Dr. Grubb Interview With 17 Year Old Woman

[Monstrosity]

http://youtu.be/YQpAYCzGAC8

[issie]

Loved this video.

Okay, so I'm HyperPOTS - puts me in the 10% and then I have MCAS which is 10% of the 10% - so that makes me 1% of all POTS people. Ugh! No wonder doctors don't know what to do with me. And then add EDS and autoimmune issues into that ---I'm a walking medical mystery diagnosis. LOL Hope more gets figured out SOON!

Issie

[roxie]

Thanks for posting!

I've wondered a lot about hyperadregernic POTS & MCAD and this the best explanation I've heard!

I do hope they find more info SOON

[Anoj]

this was excellent. thanks for sharing.

[DoozlyGirl]

Very interesting!

So I've got obvious signs of MCA, ie. flushing, anaphylaxis, and vascular permeability (with plasma and other blood cells cells in my skin biopsy) and get really high BP and plummeting BP. But my HR doesn't go up more than 20 points or so max. Watching this video makes me wonder again why my HR doesn't rise to compensate for the BP. Any one else? Any thoughts???

Thanks for sharing,

Lyn

[ramakentesh]

its very interesting that Dr Blair Grubb says 12 of 20,000 POTS patients they see have it, other researchers have found histamine levels to be routinely normal in their patients, yet half the people on most POTS forums claim they have it.

[issie]

its very interesting that Dr Blair Grubb says 12 of 20,000 POTS patients they see have it, other researchers have found histamine levels to be routinely normal in their patients, yet half the people on most POTS forums claim they have it.

Maybe, it's all the ones with MCAS are on the forums? Just thinking . . . . . .Some of us have discussed whether or not we should raise our hands and speak up - because, we think there are a lot more of us around than what he's saying. We've got a doc in Canada doing research on us - right this minute. Many of us are in a study for it. Maybe, Dr. Grubb would like our names and check us out a little closer too. That's what we're hoping for - we've got messages in to him too. I know since I've had this spell with bad allergies in the last few days - doing the MCAS treatment along with my new med - clonidine - is really making a difference.

Issie

[ramakentesh]

Subjective symptoms do not equal a clinical diagnosis.

[issie]

New info does however. It is thought with some new research that someone sent to me that those with high NE levels are an indicator of mast cell issues. Dr. Afrin is now doing test with biopsies with endoscopes and finding mast cells that way - without having to do bone marrow biopsies. It is new and accurate up to 90%. All of this is really in it's infancy and time will tell what the outcome will be for people. But, with this new testing procedure it is thought that more people WILL get their clinical diagnosis.

Issie

[ramakentesh]

Unpublished research and theory doesnt equal fact. Mito Docs commonly tell their patients all POTS is mito disease. When its accepted by the medical community through consensus then ill believe it. I can tell you that much published research does not support high histamines in many POTS patients.

[issie]

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

[ramakentesh]

They may help for other reasons

[issie]

Yeah, there could just be a sensitivity of histamines and not MCAS - that could be why so many more seem to have the symptoms of MCAS - but, are not fainters. The doctors, however, are still telling some who do not faint - that they have MCAS. This is not what the published papers on MCAS says - it does say - like Rama pointed out - that those with MCAS usually are fainters. I'm not a fainter - but, have had issues with mast cell degrandulation even to the point of it affecting my heart - and we know that is what happens. Exercise can be a major trigger for a mast cell degranulation as can hormones - like with arousal. There are many things that can trigger an over reaction to histamines. I was excited to find that article on sensitivities to histamine and the info on not lowering DAO - because, this is what will help to regulate it. Those with true MCAS may also have the double whammy with the issues with DAO and sensitivities to histamine.

Issie

[HopeSprings]

Ok, he's saying MCA is a subgroup of hyperadrenergic POTS. So if you need episodes of high BP to have HyperPOTS - then you'd need high BP for MCA too, right? I never have high BP, but have really bad chemical sensitivities, which I thought could be MCA - but can't be if I'm not hyperpots, right? It was very nice of him to sit down with this young woman- he seems really great.

[issie]

I'm not sure Naomi about having to have HyperPOTS (although - I do) but, it seems to go hand in hand with a lot of us with HyperPOTS and for some reason there is also a connection with EDS. It's like a trilogy - they are doing research on it now.

I'll ask on another forum I'm on if everyone is HyperPOTS. I don't think that everyone is.

Issie

[HopeSprings]

Issie - I'm asking because he said MCA is a subgroup of hyperpots. I'm thinking you can't be a subgroup of something if you don't have symptoms from the original group. And since high BP seems to be a hallmark symptom of hyperpots, then it should be for MCA too? Am I making sense?

[DoozlyGirl]

I haven't been diagnosed with POTS, but with autonomic neuropathy. I've been communicating with 6 others chasing down mast cell issues who also have autonomic neuropathy. Several not on DINET, but on other forums. We tend to see a neurologist, not a cardiologist.

I've been reading that histamine and its degranulation products are very hard to test for, because they are not very stable, and the current testing methods are not sensitive enough. Because of this, Dr Afrin orders that all vials and samples are kept on ice right through to testing. Many labs haven't done that. Dr Akin states these labs have to be drawn within a few hours of an mast cell degranulation episode. I read of patients having labs drawn hours after their episode. There are lots of reasons why the POTS docs and others may not have been able to find these degranulation mediators.

[issie]

Yes, you are making sense. Also, those whose NE levels are high are also considered HyperPOTS. The standing levels above 600 - by some studies - others think it has to be higher - depends on which Doctors standards you go by.

Issie

[HopeSprings]

Also, those whose NE levels are high are also considered HyperPOTS. The standing levels above 600 - by some studies - others think it has to be higher - depends on which Doctors standards you go by.

And I thought I ruled out hyperpots. I have high standing norepi, but not high BP. My understanding was that you need both high norepi and high BP (at a minimum high BP) because many people with POTS (in general) will have higher than 600 standing norepi. Do you remember who says you only need high standing norepi?

[issie]

Also, those whose NE levels are high are also considered HyperPOTS. The standing levels above 600 - by some studies - others think it has to be higher - depends on which Doctors standards you go by.

And I thought I ruled out hyperpots. I have high standing norepi, but not high BP. My understanding was that you need both high norepi and high BP (at a minimum high BP) because many people with POTS (in general) will have higher than 600 standing norepi. Do you remember who says you only need high standing norepi?

I'll try to find it.

Issie

[HopeSprings]

Ok, thanks.

[issie]

I didn't find any research articles on this - but, found people claiming this to be the case in their behalf. So, maybe the research is showing that there has to be at least liable blood pressures that swing from high to low and also high NE levels. I know there are a couple of people on this forum that say they are HyperPOTS without the high bp's. So, maybe they will be able to find the info - I'm not able to pull it up - from research papers. Just individual statements. So - maybe - I stand corrected.

Issie

[issie]

I know in my case - I have high bp's most of the time and swing to lows - some of the time and also have high NE levels. I saw one site that is calling this a combination type of POTS. But, those with high bp's and high NE as HyperPOTS - either way - the site said neither of these types really got over POTS. Sigh! We just need a better band-aid to help us to cope. So far, the colonidine is helping me and I have been taking the MCAS meds this past week - because of environmental allergies and as of last night - that has gotten better too. So, it's finding the right combination of things. One thing wasn't enough for me - but, this combination is making me feel lots better.

Issie

[HopeSprings]

Thanks for looking, Issie. I remembered reading it somewhere too and thought I had hyper POTs, but then a lot of people told me NO, you need high BP. So I dunno, but as you said, there isn't even Dr. consensus on this topic. Glad you are finding things that help!

[issie]

I found a really good article describing HyperPOTS and MCAS

http://hyper.ahajournals.org/content/45/3/385.full

This also says that most people with HyperPOTS and MCAS - have high bp's. But, there are studies saying that those with MCAS faint - and most of the HyperPOTS people I've talked to don't faint. We just nearly faint.

I asked about the claim that high NE levels are indicators for mast cell issues on the other forum. I was told that NPY is co-released with NE and is an activator of mast cells. I did some research and came up with a few studies saying this.

http://www.ncbi.nlm.nih.gov/pubmed/7523751

http://www.ncbi.nlm.nih.gov/pubmed/1825102

http://www.nature.com/ki/journal/v45/n6/abs/ki1994211a.html

There were more - but, I think that what was told to me was correct with what I did find. It seems that NPY and NE are released at the same time and can cause degranulation of mast cells. So some docs are thinking that high NE levels are indicative of possible mast cell issues. (This is what I was told from the other forum.) This is not even putting POTS into the equation - this is strictly looking at markers for mast cell issues.