Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Autoimmune disorders and Clusters (Read 5404 times)
E-Double
CH.com Alumnus
***
Offline


Are we ourselves?


Posts: 6948
Commack,New_York
Gender: male
Autoimmune disorders and Clusters
Mar 7th, 2010 at 1:51pm
 
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
Back to top
  

I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.
Edoubleitk Edoubleitk1  
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: Autoimmune disorders and Clusters
Reply #1 - Mar 7th, 2010 at 2:07pm
 
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.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
E-Double
CH.com Alumnus
***
Offline


Are we ourselves?


Posts: 6948
Commack,New_York
Gender: male
Re: Autoimmune disorders and Clusters
Reply #2 - Mar 7th, 2010 at 2:30pm
 
thanks brother and good luck
Back to top
  

I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.
Edoubleitk Edoubleitk1  
IP Logged
 
FramCire
CH.com Alumnus
***
Offline


Life like a froward child
must be humored a little


Posts: 1710
Bolivar, MO USA
Gender: male
Re: Autoimmune disorders and Clusters
Reply #3 - Mar 7th, 2010 at 4:08pm
 
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.
Back to top
  

You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
IP Logged
 
Loric
CH.com Junior
**
Offline




Posts: 57
Tampa, FL
Gender: male
Re: Autoimmune disorders and Clusters
Reply #4 - Mar 7th, 2010 at 4:15pm
 

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..
Back to top
  
 
IP Logged
 
Callico
CH.com Hall of Famer
*****
Offline


Author of "Stranded at
Romson's Lodge


Posts: 4916
Aurora IL
Gender: male
Re: Autoimmune disorders and Clusters
Reply #5 - Mar 7th, 2010 at 4:20pm
 
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
Back to top
  

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
IP Logged
 
black
CH.com Old Timer
****
Offline


I Love CH.com!


Posts: 347
Greece,Athens
Gender: male
Re: Autoimmune disorders and Clusters
Reply #6 - Mar 8th, 2010 at 10:38am
 
psoriasis for me too Sad
Back to top
  

Oh come on!it's just water.It can't be that bad!
 
IP Logged
 
Jbrigham77
CH.com Junior
**
Offline


I'm Me, nothing more,
nothing less.


Posts: 30
Poquoson, VA
Gender: female
Re: Autoimmune disorders and Clusters
Reply #7 - Mar 10th, 2010 at 12:28pm
 
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.
Back to top
  
 
IP Logged
 
monty
CH.com Hall of Famer
*****
Offline




Posts: 1056
The Swamp, Florida
Re: Autoimmune disorders and Clusters
Reply #8 - Mar 11th, 2010 at 5:57pm
 
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.

Back to top
« Last Edit: Mar 11th, 2010 at 5:59pm by monty »  

The outer boundary of what we currently believe is feasible is far short of what we actually must do.
 
IP Logged
 
Mosaicwench
CH.com Sponsor
***
Offline


www.mosaicwench.com


Posts: 3507
Near Milwaukee WI, USA
Gender: female
Re: Autoimmune disorders and Clusters
Reply #9 - Mar 12th, 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. Roll Eyes
Back to top
  

“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert
WWW http://www.facebook.com/home.php?id=1240423960&ref Mosaicwench  
IP Logged
 
E-Double
CH.com Alumnus
***
Offline


Are we ourselves?


Posts: 6948
Commack,New_York
Gender: male
Re: Autoimmune disorders and Clusters
Reply #10 - Mar 13th, 2010 at 12:40pm
 
Mosaicwench wrote on Mar 12th, 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. Roll Eyes

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? Roll Eyes
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 Kiss
Back to top
  

I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.
Edoubleitk Edoubleitk1  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!