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fireface

Root cause analysis

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Did You ?

Get stung by a bunch of bees twice in the same week and had an allergic reaction you never had before?

Remodel an older home where you may have been exposed to lead paint, mold, fumes, asbestos ?

Work around electromechanical, electronic, digital equipment for years ?

Have well water in your home ?

Grow up in S. Fla. where airplanes flew over every morning back in the early 60's spraying for mosquitoes and fog trunks came around your hood and you rode your bike in the fog behind them ?

Get abducted by aliens ?

Play a lot of golf where you might pick up fertilizers off your ball ?

It's a long shot...but I figure with this many of us assembled in the same place... at some point we may find a common denominator. I have shingles and it amazes me someone figured out it's because I had chicken pox when I was a kid... Virus lays dormant for years and decides to come out and mess with you 50 years later.

Throw out "out of the box" stuff..and let's see what happens. I saw a post somewhere about an acne medication...some responded with basically "who cares..deal with the here and now".. We're all doing that...but if we could find root cause to prevent our Son's, Daughters, or anyone else for that matter from having to suffer from this...LETS do it. All of that stuff above has been a question in my mind...except for the alien thing..that was just to see if you were paying attention... maybe you have questionable events that we've all had.

Dave

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Hello Dave,

At least you are trying! We have all wondered the same, I'm sure.

There has to be a cause and effect issue here but no one thus far has been able to figure it out.

I did the bicycle and mosquito truck scenario. I have wondered about my store. My attacks began just about the time we demolished (gutted) our store. Black mold was and continues to be an issue.

Hell if I know, but I'm convinced there is a logical reason I have this shit.

I will wonder forever I suppose.

Dan

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I also had water well growing up. The problem is my brothers and sister also drank the same well water and ran behind the mosquito trucks spraying DDT. They are "relatively" normal.

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Been wondering about radiation from the soil where i live, electricity stations and wires, electronic`s and list goes on. Don`t do it so much anymore, cause in the end no one could tell me yes or no. But i still wonder, think we all do. Lets hope someone can give us an answer one time.

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Hey Dan : The mosquito thing is kind of a joke between my Mom & I for letting me ride my bike behind those trucks..but, you never know. The last thing I did was work on that house for about a year and the bee stings were about six months before I started... I see CH was first identified back in the 20's...so that kind of rules out 'modern' day stuff.

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I spent an entire career as an Engineer, trouble shooter, The guy that didn't just put a bandage on the wound..my job was to fix it so it wouldn't happen again...find out why it happened and keep it from happening again...I'm going to push it. Throw stuff at me.

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I slept in from blood loss once right before it started. I lost around 3l and i weigh 45kg and not higher than 155cm, so that`s allot of blood. I think that was a trigging factor. But i had head injuries as a child also.

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Having two brothers diagnosed ECH, I am totally convinced that there is a genetic connection.  Not saying there aren't external triggers, just saying.

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http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1276776645

Check there, too.

Mom and I both have been diagnosed with TN. Both have had some head injuries.

They suspected CH's in her for a while, too. Not sure if they ever decided it.

I go with the explanation that seems logical...fecked up hypothalamus.

Because I know for a fact, mine's been kinda squashed on a regular basis. Too much spinal fluid.

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No doubt hypothalamus disfunction is at the center of attention... I saw MRI's showing deformation of the Hypo in CH sufferers.. Any Idea why you have too much spinal fluid, Mystina ?

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No doubt hypothalamus disfunction is at the center of attention... I saw MRI's showing deformation of the Hypo in CH sufferers.. Any Idea why you have too much spinal fluid, Mystina ?

No idea. Idiopathic. The idea is, my body just produces too much, and can't get rid of it properly. A normal person re-absorbs it. Spinal fluid is produced with every single heartbeat. I can't remember the exact amount, but it plays a part in the full circulatory system.

I wasn't born with it, I didn't have any headaches at all until age 9. (We think the idiopathic intracranial hypertension starts there. We know for a fact, complicated migraines did.)

So for sure from the age of 11-21, I had fluid pressing down on my brain, squeezing it a lot of the time. The treatment for me was diuretics and a bunch of lumbar punctures (weekly for about 4 years.) Diuretics didn't work. The good news is I didn't go blind in all that time.

Remission from IIH happened spontaneously at 21, returned at 24, and I got a shunt put in right before I turned 25.

CH started at 23.

I'm 26 right now.

Dunno if any of that helps. I've got a huge fecked up medical history. We're looking for an underlying cause of all of it, still.

A lot of days I feel like telling medical science to go feck itself. I'm thankful for the things that work for me, and so thankful for clusterbusters, but I kinda want to punch medical science in and of itself upside the head. It really needs to get it's head out of it's ass.

Mystina

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Thanks... Alleyoop...my Son's are already freaking out that they may have to deal with this some day... I think I'll keep the genetic link from them.

Dave

Can't blame you for that Dave.  But I would be sensitive to their health, and be ready to point them in this direction should either develop this disease. 

It seems to skip generations in my family.  My paternal grandmother used to tie cayenne peppers around her head for her "headaches".  My first grandkid is due in Sept, so I am hoping against hope that my grandkids don't have to deal with this cursed disease.

Bob

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Dave, this subject comes up from time to time, and is valuable to pursue.  As someone has noted, you can't give monkeys or rats cluster headaches, so it's very hard to do the kind of animal testing that can be done with many other conditions -- including for example depression, which can be caused (or at least the symptoms of which can be caused) in rats.  That means it's hard to find a cause, and it's hard to find a cure, by applying one major  medical-research model, of inflicting stuff on lab animals and seeing what happens.

There's a quite a long thread just a few posts down from this one, "Common Threads of CH Sufferers" -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1276776645 -- where ideas are also put forward. 

I'm no expert, but it seems to me that since CH can be hereditary, then there must be some kind of genetic disruption involved, which might rule out some hypothesized causes that aren't operating at a genetic level.

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Childbirth with complications but i have some odd failure in my blood. I had a surgery 4 years later, they spent 3h just to stop the blood. It just keep running, but they cant find anything wrong.

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Thanks all,,, I hadn't heard of anyone in my family having CH...but, I talked to my Mom last night she said her Dad had "terrible" headaches. Who knows what "terrible" was.. but, that may be the skipped generation link. I guess I just hate to not know what caused this. I even tried cayenne peppers (cayenne fruit in a capsule) myself, Bob... no luck though. Maybe I should tie them around my neck.

Thanks Everybody... I figured you guys had been through this before...Just thought I'd give it another shot.

Dave

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Anybody here ever look into food allergies?  I know I'm allergic to gluten and dairy, and I know I NEVER had any typical symptoms-just started having grand mal seizures one day.  The whole idea is not that you're going to get a headache from a certain food, but that the food scars your intestines, making it so you don't absorb the right things, and do absorb all sorts of the wrong things.  In this way it can produce a whole ton of symptoms, pretty much goes for your weakest link.  I would not be surprised at all if my food allergies that I didn't know about for years ended up causing all headache issues with me.

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Anybody here ever look into food allergies?  I know I'm allergic to gluten and dairy, and I know I NEVER had any typical symptoms-just started having grand mal seizures one day.  The whole idea is not that you're going to get a headache from a certain food, but that the food scars your intestines, making it so you don't absorb the right things, and do absorb all sorts of the wrong things.  In this way it can produce a whole ton of symptoms, pretty much goes for your weakest link.  I would not be surprised at all if my food allergies that I didn't know about for years ended up causing all headache issues with me.

My only real food allergy is lettuce. My Mom has it too, but since busting mine has gotten better so long as I don't consume it.

She ends up around it and it gives her a headache. That'll last 3-5 days.

Bad part? She's a waitress. The other waitresses try to take care of her by carrying salads out for her. She also loves lettuce.

I know I USED to be allergic to TONS of food when I was little though. I had to be put on a rotating diet. My favorite food was spaghetti... so Mom would cook it once every 3 days, I'd eat it, get horrible diarrhea, and be happy until I could eat it again.

There was a lot of other stuff I was allergic to but I grew out of it. All except Lettuce. Fecking lettuce... I really liked it, too.

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Clusters were recorded before there was electricity running through wires over our heads and before automobiles were spraying DDT.

Before Nintendo and before Jack Daniel decided to put a black label on his moonshine.

Bob

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Damn good points Bob. That may save a lot of time.

That small factoid rules out all kinds of what, at times, I thought were possible causes.

bTW...does everyone sleep on the their headache side or is it Just me and just a coincidence?

Dan

When was this disease/affliction first documented. Seems like I remember the late 1800's.

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hey ya'll  :)

Derek never rode his bike in the "fog" but his initials are DDT, maybe that counts ;D

broken collar bone, car crash-no injuries, disease as a child from his gerbal that gave him a bald patch on his head  :o luckily it grew back :P

I always wonder about the blood. I think of Ting and Mystina with their weird blood issues. A friend of mine whom I suspect has Ch had been diagnosed with MTFHR. (quite by accident-she had no symptoms, they were just paranoid of her being an older mother)

I wonder about Michael, Ricardo... - if any of the other really tough cases have a underlying blood disorder, that at the very least, might be affecting the bodies ability to get relief from things that other do.

Derek had iron issues as a kid. Had to take liquid iron. So do half my kiddos. He swears he took niacin too, but his mom says no... about 3 more months out of cycle and we are going to get a lot of his blood work done....we'll see if anything pops out at us....

my two little pennies...

love you guys!

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