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Stuck in a "flight or flight" mode! Ugh! (Read 7465 times)
Britt
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Stuck in a "flight or flight" mode! Ugh!
09/15/12 at 14:39:45
 
So it's been 2 weeks now that I've been feeling awful. I feel stuck in that incredibly uncomfortable fight or flight feeling. I can't stand it anymore. I know that it is part of the mast cell disorder, I just know it. Can anyone relate? Can anyone give any advice to help get over this? I haven't had an episode last this long in awhile. It's like I'm constantly being triggered, but I don't know what the culprit is, or if there is one!!!! I just tried fine thing new. I took an extra Zantac (3 instead of 2). I hope this helps! Intuition told me to try this since it feels like my whole body is in reaction mode, like high adrenaline. Yuck! (are h1 and h2 antihistamines equally as important?? Does Zantac seem to help people more sometimes than h1 antihistamines? Or do some of you use an extra Zantac as a "rescue" med?)  And I'm having horrible, HORRIBLE brain fog. I can't think of the right word for anything!
Also....does anyone know when you are considered hypothyroid?my thyroid has been going down slightly since we started watching it 2 years ago. My last test a couple months ago was my first test that came back below the normal range, just by a few points. I should probably have it checked again. I know hypothyroid can go hand and hand with autoimmune urticaria. Does it commonly go along with MCAS as well??
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« Last Edit: 09/16/12 at 08:13:09 by Britt »  
 
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jbean
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #1 - 09/21/12 at 03:40:06
 
I have had some similar symptoms like this when I was first diagnosed before my meds kicked in and stabilized me out.

You know, this disease can flare up sometimes, and it seems to me that my flares always present with some new thing I didn't feel before.

Mast cell mediators can produce a variety of weird sensations in the body.  You can get that "flight or fright" feeling, or sometimes I get this burning sensation, etc.  They are very troubling, but they are not permanent.  That is the important thing to realize.  It may be just a transitory chemical release.

If it continues to bother you and cause concern, then I would contact your doctor and maybe sit down and discuss this. I did that, and it helped a lot for me to understand what was going on.  When my flares die down, then I feel fine again.

The roller coaster nature of this disease can really get to all of us at times.  Know that we are all here for you and we've been through it too.  I will keep you in my prayers.
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Britt
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #2 - 09/21/12 at 07:00:48
 
Thank you so much jbean! It is definitely a roller coaster! Will the roller coaster ever slow down? It seems as though the extra Zantac seems to be helping! Yesterday I had a set back, but with the brain rot I've been having so bad lately, I couldn't remember if I took the extra Zantac or not! So I'm hoping that was the reason I was feeling so bad and that I can hop back on the feel good wagon! Lol I really appreciate your support, everyone on here has been a God send. I hope that once I'm stabilized I can do the same for others.  Smiley
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iamnotalone
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #3 - 09/21/12 at 07:53:30
 
Brigitte;
I hope you are doing better ! That Flight or Fight mode is a horrible feeling ! Sad  I believe that H1s & H2s are equally important, because they work together/complement each other.
You might want to try a benedryl next time. My allergist told me it was originally used as an anti-anxiety type med. I myself take xanax when I need it, BUT, it can be addictive etc. I also believe now that my anxiety attacks began due to hormonal imbalance and possible triggers- although my masto wasn't diagnosed til years after my first anxiety attack. Yes, I still fight that particular demon. but it's nothing like it was years ago! It helps to know that it will pass. I will keep you in my prayers too  Smiley
you are not alone,
lori
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Britt
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #4 - 09/21/12 at 12:06:08
 
Hi Lori! I'm sorry to hear other people go through this but its somehow comforting to know other people have experienced this same awful symptom. I've seen this listed in a couple places (I forget where) as a symptom of mast cell disease. I was diagnosed with severe axiety/major depression 2.5 years ago when this all started. (I know many of you have already read this about me, sorry!) I was put on a cocktail of anti anxiety meds and anti depression meds. It wasn't until over a year into these "panic attacks" that I was able to link these attacks to fragrances....all fragrances (and some chemicals too) so now I'm on all these meds and I don't know what is up and what is down!  Undecided. My goal is to get a proper diagnosis, treat the mast cell condition and hopefully try to get off some of these meds. I think some of them may make me worse! I do take Ativan everyday. They don't do much for me, they never have, but I'm pretty sure at this point I'm physically addicted to them. Ahhhh, the quandaries of being misdiagnosed! Thanks doctors!
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« Last Edit: 09/21/12 at 14:13:49 by Britt »  
 
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Joan
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #5 - 09/21/12 at 17:48:58
 
Brigitte,

  Atarax (hydroxyzine) is an older H1 antihistamine that actually crosses the blood-brain barrier.  It's helpful for brain fog in many people.

  Sometimes H2's are more helpful for me.  It depends on what symptoms I have.  Can't remember if you've tried Ketotifen or Gastrocrom.  I think you said you're going to ask your doctor about doxepin.  Still a good idea.
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Britt
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #6 - 09/22/12 at 10:36:56
 
Thanks Joan! When I was first diagnosed with autoimmune urticaria, I was prescribed hydroyzine as me "rescue" med. the doctor said that because it was somewhat sedating, it would also help with the "panic attacks". But unfortunately it did the opposite. It completely spun me out and I was wired. So I can't take that drug  Sad. Because I am on three antidepressants, I am wondering about switching Zoloft for doxepin. Does anyone have any experiences with this drug, good? Bad? Unfortunately I almost always have adverse reactions to medications. It makes finding the right ones very difficult! What about gastrocom? Any good or bad reviews? Does it cause weight gain? All the meds I'm on now cause weight gain, and it shows! Lol how well have the mast cell stablizers helped others? I go to a new local immunologist on Monday. Wondering if I should push for a prescription of gastrocom. Is it a med that you can start super low dose and work your way up? That's the only way I can do meds is to start really really low!  Smiley
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PamH
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #7 - 09/22/12 at 11:53:42
 
Yes Brigitte you do start very slow on the cromolyn.  It has done amazing things for me.  It calms the mast cells down! You can read all the post on here on cromolyn, it is also called gastcrom!
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Britt
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #8 - 09/22/12 at 13:21:58
 
Amazing like how?? Do tell! I like to hear good news!  (can you feel my desperation! Lol) like today, I just have this underlying sense of nervous energy. And there is nothing going on in my life to cause this. I am certain that it is mc related. Like my system is all amped up for no reason. But it's not like my mind is racy, it's actually in a fog! Lol. Over the past few weeks I can't remember anything! I even rest myself if we're watching a movie or something to see if I can come up with the name of a famous actor/actress......nope! Brain fart! Whenever I start a new drug, I go incredibly anxious, probably because I have so many bad effects from meds over time. I was really upset that singulair didn't work for me. So do some people experience bad side effects from cromolyn??? I'm going to ask this new immunologist about it on Monday. If he gives it to me, be prepared to hear from me on here having anxiety and being wishy-washy about taking it! Lol reassurance always helps me push through the anxiety! By the way, does cromolyn cause weight gain? I'm just worried because I've steadily and swiftly gained weight from all the antidepressants I'm on. I hope it is weight neutral!
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #9 - 09/23/12 at 11:25:05
 
Brigitte,
I have read that people have lost weight on cromolyn.  I believe its the ketotifen that makes you gain weight.  But I seriously could not eat more that beef chicken,green beans and rice.  So natrally when the cromolyn and the ketotifen kicked in I was  chopin' at the bit to eat every thing that I could get my hands on with out a reaction!
 Sometime I just remind myself...yes you have gained weight but atleast you are alive.  At my worst before cromolyn I was having anaphilaxis daily...I didn't know why and I didn't know how to fix it. And I didn't know if I was going to make it another day.  It was horrible.  I even started on a bucket list.  I was to sick too get out of bed so I thought it might be too late for a bucket list.  But my doc put me on the cromolyn and slowly it started controlling my symptoms.  It will make you feel worse before you get better, but I had no choice because I had no alternatives.  So I bunkered down and stayed in bed till the worst was over.  Then one day I got up and had the energy to walk the dog and to bake muffins.  You have to realize this was amazing because I had spent the last 6 months in bed, the last year dragging my sick body to work only to come home and sleep until it was time to go to work again.
Brigitte,  I was also allergic to my house.  I started having my throat swell just by walking in my house.(Before we found the mold) I slept in my car, in a tent, at my mother-in-laws, in a motel for 3 weeks, went to my parents house out west of 3 weeks, then we remodeled the minibarn and I slept in there for a month.  I was exhaused, I would go to the y to shower and I would fix myself for work in the bathroom at work.  I would walk to the hospital close to our house to use the bathroom. I get stressed out just thinking about this.  I should write a book, it was horrible.  Plus its against our HOA to live in the minibarn Grin
The comolyn has made it possible for me to live in the house! I wonder sometimes if we should sell the house and move, because I wonder if the mold spores are still affecting me. I wonder if I would be healthy in a different house.  But I think deep down I know that I have this disorder and moving will not make it go away.  We have done everything humanly possible to make the house safe.  I do feel better here than in other building- so I know that much.
I also think that cromolyn has really helped with my reactions.  Kind of made me into a leaker too, instead of always being a shocker. (there are still things that make me shock but not everything)  Once you are a shocker, being a leaker is a happier place to be. Because you can relax...and not constantly feel you are going to die.  I mean I cant go crazy and eat everything I want but the scary level has been deminished! Before cromolyn, I did not want to be left alone, I had my teen babysit me when I took new meds or ate.  Just incase I couldn't epi myself. Now that is sad!  I remember, my husband was away and I had to drive my daughter to youth group, and pick her up and stay alone the whole time she was gone.  It was so frightening.  I remember picking her up and my throat was starting to swell and I didn't know what to do. I kept texting her, we have to go now!! I probably took benedryl and drove home slowly but it was scary---So cromolyn has helped me not live in fear 24/7!!
I really think it has been a life saver.  I do want you to know that it does not 'HEAL" you...I was hoping to be healed and the doc said no you will never be healed but the meds will help control it.  I cried a few days with this info, but then you have to pick yourself up and move on.
I would certainly ask the doc to let you try it.  It will calm your mast cells down and those are the trouble makers!
Pam
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jbean
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #10 - 09/24/12 at 05:10:46
 
Another thing to remember... we all get nervous about all of this when we are first going through it.  It is a strange disease, which makes you feel strange, and that can freak you out.

However, I can assure you that over time, you will "get used to it" and it won't be as scary as it is now.  It takes awhile, but you do learn to cope with it.  We all do that at our own pace.  Overtime, you will just say "here's that crap stuff again" when you feel it, take your meds, and soldier through.  You won't be as scared as in the beginning.
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Britt
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Re: Stuck in a "flight or flight" mode! Ugh!
Reply #11 - 10/07/12 at 16:39:26
 
Thanks jbean!!! I think I'm getting there. I have had to rewire my brain from years of docs telling me it was all anxiety. It has helped a lot knowing that it is not anxiety and that it is caused by triggers that set me off. It brings a bit more feeling of control. As I learn my triggers and stay away from them, I feel much better. I have recently been able to narrow down chocolate as a trigger. Just to test myself, I had some 2 nights ago and I am definitely paying for it! No more chocolate for me! I don't know if anyone else gets this, but for 20 years I have gotten these horrible and painful breakouts on my tongue. Oddly enough, for years I just ignored it and accepted it. Well now I am realizing that I can use my tongue as a "heads up" that I have put something into my body that is going to set me off, because my tongue will breakout (kind of like blister things Undecided) before the other symptoms set in. It really is a disease that requires tuning into your body and listening to it!!!! I am slowly getting there. I have upped my antihistamines rather then just taking extra as needed, and on a whole, I think it has helped. Have a good evening everyone!!!!
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