Boy, I do NOT want to be a part of this group.  I was sure that I was way off when I got a negative tryptase test a few years ago.  I searched other avenues with few answers.

Anyway, my symptoms:  10-12 years ago I started to have panic attacks.  I had horrible reactions to the anti-depressants and anti-anxiety medicines they tried on me.  I started to flush from wine and have heart arrythmias after certain foods.  A cardiologist diagnosed my issues as mitral valve prolapse and put me on a beta-blocker called lopresser.  It worked against the panic and arrhthmias for a few years.  

Then my husband and I were blessed with a child.  During my pregnancy, I had horrible heart arrythmias and tachycardia and low BP.  I had further flushing with foods and discovered that my biggest issues were with sulfites.  Post-partum, I had severe drops in BP and woke up gasping for air the first week after my son was born.  I seemed to balance out within 6 months but still avoided wine and sulfited foods.

Despite the nightmare pregnancy, we decided to get pregnant again.  The result was two miscarriages.  Following the second miscarriage, I started having problems breathing - asthma-like symptoms.  Never had asthma.  I didn't want an inhaler because I knew they contained sulfates.

A couple of months after the 2nd miscarriage, I started feeling faint all the time.  I've been a ballet dancer/teacher for years.  One week I was turning and leaping across the floor.  The next I could barely crawl.  After a bizarre tilt table test, I was diagnosed with POTS.  It took MONTHS to recover but I started to go into a remission.  I got myself off of the beta blocker, too.

Then the following summer I started up with breathing problems again and sensitivities to scents.  Soon the POTS came back.  Then I started having not heart burn but a drying, burning sensation in my esophagus.  I had a severe breathing/POTS episode after eating some chicken noodle soup and vacuuming out an old, fake Christmas tree.  My BP dropped to 83/55 with tachy.  But my oxygen level remained normal despite the struggle.  The hospital kept me for a few days.  

I had an upper barium GI and a gastric emptying test.  Both came back normal although I was a "little slow" on the emptying test.

Then I started having problems with my neck and swallowing.  It sometimes felt like I was being choked.  My hyoid bone was often subluxing.  This was made worse by a bad chiropractic adjustment.  Sooo... back to the hospital!

I had a neck and chest CT and reacted horribly to the dye.  I also had brain and neck MRI.  For the most part, the tests came back normal although they said the the veins/arterties in my neck had "tortuosity" and looked like those of an 80-year old woman.  Hmmm...

I've seen Dr. Blair Grubb for the POTS.  I was diagnosed with Ehlers Danlos type III by his nurse practitioner.  I saw Dr. Brad Tinkle in Cincinnati to confirm the diagnosis.  I also saw a spine surgeon in Cinci who wanted me to get a cervical spine fusion of my C1, C2 vertabrae to my skull because of cervical cranial instability.  I said no thank you because I wasn't getting headaches and had no tingling my extremeties.

Present time:  POTS symtpoms weren't too bad for a while.  I actually started driving for the first time in years last November.  I was able to do Christmas shopping and that was cool.  But... I've stopped driving again.  I still have problems swallowing.  I still have problems breathing.  I live in a bubble and now I don't just wear a mask when I leave the house but also to cook in the kitchen.  I can't be around my little boy's bubble bath.  I have problems speaking because the muscles around my vocal chords feel like they're collapsing.  I've lost weight and I'm anemic (hemo: 8.6) and vitamin D deficient (10).  

I've dropped gluten, sulfites, sulfates, and most salicylates from my diet.  I'm trying to maintain a low-histamine diet.  Funny, my doctor told me to increase my spinach intake for the anemia and I started feeling faint all the time again so I had to take that out.

I just really started the protocol for mast cell:  (baby doses)  75 mg Zantac in the a.m., 30 mg Allegra in a.m. and p.m., 10 mg omeprozole in the p.m.  If I try to double the Zantac, I feel like I'm swelling up inside.  I can sometimes add to the omeprozole but it has to be throughout the day and not right next to another dose.  I think I'm ready to increase the Allegra as I think it's helping a little.  But I also notice that I can't go off of it because the symptoms are worse than ever.  It's like, I got myself on something that I'll never be able to go off of.  And I know there are more drugs in my future.  I'm interested in gastrocrom and ketotifen.

I don't have a masto doctor.  I have a very kind, local allergist who isn't quite on board because I had a "negative tryptase test."  I saw a woman at Univ of Michigan who called me a princess (not joking) and stated that I was being dramatic because I'm a dancer.

Thanks for adding me on!

Welcome but so sorry you are here!

I can definitely relate to many of your symptoms.  Joan gave great advice, as always. It is good that some of the antihistamines are helping and maybe more will start to help.

I am also mostly confined to my room or fresh air due to scents and have MCAS, POTS, and EDS III.  I think you should really try to get into see one of the experts, or if you can't, if your allergist is receptive, perhaps he would be willing to correspond with them and  help you remotely.

I am in the battling for stability phase also, but everyone on here is very encouraging with lots of great tips. Many have regained their lives.

I used to teach dancing, too, so can relate to missing that desperately. Such great exercise and interaction with children. Hopefully we will both get back to it!

Does anyone know if there's still a mast cell doctor at U. of Michigan?  Cleveland?

Hi Mommydancer!!

Sorry to hear how hard it´s been for you, but I´d really like to give you some HOPE.  

So many of us have these issues.  I came out of a hysterectomy with such a totally different body that I joked with my gyno he had played Frankenstein with me and changed my body for some wreck of a hulk!  I was no longer able to sing, or to stand for any length of time, or walk any distance and I was reacting all over the place to everything, it was awful!  I had no clue as to what was happening and it took us 2 full years for us to realize I had Orthostatic Hypertension but that was only after I went into a hypertensive crisis in my angiologist´s office just cause I had to stand waiting for paper work.  My doctor is one cool cat but I could tell by her reaction that she was freaked!  My pressure hit 220/110 and I gave her a real run for her money that day.

Yet I continued confronting issues with standing cause my meds were not up to the right levels.  It was only after Dr. Castells adjusted them for me and I was at a good amount for my needs that the POTs came under control and I felt like I'd regained some energy and strength.    

I really wish there were someone to send you to closer, but unfortunately there isn't.   You're correct about Dr. Leonard and his son.  Father was the expert, but his son isn't quite like his dad on masto.  He knows SM and can diagnose it and he even treats a patient or two here on the site, but if you're an MCAS patient with a normal tryptase, then he most likely will not recognize you as a masto patient, not yet anyway.  Cleveland Clinic is an excellent hospital, but not for masto, unfortunately.  I've heard too many patients complain about it and the Mayo clinic especially if you are not a classic SM patient.

I very honestly think that Ana has given you excellent advice.  She was in your very spot and realized that the driving was much more stressful than flying.  With her pre-medicating and having a wheelchair made available for all the in between steps, she did the very best choice for getting some answers.  

I know you want your life back and it's a very valid desire.  I honestly think that you should reconsider going to Boston and flying to get there with the premedication in order to do so.  I think that you would find it well worth the investment for you would get the answers you are needing with a treatment which will help you get much better quicker.

I hope this helps.


Lisa

Words of wisdom!  Ana, I miss the dancing and working with the kids.  I still do a little ballet barre in my room to keep my muscles from atrophy but if I raise my heart rate even the slightest, I get short of breath.  So sad.  Part of my body can still dance, part of it won't let me.

Regarding flying, it's not just the close quarters and the recycled air and the perfumes, colognes, fabric softeners, shampoos, blah, blah, blah.  I haven't flown since 1996 and swore that I never would again.  We would HAVE to drive but I'll have to become a little more stable on meds AND find more food that I could take with me.  I may have to just live on brown rice for a week.  Yuck.

Anyway, thank you for making me feel welcome.  I started with a GI issue post and will have lots more questions to come!

Sorry to hear about the flying. Is it dysautonomia related? What happens?

I didn't like flying much even when healthy, but now it's terrifying.

I know what you mean! I used to break into dance randomly throughout the day or use dance to get from one part of the house to another, practice steps while cooking etc, but my body's failing me now and I can't even trust it to do that...yet. Hopefully soon.

Welcome to the forum, Linda!

I hope your daughter is doing better!  You've had a long ordeal.  So glad Dr. Afrin has helped.  Is there anything besides the H1 and H2 blockers that has helped her GI system?