Sarah4444

Alicia, I am still in the process of getting diagnosed - blood and urine testing for mediators as well as bone marrow biopsy. However, the medications I take help - the anti-histamines and Gastrocrom are for MCAD.

Janie, can I ask if there are any "tricks" that help you get to 10 mg? I currently take one 1g salt capsule with every meal and also salt my food and drink G2, but I find if I try to increase from there I get quite nauseous.

Hi Bren, I was also diagnosed by Dr. Morillo in Hamilton. I have Hyper POTS with alpha but not beta hypersensitivity apparently. I share many of the symptoms you report, especially the night episodes. I am going through the process of being diagnosed with MCAS (aka MCAD) and for me, the medications for this disorder have helped a lot, though I am left with significant and disabiling POTS. Beta blockers didn't help me, and they are not recommended if you have mast cell issues. I actually have an appointment with Dr. Morillo this week - I will let you know if I get any amazing new insights. Welcome here! Sarah

I have been sensitive to fragrances for years and also avoid them in my own home. I was at a wedding Saturday and the woman in front of me had tons of (awful) perfume on and I thought for sure I'd get a bad headache, but didn't. Reactions to fragrances and other chemicals are very common in people with mast cell disorders, and since I have been taking MCAD meds my reactions have decreased - just thought I'd let you know.

Both my parents have mild POTSy symptoms - my mother's were worse when she was younger (before menopause) and she has some MCAS symptoms. My father's is currently getting worse (he is the person with EDS-like symptoms).

There is an article on the EDNF site about swallowing difficulties being common in EDS, and when I attended a talk given by Dr. Afrin he said that MCAS patients often have trouble swallowing. I often choke on things (even water) and have trouble swallowing things like vitamins, etc.

I often get a metallic taste in my mouth, and it was especially bad last summer when I was very sick. When I got my epipen, under "Typical symptoms of anaphylaxis" they list "Metallic taste or itching in the mouth"; I found that interesting. I also get what I call "itchy teeth" sometimes.

I take a 1 g salt capsule with each meal (have to take them with food or I get too nauseous) and they do help me - not a cure all or anything, but it helps with the brain fog.

To be properly diagnosed with an HDCT like EDS you have to see a geneticist who really knows what they are talking about. I saw Dr. Francomano in Baltimore who told me there are over 200 HDCTs, of which EDS is only one.

I am much worse on the 7-10 days around the beginning of my period (usually about 5 days before and then the first few days).

For me, the rapid weight gain was accompanied by the onset of severe migraines and breast milk production, so I was given an MRI pretty quickly and within a short time they had found the pituitary tumor. However my endocrinologist feels it is a non-functioning tumor and my testing for Cushings was negative apparently.

I had a sudden, significant weight gain (30 lbs in about 6 weeks) in 2005 after lifelong stable low to normal weight. It seemed to coincide with an increase in MCAS symptoms, and I turned out to also have a pituitary microadenoma.

I have had similar symptoms to what you describe, and they have improved with MCAD treatment. It is very hard to diagnose, but that doesn't mean it shouldn't at least be attempted. Maybe go to www.tmsforacure.org and see if you can find a mast cell specialist you could get to?

Me too. For a long time last year I'd wake every night around 3:30 AM with a falling sensation, very fast tachycardia, severe malaise, sometimes itching a sudden diarrhea. Apparently histamine levels are highest at night. My nights are much better all around now that I take 20 mg doxepin before bed.

Mast cells are immune system cells that seem to be disordered in some POTS patients - see the article "Hyperadrenergic POTS in Mast Cell Activation Disorder" (Shibao et al, 2005). There is also more information available about mast cell disorders on www.tmsforacure.org and a youtube video in three parts made by Dr. Castells and a couple of others - search on youtube under "Mast Cell Activation".

I recently went to a talk given by Dr. Afrin, a mast cell doctor, and he said that solar radiation can cause mast cell degranulation.

I know what you mean about there being different kinds of fatigue with this. All I can say is that my worst fatigue turned out to be compounded by hypothyroidism that my endo treats based on symptoms, not just lab results. I am now not falling into exhaustion-comas, but still struggle daily with fatigue, weakness and low energy.

I had signs of MCAS even as a child - flushing, salt cravings, itching, collapsing in extreme heat. But in 1987 I was in a car accident, then a few months later got a mono-like? infection (that's what I was told at the time - I test positive for EBV antibodies, but so do most people by my age apparently). The POTS hit at the time of the virus and I missed much of my last year of high school, and have never really recovered since then.

I had severe, soaking night sweats in 2008-9. I have read this is a symptoms of MCAS. I don't have them right now (no idea why, they stopped even before I started on MCAS meds) but I have read that taking ibuprofen before bed helps some people with this. It might be worth a try, anyway.

I take Zyrtec as an H1 blocker (I believe Benedryl is also H1), and Zantac as an H2 blocker. Doxepin also works as an anti-histamine, but I am not sure if it's H1,2 or both.

Just to add to sugartwin's comment, I have similar reservations but for the opposite reason. I wasn't a floppy baby either, but I can relate to many of the symptoms she describes - for months I was unable to lie on my back, I had terrible pressure at the back of my skull, had a weird buzzing sound when I moved my eyes from side to side. All of these have resolved for me with MCAD/S treatment so I now wonder if they were related to mast cell dysfunction rather than pressure on my brain (or somehow if there was pressure, it was an MCAS symptom). I am left with OI, fatigue, pain...not sure what to think of all this.

No, there is no deadline set at this point - I will let people know if that changes. I have received many inquiries and about a dozen case reports so far (and others may have been sent directly to the genetics clinic) but I suspect this will be a long, slow process if it does go ahead at all. Hope you recover well and quickly.

I had really severe nausea until I started taking Zantac and Gastrocrom for MCAD. For me it's still hard to eat earlier in the day but I am hungrier and eat more as the day goes on. I wonder if she might be able to eat a high calorie smoothie or something in the evenings?

I'm feeling kind of crummy right now, but wanted to jump in with a few quick thoughts. I am so sorry for what you, your daughter and family are going through. I take 10 mg midodrine every four hours (5 mg in the evening) and it didn't really help me until I got to that dose - but I also have to take MCAD meds at the same time to address the reason my bp keeps falling. I didn't do well on Florinef - it seemed to cause an increase in my mast cell related symptoms. Now I take a 1 g salt capsule with every meal. I am far from "fixed" but doing much better than before. Sorry for the short reply - I wish I could fix her and all the kids going through this. It is NOT attention seeking behaviour (as you know) and when kids get the idea that this will even be suggested they start hiding their symptoms. Who can blame them. Keep fighting and we'll help any way we can. P.S. I just wanted to add that I also had the testing where they injected meds to see how I responded (and made me crash). It was pretty unpleasant and I couldn't even walk afterwards for a while, but they also gave me IV saline which seemed to help me bounce back to my normal crummy, and it didn't set me back. I was ok not staying overnight, but definitely needed someone there to wheel me to the car and help me in afterwards.

My starting point on this issue was reading the article "Hyperadrenergic POTS in Mast Cell Activation Disorder" (Shibao et al, 2005). They noted that some people with hyper POTS also have flushing, and measured urine methylhistamine to classify some as having MCAD. In the article, they point out that it's not clear whether the excessive activity of the sympathetic nervous system in POTS is causing the mast cell disorder or the other way around, but it seems to be some kind of vicious cycle. Mast cell disorders are an emerging and controversial topic I have found. You can read about them at www.tmsforacure.org and see if the symptoms seem to fit you. In MCAD (also called MCAS now) they think that a genetic mutation of mast cells causes them to fall apart more easily than they should, in response to a whole variety of "triggers" (stress, chemicals, alcohol...see list of triggers on tms). It seems that having MCAD either causes some of us to develop POTS (or the other way around) or somehow the two occur together. Some of us find that we also have hereditary connective tissue disorders like EDS. There is a good youtube video made by Dr. Castells and some other docs you may want to watch - look up "Mast Cell Activation" and it is in three parts. I also really like the recent article written by Dr. Molderings and Dr. Afrin about identifying and treating MCAS. Hope this helps. It's complicated and I am not an expert, just learning myself.