Mast Cell Activation....missing Link For More Of Us Than They Think??

[adigitalashley57]

http://hyper.ahajour...t/45/3/385.full

I wanted to start this thread because i feel like there is some real momentum in the medical autonomic community in regards to Mast Cell Disorders.

I myself am an old hat at being diagnosed with just plain old Dysautonomia. But I recently have been pinned down as Mast Cell Dysautonomia/POTS. Actually, side note, at my autonomic specialist they say i have S.T.O.P. the opposite of pots because everything was slightly off or backwards to the normal patient. haha.

But so, as everyone on here is different and all of our symptom profile's are similar but different, I would like to get a consensus on if there is anyone out there with a symptom profile more similar to mine.

I think this would be so helpful for patients out there like me that suffered tremendously that could just hopefully click on this and maybe they will match up and a light bulb will go off for them!!

Start of illness-

Initial symptoms:

Shortness of breath and chest tightness like an allergic reaction- constant and severe

temperature deregulation body temp. of 95.9 96.5-severe

hyper-adrenic feeling state. could not calm my body down felt like adrenaline coursing through me 24/7- very severe

Chronic Hives. Covered in trunk area and arms. -severe

Ears Flushing- severe.

Chronic throat tickle. created this slight constant cough almost like a tic. -severe.

heart beat irregular with palpitations and tachycardia -severe

heat intolerance. couldn't even stand in a ray of sunlight- very severe

Hypoglycemic feeling. -very severe.

Only fainted/blacked-out once when I was a few months on Prozac trial and walked 3 blocks on a humid day.

never had a low blood pressure reading, if anything it goes up upon standing. Which is also not comfortable.

[sue1234]

I don't know for myself, but I'm curious, did all that go away with your MCAD treatment?

I have all the same symptoms EXCEPT chronic hives or throat tickle. I especially get the sun thing like you. Sun makes me feel like fainting. I am hyper, hot, and racy....all in a not-good way! LOL

[Dizzysillyak]

Hi,

Thanks for the article. I'm going to send this to my doc. Then see what I need to do next.

I just started the mast cell protocal about 6 weeks ago and am a responder. I have most of the symptoms you listed but most of these are controlled via diet.

I may flush but I don't think it's obvious in my skin. I just considered it either a blood glucose change or bp drop.

I have petite mals too and I'm not sure how these fit into my dysautonomia.

I hope they don't just look for hypertension because my BP runs low but still jumps 30 pts when I stand up for 10 minutes.

I know that not everyone who has severe allergies, even anaphylaxis, gets Dysautonomia / POTS so I hope they can determine who does.

tc ... d

[Batik]

I get stuck on this. People always make vague comments like "oh, you get allergic-type reactions" but I'm never sure what that's meant to cover. I get these symptoms on and off generally, but standing up brings them out in force: getting very itchy, suddenly sweating, nauseous, temperature all over the place (hot and cold at once is always entertaining), tight chest, breathing problems (sometimes hyperventilation), and of course, blood pressure, pulse pressure and heart rate bounding about all over the place. As far as I am aware I don't come out in hives, though I have been diagnosed with dermographism so my skin turns red in response to pressure. I've also found that being on two antihistamines at once stops my pelvic pain, which suggests a mast cell issue. Does this sound like a response suggesting a mast cell problem?

[kds]

Hi all, just wanted to let you know that I appear to be in this HyperPOTS/MCAS (as well as EDS/cervical instability) group. I'm scheduled for a consult at Vanderbilt about my "dysautonomia of uncertain etiology" in December that I hope will clarify this. I've been on a number of antihistimines for years for allergies, added low dose doxepin for sleep last December, and have recently added chromolyn sodium on the advice of my EDS doctor. The latter two meds seem to help my BP spikes, as does eliminating wheat and lowering the carbs in my diet.

Batik - your symptoms definitely sound like they could be mast cell related.

[Batik]

Tell me about it! Or more to the point, please tell that dermatologist who wasn't remotely interested in investigating mast cell problems, and told me that dermographism doesn't cause itching. I forgot to mention nausea (though I've just edited the previous post accordingly). Another weird thing from being off my antihistamines today for testing purposes, as well as sleeping very poorly last night: my left arm must be a bit swollen, because the blood pressure cuff is fitting more tightly than it usually does (I just leave it fastened and slide it on and off). I wonder what that's about?

Anyway, my current plan is to get to a certain POTS specialist and then hope that she can follow up the mast cell side of things as well as the POTS side of things, or at least refer me to someone appropriate.

[Dizzysillyak]

Hi batik,

It's great to hear that you're pelvic pain is being helped by antihistamines too. Mine's so much better

but I'm still having break thru shots of pain. Granted I've put chocolate back into my diet in large quantities. Lol Taking 250 mg Solgar b6 + magnesium (doctor's best) helped this

prior to going on the antihistamines and I still need these. I don't know why these work but they're

recommended by pelvic pain specialists.

Can you tell me which antihstamines are helping you ? sorry if you already said this and i missed it.

I'm on Wal-zyr, Allegra and benadryl.

Thanks .. D

[issie]

Dizzy,

It looks like you are only on H1 and no H2's. Why are you taking so many different kinds of H1's? The specialist that I'm seeing is finding that Allegra is helping most - better then the other types and also has us on Pepcid. I can only do 1/2 of a pepcid or it makes my stomach hurt. But, just that amount seems to make a difference. I was really resistant to adding an H2 - but, it does seem to make a difference and the small amount I take doesn't seem to interfere with digestion. Of course, I also take enzymes.

Issie

[Batik]

I'm on cetirizine (Zyrtec) and alimemazine (Vallergan, I think). They're not being particularly sophisticated about it, I think they've been throwing them at me at random to be honest. The dermatologist was utterly uninterested and just sent me back to my GP with a general recommendation to try various combinations. The sky fell in on me two weeks later and I've been dealing with a lot of other stuff since, so my GP doesn't want to mess with my meds until everything's settled down. I'm currently trying a day or two off the antihistamines to see what it does to my HR and so forth, and it's interesting to see how it's affecting me. My arm keeps swelling up if I try to leave the blood pressure cuff on, for starters. Plus the whole lack of sleep and mad itchiness, of course.

[Batik]

By the way, has anyone else found that their menstrual cycle has changed when they're on antihistamines?

[DoozlyGirl]

Batik,

I take Benedryl for reactions that I can't control with zyrtec, zantac, and Singulair. I do find that my worst symtoms are the day before/on my period, tapering after 2-3 days, then again to a leser degree during ovulation. My symptoms keep me horizontal, as the flushing, sweats, GI shutdown, raging headache, and severe OH and syncope are at their worst. Before learning of mast cell, I would just sleep it off, trying to keep hydrated. since learning of mast cell, I have begun to take Benedryl when I am at my worst. For multiple times over the past several months, I have found that my period stops while on the Benedryl, then several days later I will start spotting and if those above symptoms are tolerable, then my period will be slow and steady. If my symtoms rage for a few days and I take more Benedryl, my perioid will stop again. Dr Afrin has no idea why this happens but is open to Benedryl affecting menstruation.

Since asrin therapy in MCAs is used to slowly leak out the prostaglandins instead of allowing a massive release of prostaglandins, I wonder if the Benedryl does the same thing: slowly releasing mediators that can direct menstruation.

I didn't notice as much change while on other H1s but it was obvious with the Benedryl. I am 45 years old and wondering if my current periods are actually enhanced from degranulation, as I have elevated heparin levels.

Lyn

[Dizzysillyak]

Hi issie,

I keep getting stomach pain from h2s so I haven't tried them again.

I'm on Wal-zyr (Walgreens zyrtec) because I read that zyrtec helps the most with swelling and

I have that most of the time. Either in my throat or my bottom lip. I'm also sticking with Children's dye

free Benadryl because I know that works fir my swelling. Treating the swelling isn't an option if I want to breath.

I can't remember right now why I started the Allegra.

I "think" Wal-zyr perks me up

during the day because it contains corn starch and my reaction to hfcs is extreme hyper activity.

I've yet to test corn starch but I just found a gf one the other day.

I've been on the go for about 6 weeks now so I haven't had time to learn all the mast cell terminology

even. Fwiw tho, being on the go for 6 weeks is a record for me. My brains not in gear tho.

I'm working on learning this. I just had to go to ca for a month to dog sit. Now I'm playing catch up.

Tc .. D

[Dizzysillyak]

Deleted. Double post.

[issie]

Dizzy,

I got really bad stomach pains from the H2's also. But, with taking 1/2 of one with the Allegra and maybe the GastroCrom is making a difference. But, I'm not having an issue with it now. You probably started on the Allegra cause that's what our Mayo doc has us all on. It seems to work better then Claritin for me and I'm not getting brain fog with it ---it's nice to have my memory doing so much better. I understand why the others if it helps with your swelling. I'm having good success with swelling with what I'm on right now and didn't before. My edema is a lot better --not completely gone away - but, better. But, I also have diastolic dysfunction and that can cause edema too.

Issie

[Katybug]

I had to cut back on the dose of my H2's too due to nausea. But this is actually a known issue...I can't site any literature but my GI said that (and this was on a normal dose just for reflux) that because these drugs block acid production and therefore can disrupt normal digestion to some extent, it can actually cause some stomach upset in people.

This is a good article. Thanks for posting. I am MCAD and Hyper-POTS and I am wondering why none of my docs have taken me off the B-blockers knowing this. I'm taking the article to them to ask the question. I wonder if this is why my shortness of breathe has continued to get worse instead of better even with H1 and H2 treatment. Hmmm???

[NMPotsie]

Ashley I have a lot of the same symptoms as you do. Terrible flushing; I go suddenly red in the face/ears very quickly right around the time the world starts spinning and I start sweating. I have hives on and off all the time; they don't stay in any one place too long, but I'm always hivey and itchy somewhere. My temp also runs low, etc.

I do have hyper pots, though I started having sudden drops in my bp when I started antihistamines and zantac. Dr.s assume this is reflective of the control of my mast cell degranulation, and the beta blocker then doing what it should--lowering my bp. I tested positive for heat, cold and vibration-induced urticaria (hives), though one ray of sunlight wouldn't give me hives like you. It takes 5 or 10 mins in the heat for hives to develop, and for me it's heat, not sun directly.

I have been dxd with hyperpots and probable mcas. If that's helpful.

[Dizzysillyak]

Thanks Issie,

Sorry to hear you have a heart problem that can lead to edema. I have a freind going through this right now.

I looked up gastrocom.

http://www.webmd.com...Gastrocrom+Oral

I'll have to run this past my doc at some point. She just increased my dosage of Creon, prescription digestive enzyme, and I need to try that first. My labs say I'm low on this. It works GREAT but I needed more. And right now I'm out of it and while I'm taking other digestive enzymes, my digestion is poor. I get my new script by mail now in about a week they said. . It was either that or pay $327 for a 1 month supply.

So now isn't a good time to try ask for or try anything new. I was told that I could try the H2s again tho. She knew how they were related to mast cells.

My other big digestive problem is that I HAVE to take Magnesium citrate, Natural Calm, everynite in order to have a BM. I'm too constipated otherwise. And that's been going on for several years despite diet changes, etc. I've tried everything.

Does anyone know if mast cell disorders can cause dehydration ? I have that all the time and suspect my constipation is related to dehydration. I'm not urinating frequently so I don't think its DI. Unless, fluids are going straight thru me and my bladder is holding onto it. Is any of this related to MC ?

I wish my brain was all there. Congrats. I'm thinking mine is probably related to the Theanine or Klonopin I'm taking for myoclonus and insomnia. I'm stuck on what to do here. But I'm using NAC and will try citocoline today too. Caffeine (I'm playing with this again) seems to speed my body up and leave my brain behind.

tc ... d

[Batik]

Magnesium always seems to be getting recommended for people like us, so it's probably not the end of the world that you're taking it regularly.

[adigitalashley57]

All the these posts are very interesting. I think the idea that MCAS patients are NOT supposed to be on Beta Blockers is of extreme importance to this subject.

Also to comment on Sue1234 post I have noticed a significant but definitely slow improvement in symptoms now on the MCAS/ (formally MCAD) regime. I must say though that I am still trying to find the best H1 fit for myself as Allegra makes me super duper hyper and my heart race and Claritin puts me to sleep. I have found that I think so far Zrytec seems the most mellow of the name brand bunch. Also On the MCAS forums they say that Zrytec is good for palpitations- I don't know how based in actual truth this is so don't quote me on it but I think I've found it to be true for myself for sure.

Also I should comment that Claritin helps me immensely with Tachycardia and that is something i noticed pretty immediately when one morning i was unable to take it until much later than i normally do and was really struggling with a racing HR. And then as soon as I took the Claritin it settled down immediately. This would actually make sense because in MCA, if your having an episode your body is filling up with too many Histamines, so think of it as the beginning of an allergic reaction.

Well what happens in an allergic reaction? Are hearts start to race, are bodies flush, we get an over reaction of our sympathetic nervous-system.

Also I have seen several quotes from Dr.Grubb's patients saying that they were told Wellbutrin was the AD of choice for this specific subtype. So again, I am not a medical doctor but I have found for myself so far it seems to be doing a pretty good job compared to the others i have tried. (which i have tried a bunch!) ex. Lexapro was too activating/ Celexa made my dysautonomia 20times worse/ Prozac worked for a bit but then made my Ehler-Danlos go crazy giving me hyper-extension of my muscle's. (which pretty much feels like you can flex your muscles until they snap!!!) The thing is I think most Doc's are afraid to try Wellbutrin on us because its so activating, so I'd love to know the science behind why this drug in particular has the reaction that it does in MCA patients who normally present with extreme hyper-sympathetic tone.

Also finally, most people on the MCAS boards swear by Singulair and say that that was the game-changer for them in over all better control of symptoms. My Autonomic specialist, once he realized that i had Mast Cell Disorder he asked if I had ever tried Singulair, and I had not and wanted to do some research on the matter before i went down that road. I have a follow-up with the Doc this Monday so I think now that i have done my homework I might give it a try.

[adigitalashley57]

Ashley I have a lot of the same symptoms as you do. Terrible flushing; I go suddenly red in the face/ears very quickly right around the time the world starts spinning and I start sweating. I have hives on and off all the time; they don't stay in any one place too long, but I'm always hivey and itchy somewhere. My temp also runs low, etc.

I do have hyper pots, though I started having sudden drops in my bp when I started antihistamines and zantac. Dr.s assume this is reflective of the control of my mast cell degranulation, and the beta blocker then doing what it should--lowering my bp. I tested positive for heat, cold and vibration-induced urticaria (hives), though one ray of sunlight wouldn't give me hives like you. It takes 5 or 10 mins in the heat for hives to develop, and for me it's heat, not sun directly.

I have been dxd with hyperpots and probable mcas. If that's helpful.

- It took me a while to find an antihistamine that worked for me without crazy side effects so don't give-up!! Also Mast Cells are sneaky little critters and anytime your antihistamines start to wear off they will come back with a vengeance thats why a lot of MCAD-ers multi-dose. Your symptoms sound Exactly like mine. With me, the heat more causes my to feel unwell, tachycardia, BP flucuations etc. I will get Hives if I'm too exposed to heat but really my Hives are spontaneous and come on more with an entire episode..

[Batik]

Ashley - Can I just say, as someone whose vision has been royally messed up by having ME/CFS, how much I appreciate the way you put in lots of paragraph breaks and put the meds names in bold? *applauds*

I'm writing a list of things to ask my GP about, in the hope that we might be able to pursue the mast cell business. I suspect it will all be put on hold until the POTS gets sorted out, but that's looking like it's going to take a really long time now, and meanwhile I could really do with something to take when my lungs feels like they're not processing enough air, or when I'm infuriatingly itchy. I've just noticed that Clarityn (Loratadine) can be bought over the counter in the UK, and is cheap. Would it be safe to simply buy it from Amazon, do you think, and then report back to the GP? Current meds are cetirizine (Zyrtec) and alimemazine (Vallergan), plus a couple of minor things like Vitamin D which shouldn't affect anything.