Mast Cell Disorders Forum - Introduction - Dysautonomia and possible mast cell issues

Targs66

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Introduction - Dysautonomia and possible mast cell issues
04/17/12 at 03:15:01

hi all -
Just a quick introduction. I have had what's been called chronic fatigue for years and years, but was always dissatisfied with what seems like a "please go away now b/c we can't do anything" diagnosis. Plus, the things that seem to help other people with CFS (vitamins and supplements) always made me worse, even at low doses.

I managed to work at a high pressure job until a few years ago, even with the CFS. Had a total hysterectomy and my health absolutely nosedived. I'm now so plagued with dizziness, vertigo, unsteadiness and an anxious confused feeling that it's a real struggle to get out of the house. I can work at a very easy job for four hours at a time, but I come home demolished and head straight to bed. Socializing is very difficult - I find the effort of interacting with people overstimulating and exhausting. Needless to say, life is not good.

I was diagnosed a few years ago with neurally mediated hypotension. It explains some symptoms - the orthostatic intolerance, plummeting heart rate and BP, etc. - but not the cause. I'm on a wonderful site (dinet.org) where I first heard about mast cell disorders. On a whim, I started taking acrivastine (it's Benadryl Allergy here in the UK). I can take ridiculously little amounts of the powder inside a capsule and it really makes me feel better, although it does overstimulate me. I've also started taking diphenhydramine at night which has helped with sleep issues.

These things have made me think I have some kind of mast cell disorder. Unfortunately, my GP here in the UK (I'm American but moved to England about 5 yrs. ago) wants to hear none of it. I'm considering going to Dr. Castells, but would have to pay for it myself(!) which is a near impossibility.

Anyways, I'm glad to have found this forum; hopefully I can get to the bottom of what is ruining my life!!!
-Targs

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Riverwn

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #1 - 04/18/12 at 07:10:03

Hi Tarjs!
We have people from the UK on this board.. hang around awhile and Im sure some of them will jump in to tell you which DR they go to and where.

As for you having a mast cell issue--you sure sound like many of us when we first became ill. One big deciding factor here is.l. does taking antihistamines help? If that answer is yes, you are more certainly on a path to be properly diagnosed. Im sorry its taking so long for your DRs to catch up to you. Consider changing DRs, look under our DR thread and see who is available for you. Also do some reading here.. and look into the LOW HISTAMINE DIET and start recording -keeping a journal of your activities, food and drink consumed, medications taken and reactions noted--on an every day basis.. you'll find clues to your condition hidden in there..

We wish you the best of luck and we're thrilled you joined us here, part of our masto family

Let us know how you are, we do care.
Hugs
Ramona

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goldielove

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #2 - 04/18/12 at 11:33:04

welcome, interesting that u can even work, that is something I could not do at this time I also have dysautonmia and mcas, But my BP and Heart rate go up during times of activation I usually do not drop my BP. As far as benadryl causing you too be hyper do you realize that what u are taking at night is actually just benadry its just a long name for the same thing. ???? I tried benadry and it makes me feel very poorly so I am now on an H1 and an H2 blocker. Having dysautonomia and mcas is very common per the mast cell Dr's. Good Luck with your quest.

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Lisa

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #3 - 04/19/12 at 03:21:05

Hi Targs, and welcome!!

Since you are living in the UK, I would expect you have EU health card, right? If you do, then I would go down to Spain and see Dr. Escribano instead. You will pay much less with him and even if you don´t have the EU health card, you will still pay much less privately than if you go to Dr. Castells in Boston!!! And, I would think the airfare about the same!!

Dr. Escribano knows well MCAS and he can help investigate your case and give you some validity or direction if he rules out MCAS. He´s a LOVELY man and you can write to him yourself asking to see him. If you want his email address and contact information, just go to the link below and at the bottom of the page is not only Dr. Escribano´s email, but also the secretary´s phone number, etc for you to make an appointment to see him.

This is something I´ve advised my own sister to do for she lives in Ireland and she´s an American with Irish nationality now, so it´s a good option!

Lisa

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293571751

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Don´t forget, there is so much more to life than being sick!

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Targs66

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #4 - 04/20/12 at 01:23:18

hi all, and thanks for your responses! (For some reason, I didn't get any notification of your replies even tho I checked the box, so I only just noticed these!)

Lisa - thanks very much for the advice about Dr. Escribano. It's a good alternative to trying to see someone in the States w/out health insurance (plus it would be a good excuse to go to Spain!).

Goldielove and Riverwn - thanks, too. I did realize that diphenhydramine is the "old" Benadryl; it just gets very confusing here b/c in the UK what is often called Benadryl is acrivastine (it is marketed as Benadryl allergy). I do think antihistamines help somewhat but (like many dysautonomia people) I can be so up and down in the course of a day with or without the antihistamines that I'm not always sure what is affecting me.

Glad to have found this forum!
-Shel

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Adalinda

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #5 - 04/27/12 at 19:08:08

Hi,

I am new to the forum and still learning, you can find me under my intro 'Greetings from Melbourne Australia'.

I am undiagnosed but plagued by weird symptoms similar to those others describe. The closest diagnosis I have had is an allergist saying I have mast cell instability and prescribing ketotifen. I have now become allergic to my workplace. The problem is I have so many weird things happening and I work full time after a divorce - it is hard to work out what is setting me off. I am exposed to hundreds of triggers everyday and it is getting worse.

Anyway, I got so sick on Friday, came home and slept for 13 hours and have to go to my GP to ask for a referral here in OZ. I have been avoiding it as I have been pushed from pillar to post and spents years on drugs which I think may have been the wrong ones. I was looking under the specialists section on this site and saw the info pasted below about a Dr in the UK, I have no idea how to link you to it so I copied and pasted it. I was going to ask for a referral to the Alfred Hospital Allergy Centre here in OZ, but everything seems to take so long to happen I thought the more info I have the better. Perhaps you have similar in the UK?

Take care,

Donna

Doctor in UK
02/04/12 at 20:54:17 Quote
I was researching a masto-related subject and came upon an article by a doctor in the U.K. who seems to know quite a bit about diagnosing mast cell disorders. Here is the link:

[url]http://www.allergy-clinic.co.uk//url]

His name is Dr. Adrian Morris. Thought I'd post this, even though I don't know anything about him, because he seems to understand MC disorders and the illnesses to rule out before diagnosing one.
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Targs66

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #6 - 04/28/12 at 06:10:10

Thanks so much, Donna!

Coincidentally, I saw the same post and went to Dr. Morris' website and sent an email asking if they diagnosis and treat mast cell disorders. Got a reply saying that they didn't b/c they don't have the diagnostic equipment.

I know what you mean about having tons of symptoms. I seem to have so many things going on that i don't really know what's wrong with me. The only definite diagnosis I've ever had is for neurally mediated hypotension (a form of dysautonomia) but no one can explain why.

I hope you're having some success with getting a referral. Keep us posted.
-Shel

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kimtg68

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #7 - 05/02/12 at 03:52:32

Targs66 wrote on 04/20/12 at 01:23:18:

I do think antihistamines help somewhat but (like many dysautonomia people) I can be so up and down in the course of a day with or without the antihistamines that I'm not always sure what is affecting me.

Glad to have found this forum!
-Shel

Welcome to the forum Shel! I'm thrilled that you found us. This place has been my saving grace when it comes to my health. I understand your feelings about not always sure what is affecting you. I was diagnosed back in Sept 2011 with Mast Cell Activation Disorder (MCAD) by one of the mast cell specialists/researcher here in the States. But so far have not found relief from treatment. So doctor began wondering if perhaps I had something else also going on. Long story short, I'm waiting for testing for POTS (Postural Orthostatic Tachycardia Syndrome) which if I'm remembering my research correctly is within that dysautonomia family. So I'm now all mixed up where before I thought ALL my symptoms were from the MCAD. I'm no longer sure what problem is from the POTS or what is from the MCAD.
At any rate, WELCOME and hopefully we all can help one another through this bizarre journey of symptoms and illness('s).

Kim

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Targs66

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #8 - 05/02/12 at 08:48:14

Thanks for the welcome note, Kim!
I agree; it's so hard to figure out what is causing symptoms. I tend to be so hypersensitive to medications - most make me feel just awful. I'm sorry to hear that your treatment for MCAD hasn't been helping you. Keep us posted on what you find out regarding POTS (and you might want to keep in mind that there's other kinds of dysautonomias, like neurally mediated hypotension, that might not be diagnosed with a standard tilt table test).
Wishing you good health.
-Shel

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angelloz

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #9 - 05/02/12 at 09:45:19

Hello and welcome! I am sorry to hear you are having such a hard time. We can all relate so feel free to unload. I also have a dysautonomia label but an elevated tryptase 12 and 15 which has led Dr. Castells to believe there is mast cell involvement. I have had 2 tilt table tests...one showed orthostatic hypotension , another showed neurally mediated hypotension.
I have so very many symptoms I think doctors get tired of hearing my odd list. I too find interacting socially can make my body feel worse, like it is reacting to the stimulation. I do not suffer from fatigue however. If you have any questions about symptoms or if I can help in any way, please let me know. Like you medications make me feel anywhere from strange to terrible so it is hard to try new things. Hang in there, many brains are better than one

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kimtg68 Guru Offline Posts: 545 Alabama	Re: Introduction - Dysautonomia and possible mast cell issues Reply #10 - 05/02/12 at 14:39:30 Question for angeloz: you mentioned you had 2 tilt table tests. Were they both exactly the same test? Or did they do something different the second time? Just curious. Thanks for sharing.
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angelloz

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #11 - 05/03/12 at 11:34:27

Hello again,
On the first tilt table test they sprayed nitro under my tongue and I instantly passed out. They said I had NMH. The second test no nitro...the doctors at Cleveland said some people have a profound reaction to it and they don't use it. There I had a slow reaction and was lowered before I passed out...there I was given the label of OH.
So many tests...so many confusing results.
Feel free to ask any questions. I am happy to share.
Angelloz

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Targs66

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Re: Introduction - Dysautonomia and possible mast cell issues
Reply #12 - 05/05/12 at 08:08:21

Wow - your experience with nitro sounds awful. (I suppose the TTT isn't much fun for anyone - certainly wasn't for me!)
Thanks for the offer. I am quite confused by all the possibilities and am not sure what actually applies to me. For example, I've been taking Benadryl at night recently (more for sleep issues than anything) and while I love the fact it helps me sleep, I have been going through a rough patch overall. I have no idea whether I should attribute that to the Benadryl! I stopped taking it for two nights, and had an awful time trying to sleep (but that's not unusual).
Will just keep reading up on this condition and trying to come up with some answers!
thanks again,
Shel

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