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Cluster Headache Help and Support >> Getting to Know Ya >> Hi Everyone http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1346870332 Message started by KMckellepp on Sep 5th, 2012 at 2:38pm |
Title: Hi Everyone Post by KMckellepp on Sep 5th, 2012 at 2:38pm
Hello,
I am new to this site. I am hoping I can get some helpful information here. But first I will give you info about me. A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor? I was dx by a neurologist back in 1999. The only other medical condition I have is what they call Blebs Disease. More or less my lungs like to collapse. B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness. Back in 1999 my regular MD had me on all sorts of junk.. blood pressure meds, imitrex pills and nasal spray. None of which worked for me. So once I saw the neuro doctor they put me on lithum, O2 and imitrex injections. Within 3 weeks of being on those my cluster headaches went away till about a month and a half ago. C. Have you used or explored any alternative treatments (and ditto)? no I have not. But am more then willing to if people have suggestions. D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support? Well first of all I am paranoid. I am always scared of getting one. Not only that I never know to what degree my headache will be. I feel like people(friends, family and coworkers) truely do not understand how painful these are. It scares my children to see there mom using the oxygen and my partners says he feels like he is with an 80 year old woman.. (I am 38 yrs old). I have to worry about getting a headache if we are out with our friends. I did a weekend get away with my partner and didn't want to haul the O2 tanks and I suffered all weekend. I feel bad complaining since I had a wonderful 12 yr remission from these. But I am truely fustrated right now. I went to my doctor today and he gave me orders for O2 and imitrex injections again and then scheduled me to see the neuro doctor again next week. He wasn't comfortable prescribing me the lithum. KMckellepp St. Paul, MN |
Title: Re: Hi Everyone Post by ttnolan on Sep 5th, 2012 at 11:57pm
Hi and welcome to the board...
It sounds like your last neuro in 99 had a handle on treating CH, O2 and imitrex are our best front-line abortives, and verapamil and/or lithium are standard prevents. Bob has given some good info on verapamil, it is usually chosen first over lithium... less complications. Are you seeing the same neuro? We have found choosing a good one is critical. As far as the paranoia and scaring your kids, pretty standard stuff we all go through. Your kids will be your best supporters if you explain things to them, show them it isn't really scary. Teach them that you need a few minutes undisturbed when it is time for the O2, and before long they will be running interference for you. Just a few things: I don't think I have to tell you but... don't get caught without your O2. Get a monster tank for home, and portables to take with you. Some have better results augmenting this with energy drinks (taurine and caffeine). I don't know if you drink, but almost all of us recognise alcohol as a major trigger when we are in cycle... can give you an attack that is hard to kill. Also overheating, hot stuffy places. Alternative treatments... I would be remiss if I did not answer that with this... clusterbusters.com I wish you luck next week with the neuro. Keep reading all you can, knowledge is power against the beast. Edit: Look into getting the "O2ptimask" oxygen mask available on this site. It has made a world of difference in the effectiveness of administering O2. |
Title: Re: Hi Everyone Post by Guiseppi on Sep 6th, 2012 at 8:46am
Welcome to the board. As far as the kids, my girls could rig an e-tank for me by the time they were 12. It helped give them a feeling of control over the beast when they could help daddy slay it with his "little green friend"...The E-Tank.
AS to alternatives, visit our sister site, clusterbusters.com Joe |
Title: Re: Hi Everyone Post by KMckellepp on Sep 11th, 2012 at 1:52pm
Thank you everyone for the responses. I did get my BIG M tank last week along with 4 E tanks. I have already gone through almost 2 E tanks since last Thursday. Last night was the worst in awhile. I had three in about 2 hours. Still scared to use the injection. Its been almost 13 yrs since the last time I used one and when I did I would literally pass out for about 30 mins. I took your advice on talking to my kids about it and explaining to them all about the oxygen and how to use it. And of course the safety part of using the tanks. Last night my 15 yr old son sat down with me and watched as I did my oxygen and he didn't have the scared look in his face this time. Which was a comfort for me. I see the neuro doctor tomorrow and am very excited. Since my headaches do seem to be coming quicker and more frequent this week. I also tried drinking a large monster drink this weekend when I felt that tickle in my neck and face and it seemed to bring it back down. So I will be keeping those on hand at home and when I am out and about. Not sure if this really worked or just a weird fluke.. but I will definitely test it out more. I also have noticed that alcohol definitely triggers them. Went to a winery and had three tastings and within about 20 mins had a full blown MONSTER. So no drinking for me till this is all under control. Again thank you everyone for you support. It is truly appreciated.
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Title: Re: Hi Everyone Post by ttnolan on Sep 12th, 2012 at 7:29pm
Good job getting the kids involved... not scary.
Imitrex injections... view the "imitrex tip" link on the left. Many have found lower doses effective and a way to extend your supply. A smaller dose may also reduce the negative side effects. Interested to hear what your neuro had to say. |
Title: Re: Hi Everyone Post by KMckellepp on Sep 17th, 2012 at 12:57pm
Well I saw the neuro doctor last week. He said I have been very lucky to go a 13 yr run without any issues. Said it is rare to go that long. All he did was put me on Lithium since that seemed to work so well for me in the past. Said that once I go 7-10 days without a cluster headache then I can start to tapper off the lithium. He also gave me a different injection. Well its just like imitrex but it doesn't have a needle. The pen injector just forces the medication through your skin by air injection. Personally I think I will stick with the needles. I started the lithium on Wednesday and today is Monday and I haven't had one cluster monster yet. I am keeping my fingers crossed.
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Title: Re: Hi Everyone Post by ttnolan on Sep 18th, 2012 at 7:31pm
Good to hear you are getting some relief. If the lithium turns out to work well for you, I would talk to your doc about being able to start this with a phone call instead of waiting to see him. If he understands CH, a phone call should trigger immediate access to abortives, a transitional, and a preventative. Kind of a hard thing to keep on top of when you get such long remissions.
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