Hello,Just a quick introduction.Been suffering CH's for many years now without diagnosis.Been put down to migraine or some sort of neuralgia up until October,2008.Got sent to see a neurologist,got diagnosed and it was almost a relief.I suspected that people thought I was faking it as over here in UK there is very little public awareness for this disorder, but after reading about other sufferers the pieces fell into place.As all are aware,unless you suffer from CH's you just do not understand.I am a chronic sufferer and have had upto 8 attacks in one day they are relentless,I average between 3-6 attacks generally.I use 3 script meds,two triptans 6 and 24 hour types and ergotamine and keep oxygen for a back up.This is so I can take drug vacations,which only sounds like fun,to prevent toxicity from long term use.Have noticed one good thing about this whole nightmare though,when sufferers meet or contact each other there is an instant bond knowing that this person understands.I feel that here already just reading the posted messages.Anyone wondering why my screen name is Jeronimo,it's simple,I'm actually a quarter native american. I signed up to use this site mainly in the evenings early hours of the morning when....... well you know! Meds don't stop whole attack and generally cannot fall back into bed until 05:00 hrs GMT. Hello to anyone and everyone.And wish you all a long or permenant remission.Back soon if anyone interested. xxx         

HOW!  Sorry, lame!! ;D But danged glad you found us. You're right, the first time I met a CH'er in person was when I got talked into a meet and greet in Sacramento. Met the likes of Bob P, Linda H, the BZZ man....a seriously life changing event!!!!

Couple comments on your treatment regimen. I use oxygen first. Just wanna make sure you're using it the most efficient way. Non Re Breather Mask, High Flow Rate, started at the first hint of an attack. It's all but eliminated my trex useage.

And I don't see a prevent med. I use lithium at 1200 mg a day while on cycle. It will reduce the number of attacks by 60-70%. Verapamil is a common first line prevent med and topomax has a very loyal following. You'll see others post about it, might be worth talking to the doc.

Welcome home. ;)

Joe

Welcome Jeronimo! Sorry your sleep was interrupted but you're more than welcome to pull up a chair and hang out in this nut-house.

There are a number of people that post on the board from the UK. We've had the honor of meeting a couple of them. Nothing like meeting a fellow sufferer to know you have a friend for life.

If you have someone that provides you with support when you're suffering, we have the supporters corner where we can exchange ideas too. I'm a supporter (Guiseppi's wife).

Welcome!

Christy

Just wanted to say hi and welcome.  I have to agree - tend to go the oxygen first - don't do so well with the meds.  Sorry to hear that you are a chronic sufferer - that sucks!!  Hope you get to enjoy some pain free time.


Kate

Relentless chronic attacks like that - oh man that's un-freekin-believably horrible to hear about.  >:(

Very sorry to hear of your plight. I'll echo what Joe (Giussepi) said about hi Flow/non rebreather O2 (if you aren't already taking that approach). Around these here parts we find the oxygen info link to the left of this page to be the favorite source of info on that subject.

Hey have you noticed the discussions yet regarding how your native american ancestors had an effective treatment for CH, and how many modern day CH'ers (includng chronics) are giving it a go, many finding success after the medical establishment has failed them?

Of course this would be illegal now in most countries - It involves psilocybe mushrooms or similar plant life, and here's a video talk on the subject by one of our fellow CH'ers:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

If you become interested in this, there's a forum that focuses specifically on it over at:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

[Edit:] I read a biography on Geronimo once and came away feeling that he was one of the most amazing individuals ever known, so I consider your screen name to be the coolest.  8-) To this day I still wish I was a pre European invasion Apache.  ;D

Welcome!!!!

Isn't it ironic how being diagnosed with such a terrible condition can be such a relief?  But it is.  At least then we have a name for our pain (rather than calling it just 'that #*!%&#').  Once we put a name on something, it's boundaries are more defined and we can wrap our minds around it.  My belief is that some of the pain is really based in fear...

God Bless and I'm glad you're here!!!!!

Welcome friend!!  Sorry you had to find this site.  Yes, for me too it was a relief to FINALLY know what the hell was wrong with me.  I was also surprised that something as simple as O2 could end most of my suffering.  I remember the first time I got on the O2 I didn't expect much.  How pleasant it was when I felt the pain leave my head after a few minutes.  That was back when O2 was prescribed at 8-12lpm.  Now I've got it written for 12-15lpm and my new provider has order me the 25lpm regulator.

I have only met one other CH in person, and yes there is an instant bond.  We are the only ones that can identify with each other when it comes to this pain.  People that do not suffer from these never will understand although some try.  I hate it when people I know ask me how my "migraines" are.  WTF.  These are the people that don't even try to understand.

Thought I was chronic once; 7 years straight without relief, so there is hope.  Then one day they just stopped.  Of course never for good, but I caught a break.  The older I got, the longer those breaks became.  This last one was four years.  I'm peaking right now at so far 8 today.  Thank God for that O2.  I don't keep O2 as a backup, it's my primary source of relief.  Imitrex 6MG vial 1/3 at a time for backup.  Works like a charm for those that try to break through the O2 or if I'm in a pinch and away from my O2.

Hang in there Jeronimo, and hope your get some pain free days and nights soon.

Welcome Jeronimo!

Ya not many people in the states are aware of CH until they get diagnosed with it either...We do what we can to change that sad fact.

Sending PF vibes your way!!

Adding my welcomes to everyone's...I have just one item to add to what has already been said...sometimes the meds we use and the interventions (O2, verapamil, lithium, melatonin, energy drinks, etc) require much higher doses than normal in order to be effective. You don't list the meds you use or their amounts. Care to share? And for sure...O2 needs to be your first abortive. I'm curious about your mention of "toxicity." I don't think you're in any danger of that. Where'd the idea come from? God bless! lance

Using two triptans and ergotamine is a troublesome combination. Suggests you doc does not know how to treat Cluster.

Suggest you contact your excellent support group to find out how to use your health care system to get with a good doc.

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Bob Johnson wrote on Aug 25^th, 2010 at 12:38pm:

Using two triptans and ergotamine is a troublesome combination. Suggests you doc does not know how to treat Cluster. Suggest you contact your excellent support group to find out how to use your health care system to get with a good doc. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Oooh!!!
Bob is right!  Hadn't even noticed that! 
Yucko!  That a lot of powerful vasoconstriction you got on hand there...
Oxygen may work just as well with a lot less risk and please as mentioned above, look into a preventative.  They do help!

Hi Jeronimo,
                 I just want to say Welcome! I'm not a sufferer, just a supporter but I do my best to try to understand. Clusterheadache sufferers and their supporters are some of the strongest, nicest most caring and supportive people I've ever met. They are full of information and idea's, some info will work for you some will not, but best of all the people here will understand which ever path you choose to take. Good luck with your journey through this horrible condition! If you ever need to chat, vent or have questions or just having a bad day, please drop us a line. There's always someone around who will get back to you pretty quickly.

                            Regards Shell :) :)

Hello Jeronimo

Another clusterhead from the uk here .

I've not got much to add cos I've not even done a year of this my self yet , but I do fined energy drinks like Red Bull help with the low level stuff. Grab a can and drink it as quickly as you can at the first sign of an attack , some say it even helps O2 work better too.

God bless

Nigel

gawd bless yer mate!
been a cronic sufferer for 25yrs, cant believe I'm still alive sometimes, I'm going thro' hell at the moment. went to france on holiday, couldn't take O2 so went 'prepared' with Imigran. soon as I crossed the water, bang, I went from 4-6 a day to 10 K10's a day!!!!!! to cut a long story short I OD'd on Imigran. you wouldn't believe the grief. I'm home and detoxing now and getting slightly better each day but it'll be a long haul.
get in touch we have a lot to talk about.
max

Max - very sorry to hear about your French slam experience - Please tell me that you're using 1/3 to 1/2 doses of the imigran injections - not a full dose for each attack?

Welcome aboard,I am not a heavy hitter like some folks here,I am new here also BUT I tried a couple things these folks suggested and I have been PF for a week and a half. Iam a night hitter and since I have been taking 10mg of Melatornin 1 hour before bed I have been sleeping like a baby. While in my cycle the Red Bull works for me and the Imitrex spray also. Prayers to you for some PF time..

Hi Jeronimo

I'm in the UK too. If you think that your GP isn't up to speed with what to prescribe, can I suggest that you try and make an appointment in the "City of London Migraine Clinic" START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. I got really p'd off with various GP's, a neurosurgeon and a neurologist, who charged me £250 to say that I was suffering from pain killer over medication even though I wasn't taking any, sorry going in to a rant, all saying that I had various different problems. My wife done some digging around and found the City of London Migraine Clinic. I made an appointment, most importantly I took a photo of my face when I had a K8 attack along with me. The doctor took one look at the photo, a couple of touching nose tests and quite a few questions and I was provisionally told that I had CH's.  I was tested for a Paroxysmal hemicrania, and they wrote to my GP stating that I needed a Hi-res CT scan to check for the presence of a tumor in the pituitary gland and after the scan I am now a full blown member of the CH club!

They've got several CH specialists there. There's only one problem, they're a charity they would like you to make a donation every time you visit. But if it gets you the right treatment...............

I hope this is helpful.
Captain Chaos.