Godsgal

Praying for you all. I wish I could help more than that but prayers have helped me more than I can say. Hope to read a better update soon.

I'm scared tonight. Every night I get on the scale and I weight 1 1/2 to 2 pounds more than I did the day before. Something isn't right. I went from being 100 pounds and not able to gain anything to all of a sudden I gained 12 pounds in 3 weeks. Something isn't right here. My stomach is massively bloated and HUGE. Rock hard. I did have "trace pelvic ascites" on my ct scan of my abdomen like 2 months ago. I don't know what's going on....anyone know. And no, I eat health food and I don't pig out. Meat, fruits, and vegetables. My diet is what everyone should eat so I'm very concerned.....

I really do try to stay away from breads, crackers, all that. I lost a ton of weight so I had to add in some potatoes daily. I do eat this rice cereal and I love it.

I wish I could tell you something about this specifically but I will say that I have tried a lot of things for my conditions and sometimes the benefits outweigh the side effects, and sometimes they don't. And sometimes, other things can be tried that won't affect you the same way. If it's not dangerous to stop it altogether, I would definitely do it if the benefits to it are not outweighing the side effects.

I have gotten the skin burning thing as well and I have the mast cell problems. I wonder if the antihistamine would help you as Julie mentioned. I can't wear tight clothes, lacy or itchy clothes, elastics, and cold icy washcloths help me a lot.

How there! My whole condition seems to be dictated by what foods I eat, or don't. I'm thankful I am finding out this piece to the puzzle because it helps me a lot. Do stay away from the carbs. I feel the best when I eat a histamine free diet, with fresh foods. Fresh meats, no leftovers, with fresh fruits and vegetables. I'm from the south too so looks like you need a pot of beans with cabbage, onions, carrots, celery, cooked in homemade chicken broth. That's what I have brewing today.

Hi...sometimes I get adrenaline rushes and it's extremely uncomfortable. If I take benadryl, it goes away. I have wondered about whether I have these? How do you go about checking?

Yes I have muscle twitching and pain in my joints & bones. Things have been markedly better for me since starting these mast cell meds....thanks be to God! On the hand washing, I switched soaps to a more natural one and one without citrus and that helped a lot.

Wow...I can't believe the mess you're dealing with! I'm so sorry!! I struggle with low blood pressure myself. Has she tried the compression stockings? Those seem to help my blood pressure. Hope she gets better soon!

I have had a terrible intolerance to physical activity in general. My MCAD meds have helped my symptoms improve greatly so physical activity has been easier for me. Not exercising yet but physical activity has been more tolerable. I also know that Dr. Levine's exercise protocol includes sitting exercises which are best for people with POTS (recumbent bike, rowing machine, etc). That helps to avoid the blood pooling in the feet and the subsequent tachycardia and/or blood pressure drop.

I have gotten this many times and I have to say it's much worse when I don't go to bed nice and early the night before. If I don't get a full night's rest, it is absolutely awful. Sometimes, around 3 or 4, it gets to the point I can't even lift my arm to pick up a glass of water. It is scary. But what helps me is resting, eating food, believe it or not carbs like a potato and some meat, along with resting with my feel elevated for an hour or so helps make it dissipate.

Just wanted to throw in that I have the mast cell issues and I have had some CRAZY pins/needles/numbness type symptoms. My face, my neck, shoulders, the gums in my mouth, the roof of my mouth, feet, hands. I have had it so tight around my throat it feels like a rope around my neck. I have had the MRI on the spine, nerve conduction study, and it's all normal. I was told it has to do with the mast cells. I have also had some very strange things happen to me while sleeping. I have had some of the craziest things happen to me and apparently it's all mast cell related. I have been half asleep in bed and all of a sudden shot up involuntarily in bed and then fallen back down, all involuntary. This crazy condition we have....man!

Hi KCmom,

I'm concerned for your boy with the symptoms he has and another condition that is causing his POTS. Potentially a mast cell activation problem. Finding the root cause of our POTS symptoms is such a wonderful thing because then we can try to treat whatever that is and get relief hopefully. If he has a mast cell problem one claritin will not touch the symptoms. In fact, he would need two a day.....one in the a.m. and one in the p.m. PLUS an H2 blocker twice a day and potentially others. But I'm not a doctor and I'm just telling you what a person with a mast cell problem would need. Are you able to pursue some testing for him? I'll tell you don't listen to doctors because I have had at least 10 tell me I didn't have it when I did. It's very hard to get a diagnosis but it is possible. And there is a link between POTS and MCA and within my own personal POTS circle that I have met locally I can't believe how many of us have it. I think it's a lot more common than doctors think and missed very often in the diagnostic process.

Prayers and thinking of your son today,

Jared

I was wondering about the mcad/mcas thing as well because I have gotten that as well. And then I saw Sarah4's post. Does he have any flushing? Any hives, rashes? I have some serious muscle pain and it seems to have gotten much better since starting the mast cell meds. I'm starting to believe that mast cell activation occurring with POTS is not as rare as doctors think it is. Myself and 4 other women I have met on here that I know personally outside of dinet all have it and that's not a coincidence. I have heard that histamine levels are at their highest in the middle of the night...around 2 or 3 a.m. That's what they say on the mast cell forum.

I will tell you that long before any doctor had an inkling that I had mast cell issues I started the low histamine diet and that helped me a lot. I struggle a lot with low blood pressure so I know it's miserable. I wish I could tell you more. I don't have any clue what meds he is taking but perhaps he could take an antihistamine at night before he goes to bed that would not interact the others just to see if he got any relief???

Hope he feels better soon....

On the shower, are you taking one in hot water? That would contribute to problems for you potentially if you were. During my sickest moments, I can't even wash my hands in hot water. And being hot can cause mast cell degranulation. Shaving also seems to bother me too. Could that be it?

And ask all the questions you want....I know I do!

Jenny, I know you know this but I wanted to mention for the others here that Dr. Afrin and his nurse both told me that new meds will stir up mast cells for the first couple of days and then after that they should settle down and the medicine will work (as long as you're not truly going to have a reaction to it.

I started taking claritin as you know and I took it for weeks and the reacting never stopped and it got unbearable. I since started zantac and the first time I took it I got a rash and swore it off. Well a month after that, I tried again with it and yes, I had the itchy/tight throat, itchy skin but I hung in there and it went away and the zantac does seem to be helping me now. The first few days are the worst and as long as I'm not chugging benadryl and having a near anaphylactic episode with a new med I try to hang in there.

Hi....if you want to take both just try one at first just in case you have a reaction you will know which one did it.

H1---claritin, allegra, zyrtec

H2---Tagamet, pepcid, Zantac

Hope this helps!

Hi there....I'm mentally drained tonight but I'll do my best with the questions. As far as the masto vs. MCAD, they are treated the same according to Dr. Afrin. You probably feel poorly in the evening because your morning anti-histamine has worn off. Could you check with your doctor about taking another dose in the p.m.? Most docs won't approve it unless they know about this diagnosis because it's over the recommended dose.

As far as the symptoms, yes I have them both. My throat bugs me also and for a while it felt like I had a large lump in it. Some times it feels like a tightness or a squeezing. My meds have helped this a lot. Some of my lymph nodes under my arm bothered me as well. Now of course that can be due to a billion things but mine had been bothering me like a year and Dr. Afrin also seemed to believe this was all mast cell problems.

Maybe you could consider speaking to your doctor about taking your zyrtec type med at night also along with an h2 blocker such as tagamet or zantac. A lot of people with mast cell issues like zantac.

Hi all, I feel so overwhelmed by this condition. Some days I wonder if this is even what I have even though I know it is. This condition came on me so suddenly. I mean like a giant bomb went off and all the mess from it hasn't gotten cleaned up. I went from extremely healthy and able to do a lot to shortness of breath with minimal exertion, needing a wheelchair, and a whole new body with very limited abilities all in a day. Does it really happen like this?

I'm very concerned about this Churg Strauss syndrome because of my breathing difficulties with very minimal exertion. And I have high eosinophils but not high enough to be the eosinophilia. I know it has an allergic phase and mimics the mast cell stuff. Any thoughts on this would be helpful, how it's diagnosed, etc.

I'll have good days where I do okay....I do a lot of sitting but I'm able to do more. And then it's that time of the month or I run into some chemicals somewhere unwittingly and I'm up all night chugging benadryl and unable to lift my arm for a glass of water. What in the world? I don't get it. I don't go into shock like some people with mast cell problems. I'm so thankful for that. I just wonder if others with mast cell activation & POTS are using wheelchairs and barely able to do at 30!

I'm having a rough day and I know God will see me through it. It's a constant struggle and my faith keeps me going. But bad days knock me down hard and I cry and I just want to get better for my boys.

My current meds are Singulair 10 mg twice a day. Zyrtec 5mg in the morning and 10 mg at night. Midodrine 7.5 mg three times a day. I know I was once considered under medicated on here for the mast cell stuff. Is that still the case?

I know I have to go one med at a time very slowly. I'm in the middle of moving and don't want to change my meds b/c of any potential reactions but I'm not doing so hot either way you look at it.

I know when people first get POTS it's awful and it gets better as time goes on sometimes. Is that the case with this condition too (the mast cell stuff)?

Any help would be so graciously appreciated. I'm struggling today....

So a lot of you know I have the mast cell disease. One problem that I can't seem to wrap my head around that kinda scares me is these weird breathing issues I have. With any kind of physical activity, I get shortness of breath. No wheezing, no panting, it's just a heaviness in my chest almost like I'm not getting enough oxygen when I breathe in. It's nothing anyone can hear, it's something I feel. Maybe even a heaviness with a little burning in my lungs. It definitely get's worse if I run into something that triggers me (chemicals, fragrances, smells, etc.) But I get it just randomly too. And singing or reading books to my son is definitely problematic and it aggravates it. Now the real clencher for me is that I take Singulair 10 mg twice a day and I feel like that should be taking this away. But nope. I still have it. Perhaps not as bad as I used to have it but I definitely still have it too much for taking that amount of medicine.

What's the deal?

Am I taking the wrong meds? I have had 3 chest x-rays and a breathing function test. Nothing showed up.

I asked Dr. Afrin about Churg strauss and he said I didn't have it......now he is an incredibly smart doctor but I just worry about it which I should not be doing.

Any thoughts?

I took this for about a month. I could tell no difference in actually helping me. I stopped because I was getting wild highs in my blood pressure very suddenly....up to 180/110. Not cool. I stopped and so did those episodes.

I asked Dr. Afrin this exact question and he told me it does not necessarily have to be done right after a flush BUT the chances are better that you will show elevated mediators.

I will tell you all there are 2 other women from here that I know in my area....we met through the meet others program. We're all really good friends and support each other. They both have normal tryptase, they have flushing, and I pushed them to get the biopsies and they have it too!!! One of them had a NORMAL urine methyl histamine done. Go figure.

MCAD can cause so many mediators to be released in the body that cause problems.....what I learned from Dr. Afrin (mast cell specialist in South Carolina) is that there are hundreds of mediators that could be released by mast cells when they degranulate so it's hard to know what drug therapies will work. Mediators are histamine, prostaglandin, leukotriene. Singulair is an anti-leukotriene medication. So it would block that mediator IF that was one of the ones causing a person with mast cell disease trouble.

Hello,

Your symptoms that you list....flushing, tachy, muscle weakness, etc. are symptoms of mast cell activation. I will tell you my friend who has POTS/dysautonomia that I met through the meet others program on here has MCAD and she had an elevated 51HAA urine test and they scanned her for tumors and she was sent to NIH too to rule out Pheo/Carcinoid and she didn't have any of that. Turned out it was all the mast cells doing that. POTS has been linked to mast cell disorders plus you have flushing. I would take very seriously that you may have a mast cell disease and the best way to find out is to get to a specialist regarding this. Where are you located? Maybe there is a good mast cell specialist you could check in with near you. I will tell you I had a pretty good experience with Mayo BUT they don't know mast cell stuff. In fact, they told me I did not have it and I DID and the head guy on this issue at Rochester that deals with mast cell stuff said I didn't have it. What a joke!! Either way, it is a VERY RARE thing for doctors to deal with so it needs to be handled by a specialist. I will let one of the more educated people on here comment on the chromogranin A test. But I would not leave those symptoms and lab abnormalities go unseen by a mast cell doc. It has changed my life getting a diagnosis and beginning to treat it with meds. And my tryptase is normal and so is my friend's so do not let any doctor rule mast cell disease out for you based on that. Lots of people have a normal tryptase level and have mast cell disease. Have you had that test done? Also the 24 hour urine methylhistamine test would be great to have too. Keep searching for the answers and God be with you!

I got some through Mediven, knee highs, that were $100 and that was at Mayo so they are cheaper on line.

@Shoegal.....Compression garments help by stabilizing blood pressure and therefore the heart rate. They prevent blood from pooling in the lower extremities. They do a lot but that's my simplest and best way to describe what they do.