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didgens

How did it all start for you ?

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Im sure someone has asked this all before and if there is a thread with this already if someone would be so kind as to point me to it that would be great. if not perhaps you can share how this all started for you in the beginning ?

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I had lost a child on my birthday a few months prior. My son had been mauled by a dog recently and his grandfather was dying.My first attack was the day of my ex wifes horrific car accident. I guess you could say I had some things going on

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WOW.. thats just awful. Im so sorry.  do you mind if i ask if you only had the one ? or after that stress did you just have several day ?  im so sorry all this happened to you .

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How 'this all started'... prepare yourself.

First off, migraines run in my family. I've had headaches and migraines as far back as I can remember. The same with my brothers and sisters, nieces and nephews, etc.

My migraines got really bad when my first marriage was falling apart in the early 1990's. Longest migraine lasted a month, typical migraine is 5-7 days.

In 2006 I started on a pretty intense hormone replacement therapy to change my testosterone based system to an oestrogen based one (also known as gender reassignment).

9pm, Dec 31st 2006 I got a headache. Wasn't drinking, but was stressed about not being able to spend new years with my best friend (long story). That headache lasted 7 months.

Yes, 24/7 until mid July/Aug when I started having pain free periods approaching a day.

In the first week of Jan 2007 I had my first cluster, and they typically hit every Tuesday and/or Wed evening at 7pm for that year. Plus frequent and long migraines.

I have essentially been chronic since they've started in that I don't think I've ever gone more than a month cluster free.

My neurologist thinks that my hypothalamus was 'predisposed' to having clusters, and when I was altering my hormones, I triggered them.

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I have a real suspicion that hormones play a part. Everyone here talks about alcohol being a trigger. I am giong through menopause right now .. and ONE SINGLE SIP of alchohol will put me into a major hot flash.  Im thinking same mechanisim. I wonder if the information women are using to stave off hot flashes would be useful for CH ? is there a cross ?  worth looking into.

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I think mine started 10yrs ago as episodic but without the pain in the eye. I had 3episodes of a very sensitive skin on my left temple and the scalp above my eye that stayed for 3 months and was very relived every time it was gone! Never thought of going to a doctor cause there was no real pain, just very tender! Now I've learned it is called 'cutaneous allodynia'.

In beginning 2009 I went for an eye test, but the optometrist said there was something wrong and asked if I had sugar problems, but nothing was wrong with my sugar! In July 2009 I stopped using alcohol and then in December 2009 the 'sinus' problems started! First one a week during the night, then two nights a week, and then in the end four to five a night, and only then was diagnosed by a neurologist with CH. The prednisone and verapamil he gave me did help very little and with it I had real headaches, I see CH as a face pain and not a headache. Then I decided I rather live with only the CH as with that headaches too! After that it spread to day times also!

Was a wreck then, very near to suicide!!! But tried the licorice and it saved my life! It did not take it away but made it much better, and I think calmed me down to being able to think again. After the second successful dose of vitamins I have at least 2 relatively pain free days a week, but I think it is working! I have tried the RC seeds 3 times, but 3days after I took it, it was hell, and after that very little relieve. Now I'm harvesting some MG seeds along my jogging route, in case it is perhaps necessary in the future!

But like moxie-girl I think it has a lot to do with hormones! I was entering menopause at that stage!

h

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didgens

our replies was sent at the same moment it seems! Many women uses licorice for hot flashes!

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If there's a typical profile for a CH guy I think I might fit it.

I was in my early 20's minding me own business driving on the Long Beach freeway towards LA when this pain outa nowhere just started behind the eye, eliciting a WTF?! response. OK the Long Beach freeway thing isn't typical, but the early 20's thing is apparently common.

Another common aspect for a cuckoo subset of several guys on the CH forums Lenny and I have talked to, including Lenny, is that it started in the year 1980!  :-? Maybe it was just some sort of omen that a full decade of horrible popular music and fashions was about to ensue.  :D

I did the typical routine of having teeth pulled, blah blah etc. before going to a stone age pre-internet information hub known as a *library*  ;D, where I quickly found in a book that I had CH and O2 could be used to abort (the self diagnosis was confirmed by a headache specialist several years later).

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ok BeJee .. your comment about the 80's made me laugh out loud at my desk.  Hmmm licorice ,, well i know my mom isnt supposed to eat licorice because she has high blood pressure and its a vaso constrictor. so i can see licorice working. maybe better than caffine .. maybe quicker ? i'll take a look at that.

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i just found this .. he seems to have a problem after eating asian food .. maybe its the ginger ,, i had suspicions about this before .. now i really wonder

Vasocontrictor

•Bugleweed,Butcher's Broom, Chamomile, Camphor Oil, Cypress Oil, Ephedra, Ergot, Goldenseal, Heather, Ma Huang (Ephedra Sinica), Witch Hazel, Yerba Buena

Vasodilator

•American Hellebore, Skullcap, Barberry, Black Cohosh,Black Haw, Coleus, Fenugreek, Feverfew, Garlic, Ginger, Ginkgo Biloba, Ginseng, Goldenthread, Hawthorn, Horseradish, Ho-Shou-Wu,Lemon Balm , Linden Flower, Nettle, Olive Leaf, Parsley, Prickly Ash, Siberian , Ginseng, Valerian, Vervain, Common Yarrow

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maybe its the ginger

Just FYI - There is at least one CH'er around here who actually routinely uses ginger to quell shadows.

I would suspect MSG first for anyone whose CH attacks are triggered by Asian food.

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I was 22 and was given a really great concussion. Headaches started 3 months later. Lasted 3 years, but about a level 5. EEG, etc., migraines they said. Beta waves were screwed up?! After 5 years, abandoned all meds and was better for over a decade.

Mid 40's, Trigeminal Neuralgia supposedly. Could not close my mouth as the teeth felt like mountains in my mouth. Not like they interlocked at all!!! Pred. prescribed. Spent 10 days or so sleeping on the sofa on my back and putting heat on my face. Pred knocked it out.

Mid 50's, got a really good taste of the dragon for a few months running. Carbazapine (spell?) fixed it, till I sort of OD'd on it and had triple vision!!!! 

I have had teeth pulled, antibiotics for sinus infection, sinus surgery, etc. Diagnosed myself and took the info to the Dr for him to read. 'Well, I'll be danged, women don't get that.'

In the last decade they have ramped up and lasted up to 7 months, 4 per night that lasted 2.5 hrs. each. Had to drag hubby to Neuro with me to get any meds! >:( Women are weak little things who can't take pain.  Never mind I had a C-section with no pain meds after!!!! Yeah, we are the 'weaker sex'. Took a boatload of meds that sometimes worked and made me nuts.

When they tried to put me on Prozac I bailed. Now, I am here, have welding O2, etc. and am better than I have been in over a decade.

MSG sucks for many and it is not always listed. Stay away from it on general principles. :) O2, Melatonin, D3 regimen, caffeine, are dailies at my house. :D Pharma is not part of my day anymore.

Note: I am with Jeebs on the 80's. 88 is when it really started to kick in for me. Lordy (sorry Jeebs, it fit! :-[), that is a long time ago now!!!!!!!!!! :D

spiny

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My CH seems to have been awoken by allergies.

I'm 58, and prior to my early 50's I rarely had headaches (usually tension or hangover types) and was NOT allergic to anything.  About six years ago, the allergies started, with Springtime occurrences and light symptoms that steadily ramped-up over the next several years.  Began noticing that alcohol, windy/dusty days and afternoon naps were giving me headaches that also got worse.

After tons of allergy testing and WAY too many medications, I was ready to give up.  Then (4 years ago after a long airline flight) I was introduced to The Beast while driving to our final destination.  June 20, 2008.  I had taken double doses of every pain reliever known and thought I was surely going to die.  Agitated, crying and acting very Zombie-like, I pulled over and paced the streets.  Then it suddenly went away. :o ... only to return many more times in the next several months.

I again consulted my doctor.  I told her the allergy symptoms were tolerable with OTC Meds, but the headaches were devastating me.  She simply said that it was possibly Cluster Headaches and sent me for a CAT Scan to eliminate physical defects.  That was negative and she referred me to a Neurologist for further guidance.  My doctors are both great people, but have literally been NO HELP since then. :(

I began researching this “Cluster thingy” and got really scared seeing that I had 10/10 symptoms.  I found ClusterBusters and joined 2 ½ years ago, learning about proper oxygen setups, the dreaded list of pharmaceuticals awaiting me and the potential for relief with Vit M. :D

Have been Chronic since the beginning and with O2 and Vit M at my side, I can live a pretty normal life with work, my most understanding wife and friends.  I also keep O2 in the car, just in case.  Imitrex injections await my first CH occurrence without these abortive measures. 

Nothing ever changed with work, diet, residence, spouse or environment.  I have not been able to determine an actual cause, I just got older.  I cannot take the side-effects of other popular treatments.  RC Seeds worked pretty well too.  Seems the natural substances are a good way to go.  I’d only have 10% of this info if it weren’t for all the great people involved in ClusterBusters.  No matter how hard the medical community tries (at least my Dr’s), their hands are tied by the medical business and the shear lack of knowledge about this crappy affliction.

Wow, my heart goes out to most of you guys/gals that can relate the onset of CH to such tragic situations.  Interesting how most of us can remember the exact day that it all began ..... kinda like an anniversary from Hell.

PF days to you and everyone ....

weatherman

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sorry forgot to add. AMongst the brutal stress I was under...that I beleive is the cause of the disease for me....I later found out triggers for me. Alcohol( i havent drank in years but would maybe have 6 beers a year when I did-just the neck of a beer is an instant attack for me) so no love lost there. Wasnt smoking. I was 25+ year heavy smoker and have been smoke free pushing 2 years and zero improvement. But also chocolate,any nut(no I am not allergic), red dyed foods/drinks, MSG-chinese food as good as it tastes equals Kip 10s for me, red meats-sometimes.Usually really high quality red meat. Hottubs, yes hottubs,saunas cause brutal attacks for me. Sucks because I love heat and hate cold. And the number one ding ding ding......stress. i try to avoid it like the plague. Sometimes I can not help things that stress me out and 99% of the time its people and I can not rid myself of stress. I have learned o deal with stress better. Rid myself of arogant friends who only care about themselves. do things that make me happy.

Sorry should have wrote that in my 1st paragraph.didnt meant to go offtopic r steal someones thunder.

Blessings eveyone

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just out of no where, come home from work one day, got an icepick in the right eye, 5 yrs now, chronic, after all the tests, drugs and applied science I would lets them do to me, I'm here leaning on you guys, thanks for all the knowledge and support...

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there was no msg listed on the package ,, secret ingredient perhaps ? 

Chinese food and MSG go hand in hand.  They probably have it under a different name,  something long to confuse people.

First CH hit was after a stressful day of work(Army) and I had just sat down on my couch starting to relax and BAM!  They woke my up out of a sound sleep for months straight after that until I seen a Neurologist and started Verapimil.  I really don't know if it was the Verapimil because they all ways come back even if I am taking verap.

  I was 21 years old when they started. :-/  I also tried everything from having teeth pulled to sinus surgery to help with no results.

For the past ten years or so I haven't had to worry about them coming back because I turned chronic after having stomach surgery and taking a bunch of pain killers. :(

CH

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Sooo its a crap shoot what will happen to my son.  I have to think there are hundreds if not thousands out there like my son that get them sporadically, and never get a diagnosis and just suffer through them.  So far knock wood he has had 2 in the last week.  1 Monday night (after a seriously radical change in sleep pattern that weekend) and a milder one on wednesday.  nothing since. VERY VERY bad allergies in the whole house right now. he took 1 Claritin each day the last 2 days.  I dont know what to think.. I guess there is nothing for me to do but sit and watch him, armed with this site and all the knowledge you wonderful people have gleened from self experiement (much like me with my menopause, but dont take me there ;)  ) ,,

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maybe nitrates in the food ?  i do seem to remember he had a problem before when i bought this different "store brand" smoked bacon,, and i know all the nitrates in the bacon. That would lend some creedance as to why white wine gives me hot flashes but vodka doesnt .. nitrates ???

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i do seem to remember he had a problem before when i bought this different "store brand" smoked bacon

often there's msg in store-brand smoked bacon.

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My first was when i was 21. I was in college woke up hurting as we all know. Could not work through it and went to the college health office.  They gave me 50 mg phenergan suppository. Made me sleepy but still had tyo endure.  Being in college i think the trigger was alcohol. Then I learned my ch s occured the last and first quarter of the year. Learned migraines in the family.

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