Where To Go From Here?

[Ashelton80]

Hey guys,

Just wanted to get your opinion on where I go from here. I have been dealing with POTS for about 3 1/2 years. I have not gained normal function back during this time. There was a period last year where I removed gluten and dairy and started exercising and got much better. The best I have felt was after soaking in the ocean down in Florida for 4 days. I woke up feeling like a brand new person. No more head pressure and I had energy for the first time in years. The effects eventually wore off, but it did last longer than i expected.

This year has been a tough one. I have removed gluten, dairy, eggs, corn, chocolate and coffee now from my diet. I feel like I am constantly adding new foods to the list. It definitely helps, but obviously I worry that more and more foods will just continue to be added due to intolerance. I weigh 110 lbs and am 5'8 so I don't have a lot of room as I am underweight as a result of POTS. I exercise, but constantly feeling as if I am always starting over with exercise. It definitely stabilizes me and helps, but it just seems like the food. I need to keep adding more and more to get the same effect. I actually sleep pretty well and always try to be in bed asleep by 10 pm. I juice carrots, drink green drinks and take vitamin d. I never eat processed food or sugar. I try to practice biofeedback several times a week as I am one of the people that spent 2 weeks in Dallas learning how. I was also one that didn't get dramatic results. It's frustrating to see all these people and the videos that say they have their life back. I just don't get it. I feel like I do everything right, yet I still barely function.

I have called my doctor at Vanderbilt that I haven't seen in two years. I know she will throw some sort of medication at me. I also emailed Dr. Afrin last week and told him my symptoms and story. He told me I sounded like a classic MCAS case. Of course he doesn't have an appointment opening until mid February. I also have an intergrated medical dr appointment mid January.

All that to say, is I am confused at which directions to travel. Traditional MD with normal meds for POTS or Integrated/Alternative. The lifestyle stuff just isn't cutting it anymore!!!!

[Katybug]

Ashelton,

I was going to ask if you have tried a mcas drug regimen. I think if you might have mcas its worth a try but you still need to avaoid known triggers. But maybe the combination of treatment and avoidance is what will give you the edge. I never feel like ruling out traditional or alternative medicine is a good thing. They both tend to have something to offer and the good alternative practitioners that I have worked with always included traditional medicine when it had something to offer.

[bebe127]

Ashelton,

I'm so sorry you are having a time of it. I don't have any advice, but just wanted to say that you sound so much like me, although I have made no changes in diet. I was diagnosed 3+ years ago as well with POTS. Don't know what kind or how I got it and no doctor has ever suggested any tests to find out. I am not educated enough (even though I try to read as much as I can about this) to know what tests to ask for. I do know that like you, when I exercise, I feel better, even my husband thinks so. Though through the years exercising has dwindled as I am so fatigued after just a short yoga and I'm so tired and feel yucky all the time. It's so hard to get up and do anything. I also suffer from migraines and have for years. Been to several doctors to no avail. No one can tell me why I get them and I haven't found any medication that even touches them. I currently have one now. I haven't had one in months and I still can't figure out the trigger for them. I also have lost weight because of this, although I think it is the lack of eating that is causing mine. I just have no appetite and much of the time feel nauseous, so I don't eat very well as a result.

About the MCAS, is this Mast Cell something or other? If so, how is one tested for it? I am thinking about going to a new EP in the spring (the first doctor I have found in our area that even knows what Dysautonomia is as he diagnosed and is treating a friend's daughter) and want to compile a list of my symptoms as well as questions to ask as to what type of POTS I have and hoping there is a better way of handling whatever it is that I have. I am sick and tired of being sick and tired.

I am sorry that I don't have advice, but want you to know that I know how you are feeling and hope that you get some answers and relief soon.

Here's to hoping you have a symptom free day

Bebe

[Ashelton80]

Katybug,

I have not tried the MCAS drug therapy yet. You think it sounds like mast cells? I'm not exactly what the protocol is it other than just zyrtec/zantac and what doses? I always hate to experiment without being under dr's orders, but those 2 drugs are OTC and benign so I guess it's worth a shot. With my food intolerances piling up, I am starting to think more and more in that direction. I've also had a few scenarios with dust/mold and ammonia gas that landed me in the ER with crazy high vitals that IV saline really didn't help.

Problem is I don't really have any outward signs of autoimmune type illness. No rashes, no hives, no anaphylaxis, normal ana's, etc. I have broken out in hives twice, once over a cat and the other a dog, but that's it. I am definitley hypovolemic but I've heard Mast Cells can be the underlying cause of that as well. Either way, it's terrible to basically become scared to eat!!

bebe

Not sure how it's tested. Serum tryptase maybe, but I think Dr. Afrin tests a lot of different things. I really wish these doctors weren't on such a long waiting list! 2 months seems like forever when all you want to do is live life.

Thanks for both of your responses.

Ashley

[Christy_D]

Ashley,

My son has MCAS and is a patient of Dr Afrins. You can try Zantac/Zyrtec or Claritan/Pepcid. The Claritan is 10 mg twice a day and the Pepcid is 40 mg twice a day. For Zyrtec, it is also 10 mg twice a day and I believe the Zantac is 150 mg twice a day. So, from what I can tell, it is a double dose of the H1 and a quadruple dose of H2.

Christy

[Chaos]

Ashelton- Interesting post and one I can relate to. I have avoided eliminating certain foods completely from my diet for exactly the reason you're talking about. It seems like my body is sensitive to so many things and if I give it an opportunity to be even more sensitive it will take it and then some. My theory is that if I eliminate something completely, then I'll just become sensitized to something else. So I keep trying to just eat a wide variety of things and not too much of any one thing.

I think Katybug is correct in saying though that may want to incorporate both western and "complementary" medicine techniques. I don't think this is a disease that's going to be cured solely by just one or the other- at least not in my experience. Frankly, haven't been cured doing both types of things either, but have seen some improvements that way.

It's so hard when you have those good times and think you have it figured out and then crash back down again. Sorry you're back down again.

[bebe127]

Might be a dumb question, but I'm going to ask anyway. I have printed out some medical journal articles on MCAS that I have yet to read (but will shortly). My question is...what is the correlation between MCAS and POTS. From what I've read briefly MCAS has to do with allergies and histamine, is that correct?? Can POTS symptoms be from MCAS or the other way around?? Another dumb question...could I take zyrtec/zantac and be free of this craziness?? I certainly do not mean to minimize anyone's symptoms and/or treatments and hope I haven't offended anyone. Like everyone else, just trying to search for answers.

BTW, what does a "classic MCAS case" present with?

Ok, I'm going to attempt to educate myself on MCAS now.

[bebe127]

I did find the following article on MCAD:

http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdf

Interestingly enough, I found that I have most of the frequent signs and clinical symptoms found in Table 3, however many of them are the same for POTS.

Hmmmmm.....any thoughts??

[Katybug]

Ashelton,

I don't know if its MCAS but there is plenty of anecdotal info linking MCAS and POTS so given your rising number of food intolerances, it seems like you should investigate it. I don't know what doses you should take as my immunologist has me on a prescription h1 and h2. But you may want to hold off on even trying OTC treatments if you are seeing Affinity soon.

Bebe,

The link between POTS and MCAS hasn't been clearly defined yet but yes some people do experience significant improvement once they start an MCAS regimen along with eliminating their known triggers. If you suspect MCAS after your reading, you should see an immunologist familiar with the syndrome.

[Christy_D]

Bebe,

Dr Afrin told us my sons POTS was a symptom of his MCAS. So the MCAS is the primary illness and the POTS is secondary. MCAS isn't all about allergies. The mast cells behave badly and 'dump' their chemicals..ie histamine,PGD2, heparin.etc..over 200 receptors that can't all be tested at this point. His Heparin levels were 8.5 times to high and PGD2 2.5 times to high. We haven't found any known triggers and some people never do. His histamine level was on the very high end of normal, but he was on doxepin at the time of testing so that may have skued the test.

Dr Afrin has a really good lecture on the internet with slides that is very easy to follow.

http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf

Christy

[bebe127]

Thanks so much Katybug and Christy!! I will definately look at the video. Might I ask, how did you even know to look for this? Did a doctor suggest it or did you do your own research and go from there? Again, thanks a bunch!! This is exactly why I love these forums, so many questions, answers, and directions to go. It is such a blessing to know that I'm not alone

As I've said before, I was diagnosed with POTS via TTT 3+ years ago, however no doctor (not even the dx one) has really treated me, with the exception of my GP (began seeing him approx. a year or so after being dx) who has about 5 other POTS patients. Even still, no doctor has ever looked into why I have it or how I got it or even if there are underlying issues nor have they tested to rule other issues out. It has all been left up to me to research on my own and figure this whole thing out.

Blessings to you both!!

[Christy_D]

I believe it was brought up in a previous post some months back. One of the other members with MCAS I think originally posted the link. It is a written lecture, not a video, but it is easy pretty to get through. It looks like a powerpoint presentation.

The lecture starts on about page 5.

[looneymom]

Thanks for sharing the article about MCAD. I will also look at the powerpoint. Do patients with MCAS get better on medications or is this a life long illness to deal with?

[Christy_D]

Like POTS it can wax and wane, everyone is different, and some people seem to get much better. The list of medications to try is very lengthy. Some people find the right medication and feel better, but Dr Afrin said there are some that don't find relief with medication. So far, my son hasn't found any relief but we have a long way to go with trial and error on meds. It is just so time consuming, weaning up ..trying a med for 30 days..then weaning back down before going on to the next med.

[Katybug]

Beiber,

I heard about it here. Then I did my own research and then sought out a doctor.