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Can't believe I haven't found this site before! (Read 1123 times)
Sue
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Can't believe I haven't found this site before!
Aug 21st, 2009 at 1:01pm
 
I am new here, and this is the first message I have ever posted anywhere. I have had CH for the past 30 yrs. Started when I was 18. I am a woman so of course it took awhile before I was actually diagnosed. Like many I was told it was TMJ, sinus infections, etc..., even had one Dr tell me I was a hypochondriac! (he is the only person I have ever wished one of these on!) When I was diagnosed my Dr said..."I have good news and bad news..I can tell you what is wrong, but I have nothing to help you".  Even so I was happy just to know I didn't have a brain tumor.  Thank God for the advances they have made in 30 yrs and THANK GOD for oxygen. I have just this week cycled in after a 3 yr remission.  That was my longest ever time off, I had my hopes up that they miraculously went away, but no such luck. 

I am sorry for all of you that have CH as well, but I was happy to find this site and read about everyone that sounded just like me.  In my 30 yrs with this I have never meet another person with it.

I have one question if anyone can help.  I just went to my Dr (who tells me everytime I see him that in all his years I am his only female CH patient). Anyway, he prescribed Depakote.  I am not a big fan of drugs, they scare me and when reading about this one....I'm afraid to take it.  The O2 works wonders for me, I just know that for the next 3 months I will be tired from getting up 3-4 times a night to suck it down.  Has anyone had experience with Depakote and does the benefit outweigh the side effects?

By the way....my name is Sue and thank you to whoever started this site!
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Skyhawk5
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Re: Can't believe I haven't found this site before!
Reply #1 - Aug 21st, 2009 at 10:55pm
 
Hello Sue and welcome to CH.com. Sorry to hear you suffer with CH.

Good to see that you have oxygen (O2). There's some very good info on the link "oxygen info" on the left of this screen.

I have taken Depakote and got no help from it. There are many here that have tried it too. It's an old somewhat outdated treatment that very few get relief with. But we are all different.

Read around the site and you'll find lot's of good info to help fight the beast. Ask questions and they will be answered.

Again welcome,  Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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BarbaraD
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Re: Can't believe I haven't found this site before!
Reply #2 - Aug 22nd, 2009 at 6:26am
 
Sue,

You may want to try melatonin at night (9-12mg) before bedtime. It helps a lot of us get thru the night hits and lets us get some rest. Usually takes a few days to get in your system and start to work, so don't get excited if it doesn't work the first dose.

The main prevents you'll hear about around here are verapamil, lithium, and topamax. They seem to work best for the most of us (trial and error over the years). Some of us can take one thing others another. But remember - we're all different... and what works for one of us - might not work for another. Each of us has to find what works for US. There just ain't no "One size fits all" with these headaches.

Glad to hear the O2 is working. About 70% of us swear by it.

The main thing about treating your HAs is to READ READ READ everything you can about them (we have years of info right here - more than most medical schools) and then EDUCATE your doc.

And if you get a chance MEET another CHer - we're a great experience. Then you know for certain - YOU ARE NOT ALONE... (that's the biggest problem most CHer have - we think we're alone and isolated with this malady - WE ARE NOT!!) And when we say, "I understand", you can bet your bippy, I DO! Right now I'm hittin' on a Kip 4, so I have a pretty good idea where you're coming from... I'm typing and sucking O2...

Welcome to Clusterville. NOw pull up a chair and start reading... (we give a quiz later) Wink  Vent, ask questions, tell us all about YOU (we're nosey) and just make yourself at home. We're here to help.

Hugs BD Kiss
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JustNotRight
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Re: Can't believe I haven't found this site before!
Reply #3 - Aug 22nd, 2009 at 8:55am
 
Hi Sue and Welcome to CH!

This is a great place for info and understanding!

Ok enough of the sales pitch  Grin  you've already found us anyway.

I am also the only female patient my Neuro has with CH and there have been occasions that I had to remind him of the fact it's CH with me not migraines...he then checks his notes, raises an eyebrow and says "oh yes that's right!"  Grin  He's been buggin me to go on lithium for them but I really don't want to go there as long as the verap and imitrex are doing the trick.  I am a chronic CH'er and wouldn't wish this on my worst enemy. 

Any how I just wanted to say Hello and Welcome we do understand, if you ever need a shoulder we're here.

PFDAN to you!
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Sue
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Re: Can't believe I haven't found this site before!
Reply #4 - Aug 24th, 2009 at 9:36am
 
Thank you all for the warm welcome.  The CH kicked my butt this weekend. Three nights of very little sleep.  I will try the melatonin, thanks for the tip.  I have never tried that before. On top of the CH my son left for college Thursday and my daughter leaves tomorrow. She is my youngest and this now makes us empty nesters! I am so excited for her, however, we are very close and it is breaking my heart. This is not helping my overall mood right now! Embarrassed  I will make it though!

Thank you all for the support.  I have read a lot of the messages here and it really does help to know that I am not alone!
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Guiseppi
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Re: Can't believe I haven't found this site before!
Reply #5 - Aug 24th, 2009 at 11:51am
 
Welcome Sue! Glad you found us, the quizes start next week so get to reading! Wink I mentioned in an earlier post not to be scared away from any treatment based on possible side effects. Lithium has been my silver bullet, blocks 70-80% of my attacks and side effects have been few for me. I'm episodic and historically it works better for the chronics, go and figure.  Grin

Joe
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JustNotRight
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Re: Can't believe I haven't found this site before!
Reply #6 - Aug 24th, 2009 at 9:19pm
 
No wonder my Doc wants me on Lithium... Chronic here...

Guiseppi: Does the lithium make you lethargic or mess with your thinking or concentration?  This is a major concern for me since my job is so detailed oriented.

Sue:  I know what empty nest is all about lol my youngest is in college and my daughter has been on her own for a few years now.  I miss them and worry when I don't hear from them for a few days.  They both call two to three times a week but occasionally they get busy and don't have the time.  It does get easier having them away but the worry will drive you mad if you don't keep yourself busy or if you let it make you buggy.   Just remember you raised them and did a good job, they have good heads on their shoulders and believe it or not they will use them most of the time  Grin .

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« Last Edit: Aug 25th, 2009 at 6:46am by JustNotRight »  

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Charlie
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Re: Can't believe I haven't found this site before!
Reply #7 - Aug 24th, 2009 at 10:57pm
 
Welcome Sue. It's good to meet you but I'm sorry that it's because of this horror. You'll find a lot of good stuff here and these kids know so much more than I ever dreamed when I had my experience with the beast. I no longer get hit but I can't stay away as I've met so many clusterheads. I recommend it for you soon. The thing we all notice is that when you meet, no one has to explain a thing about CH. It's impossible to describe but it's like meeting an old friend. That you get hit too, isn't at the top of the list for every conversation. It's wonderful.

I took Depakote some years ago for my epilepsy. It was pretty useless and it made me a little distracted, I thought. I don't think it's exciting though. Probably can't hurt.

Here is a technique for you to try that I post now and then:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from my neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique may be very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      
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Sue
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Re: Can't believe I haven't found this site before!
Reply #8 - Aug 25th, 2009 at 9:35am
 
Thank you all. This cycle seems to have hit me particularly hard. Like it's saying....we gave you 3 yrs off, so now you get to pay! The last two night I have had 8-10 breakthrough during the night.  I kinda feel like the living dead right now. I have tried some "mind control" type things before and have had a little success with that. I may go ahead and try the Depakote.  I just really hate drugs!
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