jpjd59

Wishing you a quick and safe return to your home.

Doozlygirl: Thanks for your input. Regarding the mast cell issue, she has had the tryptase test 24 hour urine test. She has had many other tests for POTS. The tests for mast cell were done through a local lab. I don't know if blood was chilled. Urine was chilled at home but not during the 10 minute drive to the lab. Also, I did notice that on a blood test that she had done at the Mayo that her ANA was high - don't know if this has anything to do with a mast cell issue.

ChristyD: Thanks! I have a call in to my daughter's doctor asking him to check the PGD2 and heparin.

Pam

Has anyone had a normal tryptase test (my daughter's came back as a "3") and a normal 24 hour urine histamine test and still been diagnosed with MCAS?

My daughter has all the symptoms but the test results not confirming it.

Lyn:

She took 1/2 of an Allegra (her allergist recommended she start with that med since she had a prior reaction to Zyrtec). After she took it she felt sick to her stomach, felt like her skin was on fire, and her throat felt tight. (She has had these symptoms before with POTS and with meds - so hard to tell if it is the POTS or the meds causing this)

Julie,

Congratulastions on finding a piece of your health puzzle. It is wonderful when one of us can move our chess pieces forward!

There is tons of great information on this site about mast cell disorders. I have recently been worked up for mast cell activation syndrome (MCAS) and two sites in particular were very helpful for me in the beginning. There is a mast cell disorders forum and The Mastocytosis Society, which includes information on mast cell disorders, including activation disorders.

To add to Christy's post, a tryptase level below 20 will typically rule out mastocytosis for most people. But a tryptase above 1 can point towards chronic mast cell activation. Mast cell activation is the term used to describe the process when mast cells degranulate and dump or leak their granules which contain histamine, heparin, tryptase, prostaglandins, and over 200 other mediators. The diagnosis is made most commonly by a unique constellation of symptoms and laboratory tests showing elevated mediators. Unfortunately there are only a few mediator tests available, but the most common ones are N Methylhistamine (urine and blood), PGD2 or PGF2 (2 different prostaglandin mediators found in blood or urine), heparin (blood). A biopsy sample stained with special stains can also identify misbehavin' mast cells. These tests are very sensitive to temperature or staining technique and are best to be performed by a mast cell specialist and at their laboratory. Most people with MCAS do not have true allergies (mediated by an IgE event) but still trigger similar reactions. But true allergies can coexist with MCAS. These reactions do include symptoms that POTS and other autonomic dysfunctions can cause. Many of the medications used to treat us are also known mast cell degranulators, such as beta and alpha blockers, pain medications such as codeine and morphine based meds, anesthestics, contrast media, etc.

My typical reactions start with flushing, a headache and orthostatic hypotension, many times with an really high sitting BP, which bottoms out when standing and I sometimes get an elevated HR. They get more severe when I start to vomit and I will get chest congestion/tightness, major lower extremity swelling, and angioedema. Histamine causes increased vascular permeability and the liquid portion of blood can escape into the tissues leading to hypovolemia. When I have a really scary reaction, my HR does not elevate at all upon standing, a sign of relative bradycardia. By this time I know to remain laying down and elevate my feet. I am in a full blown anaphylactic reaction and require mast cell medications to stop the degranulaiton before cardiovascular collapse. Since there are so many mediators, there are literally thousands of presentations. My mast cell specialist has seen over 300 MCAS patients and the first 70 patients all had a unique presentation.

During a mast cell flare, any number of symptoms can occur. If the mediators are released quickly, an acute episode occurs. These patients call themselves "shockers". I am a "leaker" where my episodes can take hours to progress, but both can lead to anaphylaxis. There is an autoimmune component to MCAS. If your symptoms subside when you take an H1/H2 combo, then this is telling that your may have a mast cell disorder. There are also many other medications to help stabilize these mast cells from misbehavin' and triggering. And then there are medications to block the mediators from their receptors and hopefully stop the chain reaction.

If any of this sounds familair, then I suggest you check into those sites I mentioned above. I didn't see the connection at first, but several mast cell opatients on this site convinced me to check it out. And I am eternally grateful for their input and prodding. This is why I continue to post about my experiences with mast cell on this site, in case others will see a connection.

Best wishes in connecting the dots.

Lyn

Lyn:

We suspect that my daughter (who has POTS) has a mast cell issue going on. We are waiting for the results of her 24 hour urine histamine test. Her tryptase test came back as a "3". She tried taking an antihistamine last night (and then she was going to gradually add in an H2 blocker) but she said that after she took the antihistamine that she felt awful. Do you know if this happens at first when you have a mast cell issue because your body needs time to get used to the medication?

My mom and I had a major blow out tonight. I got hysterical bc I cannot control my nervous system and he told me my sickness was no different from anyone else's and to suck it up...

Needless to say I equalled for a while and got so depressed.

We apologized but still I know she doesn't understand.

Linj10:

Sorry to hear you are having such a rough time. I have a 23 year old daughter who also has POTS. We had a "blow out" last night also. She always tells me that I don't understand and she's right, she is the one with the illness, but it is also hard for parents to watch their children be sick and sometimes we say things out of frustration that we don't mean. Hopefully today will be a better day for you.

Puppylove:

This was actually the first symptom that my daughter had with POTS. Since then it happens a few times a month. It must have something to do with POTS because she has had her inner ear checked out and everything is fine. Sorry this is happening to you.

Wow, is this a timely subject. Just last night my daughter went in to a fit of rage (and I am not proud to say that I lost my temper with her). This has been happening a lot lately (she was not lke this before POTS). I am trying to figure out if it is the POTS or depression. Either way I want my old daughter back!!!!!

MommaBear:

This is an interesting article (from Europe) that talks about the different sub-types.

europace.oxfordjournals.org/content/13/3/306.full

^Julie:

^{Thanks! Hope you are feeling better soon now that you have some more information.}

Julie:

Great news??? (it's always great to find another piece to the puzzle). I notice that you were diagnosed with autoimmune related POTS by Dr. Goodman. If you don't mind me asking, what was it in your test results that made that diagnosis? (I am suspecting that this is the case with my daughter). We are also awaiting the test results from her 24 hour urine histamine test.

Thanks!

Pam

wow.... AllAboutPeace, thank you for responding! When I posted the extinct of sadness I was feeling yesterday in that thread and then got no response, I felt worse... I have got to do something.. I just don't know what to do.

McBlonde:

So sorry to hear you were feeling down. Hopefully today is a better day for you.

Jangle:

So sorry to hear about the setback. I was really hoping that you were doing well. My daughter went to see Dr. Goodman at the Mayo Clinic in Scottsdale. They ran all sorts of tests that she couldn't find a doctor here (in California) to do. I have heard that if you try to get in to the Mayo Clinic in Arizona it is easier to get in during the summer months. You might give them a call. However, we have found that the traveling and follow up was hard for my daughter so we found a neurologist in California that specializes in autonomic disorders. He is also very good (Dr. Jaradeh at Stanford). The wait time to see him was only a few months.

Good luck!!!

Wow - nursing school, planning a wedding and not feeling well. I don't know how you do it. It seems like this condition goes in waves - you just think you see some improvement and then BAM the symptoms come back (in my daughter's case the symptoms came back even worse than before). I'm not surprised that your emotions are all over the place. The havoc that this condition wreaks on your body causes norepinephrine, etc. to be out of whack. My daughter, who was usually a really easy going person, now has emotions that are out of control.

Try and lessen whatever stress that you can in your life - perhaps that will make you feel a little better.

MommaBear:

That's great news! Just to be able to socialize again is an important thing for a 16 year old. If you get a chance, PM me every so often to let me know how she is doing on this drug. (My 23 year old daughter also has POTS and is basically bedridden and so far has been unable to tolerate any meds).

Pam

Blue: interesting that both you and my daughter got sick after massages. Do you have a confirmed mast cell issue? If so, what are you doing for it?

Furgalmama: who knew snuggling could be dangerous to your health (LOL). Glad to hear that massages help you.

Jen:

Hopefully this is a sign that more good days are coming soon!!!

Kayla:

So glad to hear you are home. My daughter had to go on birth control when she was about your age because she was having such painful periods and she would get so sick with her period that she would end up in the ER. The birth control pills have helped her sooo much!

I hope you are feeling better soon.

My daughter says she actually feels worse after a massage. I couln't figure out why until this morning when I read an article that said that when you get a deep tissue massage that it breaks open mast cells and releases histamine. Not a problem for the general population but if you have a mast cell issue (which we believe she does) then no wonder she doesn't feel good after a massage.

It's approaching the year anniversary of when my daughter developed POTS and she is feeling stuck also. Everything she has tried to get better has failed and she is skeptical that she will ever get better (even though the doctors have told her that eventualy she will).

Don't give up - something will work (it is just going to take some more time to figure out what that is for you).

Kim:

That's great news! So nice to hear someone is improving. It gives everyone else hope.

Kat:

I agree with the other responses. You should find a doctor who specializes in autonomic issues. It may require some research (and some traveling) but it is well worth it. Most of the doctors that my daughter saw before we went to a specialist had no idea what POTS was.

Thanks for the article!!!

Pam

When my daughter's doctor prescribed a beta blocker for her he said that it would help with the adrenaline surges. Unforunately she was unable to tolerate beta blockers because of a mast cell issue.

I hope that you see some positive results soon.

I agree with sarahm. I think it is very important to have a specialist close to where you live. We started out seeing a doctor in another state but found it was just too hard to travel back and forth for follow up appointments. Like Sarahm said, if it is your only option then you do what you have to do.