Mcad/mastocytosis Attack Happening Now And Have Question

[juliegee]

My experience was the same as yours, Carol. My HR (very high) and BP (very low, unless I was having an anaphylactoid reaction- then it was all over the place) were CRAZY until I got on the MCAS/MCAD meds.

The way that I understand it, POTS is a symptom of MCA. During a reaction, degranulating mast cells release mediators that make our vasculature leaky- severe hypovolemia ensues. The tachy is the heart's attempt to keep our BP high enough to get blood to our brains and vital organs. Postural changes will obviously worsen this.

With MCAS/MCAD meds, we protect our bodies from the effects of the degranulating mast cells and our autonomic symptoms are stabilized.

As far as things worsening with age- I do see that among the population. For women, perimenopause GREATLY worsens things. But, I also see men's symptoms pretty severe as they get older. Many are not able to find med regimens that help Research is evolving in leaps and bounds in this area. Hopefully, better diagnostic tools and treatments are on the horizon.

Julie

[POTSMama]

Frugalmama, Julie and Ana know so much more about this than I do, so I defer to them!

But I've been thinking a lot lately about whether I had MCAD symptoms in the past before the anaphylactic reaction to the antibiotic that set this off. It seems on surface like I had POTS alone for 20 years before I suddenly developed MCAD symptoms with that reaction and all the mast cell reactivity in the months since then. However, when I think back I recall a few things that now seem possibly mast cell related. First, some months before I developed POTS I had a week or two of very severe sweating episodes that my doctor couldn't explain and that I now wonder about, and over the last few years I've had flushing spells (which I thought were menopausal hot flashes but now realize were not). And I had occasional bouts of severe itching, dermatographism, and pink blotchy skin after a hot shower for years. Clearly since I've been on the antihistamines my blood pressure/pulse are getting more stable and the flushing/sweating is less and with fewer skin symptoms - - except for food reactions, which are unfortunately still a problem for me even though everything else seems to be improving some (I get low-level anaphylaxis-like symptoms whenever I try to expand my food choices). I never really did have consistent orthostatic hypotension but usually had mainly tachycardia with standing, but I also tended to have supine nighttime episodes (which I think might have been caused by adrenaline surges due to a noise disturbing me or a vivid dream). Over the years my POTS waxed and waned - - sometimes I'd have months of BP/pulse problems, brain fog, and exercise intolerance, and sometimes I'd feel pretty normal and my BP/pulse would be stable. I now assume this was related to whether I was having degranulation or not, although I can't be sure.

I worry a bit that because I had POTS symptoms for so many years that the MCAD may have been there too causing damage to my body because it went untreated. I'm glad I am now being treated so that I can hopefully prevent further damage. I also now believe my mother had undiagnosed MCAD/POTS. She had episodic tachycardia, constant low blood pressure, chronic inflammation and severe arthritis, sweating episodes, hyperparathyroidism, Sjogren's syndrome, chronically split bleeding fingertips (which I now am having also), and she and I both had weak collagen that resulted in pelvic floor prolapses that had to be surgicaly repaired. Possibly making it worse, her doctor told her to avoid antihistamines and had her on high-dose betablockers and a long laundry list of other medications that have many side effects. Sadly, I watched her degenerate physically and mentally over the years prior to her death a year ago, and I sure hope I can avoid that.

[anaphylaxing]

That is so sad about your Mom, Carol, I am so sad to read it. It must be So hard to lose your Mom. Glad you're getting on a treatment plan and looking for answers.

[Clairefmartin]

I love this thread! No hijacking issues, I am learning lots!

Carol - I am very sorry about your Mom, and I hope you get answers soon as well.

I am still waiting on results from my 24 hour urine Methylhisatmine (sp?) and just had almost 20 tubes of blood drawn yeterday, one of which was tryptase. We'll see what happens.

I had another attack when eating last night - pork loin with just sea salt, pepper and garlic, plain green beans, and this risotto that I have eaten for years. My entire back of my throat started itching and feeling tight, and I felt like someone was sitting on my chest. Totally random!

The only positives with my IgE blood work were pecan trees, cats, shrimp, and dust mites. Why am I reacting to all this other stuff??? Very frustrating. Getting ready to call the allergist for the epi-pen script, and we bought some benadryl and zyrtec to keep just in case.

I had a quetsion if any of you know anything regarding the MCAS/MAsto connection to the GI tract. I have had horrible GI issues and had to go gluten free 7 years ago. I'm now wondering if it is all related. My neuro-endocrine doc mentioned doing a pH test of my stomach - is this a mastocytosis test? Have any of you had it? It would really tie everything together nicely - I think I have hyperPOTS, the Gi issues, and the skin/food allergies. The only other Dx'ed issue I have is Raynauds, but I'm being tested for Cushings/Addisons and other autoimune stuff.

I really am on the hunt for why I have POTS, I'm over being unable to function! I could handle te previous dizzy/tachy stuff, but this is out of control. Luckily a neuro from the Cleveland Clinic just relocated to my hospital group, I'm try to get an appointment with him too - trying to avoid the 12 hour trip to Vandi.

Thanks for any input!

Claire

[janiedelite]

I've been reading more about amine-free diets. Pork is actually high in histamine and perhaps triggered your reaction.

[Clairefmartin]

Thankful - I just talked to the allergist, and he said there is a new thing called "pork-cat syndrome", where the albimin in pork has a shared epitope. I'm VERY allergic to cats. How weird - who knew?

Or maybe it is the amine issue - I will look into that as well. THANKS!

[juliegee]

So sorry to hear about your Mom, Carol. VERY sad. Sounds like she was quite mismanaged medically, but her docs had probably never heard of POTS/MCAD. There IS a strong genetic component to this (despite the medical literature) and my Mom is also affected. You will NOT have the same outcome as your Mom because you are figuring it out and getting the proper treatment.

I didn't mean to be a downer when I said that I see patients worsening as they get older- I do, BUT that's because symptoms that may have been mildly present our whole lives kick into high gear with major life stressors- surgery, accident, any trauma, chemical exposure, etc. Those things tend to accrue as we get older. MANY patients (like me) ultimately find med regimens that are very effective. I STILL have bad episodes, but know how to treat them to recover more quickly. I certainly no longer feel like I am fighting for my life on a regular basis

Claire, as far as GI stuff being related to MCA- oh YES!!! The GI tract is FULL of mast cells. GERD, excess acid, IBD, "D", "C", motility issues, nausea, vomiting, etc are ALL manifestations of MCA. Gluten sensitivity is common among the masties, as is Reynaud's. Most of us end up having the Addisons/Cushings work-up as MCA presents similarly. Sounds like you have a great doc and are getting a thorough work-up. Ranitidine (and PPI's if needed) really help with the GI stuff- as does gastrocrom, a mast cell stabilizer. Having a good MCAS/MCAD med regimen will help with the GI stuff and

[Clairefmartin]

So sorry to hear about your Mom, Carol. VERY sad. Sounds like she was quite mismanaged medically, but her docs had probably never heard of POTS/MCAD. There IS a strong genetic component to this (despite the medical literature) and my Mom is also affected. You will NOT have the same outcome as your Mom because you are figuring it out and getting the proper treatment.

I didn't mean to be a downer when I said that I see patients worsening as they get older- I do, BUT that's because symptoms that may have been mildly present our whole lives kick into high gear with major life stressors- surgery, accident, any trauma, chemical exposure, etc. Those things tend to accrue as we get older. MANY patients (like me) ultimately find med regimens that are very effective. I STILL have bad episodes, but know how to treat them to recover more quickly. I certainly no longer feel like I am fighting for my life on a regular basis

Claire, as far as GI stuff being related to MCA- oh YES!!! The GI tract is FULL of mast cells. GERD, excess acid, IBD, "D", "C", motility issues, nausea, vomiting, etc are ALL manifestations of MCA. Gluten sensitivity is common among the masties, as is Reynaud's. Most of us end up having the Addisons/Cushings work-up as MCA presents similarly. Sounds like you have a great doc and are getting a thorough work-up. Ranitidine (and PPI's if needed) really help with the GI stuff- as does gastrocrom, a mast cell stabilizer. Having a good MCAS/MCAD med regimen will help with the GI stuff and

Thanks for the clarification! That would explain A LOT! I have all of the above. Do you know of any good journal articles that outline that? I only have two articles regarding MCA issues, I'd like to add to my coolection

Thanks again!!

Claire

[DoozlyGirl]

Hi all. Just starting to connect my outlying autonomic issues to probable mast cell related issues, and ran across this American Heart Association article from 2005, that I thought was worth sharing.

HPOTS and MCAD: http://hyper.ahajournals.org/content/45/3/385.short .

I learn so much from this forum. Lyn

[Clairefmartin]

I just found this!! WOW!

http://biologyofkundalini.com/article.php?story=Histamine

Great summary and breakdown of how histamine works in the body.

And thanks Lyn, that is one of the few great articles linking hyperPOTS and MCAD.

[juliegee]

Here is a good outline, listing many of the major symptoms from MCA- including GI stuff. It was put together by The Mastocyosis Society. It's very helpful for newbies that are trying to decide IF overly reactive/too many mast cells may be behind their symptoms:

http://tmsforac.ipower.com/documents/What%20is%20Mastocytosis%20or%20Mast%20Cell.pdf

[Clairefmartin]

Just a quick update and question: I got my 24 hour methylhistamine back and my trptase - and both were "well within normal range". That was all I was told, because we were waiting for the paramedics to get to my house, I was having severe chest pain similar to my previous blood clots, and had to go get checked out (and I cant travel by car yet, only stretcher). I didnt think to ask for numbers. And no more emboli (thank God), just "residual pneumonia" whatever that means.

I need to get the actual numbers, and will do so when I go in on the 16th for my follow up appt. My question was should I ask for another test? Are there other tests besides the urine and blood work? My GI tract is such a mess, I'm wondering if they do endoscopies/biopsies or the 24 hour pH test as a part of a mast cell DX work up?

I'm a fit for MCAS - have every issue listed as common with it, and I know sometimes the lab tests can come back negative if you are not in an accute attack. I have never had my throat close up completely, but have itchy/swelling/hive/weird reactions to random foods and triggers. My allergist thinks my skin definitely lends itself to mast cell issues, but my lab tests do not.

Any thoughts? If my neuroendocrine doc on the 16th isn't much help with this, I may see if I can go see Dr. Stewart in Richmond, its only 90 minutes away. Does he see patients based on history? Or do you need lab numbers?

Sorry for all the questions - and thanks again!!! Such a confusing disease, but it just fits everything together I have been dealing with since my teenage years!

Claire

[Serbo]

Hi - Maybe an expert on MCS like Julie can offer an opinion

I can tell you I had 3 seperate samples for methyl histamine rather than 1 24 collection, 2 were high, 1 was normal.

The 2 "very high" samples I gave I was no where near anaphlaxis, just a bit flushed to be honest. I gave the samples at the end of hospital appointments, there was no attack or anything pre giving the samples. I was just aware that i was a bit flushed in general, but apparently that was enough to give high readings. Everyone is different though, a second opinion or sample after accute attack is probably needed.

Something that set me off today in a big way, the gel that they use to do an ultrasound. Had a full on reaction, erghh

[anaphylaxing]

I'm negative for everything too but still be treated for it with a positive response. Many of us fall into this category. In my opinion they just haven't sorted out the proper diagnostic criteria or figured out what to call "us" but "we" still need treatment

[Christy_D]

I think this may be a fit for my son as well, MCAD. I emailed a doctor in SC with my son's symptoms and his current diagnosis of POTS to see if mast cell issues were worth pursuing further testing. Like you, my sons tryptase and urine test were fine. The doctor in SC agreed we should look into it further to at least eliminate mast cell issues as being part of the problem. I have faxed all his records and am now waiting for the scheduler to call me to make an appointment..apparently there is a 4 month wait.

[juliegee]

Hi Claire-

Sorry to hear about your ambulance ride- VERY scary. I've had pneumonia (with my MCAS/MCAD) and it was awful. I feel for you.

Despite Aaron's kind words, I'm no masto expert, just a fellow sufferer. But, I think Ana's got it right- the diagnostic criteria still has a ways to go. Don't be discouraged by your normal levels. Both tryptase and methylhistamine are notoriously unreliable as far as proving MCA & both have such a short shelf life. It's almost like finding a needle in a haystack- if you can get the RIGHT testing done, the RIGHT way at the RIGHT time. Pay attention to whether or not you are improving with MCAS/MCAD meds. If so, chances are that's what you are dealing with.

Other things you can have tested are your prostaglandin D-2 and heparin levels. Also, there is a high correlation between norepinepherine and MCAS. In the meantime, work with a physician on tweaking your meds to become as functional as possible.

Hugs-

Julie

[Serbo]

Hi Claire-

Sorry to hear about your ambulance ride- VERY scary. I've had pneumonia (with my MCAS/MCAD) and it was awful. I feel for you.

Despite Aaron's kind words, I'm no masto expert, just a fellow sufferer. But, I think Ana's got it right- the diagnostic criteria still has a ways to go. Don't be discouraged by your normal levels. Both tryptase and methylhistamine are notoriously unreliable as far as proving MCA & both have such a short shelf life. It's almost like finding a needle in a haystack- if you can get the RIGHT testing done, the RIGHT way at the RIGHT time. Pay attention to whether or not you are improving with MCAS/MCAD meds. If so, chances are that's what you are dealing with.

Other things you can have tested are your prostaglandin D-2 and heparin levels. Also, there is a high correlation between norepinepherine and MCAS. In the meantime, work with a physician on tweaking your meds to become as functional as possible.

Hugs-

Julie

My Immunologist spoke very highly of the prostaglandin D-2 test, not something we have here in the UK

[Frugalmama]

Frugalmama

Yes excercise/strain can be a MCAS trigger for many

I had some weird hot flushes and tingling for a few weeks which might have been pots/mcas but nothing debilitating until the anaphylaxis and all that followed

what happened with you?

Sorry I missed your question, anaphylaxing! I have a weird presentation of this weird illness . I have POTS symptoms 99% of the time I stand for more than about 3-5 minutes. Thankfully I haven't passed out, as I do get a few seconds warning that things are really heading south, and I have greyed out before. But, before I get the tachycardia, I experience the following....nausea, shaking, flushing, getting REALLY warm, extreme weakness, extreme brain fog (I literally can't make even simple decisions), etc. I've now had three TTTs, and my HR only went up on one of them (and even then didn't have a full reaction). I'm stumped! The only reason I can get out of the house once or twice a week is because my awesome hubby babysits me...I'm very symptomatic all the time, and we have full-time help here at home to take care of my three little ones. So sick, and yet crappy TTT results.

I am headed to an immunologist on the 13th for allergy testing and to chat with her about MCAS. Apparently she is familiar with Masto, although I'm not sure about MCAD. I guess I'm wondering if MCAD could be causing all of this, because the only thing that is different at the tests than in "real life" is the fact that they are scent and allergen free environments, and they require fasting (scents, chemicals and eating trigger me every time). Thankfully, no anaphylaxis here, but I seem to fit the "leaker" symptoms to a tee.

Is it possible to have a masto reaction just to standing? Any thoughts from all you pros would be awesome . What a confusing set of symptoms! Thankfully my GP is awesome, but he really is just trusting my research as we move along. Thank you all for sharing your experiences...it helps put the puzzle pieces together!