Hi all, I almost cried when I saw this board I felt like I was the only one in the world with this but after reading your posts I know I am not alone. I am one of the 'Lucky' ones my period is 8-10 years! but the last episode cost me my job. It lasted 6 months no one believed me until I went to a neurologist and he said cluster The regular Dr didnt believe me untill I told him if it didn't stop the pain I was going to shoot myself! he then sent me to a Nurologest. Then it all came together. I still didn't know or even hear about them before and still am the only one who has ever had one that I know of. I am trying to still grasp the uniqueness of it.
If anyone has similar periods please let me know.
My last was like 10 years ago (very lucky) but lasted 6 months of beasting most of the day and only brief periods of shadows until I had a IV of HET or something like that. That day it broke the cluster beast and I had shadows for a while then they went away till now. Now I have the 'shadow' I also smell burnt toast this time. (amassing you people know what this is)  all day and during the 'cluster beast' which occures at 2am and lasts till 5 am and a shorter period from 6 pm till 8 pm, I lose vision in the effected eye (dont know if I cant see or cant open eye) Puke, cant walk sensitive to light in both eyes and smells  Can't even have sex during the shadow time or that triggers the beast, even when not at the time it supposes to appear. Last time my attack switched sides from left to right Thank the Lord, really it is easier if it switches cause it gives the one side a break.  I have quit smoking and drinking even when not in an epsoid cause it scares me so much I can't risk it.  This time 2 weeks in to it its been the right side only. I dont have insurance anymore and the meds are silly expensive. they got me on hydrocodine and Im trying a new one called ergotamine caffeine started it today.
Went to a Dr yesterday she prescribed some drug 9 pills that cost 215.00 I said there is no way I dont make that much and called her back and she said I had to suffer with hydrocodine which dont work till I went to nurgologist who will not see me till I have a referal from this other dr cause it has been 8-10 years. That is crap! what a scam. Later in the night she called back and said she called in this other stuff sure hope it works. I am going to monitor this board for a while to see if anybody responds I really feel alone in this world and am very depressed which I read on this board is a symptom so please respond. Please forgive the poor writing its poor even when Im not in pain. Have a good day fokes or at least as good as you can
Topledoviking  

Hi TV!  You are not alone any longer.  Just look at my signature  8-)  You have just found the best place for a cluster head.  A home with literally hundreds of folks that know all too well where you are and, more importantly, how to get to a better place.

You aren't alone any longer my cluster brother.

Anyway, I'm glad your breaks are long.  I'm also sorry the beast didn't permenantly loose your address.  Let's see if we can't find you some things to help.

First off, stop taking any narcotics.  These are cheap but are drugs of last resort.  And, as you already know, Hydrocodone won't touch this kind of pain.

Sounds like this Dr tried to get you on some kind of triptan.  Possibly Imitrex injections from the cost.  That is an amazing drug but is off the charts expensive.  Especially for one without insurance.

My best friend is 100% Oxygen @ 15-25lpm (liters per minute) through a non-rebreather mask.  This therapy is cheap and knocks an attack out in minutes if I get on it fast.  I use a large tank at home and smaller tanks in the car and at the office.

If medical Oxygen is too expensive then a welder's rig will do.  The Oxygen comes from the same place.  People here (Jonny) can help you get that figured out.

In the mean time though what you really need is self education.  The best weapon in your fight will be knowledge.  You need to read everything there is to read.  Start with the links on the left.  Then you can go through some of the links I'll provide below.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Info on an alternative to Pharmaceuticals can be found here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don't forget to join OUCH-US: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read everything, search the discussions and then ask any questions you still have.  Good luck...

-Dennis-

Thank you Dennis I just joined as toledoviking I will have to read this later too much for today