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Topic: Someone please help me. Tell me Im gonna be okay.. (Read 426 times) |
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Corey_Griffith
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I can't let it beat me
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Someone please help me. Tell me Im gonna be okay..
« on: Jun 5th, 2003, 7:52pm » |
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  The beast has left me alone for two years now. Nothing. Not one visit. Now, He's back, and whats worse, it would seem he wants to collect back rent. Not only does he visit me more often each night, (four times last night), but now he hangs around longer. And even when he is gone, he is still there, lingering just outside or my periphery, making sure I dont forget he's there.
What is this?!?! He's not supposed to do that! Once he leaves, isnt he supposed to leave for good? Not come back! And worse than before?!?!?
What do I do??
I had some zomig, but my no good plan only allows 40 measly mg per month. That was gone the day after I friggin got it! Now all I can do is get into a hot tub and suffer, and when you are 6 foot 6 and weigh 350 lbs, there is not much to work with. I feel like punching a hole in the wall sometimes, I get so frustrated. God!! 
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suzy617
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #1 on: Jun 5th, 2003, 7:57pm » |
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Unfortunately the beast does usually find his way back into most of our heads but I would suggest you call your Dr that gave you the meds the last time and see if he can help you ASAP.
You will be ok, hang in there. It does get better and it will go away. Keep that in mind. Try to think of the pain free times you will have soon.
Suzy
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| « Last Edit: Jun 5th, 2003, 7:59pm by suzy617 » |
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OneEyeBlind
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #2 on: Jun 5th, 2003, 8:02pm » |
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Yup, call the doc. In the meantime use some of the cost free methods of getting rid of the beast ......
Ice/hot packs on your head
Showers hot/cold ... which ever pushes the beast away
Extreme excercise (jumping jacks, push ups .. what ever you prefer)
Hot sause under the tongue (never tried this one but it has been recommended)
There are lots of alternative fixes out there. Try them !!!!!!!!!
Good luck ......... the beast sucks.
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Not4Hire
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #3 on: Jun 5th, 2003, 8:02pm » |
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sorry yer hurtin corey... if *we* could..we would take on a piece of your MOFO... just remember, this will NOT kill you... it will pass.... hang in ...use the Tools we all use to *deal*.... here's just one:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Good Luck...Steve(N4H)
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eyes_afire
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #4 on: Jun 5th, 2003, 8:09pm » |
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Hi Corey. My advice: get on a preventative medication. One of the most effective with the least side effects is Verapamil. Verapamil has been a life saver for me. I think that 'lingering just outside my periphery' is probably what we usually refer to here as 'Shadows'. I still get many shadows, but I haven't had a significant pain breakthru since starting Verapamil again.
--- Steve, one of many...
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Callico
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #5 on: Jun 5th, 2003, 8:11pm » |
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Corey,
It will get better! It left you once before and it will leave you again. In the mean time don't try to look to far ahead. Stay focused on right now and deal with the minute. It will get better! Keep reminding yourself of that. Check into the O2 link and try it. It works for me if I can get to it early enough. Remember, It will get better! Did I already mention it will get better? Sometimes that is the only thing that gets me through, Knowing that IT WILL GET BETTER.
jc
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Ann
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #6 on: Jun 5th, 2003, 8:23pm » |
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Corey,
We've all been there and some of us are still there. You were lucky..you got a break for a 2 years, and that's proof that it can happen. Hang on to that thought.
Th gang here has given you excellent advice. Read on!! I don't know if you've tried oxygen, but it works for a lot of us here. Also, if you can, get a prescription for imitrex injections and use the tip on the left. That should get you through as well. Try using your zomig as a preventative. I use 1/2 an amerge at night before bedtime and it gets me through the night pain free. Verapamil is a very popular preventative and some of us, myself included use it in combination with lithium. It works like a charm.
Good luck and use your pain free times wisely. They'll help you get over the bumps!
hugs
Ann
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kim
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #7 on: Jun 5th, 2003, 8:24pm » |
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Hey Corey,
You are going to be ok. So sorry and know how ya feel. Lots of help here. Gotta get to the doc pronto!
I apply ICE to face and heat to neck/shoulder areas. You could try the hot tub with ICE pak to areas in face and head. Also, try and swig a hot cup a coffee as soon as ya get the "feelin".......
Well wishes***!
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jonny
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #8 on: Jun 5th, 2003, 8:29pm » |
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on Jun 5th, 2003, 7:52pm, Corey_Griffith wrote:| I feel like punching a hole in the wall sometimes, I get so frustrated. God!! |
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Been there done that and have the t-shit and bumpersticker.
When all else fails remember this quote big guy .
"It will end"
Who said that quote?.........Me!
28 years chronic (it never goes away) and the first 14 with no meds at all.
Take it from someone that is not as big and maybe not as bad as you but has a heart made of titanium.
The pain will always end!!!!!!!!!!!!!!!!!
.............................................jonny
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cootie
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #9 on: Jun 5th, 2003, 9:25pm » |
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You'll be ok big guy......lotta good advice here.....we had to have our doc call our insurence co to verify and explain WHY he needed more meds then what they allowed each month and it worked......they upped the amount of pills he could have but had to go thru the same rig-a-ma-row each month. Doc had to call the insurence co's physicians hotline. But we were jus glad it worked !!! Good luck and PF times wisher Pam
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Peppermint
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #10 on: Jun 5th, 2003, 9:29pm » |
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Corey,
I'm sorry you're in so much pain.
However long it seems, it WILL end. Keep saying that to yourself.
Good luck & PFDAN,
Peppermint
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oringkid
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #11 on: Jun 5th, 2003, 9:33pm » |
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It will end.
It will end.
Like Kim said... hot black coffee at the first sign does help.
Ice packs (or frozen peas, corn whatever) on head and also try it on the bottom of your feet. That has aborted a few for me. Breathing cold air (air conditioner vent in house or car or freezer) I've even aborted a few by putting a tiny bit of tabasco up my nose.
It will end.
It will end.
Sherry
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BruceD
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #12 on: Jun 5th, 2003, 9:52pm » |
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Corey,
You've had some good feedback already and I'll back up what they're saying. Like you I was PF for about a year and a half when my last cycle started. Then after about 5 months of constant hell I found this place. It gave me the chance to vent, to hear what others are doing, and to give O2 a try. Within a month of coming here my cycle ended and I was PF and had found that O2 worked for me. Since that time, I've hung around here and tried to learn and give any support that I am able.
Just remember that it will end and that you CAN make it through. Live for the PF times and don't let it beat you. Give O2 a chance (if you can) and stay around here because this place rocks.
Take care
BruceD
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don
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #13 on: Jun 5th, 2003, 10:09pm » |
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Get good medical help from a decent neuro and follow some of the non medical pain management techniques you'll find here and you'll be fine.
Click on the members link above. You'll see a lot of names. I'll bet not one of them have died from CH. Frustrated, grouchy and psychotiuc bunch maybe, but still alive and bitchin.
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| « Last Edit: Jun 5th, 2003, 10:10pm by don » |
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gene
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #14 on: Jun 5th, 2003, 11:13pm » |
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Hi friend
I was 2 yrs pf until 2 wks ago. Then 4/6 tens a day!!
Found this site, got proactive and am now medicated/PF!! A 10 day prednisone taper has done it for me for a week!! Next? Wo Knows??
Nothing is worth suffering the beast w/o meds!!
I went to the ER twice!!
Does imitrex work? E-mail me if so, I can help!!
Gene
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Charlie
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #16 on: Jun 6th, 2003, 2:34am » |
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Like they say: All really shitty things come to an end.
Just an idea but a cool bath may be more effective. The reason I say that will be found in the following technique that I found very successful:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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cathy
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #17 on: Jun 6th, 2003, 3:49am » |
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Hi Corey....Sorry to hear your having such a rough ride with the beast....!!
W E L C O M E !!
Cathy
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echo
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #18 on: Jun 6th, 2003, 6:57am » |
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Seems as though the SOB losses interest in us for a year or two and then discovers the sheer joy he has been missing out on and dumps on us big time. Sorry to read you are back in cycle. I know it hurts like hell and seems to go on forever. I can relate, it's been my life for nearly 30 years. The pain will subside, the pain itself won't kill you, although at times I pray it will, and the cycle will end.
Hang in there! This too shall pass.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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CJohnson
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #19 on: Jun 6th, 2003, 9:18am » |
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Going for a run as soon as I feel one coming on helps me deal physically and mentally. Vigorous exercise increases brain serotonin levels, which may act to abort the activation in the trigeminal nerve. With me, the pain usually is gone in 5 - 30 minutes, if I run as soon as I know its coming.
Vigorous execise also produces endorphins which make you "feel good". The product of increased brain serotonin and endorphins may play a role in modulating my overall mood, keeping the despair factor down.
You are going to be OK. It will end.
PFDANs
-Curtis
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ZAIRA
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #20 on: Jun 6th, 2003, 3:19pm » |
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Hello Corey,
I’m sorry for that the beast is still alive... now you are no more alone!
I understand you!
I’ve been suffering of CH for 10 years, and the longest remission period was of 2/3 mounths, never the less I feel happy and fortunate if I think of the chronic people! In my opinion the zomig that you’re taking is very low quantity. Also my suggestion is to try O2!
Be strong and all the best wishes to you...
Zaira
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| « Last Edit: Jun 6th, 2003, 3:28pm by ZAIRA » |
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Opus
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #21 on: Jun 6th, 2003, 3:27pm » |
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Corey,
I can't add anything so....
Opus/Paul
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| « Last Edit: Jun 6th, 2003, 3:28pm by Opus » |
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katethecelt
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Re: Someone please help me. Tell me Im gonna be ok
« Reply #22 on: Jun 8th, 2003, 6:29am » |
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Welcome Corey.
I'm sending Pain Free vibes to you - they'll keep coming too. My friend Svenn (also a Clusterhead) told me "You are stronger than this." It has become my mantra.
We understand the pain, fear, frustration, anger, the Beast brings. Someone will always be here to help and listen.
Are you drinking enough water? The hot tub is great, but may dehydrate you. Ask your doc for samples of Zomig, try Imitrex, and get on a preventative.
Kate
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