Mast Cell Activation

[flop]

Cat lady - are you taking antihistamines regularly? If you are they will reduce the hives effect of dermographism. I leave red lines after scratching usually but when I came off my antihistamines for skin-prick testing I came up in the weals when I scratched.

Flop

[MightyMouse]

Hi Flop, I was supposed to be off of all my meds for testing at NIH, but after about 3 days, they gave me back my h1 and h2 blockers b/c I was such a mess. I can't survive without them, so I wonder if testing is even worth if for someone like me, who knows that symptom-wise, I need those things. Also, the addition of the leukotryine blocker (singulair) has been paramount to me avoiding any major reactions for quite a while.

Nina

[juliegee]

Hi Carinara-

I don't know of any articles about MCA in German... but here are a few links that I don't think I've seen on DINET.

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

http://www.pubmedcentral.nih.gov/articlere...i?artid=1501099

Can MCA be dangerous? Yes, if it leads to full blown, untreated anaphylaxis. If you've not experienced it before, you probably don't have to worry. But, getting tested, during a low point, would be a great idea.

Julie

[flop]

Nina, as far as I know you can have the serum tryptase and urinary methylhistamines tested whilst you are still on all your meds (the tests measure how much histamine is around, the meds change how you react to the histmaine rather than stop you producing histamine). I'm sure someone will correct me if I've got that wrong.

I had to come off my meds for skin-prick testing not related to MCAD (I suspect that I just have horrid allergies but I will try to look into MCAD as a possibility).

Does MCAD only happen with hyperadrenergic POTS? Does a normal norepinepherine level during tilt test rule out hyperadrenergic POTS? Would that rule out MCAD?

Everytime I think that I have learnt as much as possible about POTS a new dimension opens up with so many new questions!

Flop

[firewatcher]

Flop, from what I've read, if I understand it correctly, MCAD will only happen in hyperadrenergic POTS (look at the reference article earlier in this post.) But this is the first direct reference to this that I have found.

Also, if I understand correctly, a normal norepinephrine level on TTT does not mean that you do not have hyperadrenergic POTS. You can have hyperadrenergic POTS with normal or low NE levels, you just over-react or don't clear it from your system (NET deficiency.) My diagnosis was based on my ever increasing BP readings in response to autonomic stressors.

[juliegee]

Nina-

Everything Flop has shared re. testing for MCAD is right on the money. You do NOT have to come off of your meds. BTW, you sound an awful lot like me...can't get off of your H-1's, H-2's, and singulair. Hmmmmm.

Flop,

I don't have a clue as to WHAT type of POTS I have. My HR goes up sometimes as much as 60 BPM when I stand. I've never had a formal TTT done. (I'm too scared that I'll have anaphylaxis.)

[MightyMouse]

I've had multiple anaphalactic reactions over the years... one was when I was receiving allergy shots at nearly the lowest level possible. I woke up after 2 doses of epinephrine. It happened again the next visit to the allergist and we gave up. After that, nearly every med that went into me for 2 years set off a reaction.

[flop]

I've had several TTT and I still don't know what type of POTS I have - I seem to have features of several types that don't really seem to go together??

My TTT when off meds shows HR increase from 70 to 170.

BP is normal most of the time but has become low / narrow pulse pressure 96/90 when feeling very close to fainting during tilt.

My valsalva test, nerve studies etc showed I don't have autonomic failure / autonomic neuropathy.

I do get some acrocyanosis and have very cold feet almost all the time.

I have been diagnosed with Ehlers-Danlos syndrome (hypermobile).

My POTS suddenly became evident during a viral illness (but looking at previous holter recordings I was tachy at 120/min most of the time several years before getting ill).

I have allergies of eczema, asthma, rhinitis (hayfever, perennial and vasomotor!), dermographism, oral-allergy syndrome (mouth itching and swelling after eating fruits), intolerant of gluten and milk. (skin prick positive reactions to grass, hose dust mite, shrub, birch, lesser reactions to cat, dog and mould).

I always feel hot but have a normal or even low temperature when measured.

I have a strange sweating pattern and it was commented on that I had abnormal facial sweating during my TTT (I felt like my face was on fire, they didn't say if I was flushed or not).

My immunologist wanted to give me an epi-pen and do proper desensitization (injections) but because I am on beta-blockers he can't do either. (Both my cardiologists insist that I must stay on the beta-blocker). I take an antihistamine (acrivastine) every 8 hours, singulair daily and was on ranitidine twice daily (immunologist stopped this as he says H2 blockers don't help in allergies).

The only time in the last few years when I felt totally "normal" was when taking prednisolone 10mg daily for several months to control my hayfever. (Cardiologist says there is no way that prednisolone would make my POTS symptoms go away but I could stand up in a very hot room for hours without feeling dizzy at all).

Any clues anyone?

A very baffled Flop!

[carinara]

Julie, thanks for sharing the two articles. very interesting! I found my doctor being a part of the second article about POTS. Thats also the doctor i asked about MCAD. There is so much more to learn!

carinara

[firewatcher]

Flop,

"The only time in the last few years when I felt totally "normal" was when taking prednisolone 10mg daily for several months to control my hayfever. (Cardiologist says there is no way that prednisolone would make my POTS symptoms go away but I could stand up in a very hot room for hours without feeling dizzy at all)."

If the severity of your POTS symptoms is mediated by your histamine reactions, (or possible autoimmune) then prednisolone would help a good deal. No, it won't help if you ONLY have POTS, but if you had MCAD, and your POTS reactions were triggered by mast cell activation it will help. Take the Mast Cell/Hyperadrenergic POTS article to your cardiologist/POTS doc and ask to give it a whirl!

By the way, your BP response (diastolic up to 90 or more) is (by my understanding) indicative of a hyperadrenergic response, your body is desperately trying to compensate to the posture change by constricting everything as tightly as it can! My face, hands and feet (only) were visibly sweating during my orthostatic test at Vandy and my hands were cold! I did not have a TTT, just standing there was enough.

[firewatcher]

"Chest pain is a common clinical complaint. About 30% patients with chest pain will have a normal coronary angiogram and are described as having noncardiac chest pain (NCCP). It is estimated that 25% of the population complain of chest pain at some time in their lifetime. The pathogenesis of NCCP is unknown. Esophageal hypersensitivity as a result of inflammation is considered to be an important mechanism in the development of this pain sensation. Little is currently known about the interaction between inflammatory mediators and peripheral afferent nerve terminals in the esophagus. The mast cell is one of the most enriched pro-inflammatory cells in the gastrointestinal tract. Activation of the mucosal mast cell releases a variety of mediators into adjacent tissues. We hypothesize that mediators released by mast cells sensitize esophageal nociceptors and induce pain sensation."

Role of Esophageal Mast Cell Activation in Noncardiac Chest Pain (NCCP) 2005

http://clinicaltrials.gov/ct2/show/NCT00219492

I have not checked further into this (final study results,) but it seems to fit some of us!

[EarthMother]

Just a note on that urine test we have been talking about. It seems some have had this as a 24 hour and others as a 4 hour. I don't believe there is a definitive answer, but one of the folks at Vandy had this to say "[the test is] called a urinary methyl histamine level. We usually ask subjects to wait until a bad flushing episode. At the onset of the episode, the patient is instructed to void and discard. The patients should then collect a 4 hour urine sample and send this to the laboratory. The rationale is to collect an ?enriched? urine sample. This is more often negative than not, but this method is designed to optimize the yield."

[flop]

Jennifer - thanks for your reply

your body is desperately trying to compensate to the posture change by constricting everything as tightly as it can!

if I am already constricting my blood vessels then that may explain why I had no improvement when taking Midodrine.

If MCAD only happens with hyperadrenergic POTS then I guess I need to work out first if I have the hyperadrenergic type of POTS. I think I need to do some more reading (unfortunately I'm staying with my parents and my books by Dr Grubb are a my place not here)!

Flop

[ramakentesh]

I just thought Id pop in my two cents there.

There are research bodies that still do not except that POTS can be broken up into the two clinical forms that Dr.Grubb provides: PD and hyperadrenergic.

Until the cause(s) of primary POTS are definitively demonstrated it is hard to know whether these two catagories are correct or not.

It is possible that the impaired norepinephrine reuptake exhibited by some POTS patients is just one extreme of the condition - a coping mechanism in response to blood pooling. Some 'hyperadregenic' POTS patients exhibit venous pooling which is paradoxical to elevated norepinephrine levels or impaired clearance. On the other hand people who have been designated as having the PD form sometimes exhibit elevated NE levels.

I was found to have hardly any NET in a vein biospy but there isnt any 100% guarantee (yet) that this is the cause or the consequence of my POTS (low NE levels have been shown to mediate expression of NET).

Second thing Id mention is that allergies can make POTS in any patient worse and antihistamines would be helpful in these patients as histamine is a vasodilator.

before I got POTS i used to get nights of extreme itchiness - often wondered whether I am Mast cell active.

[firewatcher]

I just thought Id pop in my two cents there.

There are research bodies that still do not except that POTS can be broken up into the two clinical forms that Dr.Grubb provides: PD and hyperadrenergic.

Until the cause(s) of primary POTS are definitively demonstrated it is hard to know whether these two catagories are correct or not.

It is possible that the impaired norepinephrine reuptake exhibited by some POTS patients is just one extreme of the condition - a coping mechanism in response to blood pooling. Some 'hyperadregenic' POTS patients exhibit venous pooling which is paradoxical to elevated norepinephrine levels or impaired clearance. On the other hand people who have been designated as having the PD form sometimes exhibit elevated NE levels.

I was found to have hardly any NET in a vein biospy but there isnt any 100% guarantee (yet) that this is the cause or the consequence of my POTS (low NE levels have been shown to mediate expression of NET).

Second thing Id mention is that allergies can make POTS in any patient worse and antihistamines would be helpful in these patients as histamine is a vasodilator.

before I got POTS i used to get nights of extreme itchiness - often wondered whether I am Mast cell active.

That's funny, I've always had POTS symptoms, but no allergies at all until the episode with my ex's cat! I think that this is why they have been studying all this for so long, it's the chicken and the egg all over again. Maybe I'm just a duck! Quack! (No wait, that was my old doctor, he was the quack...)

[iheartcats]

Hey guys - getting everything together for my tests with the PCP this week (urine + serum + possibly RAST).

Now. One thing I'm worried about is going off my allergy medicine (Allegra) for 3 days to have the skin biopsy. Even if I can tolerate those three days, could I have an issue with the skin biopsy since I'm so sensitive? Or should I just get it over with and tell the allergist?

At least right now I'm just on Allegra...I want to add Zantac next week...and possibly Singular in the future (maybe will wait until Spring when my symptoms are always horrible to try Singular and give the Zantac/Allegra time to work, we'll see).

But - any thoughts on the skin test? Should I get it done now when I only have the Allegra to go off of for 3 days? I've never had a full blown can't breath/pass out Ana. attack, but I have had severe flushing/hives/diarrhea.

Thanks!

[firewatcher]

Tell the nurse who administers the test about your extreme reactions. Once you get the test, have them check on you every 5 minutes instead of in 20 minutes. If you feel ANY type of difficulty breathing TELL THEM!!!!!!!!!! Ask if they have Epi before the test (they should,) [just in case of a systemic reaction]if they don't, don't test. You need to find out what you are allergic to, so grin and bear it, it's not comfortable but it is over quickly. They will probably give you zyrtec after your test and slather your back in benadryl cream.

As to the POTS, lay face down on the table the whole time and stay there, don't give your system a chance to kick in.

Good luck! The good will and prayers of all us allergic folk go with you!

Jennifer

[iheartcats]

Tell the nurse who administers the test about your extreme reactions. Once you get the test, have them check on you every 5 minutes instead of in 20 minutes. If you feel ANY type of difficulty breathing TELL THEM!!!!!!!!!! Ask if they have Epi before the test (they should,) [just in case of a systemic reaction]if they don't, don't test. You need to find out what you are allergic to, so grin and bear it, it's not comfortable but it is over quickly. They will probably give you zyrtec after your test and slather your back in benadryl cream.

As to the POTS, lay face down on the table the whole time and stay there, don't give your system a chance to kick in.

Good luck! The good will and prayers of all us allergic folk go with you!

Jennifer

Thank you for the encouragement. I too think it's good to get through it...I just have to do it and at least I only have to stop Allegra for the 3 days.

I didn't think about lying down, so will tell them. And will mention the reactions/need of an Epi. I have an Epi so will take it just in case. Where I am being tested is right across the street from a big hospital so that's a comfort.

[flop]

My skin prick tests were done on my forearm, the nurse thought I was mad asking to lie down (noramlly they put people back in the waiting room for the 20 mins before reading the test). She reluctantly agreed but was greatful when se saw how white I went when I sat up to take my benadryl and made me lie back down again!

Flop

[nantynannie]

I have a question for those of you familiar with this MCAD...is it possible to be highly allergic to something one day and not the next?

Thank you!

[iheartcats]

I have a question for those of you familiar with this MCAD...is it possible to be highly allergic to something one day and not the next?

Thank you!

I was wondering this too. Today I had a few hives and I had eaten or done nothing. Nothing! I guess I get them from heat/hot water/etc sometimes.

But regarding other stuff - I wonder if one day a food bothers me, the next day it's fine. I fortunately mostly just get hives/upset stomach. Maybe I'm just sensitive. It's annoying. But I haven't been diagnosed with MCAD yet.

[juliegee]

Yes, yes, Yes! That's the frustrating thing about MCAD. We never know our triggers and they are rarely consistent. I can't get TOO- too hot, too cold, too happy, too sad, too hungry, too full, too stressed, too sleepy, etc. I feel like Goldilocks sometimes. Any stress (normal life, car wreck, surgery, procedure, funeral, etc. can set off an attack: hives, stomach woes, flushing, tight throat, tight chest, shaking, extreme fatigue, lightheadedness, tachycardia, drop in BP, etc. An attack can also vary and consist of some OR all of these symptoms. Very frustrating.

BUT, when I'm on my regimen I can stay fairly stable. Sometimes I need my nebulizer, rarely an epi-pen. In addition to the H-1's and the H-2's, some folks also need mast cell stabilizers like ketofin and gastrocrom.

Julie

[jjb]

That's the frustrating thing about MCAD. ..... We never know our triggers and they are rarely consistent.

Julie

This is why I call my & Ava's immune/allergy related issues quirks. They are never consistent!

Ava was getting fitted for a fiberglass cast once. Pedi knew she was sensitive so she was sure it was lined w/ 100% cotton. Ava still managed to have a couple of "odd" hivey welts. Pedi was like what the ????

We figured it must have been from the heat of the saw. Who knows though.

I get those isolated hivey welts too.

So what tests do they do for MCAD?

Is the test pretty accurate?

[flop]

I think it is more a clinical diagnosis rather than based on test results. The urine methylhistamine can prove that histamine relase took place but I think it is hard to "catch" an episode and the urine tests are often negative even in people who do have MCAD. (I'm sure Julie or one of the others will correct me if I've got that wrong).

Flop

[futurehope]

"The only time in the last few years when I felt totally "normal" was when taking prednisolone 10mg daily for several months to control my hayfever. (Cardiologist says there is no way that prednisolone would make my POTS symptoms go away but I could stand up i"n a very hot room for hours without feeling dizzy at all)."

I do not have the mast cell activation symptoms you are all describing, by I have over 600 epinephrine upon tilt, and various "normal" type allergies such as hayfever, allergies to cat, dust mold, etc. in the form of sneezing, runny or stuffy nose and vasomotor rhinitis.

But, without a doubt, when on the Cortef (very small dose of 1/2 of a 5 mg pill), my POTS was better and my normal weakness was better. I love the stuff, but there is a catch....

I started to put on weight like crazy. I was perpetually hungry. I cannot continue gaining weight as I then develop knee, back and other problems such as severe exhaustion from lugging the extra weight.

But, yes, Cortef (a form of hydrocortisone) is very helpful for many of the autoimmune things I have such as Interstitial Cystitis, maybe POTS, gastritis (inflammation of the stomach, and lichen sclerosis.

Like I said, I love the stuff, minus the effect it has on my weight.