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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> "organic brain syndrome" - who else? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1357387577 Message started by larken on 01/05/13 at 00:06:17

Title: "organic brain syndrome" - who else?
Post by larken on 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

Title: Re: "organic brain syndrome" - who else?
Post by Joan on 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!

Title: Re: "organic brain syndrome" - who else?
Post by larken on 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

Title: Re: "organic brain syndrome" - who else?
Post by Riverwn on 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

Title: Re: "organic brain syndrome" - who else?
Post by Joan on 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.

Title: Re: "organic brain syndrome" - who else?
Post by larken on 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?

Title: Re: "organic brain syndrome" - who else?
Post by Riverwn on 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!!
Hugs
Ramona

Title: Re: "organic brain syndrome" - who else?
Post by larken on 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.

Title: Re: "organic brain syndrome" - who else?
Post by Joan on 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!

Title: Re: "organic brain syndrome" - who else?
Post by larken on 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

Title: Re: "organic brain syndrome" - who else?
Post by NickT on 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.

Title: Re: "organic brain syndrome" - who else?
Post by larken on 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

Title: Re: "organic brain syndrome" - who else?
Post by Buster on 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

Title: Re: "organic brain syndrome" - who else?
Post by larken on 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! ;)

Larken

Title: Re: "organic brain syndrome" - who else?
Post by Jennifer R. on 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.

Title: Re: "organic brain syndrome" - who else?
Post by brigitte on 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 >:(. 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. :(
Thanks for sharing!

Title: Re: "organic brain syndrome" - who else?
Post by Keri on 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.

Title: Re: "organic brain syndrome" - who else?
Post by brigitte on 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. >:( 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!

Title: Re: "organic brain syndrome" - who else?
Post by kesasur on 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! :D
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!!!

Title: Re: "organic brain syndrome" - who else?
Post by brigitte on 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 :D) 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?

Title: Re: "organic brain syndrome" - who else?
Post by kesasur on 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". :o 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. ;D 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

Title: Re: "organic brain syndrome" - who else?
Post by brigitte on 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 :-[. 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 :D