futurehope

Kitshalleen, I'm sorry you have a bad case of IC, but glad you can take the narcotics. I cannot. They make me really sick. Has your IC specialist looked into root causes for your IC?

I believe in my case it is Mast Cell Activation Syndrome. My mast cells degranulate (release chemicals) or get triggered from various things at various times. Then, they do not "turn off" when the crisis is past. The result: many different body systems of mine are under assault from chemicals that are not supposed to be there. The list of what could trigger my misbehaving mast cells is big: heat, cold, emotion, chemicals, food, medicines, illness, etc. Not everything triggers me all the time. It is a challenge. I am currently trying to find an H1 H2 leukotriene, mast cell stabilizer meds, to keep my mast cell from degranulating with the help of a mast cell specialist. He's a hematologist. Tune in to my ongoing saga.

I have this. One thing that helps a lot is Hydroxyzine HCL. It is an antihistamine prescribed and it helps some IC patients. Another thing that helps me is watching what foods I eat. There is a definite burning that occurs in my bladder within minutes of ingesting or drinking the wrong things. I have mast cell activation syndrome. This is the problem causing my POTS and IC. I have just found out about this and I do not know the final outcome of the meds I'll be taking, but I thought I'd let you know. At 60 years it's been a long time coming.....I mean, I've been one big medical mystery all these years and I'm finally getting to the bottom of it.

@Sue1234, If you are posting an answer to me, I'm confused? This is my first post on the thread. @firewatcher, I agree with another poster, attaching a write-up of your condition may be counter productive. Just use the internet or forums to find a doc. And, oh yeah, I haven't found a good PCP yet. Not easy.

Ohelialit, Katybug, Hi, all, from a fellow Baltimoron, I mean Baltimorean. You realize we all have unusual medical issues and have found doctors that help? Yay!!! I have been on Atarax, or Hydroxyzine HCL (the generic, I think) for years. It is the only thing that really helps my IC, but not perfectly. I do have an appointment with Dr. M. I live so close. Its great. I'll see what he says. I have been taking 1 200 mg tagamet/day, but am unable to go up to 2/day. I got headaches. The Hydroxyzine HCL makes my restless leg syndrome worse, and makes me very tired and presyncope at higher doses. I'm still experimenting with increasing. I had been on 50 mg at night, but Dr. Afrin wanted me to take some in the AM as well. That is not going well. I'm also on 1/2 5 mg tablet of xyzal in the am and the pm. So far so good with that. I'm a work in progress. I am so grateful for these bulletin boards where we can share experiences. It is very helpful.. Maybe we'll meet someday. Take care.

Ana, I am not "writing him off". I am really excited that someone local to me "gets it". But, in the back of my mind, I am aware that the two doctors are looking at MCAS from different perspectives. One is a researching hematologist, and one is an allergy-immunologist, who used to be my "basic" allergy doctor. I was having an internal dialogue with myself about whether or not to continue seeing Dr. Afrin. I have seen him twice. I have a third appointment scheduled and my airplane tickets purchased for my upcoming September appointment. Also, as a sidenote, Dr. M does not take Medicare, which I have as a secondary insurance and Dr. Afrin does. So, I already set up an appointment to see Dr. M, but I plan on keeping my September visit to Charleston. Believe me, I am more than thrilled that somebody knows I am not being a hypochondriac, and that I indeed have many different ailments.

Ophelia, I just spoke to Dr. Mardiney on the phone and when I asked him if he was familiar with MCAS, he answered that most allergy patients have mast cell involvement. That answer left me a bit unnerved because I took that to mean that he has seen anaphylaxis, which involves obvious symptoms, but not necessarily MCAS patients who can display many disparate unrelated symptoms without necessarily having anaphylaxis. He asked me what my problems were, and I mentioned that I had several, too many to mention. So, I may see him as a patient but I am totally insecure since I know my tryptase is 4.0 which is in the "normal" range. This normal result did not seem to phase Dr. Afrin, and he frequently sees MCAS patients and is familiar with their results. Dr. Afrin also seemed to think that my somewhat out of range blood cell results were frequently seen in MCAS patients. So, what I am saying is.....I would be more than happy to see Dr. Mardiney since I live so close to one of his offices, but I still feel that Dr. Afrin sees more MCAS patients on a routine basis. When you first contacted Dr. Mardiney, was anaphylaxis one of your symptoms? IOW, are you obviously having difficulties outside the norm of routine allergy doctors? Is your tryptase elevated? Did you have urine testing done for protaglandin D2 and histamine? I just hope he understands "vanilla" MCAS patients like me without the obvious signs and symptoms that the usual physicians take note of such as anapylaxis and reactions to bee stings.

@Ohelialit, P.S. I know Dr. Mardiney as he used to be my allergy doctor and I received injections from him. But............. his specialty is asthma and immunology. Dr. Afrin at MUSC, his specialty is hematology. They are different. Also, Dr. Afrin is a researcher in the area of MCAS. How did you find out about Dr. Mardiney and that he has an interest in the MCAS, if you do not mind my asking? Was he your allergy doctor before? Just wondering. Thanks in advance. @Katybug, How did you find Dr. Mardiney and did he diagnose your MCAS? Thanks.

Opelialit, Thank you so much for posting the docs name. I used to go to him for allergy shots, though I went to the father, and I think you went to see his son? Anyhow, I am so psyched right now because maybe he can be my follow up go to doctor since I live in the Baltimore area. I was diagnosed at MUSC, but am on the lookout for local docs. Which Dr. Mardiney did you see. the father of the son? Was it him that diagnosed you. Please do respond. Thanks so much for posting, and I have MCAS and POTS as well. Hope to hear from you.

Get one of those walkers with the wheels. Have someone with you. Practice sitting. Practice standing. Then progress to walking. What is your diagnosis? Maybe your doctor can prescribe rehabilitation for you?

Misstraci, I, for the longest time, had no idea about the MCAS stuff. The little I knew from reading this board had convinced me that I did not have this syndrome. After all, I had never gone into anaphylactic shock, a hallmark of mastocytosis. It is only in the last two years that researchers have determined that there is another form of mast cell disease besides mastocytosis. Masto is a proliferation of mast cells. MCAS is a dysregulation of mast cells. I learned all this by frequenting a mastocytosis/mast cell disease forum. I listed all my various medical anomalies and asked the people on there whether there was any possibility that I had a mast cell disorder? They said "yes". I then found out the name of a leading researcher and emailed him the same question. He also said I should pursue the diagnosis. It takes a 1 1/2 hour airplane ride or a ten hour car trip for me to see him. But I do feel that someone has finally tied together all my disparate symptoms into an underlying disfunction. Like my research doctor told me after hearing my history, "either you are incredibly unlucky, or there is an underlying problem that can explain your varied symptoms." He is a hematologist. He specifically studies MCAS. There are many tests he did on me which are not the "usual". He told me that many doctors are not taught about these things, so I cannot expect them to understand. He is willing to work with a doctor of my choice locally, if they are willing to consult him. I chose to continue in his care at least until I consider that he has gotten me stable. I cannot list all the blood tests and the 24 hour urine. It would take too long, and probably be meaningless to other physicians. There is not one specific blood test that I know of to test for this. There is a blood test that measures serum tryptase that many doctors are aware is associated with mastocytosis if the result comes out elevated. But other than thryptase and mastocytosis, many dcotors are not aware of dyregulation of mast cells. I was told I have MCAS because I have all of the following: my history of problems in different areas of my body medical confirmation of elevated mast cell mediators in my blood and urine additional elevated markers that he commonly see in his patients a positive response to anti-histamine therapy, in my case hydroxyzine HCL no other diagnosis that account for the problems better

Why isn't it all the time? Well, in my case I have Mast Cell Activation Syndrome which is probably contributing to the POTS. The doctors do not understand why sometimes the mast cells are triggered and sometimes they are not. Sometimes there is no obvious reason at all. They are doing research to understand this syndrome better. In any event, when mast cells are inappropriately triggered, they release mediators (chemicals) into the bloodstream which can cause all sorts of symptoms, POTS being one of them. Did you ever notice that even if your blood pressure an heart rate are okay, you still feel bad? In my case, it's probably due to my mast cells being triggered. So, I am currently working on experimenting with various meds to hopefully prevent my mast cells from degranulating (or releasing mediators) inappropriately. Hopefully, on the correct meds and the correct dose, many of my symptoms will dissipate. This is an experiment that takes patience, persistance, and a methodical approach. Tune in next year to see how this all worked out for me.

First off, we on this forum "get this". We understand. Also, believe it or not, there are doctors who get this. I have a neurologist who gets this. My mast cell doctor "gets this". I'm not sure if they understand the every day accommodations that I need to make to function, because they are not me. But, for the most part, they realize how debilitating POTS can be.

Brethor9, I am so happy for you that you can continue to take the Klonopin and see results. Apparently, my body "gets used to it", and then causes me to have insomnia after taking this pill for two weeks. But during those two weeks it's like I don't have POTS. So believe me, if I could take it, I would. I'll see what Dr.Afrin says.

brethor9, I have POTS and MCAS, and over the years I noticed that Klonopin was one of the only drugs that made me feel normal. Problem was, it quit working after 2 weeks, and insomnia would rear its ugly head, despite the klonopin. I would then need a higher dose for the med to work and there was no way I was going to begin increasing the dose. Have you been on the same dose for a while? Does it still work? I'm going for my FU with Dr. Afrin July 9th, and I'll see what he recommends.

JPJD59, I have normal tryptase and normal histamine and Dr. Afrin thinks I have MCAS due to my history, response to antihistamines, and elevated markers that he tested for. I'll learn more on my return visit July 9th.

Puppylove, I would not feel comfortable answering your question because I don't have enough information about you. Obviously, I am not your physician or cardiologist. First off, is this the first time you've done any exercising? How long has it been since you've been deconditioned? Again, there are way too many unknowns about you for an online poster like me to suggest anything.

Arizona girl, I definitely have to be careful of my knees. There is something going on and it has to do with age, so there are certain things I won't do. I've also noticed that my thigh muscles are weaker than I thought they should be, even after trying to strengthen them. I have no idea why. My leg muscles tire more easily than when I was younger. Same for my biceps. Anyhow, I'm glad your doctor has okayed you to give it another go. Let us know what happens.

My opinion after 4 months of exercising, the first three months being Dr. Levine's exercise study, it is not easy. As a matter of fact, it is difficult. I've had to overcome way more since being diagnosed with POTS in trying to exercise than before POTS. There were days I did not feel like I was going to make it. There were days that I felt worse afterwards, especially after the interval running days. But, I refused to stop. If I had stopped every time I felt bad or worse, I would be in the same position I had been in before doing anything. There is no doubt in my mind that I still have a malfunction going on in my body. It is more difficult for me than for a normal person to live my life. I have POTS, MCAS and assorted other ailments probably all tied together. I know what happened to me when I first got symptoms of POTS. I freaked out. I had no comprehension what was happening. I stopped moving all together out of fear of passing out or of being dizzy. Fast forward many years, many doctors visits, including an okay from a cardiologist......I decided to do Dr. Levine's exercise program. I do not recommend exercise for anyone. This is a personal decision involving your state of health and your doctor. I am not cured. I am helping my body re-adjust to its deficiencies. If I let up, I slide back more quickly. I am motivated by challenge. I am not done living yet. I am determined to do the best I can with what I have. Don't exercise if you cannot or do not want to. All I can say is, it does wonders for your mental and physical well-being. Instead of sitting around, I've chosen to do this. I may crash tomorrow. I may pass out. I may die. But I will not give up living and striving until it's over, until I'm six feet under. Until then, I try, I fail, I push, I live. That has been my choice. It may not be yours and that's okay. Just to let you know, the improvement does not happen all at once. It is gradual, slower than normal. But, the improvements are there. I will not go back to the way I used to be if I can help it. I will keep on keepin' on.

Way to go, Rama!

Green, Something has gotten lost in the cracks for you with Dr. Levine's program. Email them. They respond rapidly. Or call.

Rich, I was talking to Anaphylaxing only. I know her from another forum.

Ana, I bet you will be able to jog again! Never give up until you are six feet under.

Do you have a dermatologist or an MCAS doctor? I would suggest you see the dermatologist because there are presciptions for rosacea.

AllAboutPeace, Johns Hopkins Hospital wanted to perform a TTT the way you described it. I freaked out so bad hearing about it, that I cancelled. It turns out that the other 2 TTT's I had were given with physicians present and no under the tongue challenges, and they could see I had POTS. One was done by my neurologist, and the other by a doctor doing a study at NIH (National Institute of Health). In each one, once they saw my body's response, there was no need to keep me upright for 45 minutes. No way I would do that. If I had to do it all over again, I still would refuse the Hopkins TTT with just a tech present, and a challenge of something to speed the heart. I cannot tell you what to do, but I totally understand your apprehension.