Hi Deb c xxxxxx

Yes , we call it brain fog , but I lke constipsted brain better . Histamine is the culprit xxxxx It takes me from my happy articulate self to - well i cant string 2 words together . its an early warning sign for me

They have identified a histamine recpetor , 3 , involoved in cognitive function , awake / sleepyness and adhd . They are trageting this for altzheimers . They are working on drugs now

I can stall it and be normal once more with my antihistamines . i use chlorpheneramine mealate as it also ahs a mast cell stabilising effect

It amy be worth checking what your son is doing 5 mins before or as the brain fog starts . I have general concentration problems , but true , coupe moments i call them often come in close contact to triggers all sorts , purfumes , ihaled triggers , spray cleaners , stress , handwash with triggers in

Why coupe ? The first time it happened I couldn't rememeber the word coupe xxxxxxxxxxxxxxxxxxxxx

I can also feel bothered by something or get grumpy for no reason xxxx. but don't know why xxxxxxxxxxxx
hugs
Josie

I hope nobody will get bothered if I step up and say something here.   I think we've got to be careful in calling this brain fog something else here, like constipated brain for example.   You're right Josie, it does feel more like that everything is just all backed up, but the problem is if anybody goes into a doctor and says this that doctor isn't going to have the slightest idea and will even likely look at the patient and never take another word serious again.  

We're not the ones who coined the term "Brain Fog" but this is what the authorities use to call this and what the majority of patients do as well and it's also seen on articles describing our symptoms.   As much fun as the other name may be, and perhaps even more apropo for you, let's not use it please.   It's already hard enough for our doctors trying to get used to our disease when they don't know what they're dealing with.  At least if they google Brain Fog they will get something, but to begin calling it something else is only going to cause confusion and I'll bet you anything it's us patients who end up paying the price for it and not our doctors!!!

So, if you don't mind, let's keep it at Brain Fog, okay?

Thanks!

Lisa

"Constipated brain" is *not* the same as brain fog. It's kinda' like comparing a convulsive seizure to a hiccup - there's a big difference.  

FYI - I'm the one who coined the term "constipated brain", initially using it back in 1995 to describe my son's symptoms to a physician board-certified in Occupational Medicine, who went on to dx my son w/toxic encephalopathy.  This doc, btw, liked the term as, in his opinion, it accurately and concisely conveyed the neurol problems at hand that, collectively, constitute toxic encephalopathy.

Thank you for your concern regarding my son.  We continue to keep a daily log of activities and exposures.  Our exposures are pretty limited as we reside in the country on land that was previously privately owned virgin desert,  in a home that was custom built to accommodate our MCS.  He has been on a strict diet since 2004.  We just put him back on the elimination diet a couple weeks ago to check for new food sensitivities. Whatever's causing his "constipated brain" now is not food related.  My son has chronic non-viral hepatitis - an unknown metabolic process in his liver that shouldn't be - and I suspect that is a probable contributor, as well as a petrous apex lesion in his temporal lobe. Since starting this thread, my son has recovered the ability to speak, but only a few words now and then.

I'm happy to say that we just received authorization for his referral to see the doc that started my masto work up.  I repeat my bone marrow in the morning, and am hoping and praying that will provide some definitive answers that will facilitate my son's work up.  

Deb Mc

Hi Deb Mc ,

I seem to have said something in answer to your question without all the facts of the case . I had no idea , or clue regarding his current and previous neurological problems .

I was explaining brain fog experienced by many masto and mast cell activation patients .

So without the background . my answer was yes . Obviously with such a complex neurological history it may be that your sons neurological problems are from those issues . I am glad he is doing better . i didn't mean to make light of your problems .

My lesson here is to ask for background before answering as all the facts were not available .

Many of us have serious diffculties with neuroogical symptoms with masto / mcas which seriously affect the quality of our lives . So I see you feel constipated brain is not brain fog . But my brain fog is not like a hiccup and you did ask if the symptoms you described can be part of masto . so the answer is yes they can . we call it brain fog .

Josie

Hi deb ,

I understand your comparision now . I have had ataxia ( no back based cause ) , feeling drunk without alcohol and have very sleepy episodes where I can't wake up . The sleepyness may have an adrenal cause as i am secondery hyopadrenic. The others await expination .

But I am having sleepiness , paleness and shaking with functional doses of steriods and on high doses . My BM has been fine . So not hypo ( low sugar ) . I am diabetic

So I am suspecting mast cell activity , more in my bones as i have shoulder and hip pain when i am like this .

Siezures are seen in 2% of anaphylaxis episodes , assumed to be due to low oxygen levels as brains need oxygen , they can not function without it . Other organs can for a period of time .

It is therotetically possible that mast cell stimulated inflammation could cause problems . But I am not aware of mast cells in the brain or the meningies . But menigitis / encephalitis is an inflammatory process so I would not be surprised if they are discovered . Compliment is smaller molucles so it could pass the blood / brain barrier .

Histamine itself is known to have recpetors in the brain so it is possible histamine from mastocyctosis could stimulate these receptors . It also acts as a neurotrasmitter . So has a role in nerve conduction .
 
So it is plausable that your sons neurological symptoms and inflammation are being exacerbated by histamine and or compliment pathways both in his brain  and else were.

Any inflammation in my body leave me open to anaphylaxis ( IGE ) and anaphylactoid ( other routes to mast cell activation ) reactions . I am most likely to go off in spring when sniffig a cat and hoovering xxxxxxxxxxxxxxxxxxxxx my IGE allergies are cats , grass and house dust . IN my situation these allergies are amplified as my mast cells are over sensitive . making me react a great deal more than I should .  
Trigger wise you are not unusual here .I trigger with sulphites , alcohol , fermented foods , food colouring ( very bad ), gelatine , corn ,heat , infection , hormones , CT contrast .

Certian anesthetics are known to activate mast cells , as are some other drugs .

I take it you and your son ahve been worked up for autoimmune possibilities . Those which are most pertinent are Lupus . But also thyroid ( hashimotos thyroidosis ) as a source of swelling ( angiodeama ) and autoimmune addisions ( adrenals , leading to low levels of hormones inc steriods which can cause angiodeama and other problems )

With a strong family history , heridatory angiodeama may be wise to be screened for ( compliment levels ) . mastocytosis is possible  and i am glad you ahve an appointment soon . If you and your son are not positive for masto . You may have mast cell activation syndrome , MCAS which presents with similar symptoms but not the criteria for masto as set out by the world health organisation . MCAS has been accepted by who , but is undergoing discussion of daignostic criteria .

There are some vids on you tube made by the masto doctors which you may find helpful xxxxxx they are called mast cell activation symptomology

Any biopsies you son has had may be useful to the docs as they may beable to re examine them , knowing what they are looking for A list of procedures and the date and hospital will grately help the docs I am going through the process of writing my own list as I have finally got to docs who have diagnosed me with angiodeama - swelling of hands , feet ,bowel , face , mouth , tounge and inside my throat Now I am awaiting results of if it is a new type of heridatory angiodeama , type 3 , there is no one test as its new (2006 ) but a mix of tests . if its not that it will be histamine . I am not looking like its masto . More mcas . But these are the decisions my docs will make soon . I want them to re examine samples from my bowel to see if I have mastocytic entrocollitis , which is the cuurent name for mast cell collitis . mastocytosis can only be diagnosed from skin or bone marrow biopsies and the size and type of mast cells .

But there are patients , who do not have bone marrow or skin classifications but have problems with mast cells elsewere . either a normal number over reacting to silly things , like vinigar in cleaning products . or extra mast cells in different areas . These may fall into the new criteria - MCAS . Or may remain labeled idiopathic anaphylaxis if they don't fit the criteria but have anaphylaxis with no identifiable cause .

I can imagine your daily life is very challenging . I can hear your determination and love for your children and know you will strive to find what is , for many of us , a very welcome but long sought for answer .

many hugs
josie