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MCAS/POTS Patients For the Ones Treated for their MCAS, Has Your POTS Improved? (Read 2948 times)
Futurehope
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MCAS/POTS Patients For the Ones Treated for their MCAS, Has Your POTS Improved?
06/13/12 at 05:18:29
 
This is being posted as a new thread, even though I asked this question on another thread.

Are there any MCAS/POTS patients on here that have had identifiable improvement in their POTS symptoms once their MCAS was under control?

Can I conclude that if one is still suffering from their MCAS/POTS symptoms, that they are not being optimally maintained on their current regimen, and that their treatment needs tweeking?  IOW, how well, or how much better can one expect to feel when optimally treated for their MCAS?

Thanks in advance.  I eagerly await your responses.
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goldielove
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Re: MCAS/POTS Patients For the Ones Treated for their MCAS, Has Your POTS Improved?
Reply #1 - 06/13/12 at 05:28:26
 
OMG for me it has totally improved my symptoms just geting on the right dose, I was one of the people that saw Dr. Blair Grubb wonderful man wonderful Dr. but it was the mast cell meds that helped me not the pots medication. I still take atenlol 12.5mg twice a day I just can't seem too get off of that dose, I do get tachy back not like I used too be. I also have a clondine patch .1mg that made  a big difference in my BP it does sometimes get high and if I am having a bad mast cell day my pots comes back in full force if I am having a day where my mast cells are behaving the pots basically dissappears even the syncope feeling. IT took me a long time too tweek my meds, but pots is not my main problem anymore, its more the other symptoms getting them under control like the diarrhea and bloating and such and even that is better but I think its b/c I am on a good combination for me, I was set off the the other day go figure from some caulking they used while they were fixing my shower I got the tremors which I have not had for months and the tachy but once I left my house and took extra meds i was much better so yes I believe the pots will at least be minimized if you get the mcad under control even Dr. Grubb told me that he said it would not matter if he put me on a large amount of beta blocker I would prob get sicker its the mast cells that are making me have the pots. OK good luck and I hope the pots get better that is the worst feeling I had it for basically two years went all over now I doubt I would ever fail the tilt table test in fact unless I was flaring I doubt I would even get tachy maybe just a little
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Futurehope
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Re: MCAS/POTS Patients For the Ones Treated for their MCAS, Has Your POTS Improved?
Reply #2 - 06/13/12 at 09:11:34
 
Well, bless you heart for responding, Goldielove.  I do believe there is hope for me.  

What is fascinating is that when I mentioned my possible MCAS diagnosis on the DINET forum, there was one skeptic who thought MCAS was being overdiagnosed in POTsies.  

I'm remaining hopeful and will return to Dr. Afrin in about three weeks.

Who was your MCAS diagnosing doctor?  Just curious.
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Maiysa
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Re: MCAS/POTS Patients For the Ones Treated for their MCAS, Has Your POTS Improved?
Reply #3 - 06/13/12 at 10:02:24
 
Hi Futurehope,
I actually had a sudden onset of POTS, more of a hyper type which some doctors dismissed since my blood pressure was going up instead of down, but sometimes it would drop.  So it was confusing for doctors.  I was told I had a different form of POTS while in the hospital but had so many other health issues at the time, that by the time I got to a doctor for it, 4 years later, it had resolved but turned into autonomic neuropathy and orthostatic intolerance.  At the time when I had POTS, I had a severe fungal lung infection which triggered the POTS I think.  But also had toxic thyroid and thyroid cancer, but once that was resolved, that's when the POTS resolved, but the orthostatic intolerance was very difficult still.  I couldn't grocery shop or barely stand up without passing out. And eating at the table was out.  Anything that required me to be in an upright position for very long was out.  I'm sorry you are dealing with this. It was a terrible time in my life.  I'm not saying it can go away, but it is possible in some cases.  But for me I think the mast cell situation, is possibly a huge contributor.  WE are still out on the fence with the mast cell diagnosis.  Dr. Castells is rechecking my files and I have been diagnosed by two doctors, so it looks very likely. Hopefully you can get this all straightened out.  Hang in there.
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goldielove
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Re: MCAS/POTS Patients For the Ones Treated for their MCAS, Has Your POTS Improved?
Reply #4 - 06/13/12 at 13:42:47
 
Dr Afrin dx me. He is extremely helpful in getting you too try different drugs for me the over the counter drugs were the ones I tweaked a lot if u look at my old posts wow I was not doing well the hyperadnergic pots was my first dx. I kept telling every Dr I saw that I thought I had something wrong with my skin it turned beat red in the beginning I could not even walk it was such a strange feeling going from being extremely athletic too bed bound and not one dr could figure out what I had , I just wish more Drs can be educated in mast cell disease so we do not have too struggle and beg for help. I personally was in the er at least every three days they def labeled me as crazy. I dx the pots told them I had it I researched and found pots and then had the tilt table but not bf subjecting my body too a million harmful tests when I think back I just get angry and sad each step of the way I had too dx myself and not ever give up I had too keep insisting that I had an illness. I have a saying drs are only as good as their tests and basically if all your tests come back no then u have too be crazy not sick . I do believe once you get on the right track of meds for me it seems as my body has settled down I can eat again ugh weight gain I can grocery shop again I can even walk my dog in the horrible heat but that does set me off heat but I can do it without becoming syncope or Tachy . Yes I do believe your name says it all future hope is right.
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cnm1
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Re: MCAS/POTS Patients For the Ones Treated for their MCAS, Has Your POTS Improved?
Reply #5 - 06/17/12 at 06:20:50
 
My daughter has both POTS/MCAD. We also started with Dr Grubb. She takes midodrine, mestinon, florinef. She improved greatly on those but still was having lots flushing and abdominal issues. Lots of new onset allergies. She also took both H1 and H2 antihistamines. She was able to go to college and made it to grad school. (she had been homebound for 5 yrs) She now lives in Boston.
  I started pursuing the MCAS stuff and she saw Dr Castelle. Gastrocrom has helped her alot - no side effects for her and greatly decreased her fatigue. She has been able to cut back on most of the POTs drugs and mainly takes them in the morning now. She has even started running.
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