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Topic: New to board, old sufferer (Read 285 times) |
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marlinsfan
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New to board, old sufferer
« on: May 30th, 2005, 1:40pm » |
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I found this place last night, and I was up very late reading, reading, reading. I then went to sleep and was PF all night! Amazing!
I've been diagnosed as a migraine sufferer and now realize that I suffer from CH. I can see why the neuros (3 or 4 over the past few years) get confused.
Mine come about 45 minutes after I go to sleep, then again at 3 or 4 am. Every night for 6+ weeks now, after 2 years of remission. Prior to 2 years ago, I would get them every year in November-December. I got one in December of 2004, in the middle of the day, then it went away. Then came back with a vengeance on 4/21.
I take imitrex as often as I can, but it is very $$. I also take excedrin migraine, and it does kill the pain. I haven't seen much talk of excedrin migraine here.
I have an appt 2 see the neuro tuesday (tomorrow), and will bring with me the Cleveland document. I'm hoping he will recognize this as CH and give me Verapamil and 02.
I had back surgery on 4/18, 3 days before the devil came back, and was put on Vicadin for 3 days. The pain started the day I got off Vicadin. I'm now taking Celebrex every night. After 1 month, the doc that operated gave me topiramate (?) but it made my headaches worse. I was getting them during the day, and also the pain moved from my temple/eye into my forehead.
I'm happy to have found this place, and hope I am as lucky as some in getting exorcising my devil.
Wish us all luck!
Jose
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KMT
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Fun loving @ heart
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Re: New to board, old sufferer
« Reply #1 on: May 30th, 2005, 1:57pm » |
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Quote:| I had back surgery on 4/18, 3 days before the devil came back, and was put on Vicadin for 3 days. The pain started the day I got off Vicadin. I'm now taking Celebrex every night. After 1 month, the doc that operated gave me topiramate (?) Haven't heard anything on this med.but it made my headaches worse. I was getting them during the day, and also the pain moved from my temple/eye into my forehead. |
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Quote:I take imitrex as often as I can, but it is very $$. I also take excedrin migraine, and it does kill the pain. I haven't seen much talk of excedrin migraine here.
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Some have mentioned Excedrin migraine working and if it help congratulations. Some of that could be the caffiene. Have you ever tried Coffee.
Some get relief with heat and some get relief with cold.
Meletonin 6-9 mg OTC helps with sleep at night. O2 10-15 LPM nonrebreather mask for 15 min is a good abortive. Might help save your Imitrex till you can abort with O2. There is a Kudzu thread you could research and take to your doctor for advice.
PF wishes......Kim
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aka...................................................... KimY
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marlinsfan
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I love this place!
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Re: New to board, old sufferer
« Reply #2 on: May 30th, 2005, 5:50pm » |
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Thanks, Kim. PF wishes to you too.
Will talk to doc about melatonin and kudzu tomorrow.
The topiramate is sold under the Topamax brand. That's the stuff that didn't work for me.
I get some relief, not much, from cold. I tried coffee today when I felt I was going to get one, and it went away! This was 3 pm or so, now 6 pm I am still PF.
I've also been drinking a glass of water every hour, as I read something on that last night. I'm hoping for a PFN tonight, but I'm sure I'll wake up to use the restroom 
In all, my wife says I'm like a kid today. I've been raving about all the stuff I learned.
Be back soon!
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E-Double
CH.com Alumnus
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Re: New to board, old sufferer
« Reply #3 on: May 30th, 2005, 5:55pm » |
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This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
Ask for a script and if needed FIGHT fOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Educate your doctors!!!
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression..... Like I said we are all different.
Good luck and stay strong!
Eric
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| « Last Edit: May 30th, 2005, 5:58pm by E-Double » |
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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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Renee
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May we all find some pf time! Is it summer yet?
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Re: New to board, old sufferer
« Reply #4 on: May 31st, 2005, 4:22am » |
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Topirimate (topomax) is used often in the efforts to prevent clusters.
Go to the medications thread and you should find much there regarding topomax.
Welcome,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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BarbaraD
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Hugs to ya
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Re: New to board, old sufferer
« Reply #5 on: May 31st, 2005, 8:35am » |
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Excedrin Extra Strength is sometimes cheaper and has the same ingredients as Excedrin Migraine.
I take three Excedrin ES with a cup of coffee. If I get to it soon enough this usually stops the beast. BUT>>>> be careful - you can get some really humdinger rebounds if you take Excedrin on a regular basis. Try the coffee first (several cups) and if it still persists then take the Excedrin -- just be careful with it.
Topamax was my miracle drug for several years, but as with everything else - it just quit working one day. I took (maintenance dose) 100mg at night before bed. Didn't have the side effects that way. During a bad cycle I've been up to 400mg, but experienced side effects there (got a little suicidal one time).
Verap helps a lot of us. Just have to find out what's right for you.
Try the Melatonin at night. I take 12mg and sleep thru the night usually.
Good luck with the neuro.
Hugs BD
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What don't kill ya, Makes ya stonger!
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