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Common Threads of CH Sufferers

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I never really thought about it until now (after reading about all the head trama) But when I was about 15 I  was at a 311 concert and got a concussion. I was crowd surfing, got thrown into the air by two huge guys (I weighted about 120lbs) and on the way down my heel hit someone's shoulder and I landed head first. I literally felt my had bouncing on concrete. The whole place stoped and helped me to the paramedics in the middle of the concert.

I started having the headaches maybe about a year after. Around 16 I suppose. Here's the thing. At that time I was using LSD, mushroom, E and other thing for recreational purposes...I'd have a couple of weeks of "migraines" and then would go to a party...do drugs. Then no more headaches. I did drugs like this, maybe twice a month (hallucinogens) , until I was about 20. After I stopped the recreational drugs on the weekends, The headaches came.

At 21 I was told I had "cluster migraines"...by a few doctors

until I was almost hooked on pain meds from a 4 month cycle, I finally was referred to a doctor in Texas that happened to be an expert on cluster headaches. He was a neuro-optimologist. The guys was like,"I know your problem. But You are not going to be happy about this. You have cluster headaches."

I was like,"Damn, I thought these migraines were way worse than that...how can this be just a headache"

Then he told me it was worse....and that it wasn't going to go away anytime soon. What a fucking terrible bunch of shit.

So, I'm getting mushrooms to try next.


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  • 2 weeks later...

I'm 26 right now. Uh... you want my medical history? It's long and complicated. So I'm just gonna list what I've got/had done. I don't think my disease list covers everything, but I'll list it.

Complicated Migraines

Memory Loss

Pseudotumor Cerebri

Abdominal pain



Vocal Chord Dysfunction


Allergic Rhinitis



Abdominal Pain with Bleeding Gastritis

Chronic Depression

Chronic Interstital Cystitis

Obsessive Compulsive Disorder

Closed Lumbar Injury

Chronic Sinusitus

Post Traumatic Stress Syndrome






Histamine Intolerance Syndrome

Cluster Headaches

IBS with constipation

Intramural Uterine Fibroid

Idiopathic Angioedema

Also, all of my doctors are positive I have some severe autoimmune disease that no one has diagnosed yet. A blood disorder, too. No one has been able to figure it out. I once nicked myself shaving, and it looked like someone had been murdered in the bathroom. Pityrosporum Folliculitis, too.

Quite a lot about the last year, but I'd rather say it all, than leave anything out.

Mom and I both in distress at birth. Appeared perfectly normal.

Central Apnea from birth. (Discovered at 12.)

Urticaria / Anaphylactic reactions from the age of 9 months onward.

Chronic Asthma from 2 years old, grew out of most of it as a teenager, but was inhaled steroids as a child. Chronic bronchitis.

PTSD from 2 years old onward.

Chronic sinusitis from 2, at 5 had "Windows surgery" 5-6 they went in, re-opened and enlarged windows, removed polyps. 3 surgeries in all.

T&A at 5.

Complicated migraines began at 9. Sub-arachnoid hemorrhage suspected, 9 Lumbar punctures in a period of about 24 hours.

Epilepsy diagnosed at 9 later on. After mis-diagnosis as low blood sugar.

Hips popping out of place / dislocating diagnosed at 9.

Hit in the left eye with a plastic golf club by Grandpa trying to teach me to golf. Had no idea I was behind him. Cluster side mainly on that side. Also ran headfirst into a buggy at a supermarket and went out cold.

11, Giardia infection due to swimming in a polluted creek. Taken off of 80mg of Elavil to prevent migraines because of antibiotics needed. 2-week long headaches result. Ulcer, too.

12, Christmas time of same year as 11, diagnosed with Pseudotumor Cerebri / Idiopathic Intracranial hypertension. Diuretics did not work on me, had 1 lumbar puncture per week for 4 years. Have now had over 250 LP's.

Put on Klonopin for the migraines, triggered chemical imbalance that I have never recovered from. Was depressed and suicidal for 2 weeks, put on Zoloft to help.

12-13 (not exactly sure when) Flatlined/Coded during LP. Had been given a suppository the night before that shut my gut down. Anesthesia does not like food on your stomach during procedures. Mom watched the whole thing, was dragged out, brought back in 45 minutes later. No brain damage found, considered a miracle by all involved. Was up and walking around the next day, chest was black and blue for over a month after.

13, tried on Pred for the IIH. Developed 2 compression fractures to my spine after tapering off of it. Assumed to be due to the pred. Took off turtleshell brace after 6 weeks.

14, Uh oh, more compression fractures. Pedi-neurologist checks out the full body MRI from age 9, discovers 2 compression fractures no one noticed at the time. Diagnosed with Idiopathic Osteoporosis. Grandmother died right after birthday. OCD began.

15, Seizures become active again. Spend year having severe gastritis off and on. No known cause at the time of the seizures, or the gastritis. Put on Depakote right before turning 16, increased blood ammonia level to 140, hospitalized for liver failure, removed from Depakote, tried on IV Dilantin. BP dropped to 70/25. Went into status seizure, then coma for 3 days. Told it was another miracle that there was no brain damage, or heart damage, or liver damage.

16, Appendix ruptured in Oct. Was left in for over 36 hours, no one had any idea it wasn't in tact. Spent almost 3 hours in surgery having it 'chiseled' out. Supposed to have been in the hospital for 1 month, left before 2 weeks were up. Healed fast.

Diagnosed with Hypothyroid. Rickets. Body never would absorb vitamin D.

Case of MRSA staph. Joy.

Zoloft quit working, tried on Paxil, became psychobitch, put on Welbutrin.

17, seizures stopped completely. No known reason. IIH continued to cause problems. Severe trauma during this year during an LP that went bad, refused to have any more for 3 years.

18-21, anaphylatic reactions continuously get worse. Began having LP's again at 20. IIH goes into remission after 21st birthday.

22, Stomach pain begins again. They spent 2 years trying to figure it out. Had first angioedema reaction somewhere around here.

23, Bleeding / horrible periods begin to get worse. Diagnosed with a Uterine Fibroid. Intramuscular. Put on Ketotifen sometime this year I believe.

23-24, Gallbladder removed on Jan, 4, 2008. Stomach problems cease other than IBS with constipation.

May 28th 2008, Cluster Headaches begin. Yay. Welcome to hell! :D

24-25: PTC/IIH comes back in May 2009. LP determines it is back for sure in July 2009. LP relief only lasts for 2 weeks, shunt is decided on. Lumbar Peritoneal Shunt is put in August, 13, 2009. (I didn't want one jammed into my brain, thank you very much.) 1 month of some of the worst pain I'd been in next to cluster pain. Everyone warns you that the surgery for a shunt is horrible, it really is. There are no words.

My Grandpa (Papa, the man who raised me with my Mom.) dies September 22 2009. Worst day of my life.

Sept 28 2009, I notice that my stomach does not feel right, go to the ER, find out that oh boy, my shunt in the peritoneal cavity has popped out of place.

Oct 23 2009, shunt is put back in place.

Nov 11 2009, shunt is back out of place again.

Dec 11 2009, surgery to put shunt back in place is cancelled when it's revealed I now have about 7 dental infections. Thanks Mobic, for killing my tooth nerves! GREAT SIDE EFFECT MAN. I was on it at some point when I was 16-21 for the chronic back and bone pain due to the osteoporosis.

Jan 7th- January 14th 2010, ER visit reveals that my shunt has in fact disappeared into my body. Which, should be impossible, ER is horrified, we are horrified. They send me home on vicodin, which, does not help. End up back at ER, transferred to Galveston since the Beaumont ER has no idea wtf is going on, and once you have a neurosurgeon, all of the doctors believe that you have some kind of cooties. They don't warn you that once you get a neurosurgeon, no other neurosurgeon is allowed to touch you.

One of the neurologists / neurosurgeons on my team convinces the dental surgeons (That's not what they actually are, I can't remember) to pull 4 of my teeth so I can have my shunt surgery. 4 days of procedures back to back. LP in my room, which fails. LP down in day surgery with anesthesia and floroscopy which works, teeth pulled, then shunt surgery.

Now, here's the best part. I find out the next day the shunt popped out of place because I had been so severely constipated the tubing in my stomach was literally forced out. The newbie neurosurgeon informs me that "You kinda freaked us out after your surgery."

"What'd I do?"

"Well, after Dr.Anderson had put your shunt back in place, I was supposed to sew you up. We had towels on your abdomen. You kinda woke up, and sat up and shoved your hand into your incision."

He was making a "WHY DID YOU TRAUMATIZE ME BY DOING THIS?!" look on his face. I have clearly irrevocably disturbed this man.

Mom and I had been wondering why they had me hooked up to a bag of Vancomycin. My response after he left was "Who in the hell untied me? They velcro'd my hands down before working on me!! WHAT IDIOT DID THAT? I would have asked for a glove before doing that if I'd been awake!"

Shunt problems are fixed. CH takes center stage again.

Headache specialist puts me on Seroquel, since I'd been on it for the anaphylactic reactions about 2 years previously. July 21st 2010, we do an occipital nerve block. I consent to Triamcinolone being injected into the back of my head since steroids are the only thing we haven't tried... and since I felt like I had no other options. The lidocaine works, my pain is better for the 2 hours afterwards.

We thought the Triamcinolone would be okay because I had a lotion of that a few years ago and it did absolutely nothing to me.

1 week later, exactly, the steroid kicks in. Proving I cannot use steroids by making the beast attack worse.

I see pain management 9/9/10, we decide to try RFA on my left occipital nerve. It works for about 2 weeks, then the pain is worse. Pretty sure I was okay at first due to the Ketamine included in the anesthesia. That RFA was on Oct, 13, 2010.

Dents appear in my head around the 30th. No one can figure out why.

Pain increases, becomes worse, starts up worse on the right side, too. Pain management convinces me to try RFA again! Yeah, let's do that! Both occipital nerves! Nov 16th, 2010, I have it again, start sobbing during it because I'm hit so hard. They give me Fentanyl, it gets better, then I spend the next 48 hours unable to sleep due to the hits. End up at the ER, it takes 20mg of Morphine to kill the hit I have. That had never happened before.

I see a cancer specialist / TN specialist, she puts me on Methadone Nov 30th. It helps lots, we set up TN block for the 14th of Dec. It backfires, the pain is more severe, by the 21st, she's sure I'm no candidate for any surgeries. Methadone is the best option.

She refers me back to another doctor in the practice, I see him January 20th, he decides since I had 11 days where the pain had flared up again that the Methadone is too risky. He took me off of it, told me I had no options.

I consider the CH terminal at this point, so I start looking at cluster busters.

Oh, height and weight...  5'7", right now I'm about 175lbs, but I've lost like...65 since the shunt was put in. It's just kinda removed all of the excess water weight I had. I'm still currently losing weight at this point.

I don't smoke. Even smelling pot leaves triggers me. Oddly alcohol does nothing at all to me. The scent of Gasoline sets my head off horribly, too.

Had allergic reactions to most of the medications, too. Lamictal was the most messed up. I took it, began laughing hysterically, and THEN my throat closed up. I wanted to keep the bottle around just in case I was ever severely depressed. My Grandpa threw it out.

Most anti-epilepsy medications I'd already had anaphylactic reactions to. Verapamil worked but closed my throat up. Cardizem, Lamictal, Indomethacin. Lots of others.

Hope this helps someone.


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Dang girl.

You made me feel much better. I thought I had it bad. I have told my story hoping to make others feel better about the fact that they..."Only had clusters".

My heart goes out to you. You are brave to share your history with us. It may help someone else, ya never know.


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noticed alot of head trama listed - I have NO idea if this relative or not. I am just starting to research dysfunctions of the hypothalamus... :question


A trauma such as an accident that affects the head can also lead to hypothalamic dysfunction. A traumatic brain injury from an external force causes too much bleeding and can eventually lead to hypothalamic disorders"


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I was dropped on a coffee table a couple of years prior to my onset. Funny thing is that I slammed the same side of my head that I used to get the clusters on, Temple free fall connecting with the corner of the table.

Other than that two concussion (that I know of) playing sports and I am told my older sister dropped me on my head as a baby! Lol!

Actually, this may explain quite a few things that have nothing to do with clusters!   ;D

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I think these thread have great value, we don't know if there are different causes for CH. That would make sense to me - as there seems to be different things that help different people. As we keep looking for the major commonalities, and sub-commonalities,  we have a stronger base of evidence to work with.

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  • 1 month later...

Good Day Friends!

Just following up on this thread, as my cycle has come early this year, and it is kicking my arse!  I haven't had a full nights sleep since March 5th.  I could only find philosopher stones to treat my headache, and they have not been too helpful for any long term pain reduction.

Anyhow, I was thinking about when my cycle began, and it was in Idaho, about 12 years ago.  One thing keeps coming into my head is the amount of cavities I had while in Idaho.  I had 8 fillings in 2.5 years.  My dentist that I grew up with said that they probably were not cavities, but pits and most likely, the dentist was being aggressive and making a bit more money off me.

Well, the headaches started about a year after that.  So, do any of you think that there might be a correlation between mercury and CH's?

Does everyone on the board have fillings? are they mercury amalgams?

Thanks!  and PFD&N's to you all!

Tuck! :-X

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  • 2 weeks later...

I thought I would post and add my background information to the thread.

I started getting the beast when I was 17, have been both episodic and chronic, and my cycles are usually anywhere from 4-8 months long. I don't like medication and refuse to try anything but imitrex and O2 (I'd rather suffer the CH then have other complications in the long run). The Vitamin D3 and Fish Oil regiment has been working as of lately, reducing the attacks and severity of my cycle.

I have never used any type of drug, drank alcohol for about 6 months of my life when I was 23 (maybe 2 beers at a time), didn't have any fillings in my mouth until I was 21 (4 years after the Beast became), I've never had any type of head injury, I'm extremely active (ran cross country and track in college, still run and cycle a lot), eat healthy, had my appendix out at 19, and broke my back in a skydiving  accident at 26.

Until there is a massive amount of additional research, I'm not sure we'll ever know the cause of CH. Seems that there are a lot common ailments among us, but considering the large number of sufferers that are out there and have not been diagnosed properly or visit this site, we are only guessing.


Have you visited CH.com and viewed the 123 PF Days thread? I would suggest at least giving the regiment a try as it has worked for me and others. $15-20 worth of vitamins and supplements could save you a lot of pain!

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Yes, it was always interesting hearing people's response after I explained why I was wearing a back brace. Not sure how to describe the instantaneous pain of compressing vertebrae, but it sure as crap wasn't as bad as being off and on roommates with the Beast. The first thing I thought after slamming into the ground at 25mph was, "Damn this hurts, but not as bad as a CH". Of course that was after I yelled my brains out in pain for about 30 seconds. Good memories!

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never had a headache that an aspirin or two or a bc powder wouldn t cure ,usually brought on by drinking a few too many beers  , and had a few eye strain headaches from working as a jeweler for too long ,  then after car crash started getting these horrible headaches , perhaps there was head trauma that no one realized or that seemed minor at the time , or maybe happened when you were very young and don t remember , just enough g force to jolt your brain ,falling off of a bike or something , sports?

maybe whatever is the cause they will eventually find it

, i knew immediately something was broken , but if it happened when you were young you may not have realized it

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matter of fact when i went to emergency room that night i had them check my head they did a cat scan found nothing

which surprised the hell out of me because i knew something was not working right

and i probably sounded like a druggy or something asking for pain medicine

at the time of the accident , i hadn t taken any drugs in years , hardly even drink beer anymore since 2005

was totally astounded that they found nothing on an mri


does anyone know where you can get a functional mri , i keep reading that they can see cluster headaches even out of cycle?

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Thanks Shocked.  Old articles but certainly good ones.

From the second article in 1993:  "the patient will often be relieved to learn that bizarre behavioural responses are not a mark of insanity."

That's very good to know I'm not insane.  At time's I've wondered.  ;-)


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I have a mouth full of the old fillings and have wondered the same.

My CH started 30+ years ago.

Amount of cavities/fillings I've had in my lifetime:


I've been clocked on the noggin purty good though as a kid. I know some CHers have a knee jerk response that "it's a defective hypothalamus - head trauma has nothing to do with it".

To which I have to think "yoohoo! head trauma can cause the hypothalamus to become defective".

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I honestly thought I was crazy when I went into cycle. I seriously had no idea why I had to pace around, why I wanted to shoot myself because the pain was so severe, and why in the hell they couldn't see anything on the CT scan.

On another note...

Jeebs, I don't think they know what all a bump to the head can actually do to our brains. I mean, hit it hard enough, and I'd imagine we'd end up with a malfunction somewhere.

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  • 1 month later...
I've been clocked on the noggin purty good though as a kid. I know some CHers have a knee jerk response that "it's a defective hypothalamus - head trauma has nothing to do with it".

To which I have to think "yoohoo! head trauma can cause the hypothalamus to become defective". 

especially when that hypothalmus is developing and growing


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  • 1 month later...

I'm 49, have had Clusters since I was 20.  Head injury as a kid that was significant.  Very little drinking, no pot, no other drugs.  15 lbs overweight, I exercise regularly, eat a healthy diet, get lots of sleep (important for Clusters!).  I've been told I have atypical Clusters.   Nothing worked for me by Imitrex and I got headaches 2-3/day quite a few days of the week and they didn't leave.  A few years ago, I went to a chiro who xrayed my neck and found a disk out of place.  Most of the time, if my neck is 'in' I get very few headaches. I realize this is weird and unusual.  I do get Clusters occasionally that seem to be stress or hormonal.  I think we ought to do a poll if one hasn't been done, just to get an accurate read from as many people as possible.

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