Sarah4444

Thanks, Lyn. I'd love to know what your impressions are once you have used it.

It happens to me too. I wonder if it's worse when things are going on that cause mast cell degranulation/vascular dilation due to mediator release (for me this would be things like heat, showering, stress, etc.). I do better now with midodrine and the MCAD meds, but the real test will be when it warms up and gets humid here too.

Jared, I'm sorry to hear this. I have had feelings of numbness/pins and needles on my face (especially upper cheeks) and my forearms and hands. I have no idea what causes it, but it was much worse when I was having the on-going low-grade anaphyalxis and not taking MCAD meds. In case it's an indication of anaphylaxis, have you tried taking 50 mg Benedryl to see if it gets better?

I agree with rama. But even though I am not in the US, Dr. Grubb was kind enough to recommend doctors where I live by email. I recommend reading the articles about POTS he has authored and co-authored - they are clearly written and his deep understanding and compassion come through. They are very useful to bring to other doctors who are willing to learn.

I just wanted to agree with the advice to start with very low doses of any SSRI/SNRI meds. Before POTS diagnosis I had some very odd reactions to "normal" doses of Celexa and Cymbalta - Celexa seemed to make my pain worse for some reason, and while Cymbalta helped with the pain, my POTS got extremely and rapidly worse.

rama, Is there anything we can do besides exercise to increase our NO levels?

I have dermatographism which has calmed down since I started MCAD meds. I am getting ready right now to travel out of town for a medical appointment, but I would recommend taking a look at the Mastocytosis Society Canada site (there is a thread there for people with POTS as well). On that site I posted an email interchange I had with Dr. Afrin - I think he is in Charleston? Many people with MCAD have dermatographism apparently. I also have anaphylactic/toid episodes which are very much helped by Benedryl. And many people (particularly women) with mast cell disorders are first misdiagnosed with anxiety disorders - see the article on MSC called "A Thousand Faces of Mastocytosis", about gender differences in diagnosis and treatment.

I worry about the idea that we are overly focussed on mild physical symptoms - I ignored mine for decades until I literally couldn't stand up, which didn't help me at all. A little more focus on POTS symptoms could have changed my life for the better if I had had a knowledgeable/helpful doctor. Also, I hope they realize there is a difference between "non-compliant" and unable to exercise. Until I started the meds I am taking I was unable to exercise, no matter how hard I tried. Now exercise is gradually helping, but without the meds and other measures (fluids, salt, etc.) I would still be sinking to the bottom of the pool (literally and metaphorically).

Thanks, Lyn. I would also be interested to know which light products you think are worth it. Like Julie, I noted that you have a lot of the symptoms of MCAD - I also have to avoid the detergent/fabric softener section of stores.

Thanks for posting this good news.

I have gotten goosebumps very easily for a long time, even before starting midodrine - it got worse as my POTS worsened. Just thinking of something interesting or upsetting, seeing vivid/distressing images, listening to music or reading poetry (anything that evokes a strong emotional response) would lead to goosebumps. I have attributed this to an over-sensitive/over-reactive sympathetic nervous system.

Hi Lyn- Welcome, and sorry to hear all you have been through. I am interested to read you use light therapy. I have been thinking about trying that (am up in Northern Canada - lots of winter). I have noticed I generally feel much better on sunny days and can't figure out if it's just psychological, or if there is something physiological about it. I am beginning to suspect the latter and many patients with mast cell disorders have also mentioned this. What kind of light do you use/for how long? Can you tell me how it helps you? Thanks! Sarah

I have also had episodes of tingling and numbness - particularly on my cheeks, lower arms and hands. I don't know why exactly, but it has improved. I think that Nalcrom is a pretty important med for me. Did you get to see Dr. Afrin?

Victoria - A woman I know up here just went to the NIH - she has mastocytosis (meets the WHO criteria). She says that doctors there don't yet recognize or treat the non-WHO criteria mast cell disorders like MCAD. Just FYI - Julie might know more about this.

Sarah, I searched on the site Vitamin C and it didn't come up for me. Where do I need to look to find it? Not real familiar with that site, yet. Maybe write a post and ask Carrie - I know she mentioned something to me about Vit C (and I think I stumbled across something there too). She is nice.

I'm old and don't faint either (three times in 26 years) - and I have hyperadrenergic POTS diagnosed by tilt table test. I know that many people have terrible trouble with the TTT, but mine wasn't too bad. I felt pretty crummy right after, but they gave me IV fluids which helped for days. I don't know how your being in a wheelchair would affect things - maybe they could ask the autonomic doc about that?

Yes, there do seem to be a growing number of people with some combination of EDS (or another HDCT), POTS (or other dysautonomia) and a mast cell problem. I am hoping doctors pick up on this soon, as it is far too unlikely to be random.

issie - I haven't had a chance to read about this yet, but apparently some people with mast cell disorders feel that Vitamin C has helped them improve their health a lot. I think there may be some posts/articles on the Mastocytosis Society Canada site about this.

I have this too. I have never been able to drink a lot, but used to enjoy a drink now and then. Now it's not even worth trying - I get flushed and feel terrible. Alcohol intolerance is almost universal in mast cell disorders from what I can gather. I think they mention it on the youtube video made by TMS. The worst things for me are red wine, beer and champagne - I can't even take a sip of the last two, and apparently they are both very high in histamine.

Please feel free to contact me, I'd be happy to help in any way in can.

I am also in Canada, and was seen in an autonomic lab in Hamilton, ON run by Dr. Carlos Morillo. He was recommended by Dr. Raj from Vanderbilt. Dr. Grubb also told me there is an autonomic doc in London, ON named Dr. Andrew Krahn. If either of these two was accessible to you, it might be easier for you to receive follow-up care.

Firewatcher - How much sodium are you consuming? Do you take supplements, and if so, which ones? I am running out of ideas re salty foods and getting sick of broth, but sodium capsules made me nauseous.

Naomi - Don't let them talk you out of it if you think you may have it. Even specialists don't seem to be familiar with MCAD and their condescending attitudes toward you could result in your not finding out solutions that could help. I started the Zantac/Zyrtec combo the day I had my TTT (I didn't want to mess up the results) and my positive response to even OTC doses suggested to me I was on the right track. I wouldn't be able to exercise at all (or even likely get out of bed) right now if I hadn't started those meds.

I have had episodes of severe itching for decades, and last summer it was pretty well constant. It is very commonly reported in people with mast cell disorders. If you get a small cut and it itches as it heals, apparently that is due to mast cells around the wound. I guess if you have excessive mast cell degranulation you can have itching without the wound. Mine is much better on MCAD meds, and when it breaks through, Benedryl helps.

I am finding that several patterns are beginning to emerge from the miserable chaos of this. I have a much worse time during the two weeks on either side of my period and am generally worse in the mornings. But I have also now noticed that during my better two weeks, I seem to alternate days - one day I feel better, can manage some exercise and light activity, or go to an appointment without feeling too horrid the whole time. But then the next day I am back to feeling really bad and everything is a struggle. Then, another better day and so on. Does anyone else experience this? Please tell me it's a stage on the way to more than seven tolerable days a month