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"organic brain syndrome" - who else? (Read 18092 times)
larken
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"organic brain syndrome" - who else?
01/05/13 at 00:06:17
 
Hi All,
I am wondering who else has a very prominent mood component to their symptoms and how you cope.  For those of you who aren't aware, this is called "mixed organic brain syndrome" (great name, huh?!) and there was a study done on it.  See http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1302732818.


My other symptoms are at least better with meds, but this mood part is not controlled well by medicine--even sodium cromolyn, which is supposed to be the most effective for mood-related symptoms.  

This is really hard for me to cope with.  I feel so angry and irritable when I am exposed to a trigger and sometimes last out at people I love, as well as coworkers.  I also have a lot of trouble concentrating.  As you can imagine, this is not a good situation for my loved ones or my job security!  It also makes me so sad because I used to be a really laid-back, fun-loving, "get things done" sort of person all the time and now I feel mean and nasty sometimes.  I also have trouble finishing things.

I have talked with my mast cell specialist and he has increased my sodium cromolyn one pill per day (now taking 4).  Has anyone else found other options that work on mood-related symptoms?  And, what do you do to cope when you feel irritable and angry?  I can sometimes separate myself from others and of course avoid my triggers as much as possible, but I feel that I need other coping mechanisms since this is not always possible.  

Thanks,
Larken
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Joan
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Re: "organic brain syndrome" - who else?
Reply #1 - 01/05/13 at 08:16:11
 
Hi Larken,

  I think a lot of people notice the same thing.  A simple release of adrenalin can make you feel irritable.  I noticed that when I start to have symptoms and feel that way I need to take additional meds.  Walking around helps me, too, if I'm not feeling too awful.

  Have you and your doctor(s) ruled out other causes of irritability?  No doubt that hormone imbalances, meds, triggers and other problems can cause that symptom.

  I know you've been at this for a while, but thought I'd throw the idea out there that maybe your bucket is too full on a daily basis.  An underlying trigger that isn't suspected could be keeping your bucket so full, that almost any other triggers will cause it to spill over.

  Triggers can change over time, so sometimes a re-evaluation, food/symptom diary, or other re-checks can turn up something.   My daughter has had, since she was little, a problem with chocolate and sometimes meds.  Chocolate makes her irritable, and it takes 3 days to clear it from her system.  We were trying a full-on elimination diet to find out if food allergies were causing her headaches, and instead found out what was causing her moodiness!  It was interesting that her teach told us her son had the same problem.

  For me, yoga has been an incredibly calming practice.  Initially, I went to class once a week and practiced daily in between.  Once I felt comfortable that I knew how to position myself correctly, I started recording yoga programs from TV and buying DVDs that I can now do at home.  Every once in a while, I'll have a private lesson with an instructor.    Yoga helps me physically, too.  I have fewer aches and pains when I'm doing it regularly.  Other forms of exercise can be helpful, too.

  Hope you can figure something out and feel better.  It's so stressful to have a chronic illness!
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larken
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Re: "organic brain syndrome" - who else?
Reply #2 - 01/06/13 at 03:06:39
 
Hi Joan,
Thanks so much for your suggestions. I do need to slow it down exercise-wise for a bit and see how it goes.  I ended up going to a yoga class today because I was inspired by your note.  It was great!

I get the same thing that your daughter does with the 3-day reaction to both chocolate and caffeine.  Those, plus gluten and dairy, are the worst for me.  

Just to clarify, my mood symptoms do go beyond increased irritability.  I get an almost rage feeling sometimes and while I control it (most of the time!), it's a terrible feeling. I also become more negative towards other people and feel suspicious of them. I want to pick fights. Again, totally unlike "normal" me. It's fairly extreme and kind of scary.  I have brought this up with my MC specialist and he said, "classic organic brain syndrome."  

I pressed my doctor on it in December (after posting here) and asked for more support.  He increased my sodium cromolyn one pill per day and now I feel marginally worse.  This is making me feel like perhaps the med itself is a trigger for me.  Sodium cromolyn is supposed to calm the neuropsychiatric symptoms, but sometimes I get paradoxical effects from meds, so I'm wondering now after reading your post and thinking through it fresh if this is in fact the problem. This could be filling my bucket on a daily basis.  I will talk with my doctor again.  

Larken

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Riverwn
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Re: "organic brain syndrome" - who else?
Reply #3 - 01/12/13 at 16:28:28
 
Hi Larken,
I wouldnt call what I have organic brain syndrome because that is a disease that is chronic and gets worse with time. I have "Brain Fog" and it is caused by mast cells short circuiting in the brain and hampering communication instead of facilitating it. To me, that is a side effect of misbehaving mast cells and not a progressive disease. I take Vistaril (hydroxyzine) 25 mg three times a day for it and it helps quite a bit. (It is used as a sedative to treat anxiety and tension and to treat allergic skin reactions.) For me,it calms mast cells in the brain. Hope this helps!
Ramona
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Joan
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Re: "organic brain syndrome" - who else?
Reply #4 - 01/13/13 at 11:32:04
 
A lot of medicines can cause symptoms like you describe.  Prednisone makes me incredibly edgy after a few days.  All my emotions get more extreme, and my self-control seems to get lower on it.  So, I know what you mean.  I can't take Sudafed either or any caffeine drinks.

You could be having a reaction to gastrocrom, or maybe it's too much gastrocrom.  If you're afraid to cut back on it, you could try changing antihistamines or lowering dose of them, or switching to ketotifen instead of cromolyn sodium and see if anything else could be a problem.  Other foods could be triggering the moods, too.

Of course first run any changes by your doctor and be very careful if you tend to shock.
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larken
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Re: "organic brain syndrome" - who else?
Reply #5 - 01/14/13 at 08:16:54
 
Thanks, ladies.  I have cut back on my Gastrocrom and I feel a bit better, though the range of things that could be causing my symptoms seems a bit overwhelming at times and to shift fairly quickly so it's hard to tell.  I know that we all face the same dilemma and I will try to be patient and take it in stride.  

Ramona, is organic brain syndrome progressive?  I haven't seen that in the study that is on the forum.  Where did you read it?
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Riverwn
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Re: "organic brain syndrome" - who else?
Reply #6 - 01/15/13 at 13:29:36
 
Actually I didnt read it on the site. Im a nurse and Im used to using the term with patients. Im glad you brought my attention to it though--I guess some of the time Ive been using it wrong. I was always under the assumption that the condition was progressive--because the diseases my patients had were progressive. But I decided to look the term up and here is what I found from an NIH website;
Organic brain syndrome (OBS) is a general term used to describe decreased mental function due to a medical disease, other than a psychiatric illness. It is often used synonymously (but incorrectly) with dementia. Some disorders are short-term and treatable, but many are long-term or get worse over time.
Larken, you and I are the short-term treatable LOL.. Thanks for pointing this out to me!!
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Ramona
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larken
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Re: "organic brain syndrome" - who else?
Reply #7 - 02/01/13 at 20:39:56
 
I just checked back in after some time away and saw your latest post, Ramona.  Thanks so much for the clarification!  I was concerned about the progressive part, but hopefully that's not the case.
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Joan
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Re: "organic brain syndrome" - who else?
Reply #8 - 02/03/13 at 16:46:23
 
Hi Larken,

  Do you get sodium cromolyn in pill form in the U.S.?  If so, where?  I'd love to have it dry rather than liquid vials!

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larken
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Re: "organic brain syndrome" - who else?
Reply #9 - 02/03/13 at 22:45:42
 
Hi Joan,

No, I get mine from a compounding pharmacy in Europe that works with a mast cell specialist here. Good luck, though. I hope you can find some in the States.

Larken
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NickT
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Re: "organic brain syndrome" - who else?
Reply #10 - 02/12/13 at 04:44:20
 
100% I can relate to your situation at home and work. In fact, I just feel like a nasty person nearly all of the time, except when I avoid triggers for a week or two.  I hate how my condition causes me to be irritable and nasty.
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larken
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Re: "organic brain syndrome" - who else?
Reply #11 - 03/10/13 at 06:02:52
 
Hi Nick,

Sorry to hear that you are experiencing the same thing.  But, it is comforting to know that others can relate.  Thanks for letting me know.  If you have any tips for what works for you (or not!), I would love to hear them.  

Larken
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Re: "organic brain syndrome" - who else?
Reply #12 - 03/16/13 at 05:51:44
 
Hi Larken,

I also have rage reactions when I am exposed to various triggers.  I came across a post from someone on the NORD forum who thought there might be some connection between MCAD and neuroglycopenia.

I remember that when I was having many more reactions in the past, that drinking a soda would often significantly reduce the intensity of the reaction, although for only about half an hour.  I had forgotten about this "home remedy" until I read that post.

One of the symptoms of neuroglycopenia is rage, which I found on the Wikipedia entry for neuroglycopenia:

http://en.wikipedia.org/wiki/Neuroglycopenia

I am now wondering if there might be some relationship between the two conditions.


Buster
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larken
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Re: "organic brain syndrome" - who else?
Reply #13 - 04/12/13 at 23:58:32
 
Hi Buster,
Thanks for bringing this to my attention.  I will look for this pattern.  However, I have found that sugar seems to make my reactions worse and not better.  In fact, I think sugar may be a trigger for me at times.  

I started taking iron supplements a couple months ago and I think it is helping with my mood and brain fog.  I still have mood-related symptoms, but they are not so bad and I feel better mentally most of the time.  Makes sense, I guess!  I should have started these months ago, but I was worried that they would just complicate the trigger puzzle that is my life!  Wink

Larken
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Jennifer R.
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Re: "organic brain syndrome" - who else?
Reply #14 - 06/27/13 at 14:39:30
 
I'm so glad to see this post!  I knew my reactions and mood were connected. For me it goes from mild stressed feeling to full rage that feels like my brain is on fire and I have no control. It really bothers me because I am a very self contained, patient person and it hurts that my husband and 7 year old son are experiencing this from me. I haven't had a brain on fire incident in a while (probably because I'm treating the masto now) but irritability and anxiety are definitely still here and I feel just on the edge of becoming a roaring lion every now and then still.  It would sure be nice if they had a little pill for that. LOL
It does explain I think, why antidepressants have never helped. And my Doc acknowledged the emotions that come with this disease and that it is organic in nature. Glad my hubby got to hear that. He just didn't give it a name but now I know.
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