For Those With Mcad

[bebe127]

And for anyone else that might be able to shed some light...

I apologize in advance if this is long and rambling.

I've been reading some on MCAD and feel as though I have many of the symptoms, although many more questions. I know this has something to do with histimines in our system. The term histimine immediately tells me it must have something to do with allergies (please feel free to correct and/or educate me at any time!). I have never been formally tested for allergies. I know that I am allergic to Sulfa as I had a bad reaction once. I have always had sinus issues. I have migraine type headaches and have had them for years. The first time I went to the Dr. he told me that my headaches were from sinuses. In my head I dismissed this because I just thought they were migraines as many of my family members suffer with this as well. At the time (I'm going back 16 years, so it's hard to remember) I seem to remember being on atibiotics for a long time to try to clear up a sinus infection. After a month of being on meds. the dr. suggested I see an ENT. I did and he put me on antibiotic for a month. The infection seemed to go away, although through the years have still had issues.

Fast forward...this might get a bit gross

Over the last several years, I have been experiencing these headaches. I always know when they are coming on and in my house they are referred to as "the headache". My husband will ask, "Is it 'the headache'?" They usually last about three days, peaking on the second day. Most of the time they get so bad that I'm in bed for the duration. They are usually on the right side of my face, around my sinus area, eye, and even at times my ear and neck hurt as well as my teeth. Sometimes my right eye will get droopy. I've been to many dr.s to no avail. Weird thing is, is that I have an inordinate amount of mucous when I wake in the mornings. I brush my teeth and immediately have to blow my nose. WARNING, here's the gross part: When I am having these headaches it seems as though my sinuses are packed and full of pressure. There are times when I blow my nose and this thick (like rubber cement) almost kinda milky mucous comes shooting out. It seems to build up and I blow, and I begin the process all over again. I feel like snotting into a petri dish and taking it in to the dr.! At any rate, I blow my nose every morning. Sometimes I have sneezing spells and have to blow my nose. Once this thick, yucky mucous is out, my headache seems to dissappear. I get these headaches about every eight weeks. It's as if it takes that long for stuff to build up and put so much pressure on my sinuses that I get a bad headache.

I've been to GP's, Neuro's, ENT's, have had Cat Scans, MRI, sinus endoscopy, x-rays, used neti pot and no one can seem to come up with anything. No meds that I have taken from OTC headache meds to narcotics to rx migraine meds help. Nothing helps. In fact, probably for the last 10 years I have taken nothing when I get these headaches. I just writhe in pain and wait for it to pass.

So, after that long, drawn out ramble here is a question or two:

Might I benefit from taking Zyrtec and/or Zantac? I've read that these have been beneficial in treating MCAD. I don't know if I have MCAD and I shudder to think of having to search for a dr. that knows about and/or can treat this as I've had such a hard 3+ years in finding a Dr. that knows more than I do about dysautonomia. Anywho, I'm on Metoprolol and Xanax, don't know if these would have any affect on the allergy meds or vice versa.

Am I making any sense???

Any insight would be appreciated.

P.S. I'm sure that MCAD is much more complicated than merely allergies, but that seems to be the common thread in a lot of things I've been reading

[Katybug]

Have you seen a neuro that is actually a headache specialist? Again, its a specialty within a specialty. I have severe migraines and it's unusual to have sinus involvement. But maybe you have both sinus issues that need to be addressed and migraines. I have had times when I have started out with some other type of headache and that has triggered my migraine.

As for the meds, you should consult your doc or pharmacist to check for drug interactions. Mcas is always a possibility and it presents differently in each person so its worth looking further in to the possibility.

[Kellysavedbygrace]

Mast Cell Activation disease (MCAD) is thought to be a mutation of the mast cell (or allergy cell) that causes inappropriate "activation" (or degranulation) of the mast cell which releases chemical mediators into the system. Mast cells are a part of the immune system located throughout the body and when they operate normally they release various chemical mediators (such as histamines) in response to an invader (such as an allergen.). This is why many people who have allergies take antihistamines to reduce the effect of histamine release in their body. But histamine is just one of an estimated 60-200 chemical mediators experts believe are inside the mast cell. Some known chemical mediators and cytokines that have been identified in the mast cell include: Heparin, Tryptase, Chomagranin A, Prostaglandin D2, Luekotrines, etc. So when someone with MCAD experiences mast cell degranulation the symptoms are often widely varied and heterogeneous. This makes recognizing MCAD with specific symptomatic complaints such as allergies, sinus issues, flushing, etc. challenging. In fact, the best way to identify if a patient should be screened for MCAD is this:

Do they have multiple symptoms in many or all organ systems of the body? If so, MCAD should be considered as a differential diagnosis to be ruled out.

I noticed you mentioned allergies to sulfa, headaches and a unique constellation of sinus problems. I also see "POTS" listed as a Dx for you. Do you have other problems w organ systems?

[bebe127]

Katybug,

Thanks for your response. I haven't been to a headache specialist. The neuro I went to years ago sent me for an MRI and said that nothing looked out of the ordinary. I've often wondered though, if you go in for the test and you are not having a headache at the time, what is it going to show anyway?? Obviously, I don't know when I'm going to get one and if I got one, there is no way I could make an appt. for dr. and have him rx a scan in two to three days time. Anywho, that particular dr. put me on Maxalt and it did nothing for these particular headaches, didn't even touch them. I took it once for a headache that was coming on (not "the headache", I can tell the difference) and poof, it went away. Still nothing works for "the headache". When I get "the headache", it always seems to involve my sinuses, almost always on the right side, blah, blah, blah.

Kellysavedbygrace,

Thanks so much for your explanation. I'm not sure I know what you mean by issues with other organs. I was dx with "what is probably POTS" back in 2009. I do not faint or have pre-syncopal episodes, don't seem to have blood pooling, don't know if I have low blood volume, don't seem to have issues standing or sitting although tested positive on the TTT. When I used to get what I called "episodes" they were like panic-type attacks. I would get tingly all over, my legs would shake, heart racing, bp up, sweaty, muscles getting rigid in my face and quadraceps. I don't get these anymore. I have some GI issues such as the big "D" often and it is hard for me to eat a big meal and I've lost weight over the last three years, but have never had any of this checked out as I've always just assumed it was due to POTS. I have hearing and vision issues. My bp is all over the map. Originally, before POTS dx, I was dx with hypertension and high cholesterol and put on Norvasc and Niacin, although after my first and only ER visit and hospital stay following one of the above mentioned "episodes" I was told by an electrophysiologist (who later dx "probably" POTS after a positive TTT) and the admitting dr. that I didn't have either hypertension or high cholesterol and to stop the medication. Told me to eat more salt and drink more water, which I did, but all that did was give me high blood pressure. I began seeing a GP (the EP that dx me only dx, does not treat, nor did he know of any dr.s he could refer me to) that has other POTS patients. We fooled around with different meds until finally settling on Metoprolol and Xanax. I am doing a bit better, but not sure if it is the meds or I'm just dealing with my body better or what. I still have a myriad of symptoms: chest pain almost daily, vision/hearing issues, GI issues, sleep issues, high anxiety, tachycardia, fatigue, no appetite, and nausea. These symptoms are daily and I also have other things that are waxing and waning.

I guess I just feel like I'm grasping at straws and trying to figure out if something else is wrong or if I can get to the root of my issues as no dr. I've seen has ever really ruled anything else out. They've all just taken the original dx and concurred. I don't know what type of POTS I have, how I got it or if it will ever go away. One day I was fine and the next my body was going haywire in a way I have never experienced. I have a blog that explains my journey with this whole ordeal. At this point I keep going back to the "probably" and I'm questioning everything now. UGH!

Thanks again.

[E246]

Hi Bebe,

trying to sort out the MCAD issues too - thanks for the post.

Can anyone tell me should the tryptase test be done when you are symptomatic?

I had a test but felt fine at the time.

I frequently react after food, in cars, etc but cannot find a common denominator. Can mast cell be like this?

[ophelialit]

Bebe127,

I was just diagnosed with MCAS last year, and it took me YEARS to chase down the diagnosis after seeing every doctor in the universe including some witch doctors and a voodoo priest! Ha! Just kidding, but seriously, it can be quite a journey....what Katybug meant by involvement in other organs is that MCAS tends to affect areas of the body with a high presence of mast cells--so the stomach (GI issues), bladder (interstitial cysitis), reproductive organs (endometriosis), eyes (uveitis, iritis), skin (rosacea), etc. Those happen to be the issues I deal with personally, but I'm sure there are other examples....your best best is to find a top-notch immunologist and go through the testing process as thoroughly as possible....hope this helps!

[bebe127]

Thanks Ophelialit. The thought of going on a new search tires me out just thinking about it. I was dx in 2009 and have never really been treated. My GP is very nice and makes an attempt, but then I read about all these other things, tests and whatnot that just leave me even more confused. To be perfectly honest here, I was hoping that if I just started taking allergy meds (after asking dr. of course) I might feel a difference. I am forever searching for the "magic pill". I am aware that there isn't one, but one can't help but hope!!

[Katybug]

bebe,

The answer to the MRI question is that the MRI would show the kind of abnormalities an MRI can detect whether you were having symptoms or not. MRIs show structure of the brain (and if a doc ever sends you for an MRA which they might given your headaches, they show structure of the vasculature in your brain.) An MRI does not show any type of brain function so not having symptoms doesn't affect the outcome. PET and SPECT scans are the tests that map the actual activity of the brain during the test.

[DoozlyGirl]

Hi Bebe,

First of all, welcome. I think you have found your tribe.

I was diagnosed with dysautonomia three years ago and suspected mast cell activation syndrome about a year ago. Boy, have I learned alot along the way.

Bebe, I was stuck by several things in your posts. First, your symptoms could be attributed to daily/ongoing/ episodes of degranulation. I suspect your betablocker is a likely trigger, as well as OTC and prescription pain meds.

Your description of sinus thick goo is exactly what struck my docs early on in my progression. I've had 4 sinus surgeries and had this thick crud, that is different than anything my ENT had ever seen before. I know now that this was due to the histamine releasing continuously due to the meds I had taken for years.

Do your headaches come with typical migraine symptoms? Aura and nausea before the pounding starts. Focal pounding with your hearbeat? Can't stand light or sound, must lie flat and not move. You are glad to throw up because then you know they are near the end? Feel drunk or hungover the next day?

Or can you tolerate tv, sound, and light during them? Do you feel better sitting up, reclining or laying flat? If they don't meet the typical migraine definition, which I am thinking because our migraine meds don't touch them, then I wonder if they may are a masto headache due to massive release of histamine.

I've had just about every type of headache out there. Migraine with and without aura, headaches due to brain tumor pressing on brain, sinus headaches, tension headaches, headache caused by a CFS leak after they had to draw out the CT contrast from a myelogram, orthostatic headache due to CFS leak after epidural, and histamine headaches. And each of them are different in subtle ways, but still different in how I could treat them and how they progressed. Histamine headaches are just as debilitating as any of my worst headaches. I have found that dye free Benedryl liquid gels will help with them. If that doesn't cut the histamine reaction, then I take one uncoated asprin, as this blocks the pathway where prostaglandins are dumped during the mast cell reaction.

Zantac and Zyrtec only block the receptors once the histamine is released. Benedryl is a H1, but also is antiemetic, meaning it helps with nausea, will make you sleepy so you can sleep off the headache and has other beneficial properties. You don't want to take Benedryl everyday or very often, since this is one of the best emergency meds to stop mast cell reactions.

Xanax is sometimes used to help uber sensitive folks, as mast cells have a benzo receptor, so it is known to tame mast cells. But the metropolol is likely aggravating your mast cells.

Oh when you describe BP all over the place are you flushing, or having sweats, swelling and/or tachy at the same time? If you are having a skin symptom, like flushing, swelling, itching, hives and GI issues or cardiovascular issues at the same time, this meets the definition of anaphylaxis. I have only had throat sweeling a few times, but my anaphylactic reactions are most often cardiovascular anphylaxis, where my BP can be stroke level or so low I am barely breathing, while I face a host of other symptoms.

Good luck finding your way.

Lyn

[bebe127]

Lyn,

Thanks so much for your response. I have a lot of thinking to do! I'll try to answer your questions the best I can.

I was dx in 2009 with POTS through a TTT. I met the dx dr. after my first and only ER and hospital visit (If you look on my blog and go all the way back to the beginning, it tells about my entire experience). This was completely out of nowhere and it was a panic-type attack episode, in fact the EMT's said it was a severe anxiety attack and I should probably see a dr. and get put on meds. I had never, I mean NEVER experienced anything like this before.

As far as the meds go, I've been on the BB for about two years and I think it has helped me somewhat although I still get tacky and my bp fluctuates a bit. I still feel crappy most of the time. It's like I have menopause, the flu and a hangover just about every day. I have extremely high anxiety. Good news is, is that I haven't had any episodes like the first few in a long time. Prior to these meds, the only thing I would take is some IB if needed. Probably 10-16 years ago is when I was going to dr.s, having sinus issues and taking antibiotics. Around this time is when the headaches began and I only took medication when needed. Usually, if it didn't work the first time, I wouldn't take it again. So, it's not like I was on prolonged us of OTC and/or rx meds. Once and a while I would try OTC sinus headache remedy, but that did nothing as well. Again, if the meds OTC or rx didn't work the first time, I stopped taking them.

Years ago, I'd been to my OBGYN to see if the headaches were due to my cycle, a Neuro who couldn't find anything wrong through MRI, and an ENT that did xrays, CTSCAN, and an endoscopy and told me he saw no reason why my sinuses would be causing my headaches. I told the ENT about the thick goo and he had nothing to say. I also saw a GP a few years ago (he was a complete jerk) and told him about the headaches. I suggested that they might be due to my sinuses or allergies and explained about the thick goo. His response was, "You and 75% of everyone that lives down here has this same problem." He had no answers or suggestions. No one has ever mentioned allergies. My father and sister have both had sinus surgery to no avail, they still have sinus issues and my sister, brother, and late mother have had migraine issues for years.

When I get "the headache" I can feel it coming on. I can tell that my sinuses on the right are clogged although I can usually breath out of my nose. I can tell sometimes when I swallow because my ear will get clogged. I do not experience aura, I am sometimes light sensative and have to wear sunglasses in the house, especially if I'm attempting to watch tv. Noise doesn't really bother me, sometimes I feel nauseaus because of them, but never vomit. They usually last three days, the pain peaking on the second and by the third day, it disappears. During this time is when I have this thick goo stuff that I blow out. Otherwise, I still blow and blow my nose regularly but it is thinner, and still the milky/clear color. Usually, I have to lie down. It doesn't matter how I lay, mostly I just curl up in the fetal position and sometimes put a heating pad on my face/head. Sometimes that helps, sometimes it doesn't. Sometimes are worse than others. Many times, it's hard for me to sleep, so I just lie there in pain.

I am on Xanax for my anxiety. My dr. told me that this is the best choice for me as I am sensitive to meds, and he also said this is an old, tried and true med that is fast acting. It has helped tremendously with the anxiety although, I still suffer with it, just not as bad as before. Sometimes I have to double up if I know I'm going to be going somewhere. Like this morning, I have to take my kids to their homeschool co-op where I also teach an hour long class. I begin to feel anxious during the week, knowing I have to do this every Friday morning. I make it there fine, although not without much praying and positive self talk. Once there, I usually calm down and can get through the class.

As far as my BP goes, I usually don't take my vitals as often as I used to because that would just cause more anxiety. Sometimes it is on the high side, sometimes lower, but there are still times that I feel crappy, I take my vitals and all is fine. I just don't get it. It doesn't seem to matter what my vitals are, I still feel crappy. I do have night sweats at times. I experience tachy daily, usually worse if I'm anxious. I don't experience flushing that often. I go from feeling cold to sweating usually in the evenings after dinner while I'm on the couch. My feet are constantly cold at night. I've never had swelling, itching or hives. I do have GI issues, but have never had these checked out as I've always just chalked them up to POTS symptoms.

Thanks again for your response. I am going to definately bring all this up to my dr. the next time I go into see him.

[DoozlyGirl]

Bebe,

Thanks for the additional information. I used to degranulate every day due to my meds, and the best way to describe it having a killer hangover, the worrst flu and my worst period all at the same time. So we have that in common. When you constantly degranulate, you rare constatnly dumping all those inflammatory chemicals into your body and setting off all sorts of cascades of more chemicals. The goal for now, would be to see if you can get the constant symptoms to occur in episodes, so they have a beginning and ending. This is what I did, and it proved my issues waxed and waned and I did not have PAF or MSA, as my autonmic docs were thinking.

I am uber sentitive to dyes, chemicals and preservatives in everything, from my meds, to food to personal care products to household cleaners. Once I figured that many of these things degranulate mast cells, I knew I was on to something. Yellow dye (think food coloring) one drop on my tongue sets off cardiovascular anaphylaxis in me within 10 minutes. Other things, like red and blue dyes, gluten, and dairy take longer but can set off slower reactions. My slower reactions start off as belly pressure, bloating, constipation, overall puffiness, GERD, sinuses filling up, tonsils enlarging, headache, flushing, and then tachy, and other Cardiovascular issues if I don't stop the cascades. Look for any FD&C dyes, numbered ones. They are known culprits. I can tolerate the oxine dyes, as they are different in chemical structure.

Your anxiety is also likely tied to the imbalance in the your autonomic nervous system. Dopamine and serotonin production and reabsortion/recylcling is tied to cascade of norepi, epi and serotonin production and recycling. In the biochemistry scheme, issues with COMT, VDR and MAO A and MAO B genes (found in 23andMe genome study) could explain this disruption, at least there are a bunch of us with autonomic issues who can pinpoint out specific autonomic issues back to this.

Remember that your individual symtoms are based off of your specific biochemistry and may not match others symptom by symptom. But the mechansims of disease/disorder can pinpoint where to look in your own situation.

Good luck with everything. I suggest checking out a forum called Mast Cell Disorders Forum, where you will learn some great points about mast cell disorders to guide you.

Best wishes,

Lyn

[bebe127]

Thanks Lyn, hope you are well