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"organic brain syndrome" - who else? (Read 18200 times)
Britt
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Re: "organic brain syndrome" - who else?
Reply #15 - 06/27/13 at 16:54:11
 
I go through the same thing, and like you, consider myself a very patient easy going person. But some days (more than I would like) I can feel this insane irritability building all day, until late afternoon when it comes to a head and I snap. Now that I am aware of these episodes, I try my best to remove myself from my husband and son if possible (or anyone else in my war path!lol) otherwise, I'm just upfront with them and tell them that I'm just not doing so hot right now. But it sucks Angry. It's not me, it's not in my nature.
It helps seeing other people go through this too. I'm hoping that one day when I'm on the right meds, this will become less frequent.
Unfortunately, because of my up and down moods and without a doctor to help me understand mast cell symptoms (thank God for this website or I would be completely in the dark) I have been diagnosed bipolar type 2 and am on 4 meds for this. Nothing really helps (except the remeron, which has high antihistamine properties!!! Hmmmmmm) the more I read and the more I hear from y'all, the more I think I am not bipolar 2. Chances are these meds are doing more harm than good. I know SSRI's are supposedly bad for mast cell disorders, and I'm on Zoloft.
Stuck between a rock and a hard place. Sad
Thanks for sharing!
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Keri
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Re: "organic brain syndrome" - who else?
Reply #16 - 02/17/14 at 17:15:55
 
Apparently there were some studies done on people with severe mental health problems and physical problems such as MCAD. When given histamine blockers over half of the patients mental health problems improved along with their physical illness. Some improved so much that they were taken off all mental health drugs and only relied on histamine blockers that seemed to stabilize their condition. So the question is what comes first the chicken or the egg? does mental health decline cause MCAD or does MCAD cause mental health problems? Any way I just thought it was an interesting find. I have a friend who suffered severe mental health issues due to MCAD they  were placed on serc, a histamine one and three blocker shortly after their mental health issues  stablized in ways beyond there expectations, which were unexpected. What had changed was the use of serc and nothing else. I was  able to make  the connection when i  read the short version of this study. My friend no longer takes any meds they once used for their mental health issues. I really believe more people suffer from this illness and are being misdiagnosed even those with mental health issues. They seem to think that if someone with physical pain ( strange symptoms or obscure symptoms) along with mental health decline should be checked for MCAD as being treated with Anti histamine drugs  along with their anti-depressant ect type meds, can mean a greater chance of wellness and or recovery.
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Britt
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Re: "organic brain syndrome" - who else?
Reply #17 - 02/18/14 at 13:32:26
 
Thank you Keri for bringing up this topic again. It makes me feel not-so-nuts! As I posted before, it has taken years to make the connection (I didn't even know I had autoimmune urticaria until 4 years ago, and MCAS more recently), but I know my anxiety, depression, OCD racy thoughts and anxiety and panic attacks are all related to mast cell issues. The simple cause and effect of what happens to me after being around or eating a trigger is enough proof for me.
Too bad the docs don't get it AT ALL.
I was so sick a couple week ago my husband had me make a hasty, desperate call to the Mayo clinic. I had been feeling really bad for a couple weeks. I was on the phone with an intake person for about 1/2 hour telling her my symptoms. She called me back later that day with an appointment. Long story short, several of the doctor appointments they had set for me were for behavioral and psychiatric issues. It made me so mad. Angry I actually called and canceled today.  I'm not paying out the wazoo to be told I'm "somewhere in the bipolar spectrum" again and put on more psych meds.
On a brighter note, I'm so happy and encouraged to hear that your friend was able to get off her psych drugs. That's wonderful! I hope I can get there one day. I've been on them so long now, they're kind PDA mental crutch for me. There are times that I have tried to lower my dose of this or that (under doc approval) but it never seems to work. I am so sensitive that the tiniest change is a big change for me and that the "withdrawl" feeling scares me back to my normal dose.
But it's definitely a catch 22 because I also believe that some of the meds are triggering me. Ugh. But I also think that I do need some! Lol

BTW, what is serc?
Update...I just looked it up! It's a drug mainly given for vertigo symptoms? Is this a drug used for mast cell disorders? I'd love to hear more about it!
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kesasur
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Re: "organic brain syndrome" - who else?
Reply #18 - 02/19/14 at 09:47:57
 
Brigitte,
We are in a similar boat I think. I've been grateful for the klopopin again and the low dose of Zoloft. Before we knew this was MCAS the Zoloft definitely helped the highs and lows and crying and while I still felt junky well, it just didn't bother me as much!  Cheesy
That said, the biggest boost to "calming me down" was when I started taking the Allegra.  Wow, what a difference. I'm not sure coming off the other 2 are a good idea at this point. Fortunately I've not been asked/forced/suggested back to a psychiatrist, though I may ask myself if only to educate and pick his/her brain about meds that are anti-histamine based which could give me a 2 for 1. My PCP did say if the Zoloft didn't help he would recommend someone who he trusted but we'd try to work through things together. I was thankful for that.

I had a great woman in Albany, NY but she's a bit of a hike now... though only 2 hours. I trusted her fully- she didn't get what this was, but she never made me feel foolish or "crazy" for what I was going through.
I understand that delicate balance of knowing you need a certain amount of med to stay "balanced" vs. what might also be adding to your load.  
I hope you are able to work that out!!!
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Britt
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Re: "organic brain syndrome" - who else?
Reply #19 - 02/19/14 at 11:45:41
 
Thank you for being so candid about meds and the struggles some (all??) of us go through regarding mental stability and mast cell disorder. There is such a strong link there. I just wish the doctors understood. I think we can all be tremendously misunderstood:(
As far as psych meds with antihistamine properties, I noticed that when I went on remeron (mirtazapine) I went from being in an active state to having breaks (before having any kind of mast cell diagnosis) turns out it has antihistamine properties, not as good as doxepin, but still pretty good. So picking your docs brain for meds thy can kill two birds with one stone is definitely worth it!!
I wanted to throw this out there (I hope I don't jinx myself Cheesy) but after reading a few posts by heather I decided to add a Benadryl dye free capsule to my regiment everyday. I've been doing this for a week and a half now, and Though things have of course not been perfect, it seems to be helping quite a bit!
Makes me wonder about all the other lesser talked about antihistamines out there. Maybe some of the older generation ones? Or maybe even new ones?
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kesasur
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Re: "organic brain syndrome" - who else?
Reply #20 - 02/20/14 at 01:03:53
 
Brigitte,

That is an interesting point: the dye-free Benadryl.
Feb is not a good month for me- last year it was my "breaking month".  Shocked  I was sick in Jan and Feb this year and wow- did it ever effect my cells....so I was taking much more Benadryl (generic I seem to tolerate) just to keep from full body shakes. But I am noticing as I lower back to my usual dosage of just 2 allegra and no Benadryl...I'm still more sensitive so I've been taking 1/2 a tab twice daily to even things out. I like the idea of the dye-free added in.  Where as one used to knock me out for the next 4 hours, I'm finding I can stay upright and function now.  Grin   I think you are right: sometimes the old stuff- tried and tested - can be what's best for us.  I still have a bottle of periactin to try in my cabinet. we'll see....
As for candid about my mental health issues, oh the stories I could tell. hahaha. But you've probably lived them too! But I figure, if they can help or encourage or comfort someone else- I've got nothing to lose by sharing.

Kelley
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Britt
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Re: "organic brain syndrome" - who else?
Reply #21 - 02/20/14 at 04:42:52
 
LMAO! Kelley, you're hilarious! The stories I could tell!!!......I couldn't agree more! When all this started, I truly thought I was losing my mind! I was scared to death. But once I figured out scented laundry detergent and dryer sheets were triggering panic attacks, and my home home became 100% fragrance free, things got significantly better.
That's interesting to me that February is a bad month for you. It's the same for me. February 2010 (valentines day of course) was the day the walls came crashing down on me. I have never been the same. And every February since I have been very symptomatic. Hmmmm????
As far as Benadryl, I seem to have opposite side effects from drugs. If they traditionally make people sleepy they wire me and vice versa. Makes finding the proper medication very challenging.
But you've got me thinking more about the older generation antihistamines. I'm going to look into it some more. I really think adding the Benadryl has done wonders for me (except for the other night when I was practically sleep walking up to bed and stopped by the kitchen for some of those two bite cinnamon rolls from whole foods.....really bad idea Embarrassed. Cinnamon is one of my biggest triggers) I have banned all cinnamon foods from the house from now on! My poor family! Lol
Apparently, even knowing what it will do to me, I have no self control, especially while half asleep Cheesy
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