Sick And Tired Of Being Sick And Tired

[jenwic]

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.

[MamaTrain]

Jenwic-

I so feel your pain...as many on here do! It's so frustrating trying to plan your life around this. I am often set off by sex and it drives me crazy cause in my mind I want to but then I start thinking about how it will make me feel etc. Morning sex is out...too much other hormones are starting up in the morning! LOL! When I was talking to my cardiologist last week about why the symptoms come when I eat she said it was about blood flow. I told her I had already figured out that big meals and high carb/sugar meals all set me off so I avoid those. In the beginning it would happen with in minutes of eating ANYTHING! I think the ANS gets so whacked out that even the slightest thing like a change in blood flow or even blood sugar rising can really set someone off. I live on protein smoothies! Easy on the stomach! I just wanted to post and say you're not alone and to keep the faith. Are you on any other websites for dysauto/POTS? There are some good ones on Facebook. Hope you can find some peace in your POTS today.

KC

[sue1234]

I just typed a long note, and lost it, so I'll keep this one short. Pheochromocytomas react to foods high in tyramine, such as cheese, chocolate, wine, aged things, etc. Also, carcinoid can react to foods with high tryptophan. Sex can trigger both of these things, along with stress, getting hot, etc.

I know that things like bananas, walnuts, avacado, and other "normal" foods are triggers for these things, so you just never know why your body is reacting. I guess what I mean is, it may not just be an allergy, but maybe it stirs up an "amine"--like a catecholamine or serotonin.

I have gotten to where I don't assume my reactions are "just POTS". I do testing to see if any of these markers are high. It sure can get complicated!

[Sarah4444]

The MCAD thing is still frustrating me, in terms of being so hard to define and diagnose, but I was having terrible trouble eating what seemed like everything too. This is better for me now that I take MCAD meds. I think taking Gastrocrom before I eat is partcularly helpful in this regard.

This is frustrating, complicated and exhausting.

[jenwic]

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!

[MamaTrain]

Jenny,

I will send you a friend request on Facebook!

KC

[sue1234]

I have a question regarding the Facebook option. I just got on Facebook a couple of months ago, and I "vowed" to myself that I wasn't going to talk about my health issues in public. I don't want to be known as the "sick" one in my group of family and friends. So far, I have kept the talk about anything else except my health. Is there any way to join the POTS Facebook without it getting plastered all over my Facebook wall? If so, I'd love to join in. Otherwise, I guess I won't.

[Sarah4444]

Gastrocrom is a prescription medication - for more info about it, take a look at one of the mast cell sites like www.tmsforacure.org. There's also info on the site I belong to now, the Mastocytosis Society of Canada.

sue1234 - I have been feeling the same way about Facebook. I am not on it yet, and don't want all my health and personal info in the public arena (I think I'm too old for that "full disclosure" way of doing things). But there's a group of people there with POTS/MCAD/HDCTs and I wish I could join - I guess you could always sign up to Facebook with a pseudonym and join that way?

[jenwic]

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.