potsmomma

Thanks Julie for posting that link. I want to go back and listen to some of those presentations from the conference. I have noticed that my pain levels have improved lately as well. I'm sure my H1 and H2 meds are helping with that but I also started taking Magnesium Calm before bed every night with Miralax in warm water and it is really helping me a lot with muscle pain, GI motility, and hr/bp variations. So thanks for that tip on the magnesium. My serum magnesium has been high before so I didn't think it would help me but it definitely has. I think a lot of my pain comes from slow GI motility and toxins building up inside of me and GERD causing severe pain in my neck and shoulder blades. Anyway like you said, what helps for one of us doesn't always help others but I am certainly more open lately to trying different things Issie, just a thought but your pain might be more from the Mast cell issue than it is from the EDS. I have an EDS diagnosis but I am getting more convinced that the mast cells are causing more of my problems. I couldn't tolerate Claritin because it made my tachycardia worse. Maybe you need to try another H1. I do much better with Allegra. I can't believe how many antihistamines I take and I am less tired and less dry with them than i am without. Carol, Nasalcrom is a mast cell stabilizer (cromolyn sodium) in a nasal spray. You can get it at most drug stores. That has helped my throat irritation because it drains down my throat after I spray it into my nose. Maybe something you might want to try. Heather

Rachel, good idea! I would come. I am in the Atlanta area so I don't need to travel. Weekends or evenings are best for me! THanks!

Maiysa, Julie explained that very well. What is your actual tryptase level? I know a lot people who have been diagnosed with Mast cell disorders who have tryptase as low as 3. Mine is 4.6 and I have a diagnosis of mast cell activation sydrome. What many doctors consider abnormal is a tryptase above 20...but that seems to be outdated information and usually only applies when considering mastocytosis.

Issie. That's crazy about the nitroglycerin helping you:. They gave me that to put under my tongue during my TTT and my heart rate skyrocketed, bp dropped nd I shook uncontrollably. So interesting, our different reactions. Heather

Hi Julie, I'm really sorry to hear about your mother-in-law. I hope you are all hanging in there. I know stress can do a number on our symptoms. My son has celiac and was diagnosed at 2 years old...crazy high antibody levels and GI damage. When I took him off gluten he would stand in the kitchen and cry and say he was hungry for days. He was eating constantly but never satisfied. It was heartbreaking. I would go in his room at night and the room would stink and I would think he had a dirty diaper but he was actually covered in sweat and his sweat stunk like poop. This went on for several weeks, it was truly like he was detoxing. Finally after about a month things turned around. He has gained about 5 pounds in the last six months and is a very different child with so much more energy and enthusiasm! I was tested but was negative - both antibodies and scopes. I am trying GF now myself to see if it makes a difference. My mast cell meds aren't helping my GI/slow motility issues yet. Have you tried Gastrocom? I wonder if that would help you? I hope to try that or Ketotifen next.

I got shingles on the left side of my chest and back in january 2009. I had just come back from doing autonomic testing at the Cleveland Clinic for POTS and found out I had strep throat. A week later, I woke up with shingles. I was soaking my bed with sweat every night, could barely wear a shirt, in alot of pain. It was awful. I have since been diagnosed with mast cell activation syndrome and while my hematologist said a lot of people get shingles, he said the combo of all of these things blasting my immune system probably brought them out. I also had terrible chicken pox as a kid...my mom said they were in every nook and cranny of my little body.

Hi Bren, sorry you're having a hard time. I take one 180mg Allegra in the am with 150mg-300mg Zantac. Then I take the 10mg Zyrtec at night with a 150 mg-300mg Zantac and the Singulair. I think you are doing the right thing by adding one at a time as by the nature of mature cell disease, we are all really sensitive to medications. My mast cell doctor says that any time you start a new drug, you need to give it a few days/weeks because it will get things stirred up before it starts helping. If you're still having a hard time, than that might not be a drug for you and you need to try another. He actually had me try Claritin and Pepcid first because they have the least number of drug interactions but those didn't work for me. Hope that helps a little!

Cleveland Clinic has an autonomic center which is where I went. I thought it was pretty good - I saw Dr. Jaeger and a female doctor but can't remember her name. I have also heard that Dr. Robert Shields (neurologist) at CCI is good. CCI did a good amount of testing but I don't know that I truly learned anymore than I already knew. However, I would highly recommend you see Dr. Grubb in Toledo. Everyone that sees him loves him and he is learning about MCAD so he would be helpful on that front. I have Ehlers Danlos and spent a full year after my trip to Cleveland Clinic getting diagnosed. Dr. Grubb probably could have done it within the first five minutes of my appointment. Good luck. I know it is VERY hard to live with this but have hope because you are on the right track! If I could give you any advice, go see the experts (like Dr. Grubb) for your conditions despite the long waits. It will save you so much time and money in the long run.

IDreamInColor, Have you read much about mast cell disease on this forum? You might want to do a search on previous posts and read a bit about it. You sound like you have some of the symptoms and it is thought to be an underlying cause of POTS. Everyone has mast cells which serve a purpose as part of our immune system. But someone with a mast cell disorder either has too many mast cells (systemic mastocytosis) or their mast cells behave poorly (mast cell activation disorders) and release their mediators (think chemicals) into the body. The mediators can cause a great deal of inflammation all over the body including colitis (which actually may be mast cells in the GI tract), gastritis due to hypersecretion of gastric acid, severe "D" due to histamine dumps, reflux, and on and on and on. There are a few really good forums for mast cell diseases specifically so if you want to learn more, try googling "mast cell activation disorders forum" and you will find a lot. Certainly your symptoms could be due to a number of different things but your posts caught my attention so I wanted to give you a heads up to check it out.

I sent an email to Dr. Theo Theoharides at Tufts whose research is completely focused on mast cells. I asked him if he has done any research in the area of mast cells and hereditary connective tissue diseases or had any thoughts on a possible connection. He promptly emailed back and said "no, but look at the attached publication that may be relevant". Check it out and pay particular attention to the second paragraph of the Discussion section. http://www.mastcellmaster.com/documents/Mastocytosis/Anetoderma,-IAAI.pdf

Yes, as Mack's Mom said I recently saw Dr. Afrin. I loved him by the way. Anyway, Dr. Afrin was definitely interested in my EDSIII and POTS diganosis. He said he is by no means an expert on EDSIII but (assuming I understood him correctly) he does believe that mast cells may be causing the symptoms/clinical presentation of EDSIII. He told me he doubts I could be SO UNLUCKY that I woke up one day with my long list of diagnoses all of which became symptomatic at the same time without one underlying, unifying problem. He believes the underlying issue is misbehaving mast cells. The genetic mutation for many of the other types of EDS have been found...why not EDSIII? It's a good question...maybe researchers have been looking in the wrong places. He said we are just scratching the surface of understanding the damage that misbehaving mast cells can do. Dr. Afrin showed me a list of well over a hundred different mediators that can be released by mast cell degranulation. It was astonishing and alarming! Again, if I understood correctly, he thinks there are potentially various mast cell mutations which create different clinical presentations in different patients. Until those mutations are identified, the treatments are trial and error. Once the mutations are identified, treatment can be more targeted. FOR ME, for the first time since I got sick, a doctor told me something that ALL made sense not just bits and pieces. I knew nothing about mast cell disease until I started reading and researching through forums like this one - so I am extremely grateful. Now the next step for me will be finding evidence of mast cell disease - apparently it isn't always easy.

I live in Georgia and recently traveled 6 hours each way to see Dr. Afrin for possible MCAD and I felt it was definitely worth the time and money. He told me that his MCAD patients often clinically present so differently from each other. I also get burning and stabbing pains in random places. Sometimes my shooting pains only last a few seconds but take my breath away for a moment.