You sound like me - Lovebug - tried to look up the link that is on your personal page and it isn't working. Maybe, you could list a different address for us - so we can look up this book. What is the name of it?

Saline and nitroglycerin brought my bp down during an ER visit. Who would have throught that one?

Well I suppose I'll have to visit my own page and fix a few things, LOL!!! Anyway, here is a link to the book: http://www.amazon.com/Mitral-Prolapse-Syndrome-Dysautonomia-Survival/dp/1572243031

Nitro is a vasodialator so not only would it lower your BP, I would have been scared that it would bottom you out. My cardiologist advices that I avoid the ER...says they will "mess you up" since they do not really understand the sensitivity that I have to meds or Dysautonomia at all.

[issie]

Thanks, yes I know that nitro is a vasodilator ---that's what I need. I don't need to vasoconstrict. I'm one of those rare hard to treat POTS people. Oh, the joys of being in the rare catagory. I always try to say on this site - that what I do is NOT for everyone - in fact, probably not for very many. I actually had 3 doses of nitro under the tongue and then a patch for 16 hours. That's how bad I was - they thought I was having a heart attack and my high bp and tacky was horrible. The nitro and IV's and massive anti-histamines got me over it. That's when it was determined that I have a probable Kounis Syndrome DX - it's where mast cells attack the heart and it is not fun. I've had it a few times before this eposiode - but was able to get it under control. That time it was BAD. I've also had it since - but, I get on top of it faster.

Issie

[Anoj]

well, for the first tilt in 2010 i was on nothing (low BP). then recently i had been on florinef and midodrine, but i got off of the meds before the TTT. now i'm on a beta blocker - i seem to have adjusted to it pretty well! the hyper symptoms are much better, but i still deal with the pooling.

The midodrine will increase your blood pressure - so maybe, it wasn't completely out of your system when you had the last TTT. Depending on which beta your on - wonder if it affects NE levels. Are yours high? Pooling is a problem for many of us and - my doc just recently had me go back to wearing compression - despite it making my neuropathies worse. But, it does make my legs feel some better - but, it will also increase my blood pressure. (I don't need for my bp to be higher - I have high bp's.) But, the constriction on my feet and legs - make them more numb - so it presses on the small nerves on the surface more and makes the neuropathy worse. Nurse, told me to just go to a lighter weight compression and see if I can tolerate that.

What did the florinef and midodrine do for you? Did you think they helped?

Issie

i wondered myself if the meds were affecting my BP. i don't know if midodrine/florinef increase NE, but mine were definitely elevated on HUTT. i felt better on the mid/flor combo but am on betaxolol only now. he said not to take the midodrine becs my blood vessels were constricting.

i'm glad you said something about the compression stockings & neuropathy. i wouldn't have known that. i am learning more about my own neuropathy.

[issie]

It does constrict your blood vessels---but, some do need that. Not all people need to vasodilate - in fact, I'd saw very few need to. Do you have high bp's? Some of the meds to lower blood pressures - vasodilate your veins. If your bp's are high then that's probably why he said you don't need to constrict them.

Issie

[Anoj]

BP was only high on HUTT (or during an episode). during normal activities, it's normal to low.

[Lovebug]

Issie,

That sounds horrible! I bet you were so scared. I hope you have everything under control now. What do you take to stave off the attacks...what antihistamine?

[issie]

I have been taking Claritin and Tagament. But, was only taking those at night. Have since added more Claritin and was trying Zantec instead of Tagament. (Since finding out that Tagament lowers DAO levels and that could cause more problems in the long run.) I also use a lot of Vitamin C and B Complex and Quercetin. When, I'm real bad - I use Benadryl (I just know I will have tremors with it) and Albuterol - to downregulate mast cells in the lungs and help me to be able to breathe. I also use Nasal Crom daily. (I was also issued an epi pen - which so far I haven't had to use. And hope I never have to. But, I would have that time - if I had it then.) I'm more careful about what I eat and try not to expose myself to known triggers. This particular attack was set off by chewing sugar free gum ----lots of it. I figured out later it was the aspartame in the gum and I'm sensitive to glutamates and that is a big time glutamate. It helped me to figure out more things about myself. But, it was a scary way to have to figure it out.

Thanks for asking.

Issie

[Lovebug]

That mast cell problem sounds like serious business. I have standing orders at my local lab in case I have an episode so blood can be drawn within a few hours. However, it never happens that I have an episode close to the mornig (usually middle of the night). But I was suspecting some type of mast cell disorder in my abdomen since I have such severe abdominal issues. I suppose I could just start taking Zantac in case I have it....if I improve: good! I have lots of chest pain anyway and a strong history of GERD so Zantac may be good for me anyway. As a matter of fact, I'm on the cusp of getting an EGD but I dread it....fear!

[sweetfeather]

I probably have HyperPots since the mast cell protocol has helped me a lot. But I'm not typical since I mostly have low blood pressures. Before trying the mast cell protocol, I had recurrent episodes of feeling very faint, nauseous, with a sense of doom and with average blood pressures (which were high BP's for me) and instead of my face flushing I'd have a heat wave feeling go up my back and crest over my shoulder but my face and extremities were very pale and clammy. I thought these were just POTS episodes but it looks now like they were mast cell degranulation/anaphalactoid reactions. I didn't fit the more typical face flushing and high BP symptoms of most with hyperPots. My teenage son also has POTS and we have some type of EDS either mild Classic or hypemobile.

I got really sick on betablockers and midodrine with episodes of anxiety and high 24 hour urine catechomines and an extremely high plasma metanephrine test (over 10 times normal) which caused a Pheo scare. I had scan after scan and no Pheo was to be found.

I had a constant headache on florinef which sounds like Dr. Diana's (prettyilldotcom) diamox recommendation may help me. I'm allergic to sulfa so I'm going to discuss a cautious trial with my rheumi at my next appointment.

I take nasalcrom, gastrocrom (especially when intestinal symptoms flare), zyrtec and/or claritin in am, zantac, and itchy eye drops by Kroger which is over the counter ketotifen. I've just started Atarax after I heard Dr. Theoharides recommends it over Zyrtec for mast cells in the brain because it crosses the blood brain barrier. What a difference! I feel like it has given me IQ points back. I think so much more clearly except a full pill makes me so sleepy. I'm taking it at night and only part of a pill during the day.I'm hoping I can build the daytime dose up slowly and the sleepiness effect will lessen in time. I weaned off wellbutrin and ADD meds before trying the Atarax and so far it looks like the Atarax is working BETTER for my attention and word finding issues. I won't know until fall if I'll need the Wellbutrin for SAD. For now... the sun is out, and I'm Happy.

Best of luck to you all working with your doctors to find what works best for you!