Hi everyone! It's Brigitte. Been awhile since I've been on here. I haven't been feeling well lately and I thought I'd reach out to y'all. I'm so confused and scared. I don't know what's what anymore.

3 years ago I was diagnosed with bipolar 2. I was having back to back panic attacks and was stuck in what's called a "mixed state" for 8 months. Coincidentally , it was during this time that I was also diagnosed with autoimmune urticaria. The timing was strangely perfect. I had told my pschyatrist that some of the feelings and sensations I was getting in my body during these panic attacks/fight or flight thing reminded me of the feelings I would get when I would have swelling episodes. That's when I get in at at study with the university for hereditary angioedema. Luckily through that study, they tested for everything and that's when I found out it was autoimmune urticaria. It was also during this time that I started to become aware of my sensitivities to frangrances.

So I have a diagnosis of the AU and bipolar 2 and the symptoms seem to melt into each other so I never know what the heck is going on with me!

This past December I started feeling "something" coming on. I just felt off and I was extremely irritable. About a month ago I had another mixed episode. It's a terrible feeling of being sad, mentally and physically irritable and a foggy brain; Words don't come easily, and I feel as though I am walking around in a dream. Basically, I want to crawl out of my skin and under a rock

So we upped my lithium, took down my Zoloft (apparently SSRI's aren't good for bipolar) and I started taking an extra Ativan. This seemed to work for a few days. But then "it" came back.

I've been taking my antihistamines, Zyrtec and Zantac in the am, and Allegra 60 mg in the afternoon and Zantac again at night.

My husband is out of town on business and tonight I had to do something to make things more manageable, mostly for the sake of my 8 year old son. Pulling at strings, I decided to take a cap full of liquid Benadryl. And it seemed to help calm my body down. (Which makes me question, is it the urticaria or the bipolar??)

I'm not sure why I posting all this. I guess I'm just confused and scared. Do some of you with mast cell disorders experience anything like I described? Or is this indeed all bipolar that I am experiencing? I don't know anymore. But I want to feel better. I want at least part of my life back. I am tired of always being stuck in my head evaluating myself as to how I'm feeling. I just want to LIVE!!!! The good old days when I used to follow the Grateful Dead!!! Lol not a care in the world!

I know I have AU, the bloodwork proves that, and I'm sure I also have some kind of brain cooties, but I'm just confused. And to make matters worse, bringing up the urticaria and the bipolar 2 in the same sentence doesn't make a lick of sense to any doctor. They look at me like I'm crazy. Ugh!!!!

Anyways, thanks for reading. I hope that this relief I'm feeling from Benadryl is not a fluke. That would be nice!!! That leads me to one last question...do some people respond better to Benadryl then to Zyrtec, Allegra etc?? Should I try adding Benadryl to the mix for a few days and see what happens??

Oh ya, just in case anyone has any knowledge on this. I have also found that although I'm not diabetic (something I am going to have to work hard to keep at bay), I am insulin resistant. Could insulin resistance make you feel "off". I went to a new gp, and she just run a gamete of tests on me before she puts me on metformin. Is anyone else on this drug?? Is it ok for people with mast cells issues!!

Thanks again!

Hi.  I am so sorry you are going through all of this.

You know, when I was first diagnosed with masto, before I was taking my antihistamines, sometimes I would get almost like an adrenaline rush feeling, like a panic attack like feeling, but I could tell it was chemical, as it came on suddenly.

I now know that I make a lot of prostaglandins when my mast cells blow off, and sometimes I get this feeling right before I have a major mast cell blowout.  I think all the mast cells just kick out this stuff at once, it hits your nervous system, and of course you feel it mentally and emotionally too.

And toss in insulin difficulties, yes, that might be adding in to the mix too.  My mom is diabetic, and sometimes her symptoms seem a lot like mine.

You might want to see if you can get your psch doc and masto doc to do a consult together to see if they can figure out a plan about how to tease out what med mix works for you.

You know, when we have all these mediators popping out and such, it can feel pretty weird and scarey at times.  Usually when I feel weird, I am about due for a masto attack.  That's when I know it is time to take it easy and take good care of myself and get more rest.

Hi Brigitte,

I am sorry that you are going through such a difficult time.  I hope things have improved since you last posted.

I am not sure where you are located. I am in Wisconsin.  Because of Lisa's information on Dr. Johnathan Smith, I sent a request for an appointment to see him.  I read his profile and it looked like he was still in his residency, but I just received a call and he is practicing.  I am not sure what his specific areas of interest are, but his profile is impressive.  

Mayo asks you to send all of your medical records for 2 years (or from onset of symptoms)  (MRI's, etc. in CD form).  And then with consideration for your request, they discuss which doctor (they have 90 neurologists) would be the best "fit" for you.

I get excited when anyone in the Midwest is interested in Mast Cell patients!! A neurologist with an interest in mast cell would be wonderful!  How do we know what we are dealing with unless someone can look at the WHOLE picture!??

I have been diagnosed with dysautonomia, possible POTS and a seizure disorder (I take Keppra daily).

I hope this somehow helps.  IMO it never hurts to send your records....you can always think about what is best for you to do, while they are processing them.

Keep us posted.  Hugs, Lynda

P.s. Thanks Lisa!

Wow!!!! I didn't think I was going I get much of a response! Thank you thank you!! So the doctor at mayo! Sounds like a great start! The possible problem is that I am not masto, but autoimmune urticaria. Wondering if they would take me too. Being on this forum, it is apparent to me that I share many characteristics of mastocytosis. The thing is that I don't have much to send a doctor. I found out about my AU through a pharamcedical study at our university medical school (not a very good school though, lol) but other than that, I don't have anything to send as no doctor has taken me seriously when I bring up a possible connection between my psychological problems (makes me sound nuts!) and my urticaria (usually coming out as angioedema in me rather than hives). So I'm not sure I would have the "credentials" to send to get me an appointment. Any thoughts??
Speaking of mastocytosis vs. autoimmune urticaria, are there any new thoughts out there in the medical world that are finding similarities between these two conditions?? From my experience, and from reading y'all's experiences, they are so much alike!
Thank you all for taking the time to respond to me. I'm still struggling very much and need help, I just don't know where to go  

**is chromolyn ever prescribed for autoimmune urticaria??
*** this is me desperately pulling at strings, but I have been using this new face oil (marajuco or something like that!lol) by a makeup brand called Tarte. It comes from the passion fruit from the amazon. The oil doesn't have a fragrance, which is why I got it, but could the oil be penetrating into my skin and causing me some of these symptoms?? (Now do I sound bipolar????  . Just kidding. That's the crazy part (no pun intended) I'm really quite normal, I just go through bouts of depression and the awful, totally consuming physical symptoms. Ick!!

If you didn't notice I sent you a personal message!  

Let me get back into this conversation a bit so that I can clarify a few things.  

First, about seeing Dr. Smith, I've given to some of you his email.  Please write to him DIRECTLY and don't take the chance of letting the Mayo choose the "right guy" for your profile!  This is a MISTAKE!!  Most neurologists are clueless as to MCs and if you don't end up in Dr. Smith's hands, or that of his colleague, Dr. Cutrer, then they are likely to think it's all psychosomatic!  You do NOT want to run that risk!


Now, as to the autoimmune masto, this is not that complicated Brigitte, it only means that your MCs are being triggered by your own serum, that you are triggering by all the other pathways that masto patients trigger with and that you also will trigger with your own serum.  In fact, I suspect that these patients really have a greater amount of triggering.   Nancy Gould had told me that she wished that more masto patients would have the ASST test run on them cause she felt that bunches more of us would prove positive to it.   I think she's right!!!  But until some kind of study or case history is published on autoimmune masto, this will continue to be ignored and brushed off as not being an MC disorder!   And again, Brigitte, this is indeed placed under the MCAS diagnostic group.   As far as I'm concerned, patients who are "true" Autoimmune Urticaria patients have ONLY THAT, and nothing more!  They should not be flushing or having gastrointestinal problems, or anaphylaxis and it should be stuck with only urticaria in order to remain considered only as autoimmune urticaria.  When it goes outside of the box, then MCAS should and must be considered.   My opinion, anyway!


Now, I'd like to bring a bit of balance to this discussion.    Pam, I need to make a few comments as to your statement, if you don't mind.  

[quote author=60515D785F545755300 link=1360727813/7#7 date=1362081683]When a person has syptoms of Mastocytosis, but fall short of the WHO criteria for Mastocytosis they are considered to have MCAS. This is true.  However, the patient needs to be investigated for SM because it is the more serious form of masto. The extreme simple explaination for the difference...With Mastocytosis you make too many Mast Cells and they behave badly.  When you have too many mast cell degranulating you have way too much histamines etc. Well, kinda right.  Where research stands right now, you have the proliferative form and what they are calling for now the non-clonal form of masto.   The proliferative form is Systemic Mastocytosis, MMAS and even some MCAS.  What they are calling the non-clonal MCAS is the patient group where they can not find any proof of pathological changes, and thus presumed that there is no clonal activity, however, this is still being discussed and the reason why is because when we go back 25 years ago, Roberts and Oates had claimed that there was an activation form of masto.   The researchers who argued against this were saying that without being able to PROVE any reason for an activation form, it could not, therefore, exist.  They could easily see the proliferation and they presumed that it was due to this that you had proof of activation, that the MCs behaved badly, but this they are questioning as well.  

Masto research has progressed impressively so in the past 3-4 years and even what they wrote 5 years ago has become outdated!  The researchers have always been puzzled as to why you have some patients who suffer terribly from all of the reacting and yet others, with SM and even aggressive SM who haven't a clue they are sick!  The issue is the activation of the disease.   ALL masto patient have the genetic defect on their MCs, that much they know for certain.  But since there is no longer just one defect, but many, they are suspecting that this is the real issue.  Yes, theoretically when you have too many MCs that this would be the excuse for all the extra triggering and thus mediator release, but this is not what is going on.  Again, there are aggressive masto and ISM patients who have the proliferation of their MCs, but they are not showing much activation.  WHY???   This is likely due to the genetic defect which has allowed for the MC to be to sensitive thus degranulate with too easily and not due to the proliferation.  This would explain why some patients merely leak and others take a real beating from anaphylaxis.  The proliferation might be only one angle and the activation another.   Until more research is done, we won't know what it is.  


With MCAS you have the correct number of mast cells, but they too behave badly...so once again you have too much histamine etc.   Well.....I'm not so sure about this either and the reason why is because it may not have anything to do with the correct number of MCs at all!   SM patients have a proliferative disorder to their MCs, and those MCs invade tissues, yes.  But they are too many because they don't die off when they should and hang about allowing for the accrual of more of the same type of clonal cell.  However, Dr. Molderings told me that ALL mast cells in masto are clonal, which blew me away when he said that too me!  Yet it makes total sense for there are forms of masto where if you look at the MC it appears totally normal - nice and round and full of granules.   Well Differential Systemic Mastocytosis (WDSM) is one of them and this is why this patient was so hard to "see" because their MCs give the appearance of normalcy.  So what if there were a type of MC which didn't show any kind of obvious difference in their BMB?  It doesn't mean that their MCs are totally normal nor does it mean that there is no prolideration going on either.  It may well be, only because to the eyes of the resarcher it look totally NORMAL and which would explain why these patients are so challenging to treat! Until more research and more sophisticated testing is done, we just don't know right now.  One thing they do know, the clonal form of MCAS is so extremely slow growing that it shows no damage upon organs.   Interesting, huh?


I hope this helps cut some of the confusion!


Lisa