Do Mcad Meds Speed Up The Heart?

[sue1234]

I want to go eat with my extended family for noon today, but the heat is a BIG issue. Also, my family is not "sick friendly"; you can't imagine the times I've heard talk of "so and so is such a hypochondriac". So, I don't try too hard to explain my issues,as all of you know, IT IS COMPLICATED. Most times, I just feign off going by saying that my husband and kids are eating as a family here at home. It is miserable to go somewhere where you are pretending that everything is fine, and your symptoms are ramping up, firstly because of the stressful situation, then secondly, due to the environment(air fresheners, too hot, etc.). I have tried explaining some of what my issues are, but even my own parents kind of get a glazed-over look, and then change the subject quickly. I eventually will find a doctor to address possible MCAD, but for today, I am willing to try one med that might make a dent in my symptoms(if they are MCAD related).

1. Do these make your heart race?

2. Which one would be a "go-to" first med to try?

To give you an example of how my family sees this, my Mom tells me every year on my birthday, "If you want to go eat at XXX restaurant, I will buy you lunch". I tell her the same thing everytime, "I can't walk all the way in their(it's in a casino, so lots of walking), and I can't sit up in a chair for more than a five minutes". And, she just says, "Oh, well". And that's that! It's like she doesn't believe that I have an issue! It's so hard with this illness when your family doesn't even try to understand, much less help in ANY form. So, when I mention here that I've gotten used to being a recluse(almost, not totally), you can see why. People just don't care. In five years, not one family member has offered a meal, etc. I couldn't imagine if one of my kids had this and I was well--I would be helping out probably on a daily basis by just offering to do little things here and there.

I'm so sorry--this turned into a pity-rant! I guess I am just torn on doing the family thing today. I'd like to go, but I hate being there.

[Sarah4444]

I know how complicated and frustrating this can be, and I am sorry you are not getting enough support from your family.

With regard to meds I am still a work in progress, but for me it went like this: I was already taking synthroid, so I knew the awful symptoms last summer/fall weren't due to hypothyroidism (couldn't stand up at all, bp crashing even when supine, tachycardia 200 bpm, crawling to the bathroom and back to bed). After starting midodrine I had some mild improvement, but still had ongoing severe nausea and diarrhea, severe OI, brain fog, etc. I started over the counter Zantac and Zyrtec/Reactine and did slightly better again. Saw dermatologist re masto, increased Zantac to 150 mg twice a day and Zyrtec to 10 mg twice a day and added Nalcrom/Gastrocrom 200 mg four times a day (diluted in warm water 20 min before eating) - more improvement. Added doxepin 20 mg before bed and could finally sleep again - hooray!

But I still had severe, ongoing OI/POTS and many other symptoms less severely. As I just discussed with Chaos, I can't tell what causes what, but since I was seeing gradual improvement with the MCAD meds I added Singulair 10 mg - no obvious/immediate improvement. My midodrine was increased by autonomic doc to total 35 mg/day and that helped a bit. I was able to start exercising a tiny bit more vigorously at this point and then noticed on these days would have predictable anaphylaxis at the end of the day. Told this to Dr. Castells, she increased Nalrom/Gastrocrom to 300 mg four times a day and added Ketotifen 1 mg twice a day - I just did this last change this week.

So now I am taking tons of meds and not very comfortable with this, but seem to be slowly improving (or at least stabilized for now) after 25 years of gradual and then accelerated decline, so I am going to keep adjusting them and trying to get more and more exercise to see where it gets me. Also, avoiding gluten seems to help me - especially with brain fog.

I keep trying to figure out why I got so desperately sick last year, and now I wonder if it was partly due to medications I was taking interacting with underlying medical conditions I didn't know I had. For instance I started taking long-acting narcotics for pain in 2005 - opiates I have since learned, are mast cell degranulators. I tried Cymbalta for pain in Feb/10 and that's when POTS/MCAD became so brutal and obvious that I could basically self-diagnose (my diagnoses listed below are not my own opinion, though, I subsequently saw docs, had TTT, etc.) - waaay too much NE I'd guess. I think I accidentally made my illness a lot worse by taking these meds, and would love to now take none, but hope that stopping the wrong meds and finding the right ones might help turn things around. We'll see I guess.

I hope some day to understand the whys of all this, but it the meantime this is what I am up to.