Common Threads of CH Sufferers

[Tuckerman48]

Good Day all!

I was curious if anyone (doctor or sufferer) has come up with a common thread that links sufferers?

I am about 30lbs overweight, chronic back pain, 2 back surgeries before I was 30, use marijuana daily, don't drink hardly at all, fairly active lifestyle.

The headaches began when I lived @ 6,500 feet in Idaho, very clean air, now I live in Atlanta, not so clean air.

White, male, age 37....

Just thought we could share our information to see if there is any common link at all for these things.

Forgive me if this thread has been started before!  I would love to figure this MF'er out! >

[Dallas Denny]

Good Luck my friend....lol!!  63 here, CH for over 40 years.....smoked weed daily from age 20 to 51 and had CH......quit in 98 and had CH......had a long stretch of heavy alcohol use and had CH.....another period of 12 years with no alcohol consumption and had CH.......there's a thread goin at CH.com on the commonality of head trauma......my personal opinion is that the work that has been done studying MRI slices of known CH sufferers vs non sufferers identifying abnormalities in CH'ers hypothalamus will end up shedding more light on the cause of our malady.

Dallas Denny

[Lee_Ann]

I am the wife of a chronic.  His started 7 years ago at the age of 45.

He has had at least two head traumas that I know of.  Hit his head on the windshield in a car accident and another running with a dog and falling and knocked unconscious.  Both accidents happened in his early 20's.

He has had a laminectomy and a cervical fusion.  The laminectomy was done several years prior to the onset of CH.  The cervical fusion was done after CH.  He also has spinal stenosis.

He is 6"4 and weighs 190lbs .  Heavy smoker.  Used to drink moderately, but hasn't had a drink in 6 months.

No history of CH in his family.

I have seen many threads on this topic, but it is still interesting to me.

Lee Ann

[Stump BeefKnob]

I am 31 years old, and started getting episodic CH at age 17. I am 6'1" and weight about 210 at the moment, but range anywhere from 185 to 220 from month to month

I used to smoke from age 18-23, was a pretty heavy drug user during that same time (marijuana, coke, mushrooms, acid, alcohol, meth, etc...). Never had any head traumas and there is no family history of CH or even migraine. I do drink alcohol socially at the present time, but have not used illegal drugs in about 8 years.

One thing that I always wondered was whether my use of anabolic steroids at age 17 contributed to my getting CH. I was told by the guy I got them from that I may get headaches as a side effect, and began getting CH shortly afterwards. I attributed their onset to the steroids, and have wondered since whether there was any sort of correlation.

No surgeries to speak of, except for repair of my glenoid labrum, clavicle, and rotator cuff from an injury suistained in a jiu-jitsu competition about 2 years  ago. It had nothing to do with headaches though.

I have suffered from some depression and have been diagnosed with Adult ADHD, but am not on any sort of medication for treatment

Other than that, I have been extremely healthy

[davidj]

My 2 cents. 51yrs old Cluster head since 1996 or so, ex smoker most of the time (love one with a cocktail). I exercise almost everyday, weight 170 height 6ft, fairly good shape for an old guy. Gave up pot 20 years ago when it started giving me panic attacks, cocaine user in my 20s when I worked in the music industry. Only head trauma was when I was in the fourth grade and it was a blow to the forehead that required 3 stitches so I don't think that was significant, social drinker and never more than once or twice a week and most of the time less than that. Ok maybe that was more like 4 cents.

David

[Lee_Ann]

Dan was given steroids after his laminectomy.  Not sure if they are the same kind you took, Kyle.

The steroids did cause avascular necrosis in his hip and he had to have hip replacement.

Lee Ann

[clustermom13]

Mother of an 18 year old cluster sufferer.  He has had them since the age of 13.  Never smoked, never drank, no head trauma, no drug use (till now haha).  You either get em, or ya don't.  Wish all of you, and him, were in that second category!

[Lee_Ann]

I am so sorry Clustermom.  It is bad enough for an adult, but so sad to hear about children with clusters.  It just breaks my heart. :'(

[clustermom13]

Thanks, Lee Ann for your kind words.  It breaks mine too, every day.  He is chronic, and though our busting efforts have helped somewhat, he is still nowhere near pain free.  RC seeds have kept him somewhat sane while I am growing.  I had a couple of unsuccessful attempts.  Time lost, pain suffered--and lots of it.  Most recent batch is hugely successful, so we are off to busting big-time.    He hates it.  Feels like a hypocrite because he was raised not to smoke, drink, do drugs, etc.  But he is resigned to it as well.  First dose last night, so he's rebounding pretty bad today.  Higher hopes for tomorrow.  Maybe one night soon, we will both sleep an entire night.  Fingers crossed, hands together.

[Dallas Denny]

My fingers are crossed with you as well clustermom!!  Sending prayers and postive thoughts your way!!

Dallas Denny

[Stump BeefKnob]

For what it's worth, I have found HBWR seeds to me much more effective than RC seeds. This is just my personal experience

[davidj]

Clustermom,

My heart is breaking for you, I have a 17 year old daughter and to think of her dealing with this nightmare makes me shudder. Please let him know he is not a hypocrite, medicine like ours has been used for thousands of years before the powers that be decided what is legal and what isn't. The name coca cola itself comes from the fact that they used coke leaves to make there product as in cocaine and Thomas Jefferson and George Washington both grew hemp which is what we call pot. Native Americans used peyote, mushrooms and seeds as medicine and spiritual enhancers for centuries. My thoughts and prayers are with you for a successful bust.

David

[clustermom13]

Thanks David,

He survived his 24 hrs of post dose rebounds.  First headache this am was slighter.  Maybe a couple of good days to come.  He needs them, he's pretty worn down.

[Mad6string]

I also started when I was a kid. I can remember my first a around 4 or 5. Back then they didn't understand and my mother was just absolutely frantic. Back in those days I only had about 2 weeks of pain at a time so, we thought it was really, really bad sinus's. I feel for you and your son. I am confident that he will find relief and not have to be in hell for his whole life. Hang in there man. As a wise man once told me "it will all be over soon". Don't feel bad for having to bust, it would be different if you were doing this for fun. Think of it as a medicine not a "drug". You wouldn't feel horrible for taking Tylenol. This is just a medicine that doesn't come in a neat little pill. Praying for relief and peace in your home. I live in Newnan if you guys ever need anything.  :'(

[Mad6string]

Clustermom13, check your PM's

[Texas Cluster]

I feel for you and your son clustermom and hope the RC seeds work for him like they did me, no wait.I hope they work better for him!!

on the topic of common threads, here is mine..

  I am 40, 5, 9" 165lbs blond w/ blue eyes...thought I was on a dating site for a second there.

I had my nose busted pretty bad in a fight one night was hit by a fist holding a roll of quarters, to bad the guy lost the fight and the quarters, but my nose and cartilage in it was messed up and it has come to mind a few times if that may be a cause, I also crushed my lower fourth "L4" lumbar in early 90's and the nerve pain was sending signals from all over the place like the legs and arms, even found some spots that I can scratch and feel the scratch in another place not far from the origin of the itch, that's also one I thought may have caused it. and in 2007 I was hit by a 17yo drunk driver being chased by 5 police cars, on fathers day no less, she T-boned me at 65mph and I was going 45mph when she hit me I hit my driver window on the effected side after that I have slowly become chronic with it getting worse every month until now

But as DD says the hypothalamus seems to be the link and I am starting to think that may be the cause as well.

we cant rule out that a past accident is a cause, but I know so many people that have endured head injuries and back injuries and have nothing like this head pain.

    Darrin

[skull buster]

I think mine were inherited. I'm the 3rd generation sufferer.  spooky huh?  We (my family of ch) is prob. rare I would guess.

[donna mae]

Hello, First time poster here. I'm 53 and my 1st CH attack started Dec. 20, 2009. Was diagnosed with CH Feb. 3.  I'm still in cycle.

        Been a smoker since age 17. Drink moderately, maybe a few times a week, but nothing since Christmas. I'm 5'3" and weigh 150 lbs. Had occasional migraines when I was in my 30's. Last 18 yrs. have been nearly headache free until this past December and CH began. It's a mystery to me!

       Just recently learned my Grandmother may have suffered from CH. She died about 10 yrs. ago at age 97. My Dad remembers she had terrible headaches, ate asparin like it was candy, would sit in her chair rocking back and forth crying in pain and often press her head against a cold window pane.

        Would like to learn more about the heredity factor and CH.

Newbie here

Donna Mae

[jayhedges]

Donna:

We have a lot in common. I'm in day 10 of my first CH episode at age 56. Suffered Classic Migranes from age 13 'til about 10 years ago when the hedaches stopped but I still get the auras seith what seems to be barometric changes in the weather, stress and sometimes diet. But this is a whole new world and nothing like a Migrane that I knew would end in a day. My kip level hasn't dropped below 3 since this started and jumps to 6 or 7 in a few minutes. No pattern that I can detect yet, except I always wake up to a 6 or 7 at 4:40 am after 3 hours of sleep. No head trauma I can think of, but lot's of lower back pain and neuropathy in my legs but I think unrelated. I was a jock, don't smoke, drink casually but no now...am 6'1" and 220 lbs.

[Imigrant]

I am 42 years, 183cm, 70 kilo, and had CH periodic since my late 20s. I never smoked (cigarettes or pot) I have never been a heavy drinker or drug user. No head injuries and no history of CH in my family. Have no idea why I got hit by this...

[Tuckerman48]

So, all I am getting from this thread is that the beast is an equal opportunity attacker!   >

Well, I am thankful for all of you on this board.  The information and the kind souls have really helped me through this cycle!!!

Thank you ClusterBusters!

[Stump BeefKnob]

So far, I think the evidence gathered in this thread clearly shows that all of us get cluster headaches. I can't believe that I am the first to notice this commonality!

This might be worth looking into more

[alleyoop]

Hi Tuckerman! 

I live in one of the southern suburbs of Atlanta, Peachtree City.  You'll have to PM me, and we can try & get together sometime.

I'm a 61 year old male - 6 ft, 195 lbs in pretty good health, except for CH.  I was diagnosed CCH in 2000.  Before being diagnosed correctly, I went through major sinus surgery, being wrongly diagnosed with sinus problems.  The surgery was no picnic, so when the ENT wanted to "go in again", I asked to see a neurologist and the rest, as they say, is history.

I can also remember having a brief episode when I was about 12 years old.  I believe it was CH because I remember banging my head on the floor.  After a few weeks, they went away and didn't come back again until almost 40 years later.

I think mine were inherited. I'm the 3rd generation sufferer.spooky huh?We (my family of ch) is prob. rare I would guess. 

Not as rare as you may think skull buster.  (BTW, I am originally from Tuscaloosa.  )  Like donna mae, I think that my paternal grandmother had CH.  Although never diagnosed, I remember my father talking about how she tied cayenne peppers around her head for her "headaches."  I also have two younger brothers diagnosed ECH.  (One has been in total remission for over ten years.)  I definitely think that there is a genetic factor to CH.

I smoke about a pack of cigarettes daily and drink only occasionally, though I tend to overdo it when I do drink.  But then, anything that I do, I tend to overdo.  I have long thought that there could be a connection between CH and addictive personalities.

Clustermom, I feel your pain.  Thankfully, my two daughters who are in their 20's, have so far been CH free.  But my greatest fear is one or both may develop it.  Or worse yet would be seeing my grandkids have to deal with this horrific pain.  That is the main reason that I have become so pro-active in trying to understand this disease and why I have been an active supporter of Clusterbusters through the years.  I think that eventually a genetic component will be found and that may be our best shot at an actual cure.  But short of that, I believe this treatment is by far the most promising one to date.  Bob Wold is my mentor and hero!

bobb

[jayhedges]

Bobb, I too have an addictive personality. My father died of scirosis of the liver due to alcoholism. I binge drank in college, and in my 20's and 30's while being a productive member of society. I only drank moderately for the past 5 years and not at all since this onset. Plan to stay off the alcohol for CH and general weight loss for a while. I always thought my classic migraines (onset at age 12) had something to do with stress I put on myself in athletics and academics in my youth and then career. But after reading here I think CH is pretty random, with a high degree of hereditary traits, but no one seems to be safe. No history of migraines or CH known in my family, and I pray my three kids remain free of both, now in their 20's.

[Steph]

Never smoked, drink in moderation every now and then, no head trauma - right weight for my height & build - always kept fit...running/swimming/weights etc ...drink loads of water..eat right most the time (junk food wkends, i like a nice Chinese/Indian take away/meal out every now and then)

I'm female age 45 and had Ch since i was 15yrs - turned chronic Jan 2009.....

I'v looked into everything i can think of...research ect etc....i'v just come to accept this is what i'v got & that its...doesnt mean i give into it without a fight....doesnt mean i wont try what ever i need to, to be PF  :