Hyperadrenergic Pots And Dr. Grubb

[kitt]

Hi all,

Has anyone experienced the flushing Dr. Grubb talks about here, and other symptoms of Hyperadrenergic POTS?

Is anyone here a patient of Dr. Grubb. This is a fascinating video.

[issie]

Oh YEAH!!!! I'm one of those really rare ones, according to this interview. That would have me in the 1% range of all subset types of POTS. No wonder, I've been so hard to figure out and treat. I Saw, this a while back. At least, they are starting to separate us into proper subsets.

Issie

[brethor9]

yes me too! my specialist's say my case is very complicated and challenging also...I was just recently diagnosed with MCAS and likely EDS type 3 on top of POTS/dysautonomia....like Issie I have just recently started the MCAS protocol.......

Bren

[issie]

How's it going for you Bren? I know a few more on this forum that have just started this protocol too. Haven't seen any of you reporting your response.

Issie

[brethor9]

Hi Issie

Issie WOW good for you!! I just started up again on the gastrocrom the last couple days after fighting off a vicious cold. So far nothing but headaches and stomach upset but I am game to continue on I know it gets worse before it gets better...I was warned lol! I have also noticed a difference just in taking the H1 and H2 and hope the gastrocrom helps even more....aspirin is a hit or miss for me...sometimes it helps and other episodes makes it worse. I find breaking my doses down more throughout the day is helping me even more....probably because it keeps everything level maybe? working in the medical establishment I was told you should never chase pain and it is better to slightly overlap dose times....I am thinking it can be applied the same for mast cell reactions? to always stay on top of it?? if that makes sense

Bren

[Christy_D]

My son has also been told he is complicated(time and time again). So far nothing has helped my son. He is on H1 and H2 blockers, Gastrocrom, and doxepin. He is still feeling very lousy. He didn't feel any better when he started the anti-histamines, but maybe because he is already on a high dose of doxepin(100mg) and that has antihistamine in it. We may have to up his dose of that. His histamine level was 8, the high end of the scale when he was tested and that was with the doxepin in his system for 3 years now.

Dr Afrin said it may take awhile to find the right medication, so we are trying to be patient.

[issie]

Christy, the doxepin made me feel "awful". I wonder if that's part of the the problem - rather then the solution?

Bren, I didn't add the aspirin until I was at the dosage of GastroCrom he wanted me. It took me almost 2 weeks to ease up on the GastroCrom to get there. Also, changing my H1 and H2 seems to be a better fit for me. He has me on Allegra and Pepcid. I can only use 1/2 of the Pepcid at night and had to move my Allegra to night too. I also am using NasalCrom about 3-4 times a day. Yes, you get worse before you get better --that is true. But, stick it out. I had lots of trouble with tiredness - but, that got better.

Also, it's really important to figure out if there are food triggers and to stop using those things. You have to watch soaps and shampoos ---so many things that could be potential triggers. I had to start a diary and try to connect what it was that was causing an issue when it happened. I have figured out a good bit of things. And, also you will think you are getting worse - when what is happening is you get more sensitive to when you have a reaction. Because some of the histamines and other chemicals are being blocked - most of the time - when they don't block completely ---you notice things more intense. One thing this will help you to determine is what caused the response in the first place. I've found it really important to write everything down. You can figure food triggers out easier that way too ---cause they will usually happen each time. Sometimes, though, it just happens and you can't figure out a reason.

Issie

[Christy_D]

Issie,

Doxepin does make him feel somewhat better. When he was on a very high dose --175mg -- he had a great six weeks(2 years ago) and then it stopped. Right when he started taking it some of his symptoms stopped, ie..licorice legs, itching, feeling hot(wanting to stand in the snow in shorts),etc.. We have weened him off twice and both times he got even worse(even when we didn't think it could get any worse). So, even though he feels horrible, he feels even worse off the doxepin.

Thanks for the info though.

Christy

[issie]

Glad, something is somewhat working. We usually, figure things out the hard way.

Issie

[Kellysavedbygrace]

So it looks as if I am joining the ranks of the hyperadrenergic MCAD club. Still waiting on an official word from Dr. Afrin whom I saw last Monday and pending lab work but a few preliminary lab tests show several signs of abnormally high MC mediator activity in my blood along with an NE level drawn supine that was above the clinical standard for Vanderbilt's "hyperadrenergic" Dx that is supposed to be assessed upright. Of the 40 some odd symptoms of MCAD there were only two that I didn't have. (no problems w nails and sinuses)

So here is what is interesting:

- I don't have high BP- in fact it is quite low when I'm symptomatic (ie: 88/50)

- I don't have flushing of the skin (I have other skin probs like episodic excema on my left hand and severe itching of my legs)

And it appears to me that Dr. Afrin and Dr. Grubb have two very different estimates of the frequency of MCAD in the population. For instance Dr. G says, 12 out of 2,000 Dysautonomia pts. Dr. Afrin says, "There is evidence that MCAD Is a disorder with considerable prevalence And thus should be considered routinely in the differential diagnosis of patients with Chronic multi system polymorbidity of unknown cause.". (sounds like lots of POTS pts to me.). Below is a link to an article he recently published on MCAS along w a few other docs. I should also note that Dr. Afrin is a hematologist/oncologist who does not specialize in autonomic dysfunction but has several pts with POTS. In fact, Christy D is the one who referred me to him- thanks ChristyD. I'm hopeful bc for the first time I'm talking with a doc about a disease (mutation of a specific cell) that can be tested. (Note: I gave him two vials of blood to participate in a research study he is conducting to look for markers in the blood that indicate presence of MCAD. He is looking for 100 participants and he is measuring that against 100 healthy control samples.)

http://people.musc.edu/~afrinl/MCAS_Primer/JHO_MCAD_Review_Final.pdf

[Christy_D]

Kellysavedbygrace,

The great thing about this forum is the wealth of information. If it wasn't for another member(MacksMom- Julie) on here encouraging me to have my son tested for MCAS, I don't think I would have gone that route. I bring some of this information, treatment options,etc.. to my son's doctors and have used some (IV Saline) that our doctor doesn't usually do. This is a great forum, even though some of it completely goes right over my head.

Christy

[issie]

Thanks for the link above. I found it fascinating. I'm so glad that some doctors are starting to treat patients that obviously have symptoms - but, it's so hard to get the scientific proof. Hopefully, this will make a huge difference for many of us.

How do you go about being in his study? I'm in the study with 23&me and also a doc up in Canada (haven't heard from that one though). I'd be interested in participating in this one too.

Issie

[Angela]

I have not been diagnosed with MCAS, I asked about it due to my bad reaction to the beta blocker I was described) but my current neuro simply told me that it is very hard to test for and left it at that. So I started zyrtec/claratin and after talking to one of my friends who goes to Mayo, as well as Issie I switched to allegra and pepcid. I actually take one of each in the am and the pm, I read on a MCAS forum that they are supposed to work better in combination. Anyway, I noticed that a lot of the neuropathic issues (tingling feet and hands, buzzing/tinitus) have gone away. I also have had more energy then prior to trying H1 and H2's. I am not on the gastrocrom or aspirin but will mention it to my neuro and see what his opinion is. I also noticed that my adrenal episodes have decreased and I have been able to cut down on klonopin as a result

[Kellysavedbygrace]

Issie, I have emailed his nurse to find out how to participate. I'll post her answer here as soon as I get it in case others might want to participate too.

[adigitalashley57]

Hi I was diagnosed with Dysautonomia 3 years ago but was just recently diagnosed with MCA, and was diagnosed with EDS about a year ago by an orthopedic surgeon. My Mast cell activation disorder presents itself when i am having a dysautonomic episode.

But apparently this is more common in the MCAS type as the mast cells are going out of control making for a cascade of dysautonomic symptoms.

I have just started the antihistamine's and have tried to start Cromolyn/Gastrocrom a few times now and just cant tolerate it. But something I have noticed my heart stops racing immediately after i take a Claritin or Allegra or any of the H2 Antihistamines.

Heres an interesting link for all of you MCAD-ers out there. I'd be interested in starting a new thread on this and maybe we can learn more about this more rare version.

My autonomic specialist said to me when he witnessed my ear flushing and chronic hives, "I'm sure you read the Website Forums and you just don't quite match but to all of the POTS patients you are reading about..." and I swear he took the thoughts right out of my mind with that comment. Us MCAD-ers DO NOT match up at all to basic POTS. And if treated improperly and made much more sick. i.e. people with MCAD are NOT supposed to be on Beta Blockers. If anyone wants more info pm me, but I might start a topic to see if other people have some good MCAS stories.

ashley

[adigitalashley57]

Also another helpful link!!!!

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

[corina]

Hi everyone, I'd like to remind you of this part of the forum rules:

Soliciting

DINET does not allow advertisement. This includes, but is not limited to, medical studies, other organizations, products, businesses, websites and forums. If you are a researcher who would like to advertise your medical study, please contact DINET. Use of our forum signifies that you agree not to use any services provided on DINET's website or forum to solicit others.

So if you want to share info on a study please keep it private (via pm's). Although it might sound a bit harsh ( I know we are all looking for answers that can be provided by taking part in medical studies) but we had to imply this rule after a negative experience we had in the past.

Thanks for understanding!

[tommykazim]

Hey ashley, just a quick question(s) about your being on wellbutrin. Was that started primarily for your MCAD and if so why do they think it is useful and has it been useful for you? I'm trying to get on it - in the UK and you'd be shocked at how difficult it is to get on specific treatments. My illness has gone on for over ten years and with it there seem to have been phases. Initially I too felt I was in a hyper-adrenergic state and had episodes of flushing most noticeable on my chest, no hives but dermatographia. Those symptoms though have faded over the years and so I doubt I would test positive for MCA but I have been left with debilitating brain fog and fatigue which I'm hoping wellbutrin will deal with.

Thanks, Tom

[adigitalashley57]

Hey ashley, just a quick question(s) about your being on wellbutrin. Was that started primarily for your MCAD and if so why do they think it is useful and has it been useful for you? I'm trying to get on it - in the UK and you'd be shocked at how difficult it is to get on specific treatments. My illness has gone on for over ten years and with it there seem to have been phases. Initially I too felt I was in a hyper-adrenergic state and had episodes of flushing most noticeable on my chest, no hives but dermatographia. Those symptoms though have faded over the years and so I doubt I would test positive for MCA but I have been left with debilitating brain fog and fatigue which I'm hoping wellbutrin will deal with.

Thanks, Tom

Wellbutrin was started primarily for my MCAD at my suggestion to the Doc just from the things that I had read. It's a dopamine and norepinephrine so I'm not sure how it makes sense other than maybe it controls the Norepinephrine?? Also Dopamine is the feel good nuerotransmitter so maybe that helps curb your idea of what pain is.....I'm not doc of course.

But I've found it to be quite mild compared to the regular SSRI's and i was actually kind of scared of it because all the stuff saying it can cause anxiety etc. And of course more being on the Hyper side makes you more prone to anxiety.

hope this helps!!

[tommykazim]

thanks ashley, yip topping up my neurotransmitters with SSRI/SNRI's, when they have worked, have helped all of my symptoms which makes me think thats wherein my problem lies. Unfortunately they then stop working and so dont seem to be reversing the actual disease process. But if it buys me some quality time while they figure things out then I dont mind, they just need to hurry up! Hoping your MCA treatments are kicking in to good effect!

[jangle]

Hi everyone, I'd like to remind you of this part of the forum rules:

Soliciting

DINET does not allow advertisement. This includes, but is not limited to, medical studies, other organizations, products, businesses, websites and forums. If you are a researcher who would like to advertise your medical study, please contact DINET. Use of our forum signifies that you agree not to use any services provided on DINET's website or forum to solicit others.

So if you want to share info on a study please keep it private (via pm's). Although it might sound a bit harsh ( I know we are all looking for answers that can be provided by taking part in medical studies) but we had to imply this rule after a negative experience we had in the past.

Thanks for understanding!

Wait what? So can we no longer post links to medical studies we're talking about?

[issie]

Jangle,

I think what Corina was referring to was the conversation that I was having about wanting info onbeing in the study, that will take place. That's all I could figure in that it was posted on this thread. I'm thinking she thought it was someone with "other" interest trying to get participants for the study ---which I don't think is the case. But, just another POTS person telling us that they are looking for participants to be in a study. I think that's why her post ----correct me if I'm wrong Corina.

But, I still want the info and if you need to PM me with the info for the participation in the study --then please do so.

Issie

[Kellysavedbygrace]

Yes, I think she was talking about my post that I would contact the nurse to find out how Issie can participate. Then I said I'd post the answer here in case others were interested in participating.

Issie, I'm still waiting for the info but will PM you with it when I get it.

[kitt]

Hi all,

I've been too unwell to post since I started this topic.

Am immunologist suggested I may have mastocytosis, and gave me a script for blood work to have it tested. Haven't done it yet, but need to immediately. Guess in the back of my mind I just wasn't prepared for another diagnosis.

A cardiologist who understands dysautonomia put me on another beta blocker. My first experience was with Atenolol, and my BP went to 80 over 40. Took a LONG break from bb's, and then tried Metaprolol and within a few days my BP dropped to 70+ over 50+.

Still waiting to hear back from the cardiologist. Feel like I should start H1 and H2 on my own, NOW. Even though MCA pots is associated with high BP, I've read it can occur with low BP. Anyone else have low BP with MCA?

Feeling awful. Worse part is before I started the new bb, I was at home and couldn't find paperwork I was looking for. I kept looking, and started sweating, and could feel my heart pounding. Even when my HR is 165, I don't really notice it. I finally laid down, and afterwards got up and ate something. Began vomiting within minutes. An hour later tried to eat something simple again...and the vomiting started again. This went on all night.

Now I have constant nausea, exhaustion and the lightheadedness.

I guess my questions are these...

Does anyone else have low blood pressure that goes too low on BB's? Basically can't tolerate BB's at all?

Anyone else have vomiting?

Facial flushing? Mine comes and goes.

Failed the TTT?

Diagnosed with POTS, but not responding well to meds?

Think the MCA aspect of POTS is perhaps a bigger issue than anyone yet realizes. MOST of us have not been to Vanderbilt, or to Dr. Grubb, so the statistics they're using are based on patients they've seen. Good information, but perhaps not representative of the true POTS population.

Thanks All!

Kitt

[corina]

Sorry I wasnt more clear guys, I tried to let you know that the forum rules do not allow recruiting participants in studies via this forum. We've had very bad experiences with that in the past. So if you want to share details on how to participate in any study, please do so via pm or email. Mentioning a particular study might lead to members asking info on it, that's why I wanted everyone to be careful.

If you have anymore questions, please feel free to pm me!