Hi Marty,

Welcome to the board. Hey, we can all sympathise with your plight, experiencing the pain from a full blown attack can be a very frightening and disorientating experience. For years I was misdiagnosed and during cycles I would on occasion get angry during large hits. I think this anger manifested from a number of things such as the pain, loneliness and the lack of understanding from the medical profession and people in general.

Could you tell us a little more about what medications you are on. Marty many people on this site use a combination of medications to fight back against the pain associated with CH's.

A lot of people will begin with a steroid taper, this taper usually blocks any signs of pain associated with CH's. At the same time they take what is known as a preventative such as lithium or verapermil as these can take a couple of weeks to begin working on the system.

Once an attack starts the most effective abortive for many is oxygen. I can abort an attack within 5 mins using this method. Please read the 02 section to your left.

I know longer fear cluster headaches like I used to, now I have the treatments at hand to fight back.....


Lefty..!

well i have inquired about o2 as my wife has been doing research on this but trying to get a doctor to prescribe this for me was impossible, i have seen about 10 doctor and a neurosurgeon, one doctor told me i have to learn to live with it, , originally i was put on blood pressure pill s because whenever i seen a doctor was usually during a ch at the hospital or right after at the clinic, it took me the whole time of my first attach about 8 weeks of screaming at the doctor that i dont have high blood pressure it only during these that its so high, i had to live with the pain and let me tell you i did not think i would survive them, finally i found a doctor that under stood this and knew what i was going thru I'm not ashamed to say i cried at his office because i was so relieved to finally find someone that was familiar with these, and understood what i was going thru, when i get home I'm at work now i will grab my pills that i was prescribed and add them to this post their is so much i cannot remember, the spelling or name, I'm a health nut so i don't like to do any drugs but whenever i went to a docs office i got the feeling that they thought i was trying to get drugs to get high on or something because I'm a native Canadian, and the prejudice in this country is just like everywhere else i guess,

OH i also forgot to mention that i work with another ch sufferer if it was not for him i think i would have been looking for a doc for years, i cant say I'm happy he has it but I'm awfully happy that he could refer me to someone that is familiar with this, ch, i lost a lot of respect for doctor because of this, but my new doc will restore my faith in modern medicine, once again thx for listening

   k i found this board at work and could not spend a lot of time so i am now at home and can get into this a little better.

Ii first experience this nightmare nov of 08, it started at about 2 in the morning i woken with the worst pain i have felt in my life my wife awoke to find me rolling on the ground crying, i have never cried in my life, so i scared the shit out of her, she said i looked disoriented and could not answer her questions legitimately, so she thought i was having a stroke, we went to the ER where i was rushed into a room and examined.

MY blood pressure was 244 over 116 so they thought i was having a heart attach, after i let them know that my heart was not the problem but my head the immediately thought i was having a brain aneurysm or a stroke, i had a spinal tap on the spot, the doctor asked me if i wanted a shot for the pain of the spinal tap and i said doc believe me i wont even feel it and i did not as my head pain was not going to give me that sweet relieve of actually feeling pain somewhere else, in the hospital i received morphine but it did nothing to relieve me of my pain it just made me feel sick so i decided to not even get it anymore as it did nothing to ease my pain and even made me feel worse than i already did, they tried a few more pain relievers from Demerol to i don't know what but nothing work, i spent three day in the hospital so they could monitor me, my wife knew this was serious as i hate the hospital i spent a lot of time their as a child because of third degree burns i received and believe me i would prefer that to this any day.

Every day i was there i had a cluster headache at around 2 in the morning then again at around 9 or 10 in the morning then again at 5 or 6pm then again around 10 pm, i was going crazy thinking i was dying or wanting to after the third straight day of this pain, i had no idea i would go thru this for another 8 weeks.

I seen a few Docs that made me lose faith in doctors one actually told me i have to learn to live with it, and that its all in my head i got so angry that i actually thought i would lean over and start chocking him it really scared me cause i am a very passive guy that it normally take alot to get me angry, and my anger during these headache is something that i have never felt before and if i had not had these headache would never think i could feel like that, then i stumbled across a lady from israel a Dr Garnigal the first doctor that wanted to help me as she could see i was at my wits end she prescribed me blood pressure pills as she wanted to try lower what my blood pressure was getting to during these attaches, she also prescribed me a beta blocker i believe she called it,   its medical name is SANDOZ-TOPIRAMATE 25 MG also APO-METOPROLOL 25 MG THIS WAS THE BLOOD PRESURE MED,  i had a few more but seeing i am seeing my new doc my wife has thrown them out, the neurologist i am seeing also prescribed me NOVA-KETOROLAC 10MG AND NOVA-CHLORPROMAZINE 50MG, the beta blocker helped reduce the pain,

After 8 weeks they went away and every thing was roses, then out of the blue april 20th of 2009 they started again and the symptoms are the same, when i whet back to see the doctor i was seeing last time i had some bad new, my old doc had a heart attach and returned to israel so i had trouble again finding a doctor to even give me what i was getting before so i had to go thru most of this cluster without any relief, the my coworker heard me talking about what i was going thru


and pulled me aside and let me know that he suffers from those for years and was sad to hear that i do now as well and referred me to his doctor thank you JESSE you are a true friend.  my new doc has increased my meds but my headaches still are so bad that i cannot sleep but i am hopeful and relieved that i have a place to come for advice and my cluster headaches are not over yet this time around but i know that they are going to stop soon as i dont have them as often and they do not seam to last as long during the last week of them if the last time is any indication then i am sure that they will end

by next week the 2 am headache is the only one i seam to have that is really bad these days and my wife and kids are asleep so they dont have to see it.  i sleep down stairs during these headaches as i would rather my kids or wife dont see me like this, i still have one or 2 during the day but they dont seam to last as long as before maybe a 1/2 hour,  i wanted to see what i looked like when I'm having one of these attacks so i videoed myself in my basement bedroom during one

and its sad to watch even though i know that's me I'm watching i feel sorry for the guy on the video, after i watch it i delete it so no one else gets to see it. another med i am taking and cost about 25 dollars a pill is MAXALT RIZATRIPTAN RPD 10MG but it really does not do much, i want to thank you guys for this site and apologize for the long post its just so nice to get to vent a little and let people  know what I'm going thru as i will diff read what they have gone thru and sympathizes i have already read alot on this site, and will be a active member and support for anyone that needs it

to the strong to the touch to the guys that can go thru anything and keep the faith when they get cluster fucked i salute you. 

Most of us here could sing the second verse of your saga.... Welcome to Clusterville....

We're sorry you're here, but glad you found us...

The O2 advice is golden. Most of us swear by the stuff. If used properly (see left side for instructions) it's a godsend.

Prevents are important. Everyone has to find their own - what works for them.

Melatonin at night helps a lot of us get thru the night hits and get some rest. I very seldom have night hits and swear by it.

Red Bull (or an energy drink with caffeine and at least 1000mg of taurine in it) at the first sign of a hit will sometimes abort it - BUT you gotta get to it before it gets rived up.

Print off the literature on O2 at the left and take it to your doc. I just can't imagine a doc NOT ordering O2 in this day and time - it IS the first line of defense in our CH -the ACCEPTED RX! Sometimes we have to EDUCATE the docs...

Hope this cycle ends soon and you have good news for us.

Again welcome to Clusterville.

Hugs BD

Hi Marty, and welcome.

I'm sorry you have to be here, but, you've come home, to a family that completely understands what you are going through.

Please read everything in the buttons to your left - there is so much information there that you might print out and take to your doctors to talk about different medications, treatments, things that may help you.

There are literally  hundreds of different "cocktails" of medications that we take to prevent and to abort CH.  It will take some time for you and your doc to hit on the cocktail that works for you, so don't give up.

In the meantime, melatonin as said above, does help with the nighttime hits.  Red Bull, or any high caffeine power drink with taurine, also said above, helps to abort a hit if you chug it down(do not sip) at the very first inkling of a hit.

And, I too, will tell you that oxygen, with a non re-breather mask, and a high lmp regulator could be your savior to abort hits.

The one thing I want you to know is that everyone here is ready willing and able to help you with advice, a shoulder to cry on, and an ear to listen.  Remember one thing that I was told when I was a newbie in 1999 - there is no stupid question except the one you didn't ask, so ask away.

Sandy

I dont want to be the broken record, so I wont repeat everything above.  It's all good advice though, and you certainly aren't alone.  It's nice to have someone, in person, that understands too, and we're all here pulling for you.