Mcad Questions

[Sarah4444]

Hi everyone -

I have been reading the mast cell information people have suggested and I am wondering about some things - maybe you can help? I don't have a history of allergies with respiratory symptoms or asthma so I didn't think at first that the MCAD info would apply to me, but the more I read the more it sounds familiar. My maternal grandmother had dermatographia and died at 35 of Hodgkins disease, my mother has allergies and is very allergic to insect stings, and I have had lifelong trouble with skin reactions and itchiness to perfumes, synthetics, sunlight and many other triggers listed on the tmsforacure site. I also have skin reactions to latex and currently have about 95% of the symptoms listed on the site as being related to mast cell disorders.

Like many of you, I am having a hard time finding doctors who have heard of POTS or MCAD - I am finally seeing a dysautonomia doctor in October. Would he be the one to ask about MCAD or if not, what kind of doctor should I be looking for? Also, from the articles about POTS I have been reading it seems unclear whether they think MCAD causes POTS or is caused by it, and there is a lot of overlap between the symptoms. Some of my worst symptoms these days are OI, fatigue, brain fog and feeling unwell, nausea, diarrhea, bloating, neuralgia, headache and skin itching. Is it worth trying an H1 and H2 antagonist to see what happens? I currently take Midodrine, Metoprolol and Synthroid. What doses of H blockers do people take and when during the day, and how long does it take to notice a difference? Would those drugs affect the results of the TTT I am supposed to have in a couple of weeks? I have been trying to wait to try any new treatments, but have terrible insomnia and discomfort. I have been taking Benadryl for the skin itching but it only partially helps.

I'd really appreciate any insights or advice. Thanks so much in advance.

[juliegee]

Hi Sarah-

I'm certainly no expert, but I do have the MCAD DX and will try to answer your questions. Who is the doctor you are seeing in October? I ask because we are able to tell via research or anecdotal info on this forum which of the dysautonomia doc are making the MCAD connection. Dr. Grubb in Ohio (and his nurse practitioner) seem to be among them, as does Dr. Stewart in NY, and the docs at Vanderbilt were the first to publish studies connecting dysautonomia with MCAD.

From what I've learned, it appears that MCAD may be a cause of POTS. I went for a long period of time with what I call "low grade anaphylaxis." My HR was quite high (worse with postural changes), my BP was really low. My allergist described it by explaining that my blood vessels were "leaking out" in response to degranulating mast cells causing the low blood volume & subsequent autonomic stuff. As I got onto a good med regimen, my symptoms have dramatically improved. It took years to figure all of that out.

Your symptoms are pretty classic for a mast cell problem. Many docs are recommending H-1 and H-2 trials as they are OTC and quite benign. It'd be great to have a supportive local doc help you with this. A good place to start is a daily 10mg zyrtec and 150mg ranitidine in the AM, with a 25mg benadryl taken at bedtime.

If it helps, that will be very telling. Document your changes & meds with a daily journal as this is an important part of getting a DX. And if it helps, YES, I would guess that your TTT will be affected. You mat want to wait to start the H-1 and H-2 OR stop a few days before your TTT.

Best of luck sorting it all out. I feel your itchiness

Julie

[Sarah4444]

Hi Julie-

I am up in Canada, and I have an appointment with Dr. Carlos Morillo in Hamilton, Ontario. I got his name from Dr. Raj at Vanderbilt who was kind enough to help me by email with finding a doctor up here.

I agree that MCAD seems to be involved in my POTS. What is confusing is that the mast cell issues seem to run on my mother's side of the family, while joint dislocations/pain run on my dad's. I did read a couple of things, including an article by Dr. Raj on the NIH site, that explained that some doctors seem to feel that POTS might be triggering MCAD, or the other way around (or both?). I find this all so confusing and ironic - here I am with an IQ that plummets on a regular basis, trying to sort out all this technical medical stuff. It's like a sick joke or something.

Thanks for the med advice - I'll try to keep getting by with Benadryl for now and wait to start the others until after the TTT. I'm already worried that with the improvement I have from Midodrine and exercise that my body might not cooperate with the TTT and I might not get properly diagnosed.

[juliegee]

Hi Julie-

I am up in Canada, and I have an appointment with Dr. Carlos Morillo in Hamilton, Ontario. I got his name from Dr. Raj at Vanderbilt who was kind enough to help me by email with finding a doctor up here.

I agree that MCAD seems to be involved in my POTS. What is confusing is that the mast cell issues seem to run on my mother's side of the family, while joint dislocations/pain run on my dad's. I did read a couple of things, including an article by Dr. Raj on the NIH site, that explained that some doctors seem to feel that POTS might be triggering MCAD, or the other way around (or both?). I find this all so confusing and ironic - here I am with an IQ that plummets on a regular basis, trying to sort out all this technical medical stuff. It's like a sick joke or something.

Thanks for the med advice - I'll try to keep getting by with Benadryl for now and wait to start the others until after the TTT. I'm already worried that with the improvement I have from Midodrine and exercise that my body might not cooperate with the TTT and I might not get properly diagnosed.

I'd love a link to the study that you are describing. It's good that Dr. Raj (who gets the connection) has made the referral. I hope his colleague will too.

Weird about it coming from both sides of your family. The jury's out on how (or if) MCAD is familial. My Mom and maternal Grandmother get hives and have had idiopathic anaphylaxis- as have two of my brothers. All of us have autonomic issues. Dr. Marianna Castell's from Brigham & Womens (my masto doc) says she sees lots of families like mine. However, we are not described in published medical literature. I say your history strengthens your case for having MCAD.

I respect your decision to wait with meds. If you are like me, you'll (hopefully!) get good improvement from the MCAD regimen once you begin. Best of luck sorting it out. Keep us posted.

Julie

[Sarah4444]

Julie, here are the two articles that mention the link between POTS and MCAD and seem unclear about which comes first:

http://emedicine.medscape.com/article/902155-overview

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

If you don't mind, let me know what you think. Also can you tell me how long you took the H1 and H2 antagonists before you started to notice improvement? Thanks!

[cnm1]

I have thought that this is the basis for my D's POTS for a while. 6 months before she got sick, she started having random severe flushing episodes and gastointestinal problems. She is now living in the Boston area. She has an appt with Dr Castells in Feb. (FYI Dr Akins, formerly at U of Mich, is now in practice with her). Rachel already takes H1 and H2 antihistamines and is on a restricted diet. She was dx with food allergies/intolerances 3 years ago by a pediatric allergist/immunologist. It has really made a huge difference in her life. I am hoping Dr Castells can fine tune her meds and maybe add gastrocrom. I am so grateful that this site introduced me to this aspect of POTS.

Louise