LindaJoy

I developed severe allergies when I was first diagnosed. I've had some allergies my entire life. I was born with Mast Cell disease, so I'm used to reacting, but not like this. I finally lost all foods, and am losing all meds, too. I am hyper reactive to many things I never used to be. I don't think it's the mast cell disease, either. I think it's my ANS system on hyper drive. I'm sorry you're going through this, too. I, too, cannot take any pain meds. The scary one is that I cannot take any antibiotics, either.

I'm sitting here right now with a root canaled tooth that is waiting for a crown. I don't know that it has made me any worse with my POTS long term, but when I first had it done, I was very ill for weeks and weeks. I am not looking forward to finishing it, as I know I'm going to be triggered again. Take care, everyone.

Hi, everyone. I do this, as well. Yogini, you said you get this from rolling over in bed. I do, as well, and then I get all sorts of symptoms, namely a feeling of heat and sweating. Does anyone else sweat and get a feeling of heat just from rolling over, and possibly have all these other symptoms, too? Lindajoy

Honestly, Elena, Mast cell activation disorder / syndrome and mastocytosis are a lot alike. They have the same symptoms, same treatments (mostly) same triggers. There are some differences. Mastocystosis means you have too many mast cells. This can lead to a type of mast cell leukemia, but this is considered rare and is not considered to be a consideration in MCAD (for right now). With MCAD, you have normal mast cells numbers, but they are twitchy and dump a lot. It is said that with MCAD, you can be assured that, with proper treatment and avoidance of triggers, you can live a normal life-span, but, as with all things medical, they may find that to be different with further research, but so far so good. Hope this helps. Linda

I get this, and you all described it to a tee. My husband, who was just diagnosed with OH, does this, too. We both describe it as having to concentrate to breathe, to think about breathing deeply because it feels like we can't, and it feels like, if we don't think about it, we will just stop breathing all together. I hate it. It's scary. When I get too bad with this symptom, I get out my pulse ox and my peak flow meter (for asthma). If I look okay on both of those, I satisfy myself that I'm actually breathing okay, it's just a feeling that goes with POTS. Now, that doesn't mean that I am no longer anxious! I truly am not comfortable again until I am breathing normally and without having to think about it again. Take care.

I have had Mast Cell Activation Disorder my whole life, and I have never had one elevated tryptase. I know a lot of MCAD people who have never had an elevated tryptase. It is one of the worthy markers, but it is not the one deciding test. That's why there are so many other tests that can and should be done. I agree that Dr. Afrin is the one to see if you're going to see a mast cell expert. I've seen so many of them: Butterfield, Castells, Greenberger, Akin, worked with Weiler by phone, and talked with Dr. Afrin. To me, he's the one to see. Take care. Best wishes. Linda

I was on gastrocrom for six months, several years ago. I experienced no side effects with it, but it did nothing for me, either. I did show kidney failure on my blood tests while on it, but I honestly don't think it was true failure; I think the gastrocrom affected the results somehow. I wish your son the best on his illness and gastrocrom trial. Linda

I hear you, Lillybits. After my husband and I had been married around five months, his hip went out and I had to take care of him. About a year later, his back went out. Two years later, I was diagnosed with POTS. We've taken turns a bit, but he's never been long term ill, like now. I feel for you both. I'm so sorry for all you two are going through. Thank you, Claire. I had no idea what PN meant. Yes, we go back in October to have the tests--haemodynamic and the others--to try and find the cause of his OH. We're hanging in there. His mood is bouncing around like a ball, but that's understandable. Thank you for your kind words. He just keeps saying, "I can't believe this. It can't be this bad." I know how he feels, and I feel helpless. Yes, it is that bad, and it is real. But, he'll adjust; he'll have to. You take care, too. Thanks, everyone.

No problem, Claire. With my history of anaphylaxis (my throat has gone totally closed once, with nuts, and close to it many, many times), I worry when someone is put on a beta blocker with a mast cell history. Yes, I think it would be wise to check with your mast cell doctor. You take care. Good talking with you. Linda

Thank you, Dani, for explaining your eye condition. I've been having problems with my right eye, as I said, for a few years now, but it's getting worse. All the docs will tell me is they think it's part of migraine, but I have the eye problems all the time, without the migraine pain. You take care. I'm so sorry for the issues you are dealing with. Will look forward to hearing your future results and hearing how you're doing. Lindajoy

Hi, Claire, I was handed a script for propanolol after my tilt two weeks ago. I have been told, for over 15 years, by most docs I've seen, that since I go anaphylactic and have had to use epi, I cannot take a beta blocker. It would block the epi that would be used in attempting to save my life should I go anaphylactic while on it. I know you have mast cell issues. Are you ever in the position of needing epi? If so, I would really hesitate using the BB. I had an ER doctor tell me one time that he had a patient come in with either a nut or bee reaction, in anaphylaxis to the point his throat was shut (that's what I do), and they couldn't save him because his BB blocked their epi. I have always been treated with calcium channel blockers. My endo, a few days ago, with all I'm going through with my steroids and the clonidine patch, said the usual treatment for what I'm going through with my excited beta system is, of course, a beta blocker, but knew I have the anaphylaxis issue and couldn't go that route with me. I understand your concerns about trying new meds. I'm the Queen of New Med Fear. Just wanted to mention this little snag, to be sure you're aware and you don't have anaphylaxis issues that could conflict with the use of a beta blocker. Take care.

Hi, Kim, It's probably a bit different coming from me because I have POTS, Addison's, Mast Cell Disease, etc., so I've been sick for years, and to be with someone who is sick now, as well, is probably a different experience for me than for a healthy person whose spouse has become ill. But, I will say, when John first got sick and it was up to me to get him to his appointments at Cleveland Clinic (I hadn't driven in a very long time--it was hard), and to be the supportive one while he was in the hospital, arguing with doctors, etc., made me truly appreciate all he has gone through while I've been sick. It is very different going from being the sick / cared for one, to being the care provider. I worried about John's health because I felt responsible to get him the help he needed since he was down and in no position to do it for himself. He said he felt the same way with me all the time. I worried constantly, and prayed constantly, that I wouldn't get down because John needed me, so the stress was huge. Like I said above, I was responsible to drive him to his appointments, hours away, when I hadn't driven in a long time, so this was hard on me. And, I saw in him signs of Dysautonomia, so I had to convince doctors and get him the testing he needed. We fired his doctor, got him in with mine (who is absolutely awesome), and thankfully, she listened and saw that, yes, he acted like someone with autonomic dysfunction. I learned, first hand, the stress from responsibility and worry that was on him so much of the time. Right now, since he's gotten his diagnosis, it's been even harder, in a way, because he's very upset about it. One minute, he wants to learn about it, the next, he's snapping that he doesn't want it, doesn't want to deal with it, that he's fine, etc. It's like living with a yo-yo. I try to keep in mind what all he has had to listen to and go through with me, so I try to remain patient. I honestly don't know how to approach him right now. I'm the kind of person, you tell me I've got something, I'll research it and deal with it. Why? Because I have to. He's not there yet, and it's hard for me to know what to do for him. I'm used to everyone here on these groups doing the same as me--seeking information so we can all live the best way we can with what we've got. He's back and forth, and it makes it hard to know how to relate to him right now, but it's early. We'll see how it goes. Right now, I'm just following his lead. So, there is another thing that I'm dealing with that he has had to with me: How do you relate to the chronically ill person at times, when they are struggling so? It's another hard thing to do. All in all, you do the best you can, as long as you do it with sincerity, concern, patience and love. I'm sorry that you and your family have to deal with these issues, too, Kim. It's so hard. John and I, over the years, have been at each other's throats at times, then other times, have relied heavily on one another since no one else is around. Take care, Kim.

Hi, Claire!!! Good to see you. I don't know his numbers start to finish because we don't have a copy yet, but Dr. Fouad sat down with us and went over his bp numbers, with his systolic dropped by 23 pts. nearly right away. She said he tried to overcome it, but it would fall again. I'm sorry I don't have the exact numbers yet. She said she would be sending them to us. Cassandra has been great talking with John about it. She has OH. I didn't know that about POTS and OH. Thank you for explaining that. The doctor at Case wrote on my TTT that I have POTS, OH, SFN and PN (what is PN?). Take care. Hope you're feeling a lot better after your infusion. Again, so glad to see you here! Hugs to you, my friend.

Hi, Dani, Glad you got some answers thus far. Could I ask you what your symptoms are with optic neuritis? I have a problem with my right eye that no one can seem to find. Thanks. You take care.

I used to swing on swings until I was pregnant with my second child. After that, no more swings. I used to ride all kinds of rides, except the tea cups (uuggghhh), but over the years, I can't do any rides any more. I've always gotten car sick, especially on the school bus. Elevators even bother me now, so I pretty much stick to my feet being planted firmly on the solid, non-moving ground as much as I am able.