It appears to me, from viewing my symptoms, that standing and sitting are causing mast cell degranulation.  Sitting and standing, among other things, is a problem for me.

Is it possible that there is a subset of MCAS patients that have a problem with sitting or standing? Or, does the sitting/standing/POTS problem have another cause besides mast cell degranulation?

I am not understanding why the sitting and standing problem is related to MCAS or how that is so?!  Thanks.

Futurehope, those of us with H. POTS and a Mast Cell Disorder generally have high levels of Norepinephrine. When Norepinephrine (NE) is released, Neuropeptide Y (NPY) is co-released. Both NE and NPY can cause Mast cell degranulation, although NPY seems the more potent of the two.

Hope this helps. It takes awhile.

Gail

You are asking the BIG question on cause and effect, and I don't think that has been answered at this point. Dr Afrin believes all is due to Mast Cells. Vanderbilt "proposes" a Mast Cell Disease masquerading as H POTS. The question in my mind is this: Do all with MCD also have high NE levels? Or are we a subset?  Dr Afrin is testing for NE, and hopefully, he will release a paper before too long.

There is some indication that Histamine 3 receptors are involved in controlling NE, but research on H3 is not very far along.

And yes, NE has some adverse consequences just as MCs do.

Gail

MGC wrote on 12/17/12 at 14:53:03:


To add to the confusion, when NIH tested me for POTS, it is obvious that my NE levels were increased after standing, as if the standing had something to do with it?!  But, maybe the increased NE caused the standing problems instead of being the result of standing?

I am so confused.  Do I have POTS, or do I have MCAS, or do I have both?  Is the MCAS in any way tied in with POTS?  I remember my POTS doctor saying that many POTS patients are "sensitive" to drugs and changes in drugs, so maybe many POTS people have the characteristics of an MCAS patient?  But why?  This is so confusing.  

It's a good question but don't think it changes too much treatment wise as the scientists don't have it all figured out.  Personally, I say I have POTS and MCAS. They don't always flare at the same time and seem to sometimes need different things, but they both feed off each other.

I agree with the proposed theory that they are inter-related, but time and science will hopefully tell

Anaphylaxing wrote on 12/21/12 at 23:26:49:


Ana, it is so confirming to know that other people are going through similar problems, not that I want anyone else to have the difficulties that I have.  I, too, believe I have POTS and MCAS.  How they are related, I have no idea, but in me they are somehow related.

Anaphylaxing wrote on 12/22/12 at 20:21:23:


You too.  

I thank all of you who posted above.  I have MCAS and although I do not have an official POTS diagnosis, Dr. Greenberger did the "free stand test" and I had an increase of 40 bpm in just under 3 minutes. I was diagnosed with mitral valve prolapse/dysautonomia in 2010. I have yet to get the autonomic testing done.

I feel really bad that many of you suffer from getting symptoms from sitting as well as standing.  I thought I was the only one! For me, I get the same symptoms but just not as rapid as if I were standing.   Thank you for sharing!!

My first ambulance trip when all this started was after I was sitting at a sports event for over two hours...my second trip was sitting in a car for over 2 hours.... both times my BP was around 240/150.  Interesting, isn't it??

When I had an appt. with Dr. Afrin I asked him if there was a connection between the two syndromes. He said there is a definite connection but they are not sure what causes what and why.  He feels that if you get the mast cell disorder under control, the POTS will eventually be controlled as well.

I just got back from Boston two days ago from an appointment with Dr. Castells (a referral from Dr. G because of the possibility of the POTS). I asked her if she thought the two were connected.  She said, "Histamine release causes the POTS symptoms".  (Although she also stated that there are patients that do NOT have elevated histimine levels and still have POTS!!....about 20 % do not vs. 80% that do).  Don't quote me on that as I have nasty memory issues and lots of brain fog!!  I do know there has been a study done and there is an article stating the findings.

I think you are right on Ana.....they don't really know YET.  I am actually very relieved that they believe there is a connection.  For me anyway, I feel like I have given up every trigger I know that can cause mast cell symptoms, yet I still have trouble keeping the POTS symptoms under control.  I kept feeling like it was something I was doing wrong.  I am now learning to distinguish between the autonomic "reactions" and the mast cell reactions....and when I keep my MCAS under control (as much as we can keep it under control that is) then my POTS gets better with time.  

As Ana stated, hydration is HUGE!  Any time we become dehydrated we put ourselves in grave danger!  I think that hydration and exercising as much as our MCAS allows us to is critical.

Bren, I find it very interesting that you have high epinephrine levels.  Mine have been consistently high for over a year.  Sometimes it gets over the 600 range (normal 0-110).  Dr. Afrin thinks it could be "just another variant" of mast cell disease.  What has your Doc said about your levels?  How is your Norepi and dopamine levels?

Good question Futurehope, how is it that sitting and standing cause us to degranulate?  Maybe it's just that our blood pools and then we get tacky and then our body is physically stressed.  And we know what happens when we get physically stressed!! Big time degranulation.  You are right, it is all so confusing!!

I too have trouble with places that are loud and also places that have what I would call too much stimulation ...like music AND lights flashing AND people talking, etc.  I thought I was having seizures at first, but after reading info about POTS, I think it's the autonomic "stuff" that kicks in.  I respond by getting the "visual symptoms". They scare me the most.....tunnel vision, "black hole" vision in combo with blurry vision.  I now know to close my eyes, lower my head and breathe deeply.  Hummmmmm  the things we learn to do to keep ourselves safe (and sane, right?)

Gail...I need to look into the NPY.  My nor-epi levels are always normal but I have never had them done standing.  Interesting?? I would like to know more about that.  Don't most people with MCAS have elevated nor-epi levels?

Thanks for all the great information!

Merry Chirstmas to all!!  Take care.....stay well. Hugs, Lynda