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~Naomi~

Anyone Feeling Better With Mcad Treatment?

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Just wanted to check in with the MCAD people since many have made this connection. Are your POTS symptoms better with treatment? If yes, what's better specifically? If not, what are your thoughts about this?

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Hi Naomi! Specifically my GI symptoms (upper and lower GI) and general itching all over are better with MCAD treatment. I've been in a period of relatively fewer/less intense migraines but not sure if that's related to the MCAD treatment or not. HR and BP variability, fatigue, weakness, breathlessness, are all still issues for me even with the MCAD treatment.

For me, I think MCAD plays a role in this but don't think it's necessarily the CAUSE of my POTS. Seems like if I control allergy and MCAD type symptoms it helps with the overall POTS symptoms and certainly controls my MCAD type symptoms of GI stuff, hives, angioedema, rashes, etc.

Are you still doing the IV saline infusions regularly?

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Hmm, well at least it's helping some things. Too bad it doesn't sound like it's touching the autonomic symptoms. I've done the saline 3 times and it did nothing. I'm actually going to do a separate post about this.

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My son starts his first full dose of aspirin tomorrow, so then we have to wait 30 days to see if there is enough improvement. He has had a little improvement, but not much. Right now his sleeping hours are all messed up, waking up at 10pm and falling asleep at 2 in the afternoon. We are scheduled to go back to Dr Afrin in late July.

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Naomi,

I am currently take a H1/H2 combo 3 to 6 times a day as well as singulair 10 mg up to 2 times a day, and hydroxyzine 20 mg/zantac each night before going to bed. My H1/H2 combo is usually Zyrtec 10 mg and Zantac 150 mg, but I have been known to take fexofenadine (generic Allegra) 180 mg and famotidine (generic pepcid) 20 mg during the mid day just to mix it up and use up these pills. I'll take a 325 mg apirin if the H1/H2/singulair doesn't break my disabling headache and dizziness and 5 times now the headache goes away within 10 minutes. I also take dye free diphenhydaramine for significant reactions.

While it has taken a months to sort out the formulations I can tolerate (can't tolerate Yellow #5 or #6, Red #40 or Blue #1) so many of the store generics are out, unless they have iron oxide dyes, which I seem to tolerate. I am still awaiting results from the labwork from Dr Afrin's appointment and should be hearing soon which meds he suggests. Meanwhile, he told me to hit the antihistamines HARD. And yes, I am MUCH better on these meds than without them. Saw significant improvement with hydroxyzine, the parent of zyrtec, likely because it crosses the blood brain barrier, as well as singulair and asprin, because I likely have increased prostaglandins (based off of clinical picture).

Lyn

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I don't think it's a quick process, unfortunately. I have been on the treatment protocol for about four months, and have not seen much improvement. That being said, I do now see tiny (5-10 minute) breaks between epidsodes of feeling awful. I'm starting to think that the "chronic fatigue" that I was previously thought to have was actually back to back (to back to back....) reactions. My immunologist today told me that it can be a very, very long process of finding the right cocktail for your symptoms, as everyone is so different. I'm about to start Ketotifen, and I have heard from other patients that it drastically helped their dizziness and blacking out. Here's hoping! :). As well, my list of triggers is a mile long. for example, I used to think that I was having POTS/dysautonomia symptoms from sitting for 30 to 45 minutes or so at a time, but upon careful journaling I've realized that it is always an outside factor that is causing a reaction (smell of food cooking, furnace cutting in, one of my kids sitting snuggled up beside me(pressure), eating, etc.).

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Maybe too early to tell in some cases then. Well, please keep us posted as time goes on. This is an area of interest to me.

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