Godsgal

there are tons of antihistamines I can't take....but thank God there are some I can!!! What I would recommend is if you need them, to try a compounded version. That has made all the difference for me and several of my medications.

I drink water and I get a numb mouth...and I'm not joking. Food is very hard for me. The antihistamines help a lot. I wish I could convince you to try them. They help me sooooo much.

I have had many a rash and hives and it's all related to mast cell activation in me. And apparently there is a link between EDS, POTS, and mast cell activation. It is certainly something worth looking into for you.

I don't know how you don't take meds. I'd be in the hospital within a day I'm sure if I didn't take them. You asked what foods I get those reactions with...more like what foods I don't react too. The only foods I can eat now are potato, turkey, beef, cauliflower, split peas, I'm having a hard time thinking of anything else I can eat without a problem. It's been really tough. That's why I'm begging for help with my meds.

ER trip tonight....awful sharp chest pain accompanying allergic reaction. I have significantly upped my meds in the past few months but I'm really struggling with some CRAZY allergies/reactions. I only have around 8 things I can eat, can't wear polyester anymore, my bras bother me too, and I was drinking water today and that was making my mouth go numb. Soaps, deodorants, toothpaste, chemicals, scents are all making me extremely ill and being in public is quite the challenge. The computer is now making me sick when I get on it and that is why I haven't been on here as much and I'm sorry I can't support and help more on here. My meds are Singulair 10 mg twice a day, Midodrine 5 mg 3 times a day, Zyrtec 5mg in the am. & afternoon, 10 mg of zyrtec at night, 150mg of zantac twice a day, benadryl throughout the day. I feel like I need more! I'm worn out from having these crazy reactions in front of my boys and going to the ER. I tried gastrocrom once and I had a major mast cell attack within minutes after taking it. Dr. Afrin keeps mentioning ativan and I'm not quite sure what that is going to do for me at this point but sedate me more. I would appreciate any help anyone can give! I feel like a little lost child wandering out in the woods and very discouraged right now. Having a low moment but I do know God is with me and I do believe I'll be better one day. I just need to keep the faith and get through this difficult time.

My good friend just saw Dr. Castells (mast cell expert) and she tested my friend up & down for multiple different types of tryptase testing and she never told her to get off her antihistamines. And just a thought....both of our tryptase levels are normal and we still have mast cell disease. It mostly rules out systemic mastocytosis. Correct me Julie if I'm wrong

Hi Enko...I was thinking along the same lines as Macks Mom. I lived for a long time with the weird feeling in my throat but my MCAD meds have made it much better. I would definitely be really careful and keep the benadryl close just in case. Take care and hang in there.

Hi there...I'm sorry about your frustration and the fact that you are so sick. I just wanted to note that you have crazy allergies and flushing and it would be worth investigating whether MCAD is the cause of your POTS. Of course, you may want to get ruled out for carcinoid and pheochromocytoma. But after that, I would highly look into the mast cell activation. I found out that is what is causing my POTS and it has changed my life for the better. And you just happen to be in MA...which is near THE head doctors in mast cell disease at Brigham Womens Hospital Dr. Marianna Castells and Dr. Akin. They are in Boston. And I thank God Macks Mom and Sarah4 on here helped me see that is what was causing my symptoms.

Sarah.....my pharmacist and docs told me about the interaction. And it is a very strong serious interaction. I would look that up if I were you. I really want to start taking doxepin but I just can't seem to get off the midodrine. My bp just wont stay high enough for me to try it.

How long does this stay cool for you? I have been concerned that if I lose power I would be having a major problem without A/C. Would this be something I could use in that situation? I can not get hot or even mildly stuffy for even 5 minutes or I will fall apart and get near passing out.

Hi there....I'm pretty sure that you and I have talked about mast cell activation before as a possibility for you. If that's the case, I can tell you that would definitely be a symptom of it. Not that you have it of course, but I and a lot of my friends with it get that type of thing all the time. Have you pursued any antihistamines just as a trial or any testing for that condition?

I would suck on ice cubes. Or pedialyte frozen pops if you can tolerate those. Or freeze gatorade and suck on that. Go really slow.

Hello...I'm 30 so being disabled is not exactly what I want to be BUT I know where my body is, I know how I feel, and I know how randomly sick I can become so quickly. Only you know what you're able to do everyday and whether work would be okay for you. Work is not okay with me right now. I just got this in December and I'm still struggling. I did apply for disability back in February because I knew something wasn't right. They denied me of course and I appealed it. Are you in a place in your condition where working at home doing anything would be an option? Maybe the job you had is not possible for you right now. Or maybe limited, or at home? Or maybe a different line of work? Brainstorm with yourself and be honest as to what you are capable of doing right now without worsening your condition.

Hello to all....It's been a while since I have been on. Unfortunately being on the computer triggers me and makes me feel worse than I already do so I try to limit it. To start I can confidently say that attempting to get my mast cell disease in order has helped me sooooo much and for that I'm thankful. The meds I take: Singulair 10mg am & pm, Zyrtec 5mg in am/5mg in afternoon/10 mg at night, Zantac 150 mg BID, Midodrine 2.5 mg 3 times daily. My trouble now is the ridiculous low blood pressure & high heart rate. I'm just stuck. I need help! My blood pressure ranges from 79/50 to 98/60 throughout the day along with over 100 if standing. My EKG during a recent attack just showed a faulty right conduction...I guess what happens before you get the bundle block. I have no idea if I'm even saying that right but no one including the ER or my cardiologist was too concerned about it. But my cardiologist did say he wanted my heart rate under 100 or my heart would just get weaker and weaker. I'm more concerned about the tachy than the bp at this point b/c I have learned to live with the bp....but the high heart rate is wearing my heart out and I don't like that. I'm tired, spent, worn out, and need help. I have thought about ativan b/c I know it can help some with mast cell disorders but reading about it online doesn't comfort me much as far as potentially lowering my blood pressure more. The midodrine doesn't seem to work very much even when I'm on 7.5 mg and then the side effects from it are miserable. I wanted to try doxepin for the mast cells since my allergist said it was 80 times stronger than benadryl. But I have to get off the midodrine first. Any help would be appreciated. I'm struggling right now.

I have struggled A LOT in this area and I can tell you one of the best things for my breathing issues is Singulair. Easy med to take too....not a single side effect that I have noticed.

Hi Lieze....some of the foods I notice that I react to are either high in histamines or high in salicytates so I avoid them both. A lot of those besides the potato & onion seem to be on both those lists. www.salicytatesensitivity.com has helped me a lot.

Hi....I had this when my ears were filled with fluid and so were my sinuses.

My only other thought would be compression hose & salt tablets. And believe it or not, those compression hose work. My blood pressure was a 5-10 points higher on top with those. And that was enough to keep me out of the 80's on top and feel better.

Hi ladies...wish I had something helpful to add but I wanted to know how you get tested for this. I really feel like my blood sugar is all off. I have to eat religiously like every 2 hours, I can't get enough to drink. If I don't eat, I get sooooo sick. Shaky, restless, adrenaline type surges.

I'm 30 years old and I can't even sharpen my son's pencil my hands hurt so bad. It's getting pretty bad for me lately.

I did see him in February. I would like to add that you should see him in addition to Kusomoto or Vankat (they are both EP docs in cardiology). cheschire is the head of neurology. Do not expect him to have a magic cure for you. Do expect a man that will thoroughly review your records and do a ton of neurological testing for rare antibodies that a normal doc can't and wouldn't test you for. If you go there, see as many specialists as possible and make the appointments in advance so you don't have to go standby when you get there.

Hi Kate...I had one a couple months ago and it wasn't terrible. Similar to childbirth in that the pain is gone the second it's over, and the good thing is it is only a couple of minutes. If your doctor is pushing you to do it, maybe you should. I wasn't wanting to do mine and put it off for a while and finally I just realized I needed it done for my health! It is a very safe and very telling test. It's worth the momentary discomfort especially since it is not risky really at all. My hematologist set me up on an IV with fluids to prevent any drop in blood pressure I may have since I run low. I felt really good about it and I'm glad I did it. I hope I encouraged you today to bite the bullet so to speak and do it for yourself. Take care

Hi housewoa.....take heart and know that God will be with you and take every day as a new one with opportunities to pick yourself up and rest in His mercy and healing. When my days are awful I have hope in that and I get through. And it's not in vain.....I look back and see that I am getting better, thanks be to God!

hello...I agree with the others, you may not need that. I would just ask them if they could lengthen the test any or at the most use the spray under the tongue...which I'm not a huge fan of either. But I would personally refuse the IV medication. I have had 3 tilt table tests and I've never had that IV med you're talking about. And it's easy to say not to be worried about the tilt table but take heart in knowing you will probably be in a medical facility at the time and during my first one I almost fainted and I begged them to put the table down before I did and they listened. So try not to get yourself worked up, have faith, and go in finding peace that you can potentially get some answers. Take care

Well, I added some MCAD meds 3-4 weeks ago. That has helped me a lot. At that time I was 100 pounds, and couldn't gain weight at all. Sorry for offering up TMI but I was literally seeing my food come out of me within 5-6 hours or so...exactly how it went in. Very weird. After I started additional singulair and zantac, I started absorbing my food and maybe that is why I gained so much weight over the past few weeks. But my stomach is absolutely HUGE and hard as a rock. Uncomfortable. SO bloated. Yesterday I didn't eat as much or salt my food as much and I lost 4 pounds from the day before. I don't get that. We have rotavirus at our house and everyone has been sick and my 15 month old was admitted due to dehydration so I haven't been to a doc yet. I need to get a GI and endo doc soon though. If I eat any carbs whatsoever, they make me bloated but if I don't eat carbs, I lose tons of weight. Another weird thing, last night I weighed myself. Then all night long I peed, and peed, and peed. The next morning-- 3 pounds lighter.