This Mcad Thing...... Again.......

[hilbiligrl]

I can't remember who it was that mentioned to take a zyrtec and a ranitidine every morning for MCAD. I have no idea if i have it, but i suspect i do. 6 or so weeks ago, i started taking one zyrtec and 150 mg of zantac (ranitidine) and I did notice improvement.... but i still remained more bedridden than not. So, a couple weeks ago, i ran out of money and out of zantac, so i stopped taking both.... and it seemed i lapsed into what i call 'ER days' or severe long lasting episodes, where the bedridden part increased to 90-98% of the time. Then 3 days ago, i start taking the zyrtec again with the zantac and the very next day, im kinda 'pulled out' of the severe paralyzing, long-lasting episode and today i feel even more better. I honestly can't say for sure that this is MCAD, and can't predict if i will continue to feel ok (my ok, or good days, or equivalent to a normal person's bad days), as, with this disase, nothing is predictable for me.

Anyways, to get to my point, i have a heart doc appt which is the first heart doc appt since diagnosed with autonomic dysfunction and another appt with a new family doc a few days after (i fired my fam doc of 10 years a month or so ago and submitted my case to a reknown rare case doc in my area, who screens his patients first and he accepted me.) For the past 2 days since starting back on the 'mcad regimen' so to speak, im not as symptomatic..... so, should i stop the zyrtec/ranitidine before i go to the docs appts in order to possibly be more symptomatic? And if so, should i just stop now, since the appt is a week away?

Again, not sure if the zyrtec/ranitidine is what's causing my good days.... but it kinda seems like it. But don't get me wrong, i still have severe episodes while taking it, but the 'whole picture' and vast array of severe symptoms seems to lighten up quiet a bit, but my body still tells me that i better take it easy.

My goodness i hope this all makes sense to someone.....

thanks everyone...

hilbiligrl

[hilbiligrl]

ONE MORE IMPORTANT THING.....

Here's my agenda.... Heart doc appt next week (local).... new family doc appt (with rare case doc) a few days after (local)..... then vanderbilt autonomic clinic feb 17 (6 hours away)..... then another heart specialist doc appt with a diff heart doc after that (same group as first heart doc, but this appt would be with one of 2 specialists inside the heart center and its local)......

ok, of all these docs i set up..... who would i get to test me for MCAD and how do they test?

many thanks

hilbiligrl

[lieze]

I was prescribed Prilosec by my family doctor-she felt I was just histamine sensitive and wanted to "cure" me with an H1 and H2 but I was too afraid to try the Prilosec because I read that it can lower your bp as a side effect.

Now I just looked up the affect of Zantac on blood pressure and they aren't sure that there is any effect but they said it does lower heart rate.

So it can cause bradycardia.

I really don't get the connection between how these drugs for the stomach would effect the heart rate or bp like that?

[juliegee]

Hey HB Girl-

Makes sense to me LOL. Really, it does. That regimen (plus a few more meds!) has made a world of difference for me. I don't see why you ned to back off of the drugs before you see your new doc. Your description of symptoms before & after should be enough for him/her to get the clinical picture. I've just had an allergic/POTS reaction today & see NO reason for you to have to go through that to prove something to a doctor.

Of all of the specialists you've mentioned in your post below, I would guess that you'd get the most help at Vanderbilt. They are well aware of the MCAD/POTS connection. I'm not sure if they will officially DX you there, but they can certainly document things. It will be very helpful for you to go off of your meds before the testing there. I'm sure they will advise about that.

Feel better & keep us posted on your appts!

Julie

[juliegee]

I was prescribed Prilosec by my family doctor-she felt I was just histamine sensitive and wanted to "cure" me with an H1 and H2 but I was too afraid to try the Prilosec because I read that it can lower your bp as a side effect.

Now I just looked up the affect of Zantac on blood pressure and they aren't sure that there is any effect but they said it does lower heart rate.

So it can cause bradycardia.

I really don't get the connection between how these drugs for the stomach would effect the heart rate or bp like that?

I'm confused too. Prilosec is a PPI, not an H-2. It will not help your autonomic symptoms, but may help with stomach acid/GERD.

Your family doctor sounds very progressive and her regimen is certainly worth a try. A zyrtec (H-1) and zantac (H-2) woud be a great way to give it a try.

All the best-

Julie

[crowebirds]

I would not stop taking the meds unless specifically asked to prior to your visit. Also, I would ask all the doctors about MCAD. The one doctor that you expect to research it may be the very one to blow it off as unimportant. Sorry, but my experience has left me a little jaded. All three of the medications you have taken for MCAD act on Acetylcholine receptors. I believe it slows the production of Acetylcholine. Not everyone with MCAD/Urticaria responds to the same meds. My daughter responds well to Singulair, Brompheniramine and Hydroxizine. She uses only the first two during the summer and all three during the winter, the colder it gets, the worse it is for her. The last two act on Acetylcholine, just in a different way. I am trying to figure out in what way as it may help find a definitive diagnosis. I will have to get involved with Chemistry again. Not only do the meds help her urticaria, but also some of her DYS symptoms. Go figure, Acetylcholine stimulates issues with both MCAD and DYS, no wonder so many DYS folks also have MCAD issues. Now we need a researcher to help figure this one out.

I am so glad you have found some relief.

Robin

[lieze]

Oh I just checked my bottle and it was Pepcid.

I am not remembering well these days.

[juliegee]

Pepcid IS an H-2 Blocker. My memory is shot too

I don't know exactly how these meds help, but they do- for many. Some doctors surmise that the blood volume loss in autonomic dysfunction COULD be from leaky blood vessels set off by an allergic reaction or overly reactive mast cells. If you can stop the effect of the histamine, you can stave off the autonomic symptoms- high HR, low BP, etc.

It's certainly worth a try. Just take BOTH meds at the same time & see if you have an improvement. I did!

Julie

[hilbiligrl]

Thanks everyone for posting. This makes i think day 4 of going back on the zantac and zyrtec. I still am showing improvement on over all 'extra severe symptoms' that seems to be set aside from the normal ones associated with the autonomic dysfunction itself. For example..... i was in this constant severe episode for several weeks, while i wasnt taking this regimen.... its kinda hard to explain fully. Today i still remain less symptomatic, but still headache, severe exhaustion, hurt all over and a few other symptoms that always seem to remain 'baseline' it seems. But, the extra severe symptoms such as : focus, memory, confusion, the head to toe 'sickly rotting' feeling, the restless legs feeling, the eye pain, nausea, and many more.... those seems to have subsided and now for 4 days my 'level of severity' has lowered and things have been bearable to the point of psychosis for the longest time.... i was in such a poor state that i decided to take down my FB for good due to being so upset at seeing so many people living normal and having fun, when i am basically paralyzed a majority of the time, along with a milion severe symptoms.

I still can't stand for more than a couple of mins or so, or seem to be able to do much, and a few other things, but i don't feel so horrid and scary. It seems like where there were 20 symptoms on a daily basis, in a severe level.... it has now cut down to maybe 10 daily, and the severity has dropped to a level i can tolerate for the most part. (im telling ya, i was unconsolable for many many weeks there i was so bad). I do hope these 2meds are what's causing the difference and that this is just not another 'cycle'. And i only hope i can start being able to get up and take showers and maybe accomplish a few things around the house. but, i think i'll set my goal as: making sure first and foremost that i dont miss any doc appts next week..... all else, i can't push it. my body says 'its not ready'.....

mack's mom: it may have been your posts that i caught on to couple months ago about the zantac and zyrtec and the mcad.... i had looked it up (as every post that seems 'right on' with what i do, i will research the crap out of whatever is mentioned)... but i had looked it up and it made so much sense. Your recapping in this post refreshed a bit of that memory (and yes, despite how bad or how well i feel, my congnitive function still remains quiet poor). But, i intend to re-research it, especially before i go to doc appts next week and week after.

i will push each doc to test, and see who will actually agree to it..... I have battled it out with my old doc for years, she just wouldnt agree to any more testing. I had to push her to test for metals, toxins etc finally several months back due to having breast implants.... (many people kept insisting this was caused by my saline implants...) but all those tests showed up normal..... but after that, my doc would even refuse to write a script for stomach meds, phenergan, etc. The only thing she would prescribe was my inhaler. so, trust me when i say, i have been through the mills and back with my doctor and those specialists and er docs who have been blessed with my presence! lol. We have a heart center that's ranked in US's top ten, as well as a pharmacy school and medical school here in our area, yet the docs still remain as close minded and conventional as ever! And their egos, can't get through them..... such a sad thing.

I will keep everyone posted, as i have such a big mouth.... lol

hilbiligrl

[hilbiligrl]

Thanks everyone for posting. This makes i think day 4 of going back on the zantac and zyrtec. I still am showing improvement on over all 'extra severe symptoms' that seems to be set aside from the normal ones associated with the autonomic dysfunction itself. For example..... i was in this constant severe episode for several weeks, while i wasnt taking this regimen.... its kinda hard to explain fully. Today i still remain less symptomatic, but still headache, severe exhaustion, hurt all over and a few other symptoms that always seem to remain 'baseline' it seems. But, the extra severe symptoms such as : focus, memory, confusion, the head to toe 'sickly rotting' feeling, the restless legs feeling, the eye pain, nausea, and many more.... those seems to have subsided and now for 4 days my 'level of severity' has lowered and things have been bearable to the point of psychosis for the longest time.... i was in such a poor state that i decided to take down my FB for good due to being so upset at seeing so many people living normal and having fun, when i am basically paralyzed a majority of the time, along with a milion severe symptoms.

I still can't stand for more than a couple of mins or so, or seem to be able to do much, and a few other things, but i don't feel so horrid and scary. It seems like where there were 20 symptoms on a daily basis, in a severe level.... it has now cut down to maybe 10 daily, and the severity has dropped to a level i can tolerate for the most part. (im telling ya, i was unconsolable for many many weeks there i was so bad). I do hope these 2meds are what's causing the difference and that this is just not another 'cycle'. And i only hope i can start being able to get up and take showers and maybe accomplish a few things around the house. but, i think i'll set my goal as: making sure first and foremost that i dont miss any doc appts next week..... all else, i can't push it. my body says 'its not ready'.....

mack's mom: it may have been your posts that i caught on to couple months ago about the zantac and zyrtec and the mcad.... i had looked it up (as every post that seems 'right on' with what i do, i will research the crap out of whatever is mentioned)... but i had looked it up and it made so much sense. Your recapping in this post refreshed a bit of that memory (and yes, despite how bad or how well i feel, my congnitive function still remains quiet poor). But, i intend to re-research it, especially before i go to doc appts next week and week after.

i will push each doc to test, and see who will actually agree to it..... I have battled it out with my old doc for years, she just wouldnt agree to any more testing. I had to push her to test for metals, toxins etc finally several months back due to having breast implants.... (many people kept insisting this was caused by my saline implants...) but all those tests showed up normal..... but after that, my doc would even refuse to write a script for stomach meds, phenergan, etc. The only thing she would prescribe was my inhaler. so, trust me when i say, i have been through the mills and back with my doctor and those specialists and er docs who have been blessed with my presence! lol. We have a heart center that's ranked in US's top ten, as well as a pharmacy school and medical school here in our area, yet the docs still remain as close minded and conventional as ever! And their egos, can't get through them..... such a sad thing.

I will keep everyone posted, as i have such a big mouth.... lol

hilbiligrl

ooops... i re-read my post... i highlighted in red what i messed up.... i had meant to say that before being on the zantac and zyrtec both times, that my symptoms were so numerous and intense and severe that i was almost in a state of psychosis..... and now it is bearable again....

so sorry, it seems i make many mistakes anymore when communicating....

hilbiligrl