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PaegeInPain
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Wow, it has take me three times to type this and get it up. I hope I don't mess it up again or I will have to give up. To think I do Computer consulting for a living. Sigh. Anyway. Hi. My name is Paege. I am having my third cluster siege in the last 8 years. This one has gone on for 7 weeks so far. I get clusters on either side and sometimes on both. I understand that is fairly rare. I also have Migraines all this time. Pretty nasty.
My neurologist this time has had me on prednisone, I already take effexor and topamax and now he has me trying lithium, no help so far. Yesterday I had DHE IV which helped for a while but I feel it coming back now. So, feeling pretty sadd.
Any thoughts? I have a question. What does shadow mean? Do any of how have them long term like me and if so how many weeks do they last? Thanks for being here. Paege
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E-Double
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Re: Hi
« Reply #1 on: Jun 16th, 2005, 4:37pm » |
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on Jun 16th, 2005, 4:13pm, PaegeInPain wrote:Wow, it has take me three times to type this and get it up. I hope I don't mess it up again or I will have to give up. To think I do Computer consulting for a living. Sigh. Anyway. Hi. My name is Paege. I am having my third cluster siege in the last 8 years. This one has gone on for 7 weeks so far. I get clusters on either side and sometimes on both. I understand that is fairly rare. I also have Migraines all this time. Pretty nasty.
My neurologist this time has had me on prednisone, I already take effexor and topamax and now he has me trying lithium, no help so far. Yesterday I had DHE IV which helped for a while but I feel it coming back now. So, feeling pretty sadd.
Any thoughts? I have a question. What does shadow mean? Do any of how have them long term like me and if so how many weeks do they last? Thanks for being here. Paege |
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My honest opinion is this...1 Freaking attack is too much and too long for anyone, however, you will meet people on this board who have been dealing with the beast for 30+ yrs.
some people are episodic, some are chronic, some are primary chronic and do not know what it is to ever have a break, while some like me were episodic for 10yrs then went chronic recently.......So for some weeks for others....YEARS! It's all in your attituted.F!!! the label...it hurts!
Here is some info.......read, print it out, learn it, know it and give it to your docs!
This is a great resource to know like the back of your hand...print it out and give it to your doc
http://www.mhni.com/clusterheadaches.html#intro
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.
Best wishes, good luck & stay as positive as you can!!!!
Eric
P.S. A shadow is the term used to describe the "it's there waiting to pounce on ya feeling"....check out the links to th left and read "kip Scale"
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| « Last Edit: Jun 16th, 2005, 5:46pm 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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LeLimey
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Re: Hi
« Reply #2 on: Jun 16th, 2005, 4:48pm » |
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I can't add anything to the stuff Eric has posted - he is brilliant!
I'd just like to say welcome. I'm sorry you are here but I'm very glad to meet you. Tell us a bit more about you and read, read read.. if you have any questions ask away
Hope you get some respite soon
Helen
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jokrs2
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Re: Hi
« Reply #3 on: Jun 16th, 2005, 10:37pm » |
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Hang in there Paige. I'm one of those 30+ year sufferers but there are answers here and other alternatives if the prescription stuff doesn't do the job. It's hard to add anything after "awesome Eric" greets ya , but welcome and stay positive. Blessing's, Joe
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BobG
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Re: Hi
« Reply #4 on: Jun 17th, 2005, 4:35am » |
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on Jun 16th, 2005, 4:13pm, PaegeInPain wrote:I get clusters on either side and sometimes on both. I understand that is fairly rare.
I also have Migraines all this time.
Both sides at the same time? I have never heard of cluster headaches on both side at the same time. It sounds like you're having migraines and clusters together. Have you tried Imitrex? It's a migraine med and works on clusters also.
What does shadow mean? Do any of how have them long term like me and if so how many weeks do they last? For the last 4 or 5 years, January to about the end of March each year, I have had shadows each day. No full blown attacks, just irritating kip2-3 shadows. |
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Read all you can here. Make yourself educated, you may have to teach your doctor.
Let us know how you are doing.
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Gator
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Re: Hi
« Reply #5 on: Jun 17th, 2005, 11:01am » |
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Hi Paege. Looks like you have been well taken care of so far. I'd expect no less from these wonderful people. They are the best.
I don't see where you have tried oxygen. You should. If you tried it in the past, try it again. You should use a non-rebreather mask (plug any outsde air inlets and cut the straps) and try the flow rate up to 15 lpm. There is documented proof this works. Print this out and take it to your doctor. A lot of docs balk at the thought of using O2 and really freak when you mention such a high flow rate. Demand to try this.
http://www.chhelp.org/mhni.html
Other than that, read everything in the links to the left and in the various message boards here. If you have a question about anything, try searching for the info. Chances are the topic has been discussed. If you can't find the info you are looking for, just start a new thread and ask. Someone will come along shortly and answer your questions to the best of their abilities.
Again, welcome to our little corner of the web.
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PaegeInPain
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I love YaBB 1G - SP1!
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Re: Hi
« Reply #6 on: Jun 17th, 2005, 8:10pm » |
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Thank you all. What a wealth of information. Thanks. I will ask the doc about the oxygen on Monday. I read all the info. Yes I get both sides at once sometimes. It is extremely rare. But that is me. If it is only 1% or 3% of the population, I have it. Talk about about being a rebel. Thats me. Used to be fun back when I was a peace nik flower child. Hee hee.
I have a kidney related issue too... same thing, both sides blah blah, never happens... blah blah. anyway, thanks again for the info. Look forward to reporting improvement. Hope you are all having light pain, or pain free days. You are in my thoughts. Paege
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