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Topic: Need to have someone to talk with... (Read 1292 times) |
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shenke
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Need to have someone to talk with...
« on: Jan 30th, 2006, 9:14pm » |
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It's been tough this time, haven't have CH in 5 years, who would have thought they would would return. Getting more educated this time though. Makes me mores scared at times, not sure my husband understands....It does help to read others stories. Real glad to have found this site.
Sheila
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Jonny
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Re: Need to have someone to talk with...
« Reply #1 on: Jan 30th, 2006, 9:16pm » |
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You hang in there, shenke....we will help you!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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thebbz
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Re: Need to have someone to talk with...
« Reply #2 on: Jan 30th, 2006, 9:32pm » |
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shenke,
glad you found the site. Ch is tough..your tougher.
Welcome and stick around. Lots to talk to. Bring the other half too.
jb
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shenke
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Re: Need to have someone to talk with...
« Reply #3 on: Jan 30th, 2006, 9:37pm » |
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Thanks, but in the middle of the night I don't feel so tough. I feel like I'm going insane. It's scary...thanks for listening. It's hard to explain to just anyone - Sheila
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thebbz
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Re: Need to have someone to talk with...
« Reply #4 on: Jan 30th, 2006, 9:42pm » |
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Thats OK I'm a 6'4" huge hairy biker and I cry like a baby   Just kidding. Nope dont have to explain the pain. Have you read the information on the left? There is a chatroom somewhere around here as well. Do you have an abortive?
jb
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boonie
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Re: Need to have someone to talk with...
« Reply #5 on: Jan 30th, 2006, 9:44pm » |
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This is the one place everyone knows what you are going through, ch. just plain sucks but knowing you are not alone is a comfort . I have been doing the night dance myself lately but it is getting better but it is never a fun ride. you hang in there.
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boonie
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thebbz
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Re: Need to have someone to talk with...
« Reply #6 on: Jan 30th, 2006, 9:45pm » |
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http://www.clusterheadaches.com/chat/
theres the link I think someones home.
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It wasn't me I didn't do it
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E-Double
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Re: Need to have someone to talk with...
« Reply #7 on: Jan 30th, 2006, 9:46pm » |
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Hi Sheila,
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
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 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....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. (Maybe I should start folowing my own advice again since my nights suck again hahahaha!)
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
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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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Sean_C
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Re: Need to have someone to talk with...
« Reply #8 on: Jan 30th, 2006, 9:51pm » |
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Hang tough Shiela, hopefully it'll pass soon and give ya another 5 years of pf time. The lights on here 24/7 if ya need to talk 
Cheers 
Sean................................
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Redd
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Re: Need to have someone to talk with...
« Reply #9 on: Jan 30th, 2006, 10:07pm » |
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Sheila,
I felt the way you do before I found this place. The people are the best around, They are my family, friends, and fellow sufferers.
Read Read and then Read some more. You've got a home now with those who DO understand.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Barry_T_Coles
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Re: Need to have someone to talk with...
« Reply #10 on: Jan 30th, 2006, 10:24pm » |
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on Jan 30th, 2006, 10:07pm, Redd715 wrote:Sheila,
I felt the way you do before I found this place. The people are the best around, They are my family, friends, and fellow sufferers.
Read Read and then Read some more. You've got a home now with those who DO understand.
Pegg |
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Well said Pegg; that's exactly the way I felt, this place is the best drug I know.
Sheila Welcome
Your among people who understand
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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burnt-toast
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Re: Need to have someone to talk with...
« Reply #11 on: Jan 31st, 2006, 6:33pm » |
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Gone only to come back - that's one of the things that makes CH so thoroughly confusing. Hang in there is the best advice we can offer, hopefully you will stay on a 5 year cycle of freedom.
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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bassman
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Re: Need to have someone to talk with...
« Reply #12 on: Jan 31st, 2006, 9:34pm » |
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this place is great and all the people here really care, it helps me cope with this beast better than i have been able to in the past it is still been tough but i have learned alot from the peole here and for that i am greatful
may you all find happiness and be free from suffering
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it's all right now...but later?....forget it
thats later. now is now are you going to be here now
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shenke
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Re: Need to have someone to talk with...
« Reply #13 on: Jan 31st, 2006, 9:46pm » |
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It feels so good to come back and read so many replies. You guys really do care. Brought tears to my eyes. Thanks a million. This is what keeps me going!!!!
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E-Double
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Re: Need to have someone to talk with...
« Reply #14 on: Jan 31st, 2006, 9:48pm » |
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http://www.clusterheadaches.com/chat/
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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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imnotbub
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Re: Need to have someone to talk with...
« Reply #15 on: Feb 1st, 2006, 11:09am » |
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It feels so good to come back and read so many replies. You guys really do care. Brought tears to my eyes. Thanks a million. This is what keeps me going!!!!
I know how you feel. I pass the computer every couple of seconds when I'm dancing with the beast, and I can 'feel' the support even if I'm not on.
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Life may not be good, but I think it beats the alternative, and if it doesn't, we'll find out soon enough
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LeLimey
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Re: Need to have someone to talk with...
« Reply #16 on: Feb 1st, 2006, 1:24pm » |
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on Feb 1st, 2006, 11:09am, imnotbub wrote:| ... and I can 'feel' the support even if I'm not on. |
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That's what keeps me going too  Some days it's the only thing that keeps me going!
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Dragnlance
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Re: Need to have someone to talk with...
« Reply #17 on: Feb 5th, 2006, 3:33pm » |
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Sheila,
As a new person to this site, but as a chronic CH person, I know just what you mean. I have posted a thread just a short time ago, and already people are offering help that I never knew people would offer a stranger. Unfortunately the monster is attempting to rip my brains out as I write this, so if it doesnt make a lot of sense, pardon me.
All I can say is, don't let go. Days like this are hard to get thru, but there is a light at the end, somewhere, somehow. To date, the longest time PF that I can remember has been 3months 1 week and 5 days. I have not seen that for several years. I have had 2 PF days since November 27, 2005. Some days are worse than others. Hang on, as, from what I read here, all understand your pain here.
Cyber Hugs!!
Lance
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cynner68
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Re: Need to have someone to talk with...
« Reply #18 on: Feb 5th, 2006, 4:11pm » |
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Hi...my first post here. So glad to have somewhere to go to say the things I am sure many of us feel/think, but can't say to family and friends. Try as they might, they just CAN'T possibly truly understand the emotional turmoil that goes along with the physical torment we go through. One of the worst aspects of it all is just that- no one to talk to that can really understand. It's so hard to put it all into words. Are there even words to describe what we feel? Broken thoughts and bits of sentences that can only be comprehended by a fellow victim. I say victim, because I do feel that way. A crime is being perpetrated against me/us. Unfortunately, the criminal has yet to be caught and brought to justice. Frustration and anger rage in my mind at this unseen villain.
It eases some of the tension just knowing that there are others out there who have similar feelings...
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BobG
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Re: Need to have someone to talk with...
« Reply #19 on: Feb 5th, 2006, 4:17pm » |
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Welcome to the board cynner. Texas, huh? We have a lot of you people here. Not that that is a bad thing.
Tell us some more about yourself.
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Linda_Howell
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Re: Need to have someone to talk with...
« Reply #20 on: Feb 5th, 2006, 4:46pm » |
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You can go to our site here:
http://www.ouch-us.org/members/cgi-bin/yabb/YaBB.cgi
and we will listen. Or give you advice. or help you find links. Or whatever you need.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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cynner68
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Re: Need to have someone to talk with...
« Reply #21 on: Feb 5th, 2006, 5:13pm » |
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Wow, u guys are quick! I'm still wandering around the posts here, and already there are responses to my post.
More about me? Hmmm...
37y.o. mom of wonderful 6y.o. boy, Dylan (my reason for living when the pain makes me want to quit; u know what I mean)
Had migraines since age 14 -MAJOR head injury at that time, they can't tell me if HAs are a result or coincidental as they are in my family as well.
CH as well in the past 10 years or so. No one told me there was a difference back then, so maybe longer?
Probably the same story as many; seen too many docs, tried too many drugs, studies, home remedies, etc. Some new things work, but only for a short while, then they just stop. Been accused of "Drug Seeking", been told I needed a shrink instead of meds, been given massive pain-killers, anti-depressants, etc. CAT scans and MRI, MRA. They did find a few "white spots". Gotta re-test in a few months to see if they change, blah-blah-blah. Still no real answers or solutions.
Basically all but disabled. (Docs agreed a while back, SSA didn't agree, so here I am...trying to work around the pain, etc.) Hubby and I have our own custom carpentry business, but the frequent HAs are a major issue. We constantly have to juggle our schedule, etc. It causes stress which doesn't help the situation at all... 
Currently on Topamax and Maxalt w/ Fioracet for back-up. Of course, these do nothing for the CH, but they do help the MH sometimes. I hate the "stupids" from the Topamax. I USED to be very intelligent and quick-thinking. Now I have trouble remembering what day it is most times. FRUSTRATING!!!!!!!!!!!!!!
As of today, PLZ O PLZ!, my 2 and a half week MH/CH episode has subsided.  Thanks to something I read somewhere on these boards last time I visited, I dug out my TENS unit. It made living through yesterday's EVIL CH attacks possible. Never would've occurred to me, had I not read it here. THANK YOU!
Sorry this is so long, I tend to go on & on when someone will listen...(and no one is interrupting me! )
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BobG
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Re: Need to have someone to talk with...
« Reply #22 on: Feb 5th, 2006, 5:29pm » |
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Hey cynner, talk as long as you like.
You sound like a true cluster sufferer. We all have stories that mirror yours.
Your experience with topomax (aka doppymax) has been repeated many times. Have you tried verapamil? Oxygen instead of the TENS machine?
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Stay stressed. Never relax. Never sleep. Ever.
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cynner68
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Re: Need to have someone to talk with...
« Reply #23 on: Feb 5th, 2006, 5:53pm » |
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TY for the reply and the support...
I am due to see my Neuro next month, but I am gonna' try and get in sooner, because things have been so rough the past few weeks. I saw her right before I had surgery in November. (Hysterectomy w/ removal of 1 ovary- maybe this is factoring in?) Gyn sez I am in very ealry menopause; since before surgery. I have had menstrual HAs for quite some time, and hormonal imbalance, etc. I can't help but think there is some connection there somewhere... 
<Sorry to all you males for girly details, but perhaps it is relevant. Guys have certain hormones, too! lol)
I have read with great interest about the use of O2 on these boards. I am definitely going to ask Neuro about it.
I want off the Topamax, I think. We tried rearranging my dosing to All-At-Night, and it helped a bit, but I still feel like a bumbling fool many days, and on my best day only half as sharp as I used to. I will ask about the verapamil. TY
I see a lot of you use Imitrex. I tried it a long time ago, but due to the heart palpitations and constriction feeling- danger of heart attack- it was decided that I should avoid it. The Maxalt does ok for migraines, but any other suggestions for CH?
I can't take any NSAID or aspirin type meds due to a platelet/clotting disorder, so it does limit my med choices somewhat.
Dealing with all the docs and the meds feels like you are beating your head against a brick wall many times. And let's face it, we do enough of that as it is...
Oh, BTW, Linda, I clicked on the link, but I got a sign-in, pw req'd screen, and so I can't get in...Help?
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| « Last Edit: Feb 5th, 2006, 6:01pm by cynner68 » |
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BobG
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Re: Need to have someone to talk with...
« Reply #24 on: Feb 5th, 2006, 5:59pm » |
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Neuro next month? That's a long way away. Can't he/she see you sooner?
Sometimes these headaches are referred to as suicide headaches. Maybe you can call the neuro's office and toss that name out. Might get their attention.
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Stay stressed. Never relax. Never sleep. Ever.
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