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  • Anyone here diagnosed with Cluster Headaches?

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    Old 07-31-2004, 06:54 PM   #1
    sherry47
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    Anyone here diagnosed with Cluster Headaches?

    Hi. I am usually on the pain management board. I'm a 32yr old mother of 3. I had a spinal fusion in Jan of this year. I suffer from cluster headaches. I was treated for migraines for about 15 years. 2 years ago I was finally diagnosed with clusters. I've found that people don't really understand clusters, even some doctors don't really understand them. I was having good results with Neurontin and then Midrin as an abortive. The problem is I came off my Neurontin about 2 months ago and it seems that just as soon as the Neurontin was out of my system, a cycle of clusters started. The Midrin isn't working either. I have been using an ice pack combined with the Midrin and just suffering. I know if things don't get better soon I'm going to end up in the ER where they will automatically start IV's and a ton of meds because they know my history. I really don't want to be pumped full of more narcotics. I want them to try the oxygen if I go. The problem is, the ER I go to doesn't believe in oxygen. You would think they would want to try the oxygen instead of all the narcotics. The last time I let my hubby take me to the ER for my headaches, I ended up staying overnight and was so drugged up I don't even remember coming home. Sure the headache was "gone", but I felt so bad for a couple days afterward. It was like a hangover or something. I have printed up a letter from a cluster headaches website about the use of oxygen on clusters and exactly how to administer it and when to know if it's going to abort the headache. I intend to take that letter with me to the ER if I have to go. Does anyone know if they have to try it? I know I can refuse treatment with narcotics, but if you suffer clusters, you know you are not capable of arguing with anyone during a headache. Any advice would be greatly appreciated. Do any of you use oxygen? Having any luck with preventatives? abortives? I know I need to get back on the Neurontin because it really did help me. Thanks in advance for any responses.

    God Bless,
    Sherry
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    Old 08-01-2004, 12:29 PM   #2
    Karla
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    Re: Anyone here diagnosed with Cluster Headaches?

    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!

     
    Old 08-04-2004, 07:28 PM   #3
    Mz Migraine
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    Re: Anyone here diagnosed with Cluster Headaches?

    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!

     
    Old 08-04-2004, 08:09 PM   #4
    sherry47
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    Re: Anyone here diagnosed with Cluster Headaches?

    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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    Last edited by sherry47; 08-04-2004 at 08:15 PM.

     
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