Anyone here diagnosed with Cluster Headaches?

Karla

I have suffered from cluster headaches since Feb 98. I was chronic meaning I had 8 ch every day for 6 years with no break until this March. Then things changed for me. My ha stopped. I also used to get about 4 migraines a month and they stopped as well! I used oxygen for a couple of years and that worked for me at 15lpm for 20 min with full face mask. Then one day it just quit working for me. I used lithium as a preventative for a couple of years and then that quit working for me. I tried over 35 different preventatives and abortives and nothing works except imitrix and my insurance will only let me have like 12 ns a moth. That only last me 2 days. Sucks. So my dr sent me to a pain management specialist. I was on methadone for a year 10mg am and 10mg pm and it kept the beast at bay but I was always so tired. Then my dr switched me to the duragesic patch 50mcg. It also worked to keep the beast away and I wasn't so tired all the time. I quit taking it to see if I was still having ha or not and I wasn't having any ha and haven't had any since! There is a website just for people for suffer from clusterheadaches with an online support group. Do a google search for it! It has tons of info. I have been a member there since 99. You need to have a friend or spouse go with you to the ER and interceed on your behalf as to what you need and don't need from the dr. Because like you said you are in no shape to argue or educate the drs. I have a letter from my neurologist that I carry on me that has a treatment plan on it. I just show it to the drs in the ER and they follow my neuros recomendation. You may want to try that. Good luck and I hope you find some relief soon!

Mz Migraine

Your post is a little confusing to me. If you knew you needed to get back on the Neurontin then why don't you? Why did you stop if you are a CH sufferer & it helped/stopped them/stopped the pain?
As my Neurologist would sometimes ask, "Do you *enjoy* suffering?"

If your Neurologist does not understand CH then, you find one that does!

sherry47

Mz Migraine,

No, I do not enjoy suffering. I had a spinal fusion with instrumentation and it has taken everything I could do just to get to my surgeons appointments. I am just getting to where I can walk again. I have been out of work for ten months now and financially it was all I could do to pay copays to see my ortho and get the scripts for my back. When the Neurontin ran out, I knew what was coming but with out the money to go see my headache doc, there really wasn't much I could do. I refuse to take food out of my childrens mouths to go get a script for my headaches. So, I suffered with my headaches until I could get in to see my doc. I saw him on Monday and I am back on my Neurontin, however with the new insurance the co pay is fifty dollars for it so this will probably be the last month I take it. I don't have the luxury to go to the doctor when I need to. I do have insurance with extremely high co pays. I don't know what I'm going to do when this months supply runs out, but I assure you I do not like hurting. However, at this point, it's chosing between whether I get the meds for headaches or I get the meds that allow me to walk. Not a hard choice at this point.

God Bless,
Sherry

I went back and read my original post. I suppose I should have elaborated on the reason why I came off the Neurontin. It wasn't because I wanted to, it was because I ran out and financially couldn't afford to go back to the doc or pay for the scripts. I'm sorry for the confusion.

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Spinal Fusion with cages, Cluster Headaches, Depression, Arthritis, Adhesions, Alt. Digestive Tract