Mcad Questions

[POTSMama]

First yesterday and now again tonight I had very bad mast cell activation episodes (not sure what triggered them). Came close to using an epi-pen (which I've never done before) and going to the hospital but I took a lot of Benadryl and the worst passed. Here's the thing though - - These episodes were different from the ones I've been having for weeks now, because along with the flushing/hot skin and blood pressure fluctuations came a new and alarming symptom - - the left side of my face and throat and tongue went numb, and started to feel like they were swelling. (along with a metallic taste in my mouth) I mean really numb, as if I'd just had numbing shots at the dentist. I took Benadryl and it subsided,completely yesterday, but tonight I am still partially numb on my cheek/throat even several hours after the worst of the episode. But what concerns me even more is that this was so prominently left-sided. Has anyone else here who has a probable or confirmed MCAD diagnosis experienced a sidedness like this for numbness, or do you think I should be alarmed?

I realized belatedly that I should have gone to the hospital ER tonight so that I could get the tryptase blood test and other lab work my new allergist doc wants during or immediately after an acute attack, but I didn't have anyone who could drive me until a couple hours later and I wasn't up to driving myself. Also I had taken 3 doses of Benadryl plus 1 Atarax, and I wondered if that would screw up the test results, or is it OK to be on a large dose of antihistamines when you do the acute labs? I had forgotten to ask my doctor that.. For those of you who have had acute MCAD attacks and been fortunate enough to test the tryptase to find it elevated over baseline to confirm your diagnosis - how many hours after the attack started (or stopped) was it before you did the blood draw, and had you taken high dose antihistamines? Thanks for any insights you POTS/MCAD-ers can offer.

[juliegee]

Hi Carol-

YES, I meant to respond to this earlier. I also get the weird facial numbness- exactly like I had gotten a novocaine shot. The last time it happened to me was after trialing a BB (again- when will I learn?) for severe Reynauds. The bottom part of my face went numb- chin, then mouth, finally tongue, throat- that's when I realized it was anaphylaxis. This is a symptom common among sufferers, but rarely mentioned in the medical literature

As far as one-sided symptoms- my left arm, jaw, etc, used to get numb before I was DXed. My neurologist at the time called it a migraine aura. In retrospect, it was some sort of "allergic" reaction. With all of these weird symptoms, I have run to the mirror to smile more than once to be sure I'm not having a stroke. The fact that yours resolves with antihistamines is very telling.

Too bad about not getting blood work done- I have the same problem. I fall asleep (or am otherwise too out-of-it to drive) afterwards during the "magic hour" when the mediators are supposedly measurable. Apparently, antihistamines will not affect the test results.

Tell us about your appointment with the new allergist. Any luck???

Julie

[ramakentesh]

out of curiosity - can MCAD show up purely as increased POTS symptoms and very bad diaherra?

[juliegee]

Oh, I thought of one other thing to add. I know you will get things under control soon, but until you are feeling more stable, I thought I'd pass along some advice my Mayo-trained allergist gave to me when I was as symptomatic as you... and afraid to use my epi-pen. He would tell me to go to the the ER and sit there and watch TV, not sign in, just chill and observe whether or not my symptoms worsened or improved. I did it a few times, clutching my epi-pen, and I did feel reassured that I was at least WHERE I needed to be IF I had to use my epi and had a bad reaction to that. Kind of pathetic, I know, but helpful nonetheless.

The first time I had to use it was at home and my husband, thankfully, was with me. BTW, it stopped all symptoms

Feel better-

Julie

[juliegee]

Rama-

Yeah, the GI stuff, like "D" and even vomiting can occur with anaphylaxis. Sometimes THAT is the only symptom. Worsened POTS is suggestive of "chronic low-grade anaphylaxis." In a full-blown episode, for me, my tachy just goes crazy out of control until I almost lose consciousness, no matter what my posture. In other words, being supine doesn't stop it.

Have you tried a benadryl yet? Sometimes the way you respond to that helps figure out if it is an "allergic" reaction.

Julie

[POTSMama]

Julie, What's the longest your facial numbness lasted? I've had it for a lot of hours now, which is why I've been getting worried (yep, stroke crossed my mind, but it seems unlikely). Yes, I'm convinced this is anaphylaxis - - but when you have episodes as often as I am right now, you can't keep running to the ER every night, so I'm wondering what was your threshold, when you were very symptomatic, of how bad symptoms had to be before you went to the hospital when you hadn't used your epi-pen? I just don't know how to judge whether an episode is bad enough to go in or not.

One other question - - has anyone used Medrol (methylpredisolone) after a bad attack? My new doc (more on her later, but I think she is very knowledgeable and I'm hopeful she'll help) who I saw today gave me that and said along with my epi-pen and Benadryl, I should carry this with me to take after a bad attack for 4 days (reducing the dosage each day) to help stop rebound episodes. I haven't taken it tonight because I'm always scared to try new drugs but I probably should take this as maybe it will help with the numbness that is still there on my face?

[POTSMama]

Julie, I must think like your allergist, because when it happened yesterday (I was at work at the time), I drove with a work friend of mine to the parking lot of the ER that is nearby and we sat there to see if I really needed to check in or not. The episode passed so I didn't.

But now today all afternoon and evening I've had what seems like one long anaphylaxis-like episode with severity varying over time, and the numbness hasn't resolved tonight even though I've had (on top of the Atarax and Zantac) 6 doses of Benadryl (4 gel caps and 2 liquid doses, spread out of course). I'm kind of spooked that is hasn't stopped after all that antihistamine.

[juliegee]

Carol-

I am so sorry. I KNOW how scary this is. First of all, to reassure you, I had facial numbness for days/weeks before I realized what was going on. Don't worry about the length of time, but rather the severity of your symptoms. The one and only time I ever used my epi was when I had such severe tachy that I KNEW I was going to die. Right before lost consciousness, my husband stuck my thigh and all of my symptoms stopped. I also went to the ER one time when my throat persistently tightened and my eyes turned bright red. Curiously, they gave me a steroid shot and wanted me to follow up with my allergist the next day. And YES, I have taken steroids for allergic reactions. They were most definitely helpful in breaking the anaphylaxis loop.

It seems to me, like you are experiencing chronic low-grade anaphylaxis, that waxes and wanes throughout the day. I had this for years. Doxepin and very short term steroids broke that cycle for me. I really think you need to consider them... I want to hear about the new doc when you have a chance & feel well enough to post.

Try to relax. Stress will worsen mast cell degranulation. During the worst of my craziness, I did a lot of praying and meditating. It helps calm the mind.

Hugs-

Julie

[issie]

Yes, have the facial numbness too. Docs never know the answer for it. I do know that it happens when I'm having an allergic reaction.

The Mayo doc said that mast cells are not supposed to be in your blood and that's why they want to do the blood work within one hour of the attack happening so they can pick it up. He also told me to start an immediate void and 24 hour Urine test with the start of the episode. I have the RX in hand and the jug ready. Not had one bad enough to go yet. Also, he said that allergy meds. won't affect the test because the mast cells shouldn't be in your blood and if they are picked up - it's a positive.

Issie

[POTSMama]

Thanks, Julie. To distract myself from thinking about this reaction tonight, I'll give you a description of my doctor's appointment this morning. It went great. The allergist/immunologist I saw was personable and obviously very knowledgeable. She was surprisingly well versed in issues related to mast cell disorders and even the recent literature on it (including knowing all about the differentiaton of mastocytosis and MCAD), says she has a few other patients with either MCAD or mastocytosis, and was even familiar with POTS (had already read the Vanderbilt paper showing a link to MCAD). She even knows Dr. Castells and has consulted with her as needed in the past about some patients.

After reviewing my history, she said that my symptoms did seem consistent with a mast cell disorder, but she noted that it can be hard to get concrete evidence and she wants to make sure we do some blood work to rule out other hematologic disorders. She gave me a standing lab order for the next big reaction I have, to get tryptase, CBC with diff, ESR, 24 hour urine for N-methyl histamine and 11-beta-prostaglandin F2. I am also going into their lab on early next week to have blood drawn to check for mediators and to do genetic testing (KIT mutation)....They couldn't do the blood draw today as she said it is very important it be handled well and quickly to get accurate results. She seemed shocked to find out my current (now "former") allergist had only done the 5-HIAA and tryptase tests. So I think I'm in good hands finally!

As far as treatment, she commented that she wanted to get me off of the 8 Atarax a day since it's not giving me enough relief. But she wants to ease me off that onto a new drug regiment. First she wants me to try Singulair again to see if I really was reacting to it or not, then she wants me to try Allegra. If I have no reactions, those get added in the morning. She said if I can't tolerate one or both of those, she has some other ones to try next - to call her if it's not working. Then she wants me to take only 3 doses of Atarax during the day (instead of 4) and add Doxepin at bedtime (starting at 10 mg and easing up to 25 mg). I will also continue on Zantac 2x/day. She did not want to talk about a mast cell stabilizer yet, but I'll see what she says at our next appointment in a month. She also gave me the corticosteroid Medrol for short-term emergency steroid use (I would use a tapered dose for 4 days after a major attack). That's the thing I'm staring at tonight and wondering if I should start it now, but thinking I'll wait til morning in case I have a reaction to it. Hopefully it will nip this low-level anaphylaxis. Finally, she gave me information on what foods have high histamine content so should be avoided. This latter in contrast to the elimination diet my first allergist had put me on, which had some of the high-histamine foods in it! I am so glad to be changing doctors.

So I'm feeling more hopeful now that I have a new, better doctor, but this awful reaction I had shortly after coming back home (couldn't it have happened at the doctor's office) has made it a rough day. In any case, Julie, I ever so much appreciate your help and advice during this scary period. Yes, prayers and meditation are good - - I'll try not to stress too much!

[POTSMama]

Issie,

Well I'm sorry of course to hear that you have the facial numbness too, but at least I know that this symptom isn't unheard of. Tonight my facial numbness has evened out a little more on both sides and become less intense, so I'm going to take one more Benadryl and try to get some sleep.

Oh, and yes, I too have the jugs ready for the urinalysis n-methyl histamine (I need two jugs instead of one because I drink so many fluids in a 24 hour period). I simply spaced out doing it today when I had my bad reaction because I was in 'brain fog' mode badly. One more question - - is the"within an hour" of the beginning of the episode or the end? My episodes can wax and wane over a long period of time.

[juliegee]

Carol-

PLEASE tell me things are calming down. IF not, take a good look at when the numbness waxes and wanes and what you just ingested prior to the waxing. There's a strong chance that a food or med you are taking is causing this symptom. You know we can react to something that we were previously tolerating- at any time . I really hope things are letting up. I really do know how frightening this is for you.

Your doc sound FABULOUS, just perfect. I don't see any reason for you to have to travel. She's treating you very appropriately, is in touch with all the latest research, and researchers. What a gem. I really think that doxepin is what will turn things around for you. It is a super potent H-1. It made me feel VERY tired. I took it at night obviously, but the next day I still felt a little drugged up- a bit complacent. I didn't care, THAT was better than daily fighting for my life. It also made me gain weight. I was so hungry on it. I just wanted to warn you about all of that up front. You may have none of those negatives as you are switching from such a high dose of atarax.

As far as when to begin your urine testing- can't guess that it really matters as it's a 24 hour test and you are so symptomatic. You will most certainly catch a mediator IF it is there & processed properly.

I can't wait to see if any of the new meds will help. As you begin trialing them, let us know.

Hugs-

Julie

[Godsgal]

I too have gotten the numb face , throat, back, etc. Very disconcerting, I know! But it will go away with the right meds and avoiding the offending item.

[anaphylaxing]

I get symptoms similar to the ones you are describing. And often one sided. The right back of my throat. I don't think it ever fully unswells. Oh my gosh you doctor sounds FABULOUS! Hold on to her! Wow!!

[POTSMama]

Sorry to complain, but it hasn't abated yet and I'm still feeling very awful. Last night with a lot of Benadryl I was able to go to bed, and felt a bit better this morning, but not great so I went ahead and started the Medrol packet (tapered corticosteroid over 6 days). But even though I took the steroids this morning and at lunch, a couple of hours later I started having a fierce attack (light-headed, low BP/high HR, loud tinnitus in my ears, tight chest, that weird numbness in my WHOLE face, throat, and now upper back, and even for awhile my left foot!). I took 2 doses of liquid Benadryl and sat with epi-pen in lap (my new security blanket) until it started calming down, but even tonight I'm still having milder episodes of what seems like ongoing anaphylactic-like symptoms. This awful reaction just doesn't want to stop.

My husband and I have been discussing whether I should go to the ER to see if IV steroids, or epinephrine if needed, would stop this, but it starts to abate a little each time and so we decide against it, then it starts up again. I'm hoping the Medrol will kick in and help soon. I need to get past this as I have 3 little girls needing me, and besides, there's a snowstorm outside {Sigh}. So I'm telling myself that I can deal with this until it passes, doing my best to relax/not stress, and praying that this episode ends soon.

I've been trying to think what might be causing this and why it's lasted so long. Two of the three worst episodes were preceded a couple hours earlier (but not immediately) by my having eaten steamed broccoli, so I'm going to stop eating that just in case. But nothing else pops out as even a possible trigger because at the time this thing started I wasn't on any new meds yet (just taking the Atarax, Zantac, and Benadryl). The Medrol I started today has a corn starch filler, and I wondered about that, but of course the first two days of episodes were pre-Medrol. And I've been reacting more and more over time to non-food things too, like strong smells (I was reading the MCS thread with interest). I'm now down almost 20 lbs from my pre-illness weight, and still feel like there is so little I can eat. I can lost 10 more lbs but no more or I'll get too thin.

Although my new doctor wanted me to try Singulair and Allegra first (adding one per day in the morning) to see if I had a reaction, and then the 3rd day to add the Doxepin at night, I didn't start anything new today (other than the Medrol) due to feeling so badly since right after I saw the doc yesterday. Now I'm wondering if I shouldn't just add the Doxepin FIRST (since it worked so well for Julie), at bedtime tonight (I don't know if she had something in mind about that order of trying new meds, but she of course also didn't know I'd go home and start having a 2 day episode). Julie warned me about weight gain wiht Doxepin, but I'd rather be a fat and healthy person than a thin and sickly one. Has anyone ever had a reaction to Doxepin though? I started the 24 hour urine collection today after my bad afternoon episode so at least I'll get that.

Sorry this is so long and complaining. I just feel like such a burden to my family right now, and if I don't improve soon, I don't know how I'll make it to work this week, and I also need to drive down to the hospital to get my blood draw Monday or Tuesday. My next doctor appt is a month away as my doc wanted me to try the new meds out for awhile before seeing her again to see if they work. I sure hope I am better when that day comes... this is HARD.

[songcanary]

Carol,

Doxepin really stabilizes me. I am allergic to many meds and an unbelievable number of foods, and I have never had a reaction to it. It doesn't cause weight gain by itself; a side effect is increased appetite. That was good for me when I started it because I had lost way too much weight and it decreased my nausea so I could eat something.

I have not been diagnosed with MCAD but I still suspect I may have at least some component of it. Anyway, I just wanted you to know that it is a pretty innocuous med and I really hope it helps you. If I were in your shoes I would be tempted to try it before the others, too. I really don't think it would do any harm to try. However, I am not a doctor . Hang in there.

[POTSMama]

Thanks, Songcanary, that makes me feel better about trying it.

I have never been one to complain and whine before, so my long posts here lately simply speak to how bad I've been feeling with this probable MCAD, and getting desperate for relief. I believe this new doc I saw yesterday will help me, but I realize it's going to take time, and trial and error medications (I don't even like to take meds, but I've accepted that I'll have to now). Sometimes something that works well for others doesn't for me (for example, clonidine/catapress was a disaster for me when I tried it once briefly many years ago - - caused me to have near-fainting spells from too low of blood pressure), and I'm drug sensitive so always nervous trying anything new. But I haven't heard hyet of anyone having a problem with Doxepin, so that's comforting.

My symptoms have settled a little tonight (albeit not enough yet) so I'm hopeful.... But either tonight or tomorrow, I'm going to go ahead and try the Doxepin and see how it goes. I appreciate your post and encouragement!

[issie]

Carol,

Thanks for the words of encouragemnet. Sorry you are having such a rough time of it.

I couldn't use the doxepin - anything that messes with my brain chemicals messes me up. It is a tri-cyclic anti-depressant and second it helps with allergies. But, the first affect is in the brain. I couldn't wait for it to get out of my system. Everyone is different - but it wasn't good for me. Also, you could be having reactions to the allergy meds. I found that Benadryl gives me tremors and shakes. Also, it could be something as simple as a filler or a dye in pills. You can empty capsules - if there is color in the capsules. Taste are awful, but something to consider. I had a period and lost over 50 lbs. because of my allergies and reacting to everything. I started a food diary and kept track of everything - down even to a piece of gum and wrote down how things made me feel. I figured out allot of food sensitivities and could look back over the notes and see a pattern of headaches, reactions etc. with certain foods. Then, I cut those out and started a food rotation diary. You can eat as much of certain things on one day as you want, but can't eat that again for 4 days. That even narrowed things down more. I found that glutten, dairy and sugar were major things for me. Also, corn and soy. These things are in allot of capsules. I also started on really good probiotics and enzymes to digest my foods better. I think getting my gut ecology better was a big key to recovery from this horrible hole I was in.

Hope you are much better soon.

Issie

[songcanary]

Issie,

Those are great suggestions. I have been doing a food diary for many years and it's been very revealing and SO helpful. And it's true that we can be allergic to med fillers; I can only tolerate meds/vitamins that are hypoallergenic and it has taken a long time to find the right ones. Before I started food drops I did the rotation diet and it helped a lot; my allergist recommended it.

Carol, in the beginning it seems like an impossible task, but with time you'll find that you can settle into a medication and food routine that suits you. You are right, this IS hard so give yourself credit for scrapping away!

[POTSMama]

Issie,

What were your symptoms on Doxepin that made you think you were reacting to the med? Took my first one today because I am STILL a mess of flushing and blood pressure fluctuatons, and I took a lower dose even than I'm allowed. I'm waiting to see if I can tolerate it, but wondering what to look for since I'm already so symptomatic it's hard to tell.

Carol

[POTSMama]

What dose of Doxepin are you all on?

[juliegee]

Hi Carol-

Any benefits yet? It's been a while for me, but i think I was on 20 mg. Everything Issie said is correct, BUT doxepin is taken at MUCH higher dosages to have an antidepressant benefit.

I hope others chime in with their doxepin dosages. I THINK I was on 20mg, but it was years ago. I took it at night, but you may not feel the sedative effect because of the high dose of atarx that you are on.

Let is know if it is helping...

Julie

[songcanary]

Hi Carol,

I take 25 mg about an hour before bed. Fingers crossed for you .

[issie]

It keyed me up and made me want to jump out of my skin and I took less than what was prescribed. I'm super sensitive to meds. Hope it works for you - it works good for many.

Issie

[Serbo]

Issie - What do you eat now when you need a sugar fix? Have quickly realised that sugar is a trigger for me.