I was in the hospital after New Years with a bleed and ulcers...stupid tough guy neglected my body's signs simply because a 10 in our book is a cluster and for me all else has always been an inconvenience....

It turned out to be a good thing that I went as lab results came back funky and it turns out that I have APS (antiphospholipid antibody syndrome) and a very high probability of lupus. they're still testing.

Anyway, I'm now not only blessed with multiple headache types mainly chronic CH but have
2 f-ed but autoimmune diseases....

Throughout the 6 yrs I've been here I have read threads where people have discussed autoimmune disorders where they have questioned a link.

Though I don't necessarily think there is one I am curious how many or who may have similar issues?

Thanks for sharing either way.

PF2u all

Eric

E²,

I have had chronic hidradenitis suppurativa since my teen years, and I am just now about to be put on a very expensive injectable called Enbrel. It was originally developed for rheumatoid arthritis, but has been used off-label for several years now treating HS.

From what I have been told, Enbrel suppresses a specific branch of the auto-immune system and stops the progression of what turn into great big infected abscesses. If it works, my world will be rocked. If not, it'll be the same shit, different day - whenever I'm breaking out, mind-numbing pain walking, sitting, essentially moving. The only relief I get is laying down.

My CH didn't manifest itself until my late 20's, but that could have been because of judicious recreational (and, as it turns out, quite accidental) use of psychoactives in college.

Is there a connection? I don't know. But I can raise my hand if you're asking if there are any CH'ers who also have auto-immune issues.

thanks brother and good luck

My name is Eric and I have CH, could that be the connection?

Sorry man about the new diagnosis.  We will be praying for you.

Once every like.. oh i dunno.. 2 years or so some auxillary Doctor looks at my face and goes "Have you been tested for lupus?"

I have that "bite of the wolf" look - though not as severe as medical literature would use as any textbook example, nor do i ever have enough symptoms at once to have my primary care physician diagnose or test me or worry for that matter.. though i do bring it up from time to time.. usually when another doctor brings it up and worries me..

I'm one who has raised the question in the past, due to my having noticed a flare-up of my psoriasis before my CH ramps up.  I know psoriasis is not nearly as troubling as Lupus, but they are both auto-immune in nature.  I do think it is an avenue that might have some small promise to it as from what little I know about things the hypothalmus has some input on auto-immune issues. 

Lupus is an aggravation.  I don't minimize it at all.  My wife Linda has it, and some days it causes issues, but for the most part is just an aggravation.  There are a number of things you will need to avoid, but if you do you will be able to live a normal life.  Just like dealing with CH.

I'm sorry, my friend.

Jerry

psoriasis for me too :(

I think for some people the autoimmune problems could connected.  I have endometriosis- unfortunately there is no real true autoimmune connection as like Lupus and CH or something like that. No one knows what causes it and there is no true cure for that as well.  I think anything can be possible though. 

We know that clusterheads as a group have higher levels of certain antibodies and cytokines (immune hormones) ... this is an indicator of a revved up immune system. We know that these cytokines can push buttons related to the nervous system ... for example, many of the inflammatory cytokines profoundly affect serotonin activity and when given as a pharmaceutical, can trigger anxiety/panic/depression.

Prednisone is one CH treatment that is very effective - and it massively turns-down the immune system. In fact,  it can't be used for a long period because (among other reasons) it makes a person susceptible to infection and spread of cancers if it is used too much/too long.

Please keep us posted as to whether Enbrel incidentally helps with your clusters, Brew.

Curcumin is one anti-inflammatory that is rather similar to Enbrel in one of its net effects (blocking TNF, another cytokine) ... although curcumin does other things, while Enbrel is highly specific. I have heard some good but isolated reports of curcumin being a preventive in CH. 

I would say any condition which primes the immune system is a risk factor for clusterheadaches ..... not sufficient alone to cause it, but if other factors are present, these immune reactions bring out the CH or make it worse.

Allergies are similar to auto-immune disease ... the body responds so vigorously to what it thinks is a threat that we end destroying our own health.

Aw E-Dub . . . .here I thought your absence from posting here was because it was all good.

Our best to you - and quit bein' a tough guy.  Go watch Cinderella. ::)

Mosaicwench wrote on Mar 12^th, 2010 at 4:52pm:

Aw E-Dub . . . .here I thought your absence from posting here was because it was all good. Our best to you - and quit bein' a tough guy.  Go watch Cinderella. ::)

Love you all but too much shit going on.
It's a crazy waiting game...

Here's a weird one that I actually have to discuss with Dr. Sheftell....
Because I am prone to clots and have to be sensitive to my body's signs of stroke, one sign is debilitiating headache that you need to go to the hospital for.....

Are they kidding? ::)
I need a specifically defined headache.
I swear the other day I had a really bad tension headache...yeah we can admit that they suck too...and it hurt really badly but would this be something that average joe would go to hospital since it was bone crushing?

To me it was gravy in comparison to what we deal with as far as CH and it was up there too but it wouldn't send me running to hospital.

Now I have this to worry about with and try to keep anxiety under control.

All is good in life though Pat :-*