Hi Everyone,

So happy to have found this forum as was starting to feel so alone with this condition.

Only in my first cluster of attacks and was diagnosed within 2 months which seems like lightning speed compared to some of u here.Having 2 attacks a day at the moment and really starting to feel as though I can't cope anymore(feeling like a wimp when some of u lot have had to put up with this for years). I'm either too tired from the attack, in pain with the attacks or felling ill of the meds the GP has put me on.Being really difficult as I have a 2yr and 4yr old to look after everyday.

When I first got the pain I thought I was dying I didn't think someone could suffer like that without there being something wrong. Went to docters a couple of times and was given all sorts of pain killers which didn't help. After numerous trips to the GP was then told it was Cluster Headaches. My attacks last at least 3 1/2 to 4 hours a time but I am finding it really difficult to find a abortive. My GP is so useless he don't understand the condition I think but is not wanting to send me to see a specialist until he has put me on every migraine medication known to man. Have found something that helps online for the time being which may seem stupid but works for me. As soon as I wake up with an attack I take the pain relief I've been prescribed and wash it down with a full can of red bull. Doesn't stop it in its tracks but slowly makes the pain wear off so instead of 4 hours of pain I'm only having about 45mins .

Anyway going to read through everything I can find in here and hopefully get some piece of mind knowing everyone else experiences....

Gina................listen to Uncle Joe.

Gina only 2 attacks a day! i'm sorry to say this but i WISH i was you!!!!! Just be happy that your not getting 6-8!!! you get absolutely exhausted, plus you dont get sleep and you almost start to go insane? When i was getting 6-8 attacks i would just taxi to the ER make them give me DHE on IV and pain killers fall asleep and start all over again the next day!

Actually they were very efficent! the doctor wrote on my file what to do for the next several days so i didnt even need to come into the ER anymore they would drag an IV out to the waiting room, stick an IV in me with saline/DHE and some pain killers with some oxygen 35 minutes later they would ask "are you ready to go home now?", i would say see you either tonight or tmw!!! they started laughing.

As for an abortive what are you using? I use zomig nasal injections i found imitrex doesnt last aslong and cased me to actually use more. Also oxygen worked great! but it all depends when you get caught in the act...at work zomig is my only choice as i cant haul around an o2 tank with me!

Hope you find out what works for you and just to let you know i'm also new to clusters im 5 weeks into this and learning almost about  5 pages of new information a day! i print it out keep it in a binder and i plan teaching my neurologist everything i learned. It will help me in the long run and any people with cluster headaches who visit her in the future... i'm sure they would be extremely greatful for us if they knew what we did!

Good luck to you!

Gina, your 24 ! i'm only 25 so we are in the same boat! do yourself a favor. Look up welding supplies rental on google for your area. Give them a call and ask them if they rent out pure oxygen cylinders. I believe they are around 10 dollars a month and you might need some one to help you with moving it to your house as its VERY heavy.....grab a mask from the ch store and regulator from ebay. The welding supplies store here actually will rent you a regulator for 5 dollars a month or buy it out right for 100 buck and it goes all the way to 30 LPM

You may have to look into using welding oxygen then. It takes a little more work as it's not conveniently delivered in a box with all necassary equipment like the medical 02 is, but works just as well. Then you can tell the doctor, "I'm currently using welding 02 and it works like a charm. You can prescribe me medical 02 or I can keep using the welding...your call!"

Joe

Gina I bet you can turn this thing around.

People ain't kiddin' around when they say listen to the voice of experience, listen to Uncle Joe. Including the bit about welding O2 ASAP.

Your doctors have been backward, ignorant idiots about O2, and it looks like I don't have to convince you of that at all!  I bet they don't even know about the benefits of hi flow/non rebreather O2. Leave it to  %^&*$ MDs to consider the only non toxic treatment they could prescribe to be the "last resort".

Thankyou for all the info

Delta darlin I'm in the uk.

As for the welders oxygen I'm gonna try to get hold of that maybe if the docter realises that it works for me he might give it a try.

And as far as I know I do need a referal to see a neurologist will double check to see of there is any way to bypass the GP

Again thankyou for all the help

Hi Gina, Sounds like you are definitely one of us now. You ar e lucky to get on here so quickly after starting to have CH's. I just joined the site myself but I wish I had been on here reading these posts and interacting with these fine people all along. I remember the good old days of only one to two attacks a day during the cycle which might last as little as a month. Mine are luckily in remission right now but I am not taking chances because last year at this time I was having a doozy of a cycle. Lately I have been stockpiling oxygen, imitrex, ice, and other stuff. Im gearing up for a visit from the beast. He usually stays for three months at a time now. Ill see him once a day to start out with then by the end I am having 3 conversations with him a day and sometimes 2 a night. All I can say to you is Gina please listen to what these people say and do what they do. They are right on the money when it comes to battling these things. Personally I take a 360 mg verapamil every morning as a prevent. When I start to feel an attack coming on i go right for my oxygen tank. I have a small ice pack that looks like a basketball but it is flat on the bottom and slightly rounded on the top. It is about 5 inches round and fits nicely in the hand. The slight roundness of the top fits nicely against the temple and eye socket. I know this sounds funny but it is quite a comfort to have that ice at the first onset of the attack. I also have an opiate nasal spray that  I take with me if i cant be around my oxygen tank. At best this only makes the attacks bearable, and possibly will let me act fairly normal during a CH in public, but not really. Gina this is a very rare and mysterious disease or affliction rather. Together we will find a cure for it. Until then we will battle it anyway we know how. Please do what Joe recommends. He knows his stuff. Let me know if I can help you in any way, and get ready for a battle. Sincerely Daniel Walker