Some of you know me from other groups/forums, but this is my first post here.  I am a married 52 year old mom of 3 girls aged 9 to 12  (one a late life miracle pregnancy and 2 adopted from China).  I had been diagnosed previously with hyperadrenergia and POTS (a dysautonomia) but managed to be reasonably asymptomatic for years mainly with fluids and avoiding triggers (like too many glasses of wine or lack of sleep).  Then 2 months ago I had an anaphylactic reaction to an antibiotic, which was shortly followed by milder but clear reactions to other meds and foods that grew worse each week until I couldn't eat hardly anything  (I've lost 20 lbs so am at my ideal weight   but I don't want to lose more), and then recently to strong smells (gasoline fumes, perfume).  My PCP and local allergist started thinking MCAD when I tested negative to the foods I was reacting to, although I did show a slightly elevated overall IGe.  

This illness has turned my life upside down and I am really getting depressed and worried.    I need to get stable but I keep getting worse and had to take part-time leave from my job (I'm lucky in that I can work part-time at home, or at least my bosses are letting me do so for now - - but they certainly won't let me do this forever), and I'm having a hard time keeping up with my kids' activities and everything else.  My husband travels some for his job and I don't have other support, so I need to be well enough to take my kids to/from school, etc.  I am a former college professor in an unrelated field, so of course I've gone to the internet and researched everything I can about this, but still I have many questions.  Hoping someone here can help ...  Here's my testing and meds history:

Local allergist I first went to didn't know much about MCAD so did minimal testing (I showed a negative tryptase of 4.2 [normal by the lab's norms] but was non-symptomatic at the time, and he ruled out carcinoid with a 5 hour urine 5-HIAA.  I had the 24 hour urine test that ruled out pheochromocytoma years ago when my tachycardia began), and I don't think he took me seriously, frequently asking me about my "anxiety level" (who wouldn't be anxious when their happy life is suddenly a mess? But no, I don't think I'm excessively anxious.  Grrr    ).  Over 6-7 weeks he put me on H1 and H2 antihistamines (increasing amounts due to increasing symptoms) and had me spray my throat with Nasalcrom or gargle with liquid Benadryl since I was having such nasty throat symptoms (irritated, red, felt like gunk accumulating in my throat and trouble swallowing).  As of last week he had me on eight 25 mg Atarax (hydroxyzine) per day and three to four 25 mg Benadryl (dye free caps or liquid) as needed for acute symptoms, and two 150-mg Zantac per day.  He had me try Singulair, but the two times I took it I had a bad reaction shortly after so quit.  

Last Friday I FINALLY (had been on the waiting list) got into National Jewish Hospital's allergy and immunology department (we live in Colorado) and saw a doc that a nurse friend of mine recommended (Dr. Tho Truong; I would have seen Dr. Richard Weber but he's out for at least 2 months with a broken leg, but she says she consults with him closely anyway - - anyone on here had experience with Dr. Truong?).  I liked her and found her knowledgeable.  She said she knew Dr. Castells and was reasonably familiar with MCAD and POTS.  She acted shocked that my first allergist hadn't done more testing and ordered a ton of tests, which I'm awaiting results of.  These included a tryptase and 24 hour urine (n-methyl-histamine and prostaglandins) while episodic (I had a good episode over the weekend and Monday so got those, some hematology tests (not sure what ones or why), genetic test for the C-KIT mutation, and some other miscellany blood work and testing of my vitamin D levels (since last time my regular doc checked my level was practically nonexistent).  I am awaiting results and have an appointment to see her again in 3 weeks.

Meanwhile she thinks I may have been taking too much Atarax and Benadryl, since she said they're both first generation H1s that can cause anticholinergic effects or "rebound" (anyone know what she meant by the latter?) so wanted me to substitute 10 to 25 mg doxepin for the last Atarax dose and also to try adding Singulair again and Allegra.  She said try one at a time.  I am scared of the Singulair since I think I reacted when I tried it before, but I'll try again one more time if I can't find something else that works.  I started with the doxepin last weekend, and after 3 doses (10-15 mg) had to stop as it was a very clear negative reaction - - although others say it makes them sleepy, it made me very hyperactive and jittery and an insomniac - - plus it made me have loud tinnitus and tachycardia.  New doc also gave me a tapered steroid pack (Medrol) but I also couldn't tolerate that longer than 1 1/2 days - - might have been the corn filler I reacted to.  So now I'm taking 6 Atarax a day still (trying to cut back from the 8, and so far hasn't made any difference as far as I can tell), a few doses of Benadryl only if needed for a bad episode, and new doc said take 3 Zantac/day (instead of 2), while staring at the Allegra bottle but afraid to try it before my husband is home from work.  Despite all these antihistamines in my system, I am still symptomatic. Sigh.

My symptoms before the antihistamines included hot flushing, hives, itchy scalp, blood pressure and pulse volatility, and occasional episodes of urgent liquid diarrhea. (I've never had the bone pain sometimes mentioned here, nor vomiting or stomach pain). Now my episodes (several times a day) are flushing hot/cold - -but most often ice cold all over with pale rather than red face [although my cheeks went bright pink when I was on the Medrol/doxepin], and blood pressure and pulse volatility with some diarrhea, but no more hives and only infrequent scalp itching.  But I also have new and alarming symptoms this past week: numbness that starts in my face and throat and spreads to my upper back, arms, and toes.  Sometimes this is more one-sided, and sometimes it includes my tongue.  And sometimes my body temperature registers too low.  I am not, however, having as bad of the irritated throat problem as I was before, so something is better there.  Anyway,  I take Benadryl to stop attacks and the numbness slowly goes away after a time and the blood pressure normalizes and I feel warm again  (and yes, the doc gave me an Epi-pen but I haven't had recourse to use it yet).  If this was anticholinergic syndrome, I should be hot and red, not cold and pale, right? Could this be low level anaphylaxis that I'm still having?  I react so often and to so many things that I can't tie it to particular foods or meds or something else - - I'm ONLY eating chicken, steamed vegetables, and rice right now anyway - - and sometimes I seem to react to nothing!  I am keeping a log and hoping I see a pattern soon.  

My new doc said she will talk to me about mast cell stabilizers "later" (presumably because she hasn't finished testing).  I asked her if she'd consult with Dr. Castells and she said that at this point she would just give us a list of tests to do anyway and we are already doing those.  So that's where I am with this crazy disorder.  I welcome and appreciate any thoughts and suggestions -- I seem to be on my own with medicine trials and mixing until I see the new doc again in 3 weeks.
P.S. Thanks for reading through if you made it this far! Sorry so long.
Carol

Poor Carol! Yes I know you already.

If it was anticholinergic syndrome you shouldn't be cold. Mack's mom and some others refer to their symptoms as low level anaphylaxis. I know what they mean.

I found I was reacting to chicken and rice. I started eating in front of a mirror to watch for flushing.  

I think your doc is prob right about the testing but I'm not convinced the experts would wait to try treating you with a mast cell stabilizer. It was the first thing they told me to do. I'd still try to get in touch with them.

You need to lay low and try not to stress (impossible) as much as you can as it makes your trigger threshold lower.  Once I upped my steroids and got on all my meds I was slowly able to discern triggers because there'd be brief reprieve. But still sometimes I seemingly react to nothing and my POTS is constant. But it was a frantic mess for five months.

I'm doing an elimination/low histamine diet to see if it helps.

There are lots on here with way more experience than me who will pipe in I'm sure.

I'm so sorry that you're still having trouble. I too have not been able to go back to the work I loved since this started and have found it to be extremely devastating on many levels, BUT I am better than I was a few months ago and am starting to feel more comfortable with when to take meds etc as I'm sure you will be too once you get a bit of stability in your medications and plan


Thinking of you!

Ana

Carol

I had severe temp swings and fluctuations for the longest time which are now slightly less frequent but still debilitating. My GP was the one to prescribe my meds in consultation with an allergist. I started on Cromolyn 200 mg QID, but a lot start lower and increase slowly. I started on ketotifen 1 mg BID, then upped to 2 mg BID after three days--it causes sedation for some people so they start low. But you need a doc to be supervising you if you start that. I hope your doc will call the allergist and maybe they will want to call someone higher up.

As far as I know ketotifen is not available in US but if you have an Rx you can order it. I think somewhere on the site it has links to pharmacies that you can order it through. They are $$$$ so coverage would be great.

I didn't know if my temp changes were adrenal insuff or MCAS but I'm at a lower steroid dose and they're still around.

Obviously there's a huge list of things that could be causing temp swings (have you checked your temp? are you ever febrile? If so you need to go on an infection hunt). Is it persisting despite your cutting back on H1 blockers in case it was anticholinergic?  It's definitely suspicious that it might be part of your reactivity....though you need to work it out with your doc

My temp swings all over the place when I measure it. I kept having to stress dose because we thought I had a fever, but I've been tracking it for months now and it just goes nuts. Usually higher when I'm reacting the most. And we've ruled out all sources of infection

My POTS seems to have two settings so far HORRIBLE--like heart racing can't get out of bed which is usually at the same time as a bad reactivity flare or LOW GRADE where I'm at now. Still weak and fit criteria but nowhere near as debilitating. I find it hard to know when to blame dysautonomia and when the mast cells and how much is a combo of both!

I think narrowing down your food is a good idea. Everyone is different with triggers. Right now what's safe for me is sweet potatoe, steamed broccoli and organic steak, and oatmeal but it's been changing off and on, rice was safe for a time.

For many gluten is a trigger. I don't know if it is for me or not yet, but if it is for you, it can be really hard to find gluten free oats.

Have you checked out the low histamine diet on the urticaria society website? People on this forum told me about it (http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm)

I'm way more restricted at the moment than that diet but hoping to advance little by little when things are semi stable.

Deborah (who started this forum) has great diet advice about how she overcomes flares. So she'll probably pipe in too

I haven't reintroduced eggs yet.

Hang in there Carol! You're motivated attitude will get you through this

Ana

I'm 8 months in Carol. I've had two really bad episodes. One right at the beginning and one 4 months ago. Apart from those with the meds and proper star alignment I'm more of a controlled mess like I mentioned before. I kept thinking it would all STOP, but I'm getting the sense it's a life battle.  It's good you're thinking about food triggers this early, as it took me awhile to sort that out. Also when I was on high dose steroids all foods were ok I think; it's as I'm tapering that I'm getting a chance to look for triggers.

I haven't applied for disability; I'm in the same mindset as you. I'm trying to figure out components of my job that I can do from home, but I'm not even sure I have any disability insurance anyway. Some on the forum have applied there's a post about it. I keep hoping I'll go back,

I think it is KEY to get a mast cell expert involved for the preservation of as much health as possible. Don't be bashful beg your docs if you have to. Or, find a new one who is more receptive. you likely haven't found the right balance of meds and trigger avoidance.

Sorry about the oatmeal!! Oh no! Yes stay away. Go with whatever works!

Hopefully soon you'll be a controlled mess like me, then we'll both get more stability like others on the forum

I'm far from an expert on all this, so won't comment. However, I did want to tell you that ketotifen IS available in the US as a compounded medication. I get mine from Clark's Pharmacy in Bellevue, WA. The pharmacist is great, and very helpful. It may not be covered by your insurance, unless they cover compounded meds. Mine is about $65 for a month's supply of 2 mg capsules 3 times a day. Once I knew I was good with it, I have them send 3 months supply, which saves a little on shipping.

Gastrocrom can be pricey, so it may cost as much with insurance copays, but it depends on your insurance.

Clark's Pharmacy
Bellevue, WA
1-800-480-3432

I agree with Lisa. It is extremely important to never assume whether a certain symptom, but especially a new one, is caused all by one condition. It is possible that it is, but it is also possible something else is going on that needs to be looked into. Neither answer is always right! Certainly you must take care of each issue in whatever way is required to manage it.

And yes, you can get lots of help here!

Lisa and all,
You were so right - - now that I've been on more meds and for a longer time, it is actually quite striking how little the POTS symptoms have bothered me... they are much less most of the time (not to say that I don't have an occasional episode of tachycardia or blood pressure volatility, but it's less volatile and less often).  The MCAD symptoms are a little better too (smells have become less likely to trigger me badly and I'm not flushing hot like before), but eating enough variety is still a major problem for me, as well as episodes of blood pressure and temp dropping and chills/cold skin.  I went back to the office 4 of 5 days last week, although only for 1/2 days, but it's a start, and I am able to work home the rest of the time (Full time for my current job is 32 hours/week).  

My kids, husband, and I are relieved that we've been able to quit calling the ambulance every few days and staring at the Epi-Pen!  As it seems even my bad episodes will pass enough after about 1/2 hour or so if I take liquid Benadryl.  So while I'm still sick and limited in what I can do, I am enough better that I am feeling hopeful (most days; admittedly still panicked and down about this some days) that I will reach relative stability at some point and be able to lead a more normal life.  I am more comfortable driving and going places and doing things than I was after this started, although I fatigue easily and have taken to carrying a shoulder bag with my meds, water bottle, blood pressure device, printout of mast cell disorder emergency procedures, and Epi-Pen inside - - I just don't feel safe without that with me.

Since I last posted, I have managed to get on both Allegra and Singulair (for some reason, the Singulair didn't bother me like it did the first time I tried it), and I think that has helped a lot.  I'm down to only 5 or 6 Atarax a day on top of those, and Benadryl as my rescue medicine if I have a really bad food or smell reaction (or sometimes I react for no apparent reason).  However, I am still eating a very limited palate - - chicken, cream of rice cereal with rice milk and maple syrup (but I can't do brown rice things now), broccoli, cauliflower, carrots, sweet potato, and gluten-free oat-based granola cereal with rick milk.  That's basically it  for now - -   very boring, and not very nutritious so I'm taking vitamins and minerals too.  I have tried new foods but when I do, so far I have chills/flushing/throat irritation and a feeling like throat closing, lightheadedness, and sometimes BP drops.  So far I've reacted badly to white potato, apples, banana, pears, canaloupe, beef, lima beans, and cottage cheese.  I am just feeling adventurous enough this weekend to try some more foods or perhaps try some of those again in case they weren't the source for the reaction or maybe I'm getting less reactive these days and can handle more.

I also will try doxepin again this weekend.  Since I reacted to the Singulair the first time and not when I tried again last week, I'm hoping the same will be true of the doxepin.  Still haven't seen my allergist again - - appointment's a week away - - but will talk to her about ketotifen or Gastrocom at that time, with the hope that one or the other will help me be able to handle more foods.  So that's my update - - sorry so long-winded!  I'm grateful to everyone here for their support, and I'm sure I'll be back with more questions soon!
Carol

Hi Carol,

That's such good news that things are starting to turn around!  You're doing the right things, trying to adjust your meds and limiting your diet to what you can tolerate.  This all takes a while, which is frustrating, but you've done well in a relatively short period of time.

Have you tried Zyrtec?  It's related to Atarax but has fewer side effects.  If you want to try it, there's a liquid for children.  Begin with a very small dose mixed in a good amount of water.  Of course run any medicine change by your doctor if you're not sure about it.

Some people have disability insurance through their jobs, but most people get it through Social Security.  If you have enough credits and a diagnosis, you might be eligible.  They usually turn people down the first time unless you have a diagnosis that's on their primary list.

Glad to hear things are progressing!

Hi Carol,
Im am so sorry this is so rough on you with little support. Most of us have tachycardia--the experts dont know why but I am better with my 2 daily doses of allegra.. you do need to stay away from beta blockers and that is usually the first thing DRs reach for with tachycardia.

I love the fact that your new DR ordered all the right tests.. Bravo for that.

We ALL start this 'journey to get better', as a hot mess LOL.. and sometimes we find ourselves there again BUT.,, it gets easier to pull ourselves up--to know what to do when we dont feel right. Thats why we are here, to help you learn so that you control your life and dont need us (but still come by to say HI!)

Be careful of vitamins and minerals--Many of us react to sulfites and fish oils (containing Iodine).

Try to get your diagnosis from a DR (specialist) before applying for Disability--that will make a HUGE difference, they will approve you much quicker then.

I would tell you too, time for you to keep a Food/Activity/Meds/How you feel Diary. This will help you see patterns and know when to increase your meds--it will help your DR too, to understand what you are experiencing.

You have gotten some GREAT advice from people here. We have your back, Hon.. You will never be alone with this anymore!
Hugs
Ramona

PS Ana,
Im really impressed, you give excellent advice