Hi friends! I've been on hiatus from this website trying to figure out what is going on with me, but to no avail. At the risk of you all thinking I'm nuts (which I'm not, just stuggling with severe anxiety type symptoms) I decided to come back here and let you know what's been going on with me the past 10 months to see if anyone can relate...I'm pretty desperate
As far as mast cell goes, my only diagnosis as of now is autoimmune urticaria. I have been told by two doctors that it "sounds" like I have mast cell activation, but it wasn't their specialty.

Last October I stopped sleeping. Total insomnia. In November I started having intermittent dizzy spells. On December 19th I had a severe "panic attack". Since then I have been stuck in an anxiety state of fight or flight, which has put me in a state of derealization (feeling like I'm detached and everything is a dream). I have constant vertigo (like walking on a trampoline) I can't sleep, can't eat, impending doom feeling in my stomach, am often disoriented and confused, bad brain fog. . I have severe migraines, and panic attacks on top of panic.

I have been to two highly regarded inpatient psychiatric clinics looking for help, but nothing has worked. They say it's anxiety and OCD. Ive tried over a dozen psych meds, but
everything I've tried makes me feel worse and nothing calms me down (though I am on some psych meds currently- mainly things I've been in for years- Zoloft, Ativan, low dose geodon) the only thing new  is prozasin for nightmares and Elavil for migraines. I have been on these new drugs since April.
I am at my wits end and don't know what to do. I'm so afraid. Afraid of being stuck like this forever. I have no idea whether or not this could be mast cell related, but I thought I'd come here to see if anyone can relate.... Has anyone ever had derealization and constant anxiety? It's the scariest feeling
I still take my Allegra, Zyrtec and Zantac everyday, but other than that, I've put my mast cell disorder on the back burner, but now I'm wondering since nobody can figure out what is wrong with me, if it could possibly have something to do with what I'm going through.

I just had my Mirena IUD taken out a month ago which I had for 16 months. It dawned on me that between the mast cell disorder, and being sensitive to everything, it probably wasn't such a good idea to have an IUD. I am hoping that as I regain my natural hormones, things will begin to improve...although so far, it seems as though things get worse before they get better.

Hope you are all doing well.

Hi Pam, I looked that up, but I'm pretty sure liver function is fine, but I can relate to the symptoms. Had blood work done not long ago.

HI Britt,

I am awfully sorry to hear that you are having all these problems. I can't really offer any sage advice, but logically could it be that the anxiety is caused by a deep fear of your mast cell disease acting up? Before I was diagnosed, any tiny thing could trigger anaphylaxis in me, because I found that as one little symptom began, my brain started running the scenarios of what would happen if the symptoms quickly escalated. Finally I found a doctor who started me on meds, and they were certainly like a security blanket because I discovered that they did work in shutting down my anaphylaxis. This meant that as soon as I started getting ill, I would keep my anxiety at bay because I knew that the med would work. I would take one of my antihistamines and just feel a sense of relief because I knew within minutes that  my symptoms would calm down.  It sounds as if more than this is going on with you, but maybe this is a part of it?

Britt,  

It is very difficult with a body feeling poorly and no idea what is causing it.

I do want to mention another thing that I know Dr. Afrin checked me for:  he checked the levels of methyhistamines in my urine, and epinephrine, norepineprine, and chromogranin A in my blood, among other things.

By looking at my results and having my history in front of him, he could rule out Pheochromocytoma as being a potential cause of my symptoms. At least he knew what else to test for to rule out other causes of my
symptoms.

I hope you made your appointment with Dr. Afrin, even if you have to wait?