jenwic

Praying for you, Jared!

Does anyone else have food/medications sensitivities (not allergies)? Do you have POTS alone or MCAD too?

I went to Dr. Bernstein in Cincinnati to be tested for MCAD. He ordered several tests including the 24 hour urine histamine. I asked him if I needed to go off the Claritin I had been taking and he said no. I went to the hospital and the lab tech told me I had to go off any antihistamines for 24 hours or more before the test.

When I got home I emailed Dr. Bernstein's office and asked about the Claritin again. I got an email back that said to go off the Claritin for 3 DAYS before the test. I stopped taking the Claritin today but I'm confused. I read somewhere online that antihistamines don't get rid of histamines in your body but they change the way your body reacts to them so the count wouldn't change.

Also, I asked him in the email about avoiding high histamine foods during the test and he said yes, I should avoid them. They are one of my big triggers. Will my test be accurate if I avoid them?

I go through some of the same things when I eat some foods. One of the worst was peanuts. I would have severe tachycardia with my heart even skipping beats, weakness, diarhea, the sensation of my throat swelling (but no difficulty breathing), shakiness... I took 50 mg Benadryl which helped some but didn't completely take all the bad feelings away. Sometimes I would feel bad for 5 or 6 days afterward. I thought for sure I had a horrible allergy to them. I went to an allergist who did blood allergy tests for peanuts, walnuts, pecans, soy, wheat, tomatoes. ALL the tests came back negative with a level of "0". Now I am still afraid to eat peanuts but my family can't understand and I know they think I'm crazy.

At my Jan. appt, my cardiologist, Dr. Schloss, suggested I see Dr. Grubb. They faxed my records to Grubb's office, but I didn't hear anything until yesterday. I guess Schloss' office noticed I didn't have an appt. scheduled yet and called Dr. Grubb's office to see what was going on. Dr. Grubb's office called yesterday and I have an appt. for June 3. That was a six month wait.

I have tried Singulair and can't tolerate it. I took a children's chewable and cut it in half. I felt "off" but not horrible. When I took the whole tablet the next night I woke up with my heart racing and pounding and felt horrible for 24 hours. I really need the Singulair for asthma but can't tolerate it at all. Everyone is different; however, and I know that many people with POTS and MCAD take it and really love it.

I take a steroid inhaler for my asthma and Rhinocort Aqua (steroid nasal spray) for allergies. I get along fine with them unless I miss a dose be accident and then I feel really bad with weakness, heart racing and pounding, tremors, diahrea. I have the same reaction when I miss my Florinef (also a steroid). It has been suggested that the steroids are treating MCAD (which I haven't been diagnesed with). I am in the process of trying to get a diagnosis and figure out what is going on.

I'm taking half a pill in the morning and a whole pill at night. I know I should not take that much at night but that's what I started with and I can't stop taking it or I get severe tachy, heart pounding, tremors, diahrea, weakness, etc.

Julie,

I saw your comment about Florinef calming mast cells down. I think you're right due to my experience with it. I just wondered what your reason for thinking this was. I have really bad "withdraw" symptoms if I'm late taking Florinef, even by a few minutes (I have talked to you about this before) and feel I may have MCAD which the Florinef is treating. I'm in the process of trying to get a diagnosis.

I was carrying around an undiagnosed gangreene abcessed appendix for about 6 months before they discovered what was going on. I was in and out of the hospital several times and given IV antibiotics for my "female infection" which didn't exist. After several months of carrying around the bad appendix, I got a bad cold and was given antibiotics and cough med with codeine. That night, out of the blue, my heart started racing and going crazy. I went to the ER but they couldn't find anything wrong with my heart and sent me home. Later, after my appendectomy, I thought I would be back to normal but I wasn't.

I am wondering with your symptoms if part of it is MCAD, like you said. With that you can have "allergic reactions" or anaphalactic reactions to most any thing. Some of the way you're feeling sounds like my allergic response to peanuts (blood pressure swings, faintness, weakness, shortness of breath, no energy, fast heartrate.) Taking Benadryl helps me when I feel really bad. I know you probably don't want to add more meds into the mix, but I still wonder if an antihistamine might help.

My husband and I had a discussion about this last night. If I am afraid I am going to have an episode of fast, pounding heart, nausea, faintness (not fainting), weakness, and tremors; he says I can make it happen. When I go to the dr. I get so nervous and upset I get to feeling so bad I can barely sit up. I can try all the deep breathing and relaxation exercises I can think of, but the day of the appt. and during the appt. nothing will bring down my heart rate until I leave the dr. office. Even then, my heart rate stays up some the rest of the day.

Also, I have issues with some foods and meds making me feel bad. I sometimes think that if I expect that something I am going to eat is going to make me feel bad I can trigger myself into feeling bad. At that point I really don't know if the food/med did it or if the stress and fear of thinking maybe it could has launched me into an attack.

I was shocked and horrified to read your post. It's hard to believe something like that could happen. It is also terrifying!

Please keep your faith in God and know that I am praying for you.

Hugs to you tearose!!!

TrainBoysMom,

I added you to my friends. Thanks!

Sarah,

I'll check our the websites you mentioned.

I think on Facebook we could be friends and if we want to discuss health issues we could send each other messages instead of posting comments on our wall for everyone to see.

Train Boys mom,

I know what you mean about the high carb meals being major triggers. I have to really watch those. I didn't know facebook had a POTS group. I am on Facebook (jenny marie wickerham) so I will definitely check that out. Thanks!

Sue,

Could you explain what pheochromocytomas and carcinoids are? I have not heard of them. Or is there a good article about them? It would be SO great if I was not truly allergic to all these foods.

Sarah,

Is Gastrocom over the counter? I would like to try it.

Thanks so much for taking the time out of your day to reply. It means so much!

Every day is a guessing game. How will I feel today? What will trigger me to feel horrible next? I felt fine this morning until my husband and I had sex. Then, BOOM! My heart rate went up, nauseated, weak.

Food is also a mystery. I have become obsessive with trying to figure out what triggers attacks. I am supposed to see an allergist soon but don't have an appt. yet.

This spring I got hit with a peanut allergy for the first time and now I don't eat out and I spend an hour in the grocery store reading labels to see if there are any lurking nuts in it (you wouldn't believe what things can contain nuts!) Also other foods seem to trigger reactions. I am a nervous wreck each time I sit down to a meal. I take one bite and wait.... Will my heart start pounding and the bad feelings start? I will eat a meal then feel bad then wonder what food made me feel that way ? My list of edible foods is getting smaller and smaller. I keep loosing weight and having to buy smaller clothes.

My kids are being effected too. My 8 yr. old asked "Mom, is it possible to be allergic to water?"

Do I have MCAD or just POTS? My dr. is making an appt. with Dr. Grubb but who know how long that will take.

Sorry for the ranting, I just needed to vent . Don't feel like I can talk to anyone who understands.

I live fairly close to Cincinnati, Ohio. Could someone tell me the name of a good doctor who could test me for MCAD?

I have the same problem. Even slight startles sends my heart pounding. That's one reason I avoid scary or exciting movies.

I agree. The same thing happens to me. My dentist uses Mepevocaine (sp?) but it doesn't numb me well and even though it had no epinephrine it makes my heart race.

I just wanted you to know you are not alone. I have been having problems with steroids for about four years. It all started with Florinef (which is a steroid too.) I tried to stop taking it, so I didn't take my p.m. pill and woke up at 4:00 a.m. with symptoms exactly like you described. I had high blood pressure, heart racing and pounding horribly, so weak I couldn't walk to the bathroom. I went to the hospital, but ended up just sitting in the parking lot and called my dr. The next morning, still feeling just as horrible, I went to see my cardiologist. He couldn't figure out why I was reacting so severly and advised me to continue on the Florinef, but reduce the dose since my bp was 160 over 100 or so. I went home and continued to feel horrible. My husband had to help me take a bath I was so weak. I called my dr again and he prescribed Zoloft to help with the POTS. I tried to take it, but couldn't tolerate it and ended up at the ER with a heartrate of 160.

It took me about 2 weeks to start to feel "normal" again. Now, if I am even a few minutes late taking the Florinef or if I don't take it on an empty stomach (because the food delays the med from getting into my system) I experience the above symptoms again. I have asthma and am also on a steroid inhaler, Pulmicort, and a steroid nasal spray, Rhinocort. If I miss a dose of these steroids, I feel all those horrible symptoms again.

Someone on here suggested that the steroids might have been helping with another condition (MCAD) and when I miss taking them, I am having a mast cell reaction. During one of the episodes when I felt bad I tried some Benadryl. I did feel better while it was in my system. I am considering trying to take Claritan or Zyrtec and wean off the Florinef, but I haven't gotten brave enough yet. I am very intolerant of most meds.

You might want to try some Benadryl, Claritan, or Zyrtec just to see if it helps you feel any better. Hope you feel better soon.

I'd go ahead and use it if you had no side effects the other time. A lot of the side effects listed are for people who take it on a regular basis, not those who use it for a few days. How long are you supposed to take it? When I was on it for a bad cold, the only side effect I had was a few added beats occasionally. I kept taking it for the 5 days though because it really helped my breathing.

By the way, steroids take a few days to kick in and start helping (especially a steroid inhaler). My dr. wanted me to be on the steroid inhaler because the steroid is delivered straight to your lungs so the side effects are minimized. Very little of the drug goes through your whold body that way.

I would if I were you. That way you'll have it on hand if your throat swells too much or you have trouble breathing. It would be terrifying to use it, but it could save your life someday. Hope you're feeling better!

I think Benadryl is what they give you at the hospital. Liquid Benadryl gets into your system faster than the pills. My latest reaction was Tuesday evening when I ate cookies with sprinkles on them. My throat started to feel a little swollen and when I read the jar it said "made in a factory that processes peanuts and tree nuts". I thought I had eliminated all peanut stuff from my house. Who would have thought of sprinkles!?

I had to take 4 more teaspoons of Benadryl a couple of hours ago because I felt nearly as bad as when I ate the cookie Tues. On Wikipedia it said that if you have an anaphalactic reaction, you can have reoccurance for up to 72 hours after you eat the allergic food. It said you can feel better and then feel horrible again within that 72 hour time period without eating the food again.

I am feeling just like you. What is going on? Is there another food I'm allergic to now? What is safe to eat? Do I dare ever eat out again and what about carry-in dinners? It is so depressing Also, my allergist gave me a prescription to an Epi pen jr. (jr., because of my POTS and problems with tachycardia). I would be terrified to use the pen because I can't imagine my heart coping with it.

I am just going to stay on the Benadryl another day or so, then hopefully the symptoms will go away.

Medication sensitivity seems to go with POTS and MCAD. I don't know what causes it. I have just gotten more sensitive to meds over time. It's really hard to find an antibiotic that I can tolerate.

I have asthma and deal with wheezing often. I can't tolerate albuterol or xopenex, but I do use a steroid inhaler. You could try one for 4 or 5 days to get you over the worst part of the cold. I use Pulmicort and have no heart racing issues with it.

I forgot to add that when I get the allergic feelings, liquid Benadryl will calm them down a lot. Did you try it?