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midwestbeth
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just diagnosed
« on: Dec 6th, 2006, 12:04am » |
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Hello,
I'm new to this board. Just diagnosed myself with cluster headaches. Started getting them last spring. I thought I had a brain tumer or was going to have a stroke. When I stumbled upon Cluster headaches and the symptoms online I couldn't believe I was reading exactly what has been happening to me for almost a year. I am now in the process of finding meds that are affordable. (I do have good insurance) The Dr. gave me free samples of Frova and that did help but $200 for 6 little pills that would not even get me through the weekend is a little steep. Imitrex is almost as expensive and I did not get any relief in the past with Imitrex when I had a migraine so I'm not paying $130 (9 pills)for meds I'm not confident will work for me. I am taking one Altolonol (sp? I don't have the script bottle in front of me) everyday, but I won't know if that is helping until I've taken it for at least a month. Does anyone know of any affordable abortive meds out there. I'm not poor, but I can't afford 800 to 1000 a month to be pain free. I'm freaking out because I know the pain will start again I don't have anything to stop it.
By the way I'm female, 40 with a supportive husband and three kids age 13 - 20.
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AussieBrian
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Re: just diagnosed
« Reply #1 on: Dec 6th, 2006, 12:07am » |
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Over on the left is a button marked "Oxygen info". Great place to start.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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BB
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Re: just diagnosed
« Reply #2 on: Dec 6th, 2006, 1:10am » |
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Hello
Welcome and painfree wishes to you.
There are several medications that can be used as abortive. The cheapest are oxygen, cold air and ice, also many use hot/cold showers and vigorous exercises. Of these oxygen is the most effective for many CHers. Next you may wish to try Zyprexa. Prednisone taper can also help block the hits while Atenolol kicks in.
Although abortive meds are great, its really important to have preventive meds started as soon as possible. The number of hits per day may be too high for any abortives to work properly.
Spend some time reading the Board and see which methods you would like to try and discuss that with your doctors.
All the best.
Annette
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midwestbeth
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Re: just diagnosed
« Reply #3 on: Dec 6th, 2006, 8:50am » |
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Thanks. Today I'm going to try and find a good nuro who understands clusters. Also I had been cutting down on caffiene thinking that was a trigger causing the CH. Since cutting out the caffiene the CH have increased. I'm stopping to pick up Red Bull on my way to work.
Beth
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BarbaraD
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Re: just diagnosed
« Reply #4 on: Dec 6th, 2006, 9:23am » |
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Red Bull and O2 (with ice packs) is a good start.
I take ergotomine (about $30 for 30 pills) as an abortative. It's worked better over the years than Imitrex (and the pills are useless -- if you take Imitrex get the injections). The ergotomine comes in CafergotPB (make sure it's the PB for nausea) suppositories - they work faster than the pills. I also take 25mg of phenergan with the pills for the nausea.
Interview your neuro -- if he/she doesn't know about O2 - go shopping for a new doc. There's a list of "recommended" docs on this site. You might want to check it out.
Sorry you had to find us, but welcome to Clusterville.
Hugs BD
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marlinsfan
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Re: just diagnosed
« Reply #5 on: Dec 6th, 2006, 9:57am » |
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on Dec 6th, 2006, 12:04am, midwestbeth wrote:| Just diagnosed myself with cluster headaches. |
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Welcome! Self diagnosis can be dangerous. Get yourself to a Neuro ASAP to get properly diagnosed.
Read here for a good list of meds.
http://www.brightok.net/~mnjday/chtherapy.pdf
PF wishes.
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Guiseppi
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Re: just diagnosed
« Reply #6 on: Dec 6th, 2006, 4:44pm » |
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I use lithium as a preventative when on cycle, 1200 mg a day. Then it's oxygen for the ones that break through. I have to take a cafergot when I start the oxygen, or as soon as I stop the oxygen, within 10 minutes, the headache is back.
You'll find most people have some kind of combo that works for them, both with the preventative and the abortive, the bad news is it's mostly trial and error.
Hoping you have a short trip to relief.
Guiseppi
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Giovanni
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Re: just diagnosed
« Reply #7 on: Dec 6th, 2006, 6:07pm » |
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on Dec 6th, 2006, 8:50am, midwestbeth wrote: Also I had been cutting down on caffiene thinking that was a trigger causing the CH. I'm stopping to pick up Red Bull on my way to work.
Beth |
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Don't cut down on the caffiene......it's our best friend during these cycles.
John 
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mathieulives
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Re: just diagnosed
« Reply #8 on: Dec 6th, 2006, 7:24pm » |
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on Dec 6th, 2006, 6:07pm, Giovanni wrote:
Don't cut down on the caffiene......it's our best friend during these cycles.
John |
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I agree, red bull got me through many episodes where i didn't have any abortives or my body was so exhausted from all the imitrex shots... Here's to being pain free!!
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E-Double
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Re: just diagnosed
« Reply #9 on: Dec 6th, 2006, 8:44pm » |
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on Dec 6th, 2006, 9:57am, marlinsfan wrote:
What my southern brother said!!!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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jon019
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Hi beth,
Yup, what they said. As for caffeine, it is my friend, provided I use it judiciously. Too much or at the wrong time causes more problems than it helps. I cut down completely on regular use and just use at first sign of hit (or even just prior to an expected hit time (when in cycle).
Regards
Jon
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midwestbeth
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Re: just diagnosed
« Reply #11 on: Dec 7th, 2006, 12:18am » |
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I did get confirmation on the clusters by the 2nd Dr. (internist) I went to. The 1st Dr. (ear, nose & throat) told me I was having migraines and I've had migraines before and knew this was another animal entirely.
When I started reading about cluster headaches online I was actually relieved that I now had a name to what I was going through. Now the only fear I have is the next one that hits me and I want to do anything possible (no narcotics!!) to make these wide awake every night nightmare episodes go away. I have been referred to a headache specialist Dr and will be making appt tomorrow.
One thing I haven't mentioned is that the ear, nose and throat Dr. found the right side of my thyroid very enlarged. I hadn't noticed. All blood work came back normal and I'm not experiencing any hypo or hyper thyroid symptoms. I am going for ultrasound and biopsy in the next few days. Related to clusters???????
Thanks to everyone for the info, supprot and concern.
Beth
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Do more than exist - live
Do more than touch - feel
Do more than look - observe
Do more than read - absorb
Do more than hear - listen
Do more than listen - understand
~ John Rhodes
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