Dr. Grubb Interview With 17 Year Old Woman

[RichGotsPots]

Im underflexible by most measures. Although i can twist my tongue upside down.

Me too, I've done martial arts and all different sports and have done hours of stretching but everyday boom my flexibility doesn't budge and inch

[RichGotsPots]

I just barely make the diagnosis of hyperadrenic pots with NE of 634, my BP does up when upright about 20+ then after 5 minutes drops over 50. Probably that qualifies me, but I don't flush except for my chest. I don't know if you can call that MCAS, but I do know if I had MCAS the usually meds don't help in the least. H1, H2 and Singulair all don't help in the least. Some thing is causing my pooling.

I personally thing the likely culprit is dysfunctional endothelium cells that are causing an exaggerated release of NO in my chest or lungs. They know that in pulmonary hypertension there isn't enough release of NO and thus a build of pressure occurs. They either pump NO all day continuously into the pulmonary artery or they use endothelium receptor blockers. Probably if I tried one and my symptoms got worse I would have my answer, but it would probably be pretty scary..

[issie]

Rich,

There's things you can try to up your NO levels - alpha lipoic. There's also things that will lower it - B12. I found that things that increase my NO levels make me feel better. I don't need to lower NO - but, need to increase it. There is a fine line between how much dilation I need and how much constriction. I'm finding that my veins need to dilate - but, I need some mild compression on the outside of my veins. I've found that an abdominal binder helps - I don't get as dizzy and not as much naseau. Also, even though compression socks - makes my neuropathy worse - a slight compression on my legs helps with edema. Too much compression and I have more issues with my high bp's. Part of my issues come from EDS with leaky and over elastic veins. This compounds the problems.

Histamine isn't the only problem or release that mast cells cause - there is also bradykin. I'm finding that H1 and H2's in some way seem to make me more sensitive to a histamine release when I have one. I'm approaching it in a different direction now - working on the mast cells themselves with Nasal Crom and Quercetin. So far, noticing good results with this. I found that H1's were causing issues with memory and attention. I'm so much better in my "thinking ability" off of them. But, will have to use them if I have a bad de-granulation. Really paying close attention to things that I know I'm sensitive to and watching diet and even supplements and avoiding certain things. So far, seeming to be doing some better with this protocol. One doc is also recommending rutin and olive leaf. I use the olive leaf when I feel like I'm getting something and occasionally use rutin. It's good to strengthen the veins.

Issie

[spinner]

Thats for sure......well, I assume all of us take our physicians expertise with a grain of salt. They have plenty of ivory tower opnions, but until you know what POTS feels like, youre at a serious disadvantage to treat it. The Dr. in Pensacola with POTS is probably more sympathetic with the varying unexplained treatments that work without being able to explain exactly why

I guess, time will tell. For those that the treatment for high histamines is making a difference with their POTS symptoms - you'd find it hard to get them to stop their treatment just because the published and medical community doesn't have their scientific "PROOF", . . . . . . yet.

Issie

[Guest mattgreen]

Okay, that's pretty elasticey - but, I just had a visual and it kind a grossed me out. Ugh! LOL You can be underflexible because of your AS - you do know that - I know. I have EDS and they haven't ruled AS out for me. So, thinking you can have the two together.

What is AS?

[issie]

AS is ankylosing spondylitis. It is autoimmune related and causes fusion of the spine and lots of pain issues. It usually starts in the sacram area (lower back). There is some indication that it can be inherited and if that's the case - there must be some gene mutations that would possible be passed on.

Issie

[comfortzone]

Hi All....

What if --- you have hypermobile EDS, you basically have run at a high adrenergic state your whole adult life - avg. hr of 100 with rounds of SVT like PAT etc....

You have the labile b/p's that are baseline of hypertension - then dives down to 80's over 60's for no apparent reason aside from standing too long on occasion but not always.

You often can show spikes in b/p with standing - or what feels like orthostatic hypertension ....

BUT - your heartrate never really ever goes high like that of a requirement of POTS - over 30 bpm over baseline... My highest ever was only 139 with standing -- most of the time never over 120

NO diagnosis of pots given

The laying down norepinephrine is 208 and the standing is 646 with a sharp rise noted.....

What pray tell is 'that' called? No one ever said POTS - so I can't have a subtype of POTS, right?

Yet I have vasomotor instability, small fiber neuropathy, the EDS, the generalized hypermobility, the pooling - AND no true anaphylaxis - but flushing probably more d/t position changes maybe with pooling being distributed in abdomen... Flushing and arms blotchy etc... rashes only once yearly - treated with a Medrol DosePak...

Are some people just on the 'fringe' of all of this - never fitting into any of the boxes appropriately - but seem to sit on the same kind of 'line' or continuum - without earning the true diagnosis?

Issie's symptom set seems to match my own most closely with the high b/p - and eds, and the higher norepi with standing - but do some people's norepi with standing actually just stay around 200 or so - or does 'everybody's' norepi rise to over 600 when you stand up?

I know too many questions once again - feel like a misfit - but I'm on Inderal (propranolol) and Clonidine - that has me blocked down and has gotten rid of much of the dysrhythmias - but I think clonidine is causing tons sweating episodes which I guess in can in 5% of people - others it decreases sweating.... Not sure if there's anything really left to check in order to feel better .....

The Mayo cardiologist today almost acted bored at my appt. - all's well in some doc's book as long as there is no huge red flags pointing to diagnosis ... yet try to find one who wants to help you with your symptoms (fatigue, pain, some orthostatic intolerance, the sweating, flushing, chest 'rushes' and chest pain) - those are super rare to come by - otherwise if your not obvious for anything out the door you go ... so frustrating if not embarrasing!

[issie]

Maybe, you should have Dr. G do another TTT on you. With the NE above 600 - some docs would say you are HyperPOTS and there have been some that don't quite get the 30 points above and seem to still get a sort of dysautonomia DX. I'm above 800 (NE) with standing and always have at least a 30 point rise and go above 120 almost always.

I think a good bit of my issues are due to EDS, autoimmune issues and frankly genetic mutations. I have figured out a whole lot with my 23&me testing. Some of the flushing and MCAS type symptoms can be from sensitivities to certain things. I've noticed that certain foods will make me have hot flashes. If I stay away from them - I don't get those as bad. I think some people may have such sensitive bodies that they notice the slightest changes and you may not have full blown issues - but, be more aware of the changes. I've talked about a book that I read by a doctor in NY - who says that some people are like the yellow canary that the miners take into the mines. If the air is bad - the bird dies - the men don't sense the issue - but, it kills the bird. This doc thinks that there are people who are that sensitive to things - in the environment and in their bodies. I think maybe many of us with all these issues may be this way ---we're all just little yellow canaries ---we sense things that others pay no attention to.

Have you found that H1 and H2's help when you have a bad flushing, itching episode? I'm finding that Nasal Crom is helping me a whole lot and have added quercetin. I'm not using the H1 and H2's all the time now, just when I start to feel a bad reaction coming on. I think they were making me more sensitive when I would have a reaction. I'm being super careful what I eat, drink and which supplements and RX's I'm using. I'm finding it is helping the liable BP's and my HR seems to be a little more stable too.

I'm trialing some herbals that seems to be helping with my tachy problems.

Had to come off the diamox - probably due to issues with sulphites/sulphates. Will use it to help the head and eye pressure - but, only on an occasional basis. It did help with my high bp's and helped pull my edema down.

I have a cardio doc outside of Mayo that I like. He knows very little about POTS - but, is open to listening and was very thorough when I had my ER visit. I will go back to him. PM if you want to know who he is. My primary care - we see the same PCP - nowwhat - found that I do have diastolic dysfunction - when they did an echo on me recently. So, will be needing to follow up on that. Trying to get some other issues settled with other new docs that she sent me too first. Then will go back to cardio doc.

We are all still searching for more answers. Even when we sort of know what is going on and know why - we still have to find a way to deal with it in everyday life. I think I've got some pretty good docs that I'm seeing right now. PM if you want to know who they are. It is frustrating to go to a doc and then they don't know what to do for you. But, the more things you rule out the closer you get to what is really going on - so you will get things figured out. Just don't give up in trying to find the answers, when your puzzle pieces start to fit - it is really a liberating feeling. Even if there is really nothing that can be done for you - just having the knowledge and not the mystery is such a relief.

Issie

[RichGotsPots]

Rich,

There's things you can try to up your NO levels - alpha lipoic. There's also things that will lower it - B12. I found that things that increase my NO levels make me feel better. I don't need to lower NO - but, need to increase it. There is a fine line between how much dilation I need and how much constriction. I'm finding that my veins need to dilate - but, I need some mild compression on the outside of my veins. I've found that an abdominal binder helps - I don't get as dizzy and not as much naseau. Also, even though compression socks - makes my neuropathy worse - a slight compression on my legs helps with edema. Too much compression and I have more issues with my high bp's.

Issie

Issie where did you find out about what increases NO and what decreases it? Would be good to have a list. I take alpha lipoic to help with possible mito and lactate issues. I take B12 for energy.. None make a huge impact on me that is immediate..

[comfortzone]

Hi Issie

I will pm ya - I don't want another wasted appt. with Dr. G as I utter my 'unhelpable, unsolvable' issues once again. I've had 2 rounds of his dysautonomia group of tests in the lab - only one round of the serum catecholamines though. Yet are they even worthy tests when I'm all blocked down on meds because he 'will not' risk taking me off any meds d/t the HTN.

My best guess is another sleep study is in my future - maybe a brain mri - they are thinking my buckets of sweat might be d/t clonidine unpleasant side effect - so do I quit that drug and risk a trial with another? Who knows. Our primary only wanted me to have an echo - but she forgot to give me an RX for one... so when I found myself empty handed I just went to Mayo to get one - instead they did basic labs, cxr and ekg - no echo and told me my chest pain is not likely cardiac. They said, 'if you WANT an echo however we will order you one - (eye roll) - I was too proud to say it would be a good idea as that was the only reason I was there anyway - duh.... so just dropped it and was a fair bit ticked for once again being made to feel like a hypochondriac.

What is the magic drug combo for hyperadrenergic issues? I need treatment for high b/p that drops low - now I'm on 40 of Inderal twice per day - blocks me down nicely - and the clonidine I guess helps too as I'm on .3mg a day! Yet the cardiac doctor says, "your blood pressure is high" - I say yeah and yesterday 80's over 50's - whateva! So I ask, "well do you want to get involved and try treating this labile b/p or do you want Dr. G to do it. He votes Dr. G ...( of course ). So I'm right back where I started from - no echo for the primary and out money - and no answers... Just sayin' - it's so frustrating - I'm nearing the point of just pitching all the meds out the flippin' window.

[issie]

Rich, lots of research and time and trial and error. More error than anything.

Nowwhat, just call the PCP and she will order the echo for you and then you will know. I got my test done within a few days of the order and she is the one that told me that I have diastolic dysfunction and what is normally done for it and gave me the meds for it. I think us with these wild swings and high bp's and tachy issues may be be the hardest to treat and then throw EDS in there and you have even more issues. I'm working on finding a good rhummy- but so far not sure about the ones that I've been told about. You know our PCP's husband is a rhemmy? Our PCP was going to ask him if he was familiar with EDS. She never got back to me - so not thinking he's that up on it. So, trying to look elsewhere.

I hear you on the meds. I have a big baggie full of meds that I can't take. So many things will help for a short while and then back fire on me. I've also had things help one way but cause other bad things to happen and not be able to stay with it. I'm about to decide that the meds have to be cycled - just like a person should cycle herbs. But, there is such a balancing act between how much, when and for how long.

Yeah, PM me and I'll let you know who I've seen recently.

Issie