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Topic: Hi y'all (Read 250 times) |
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Tak
New Board Newbie
Kill the Beast!!!
 
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Hello there my fellow clusterheads! It has been quite a long time since I have been to this site. Like a few people I have seen that have posted here, I don't like to even think about CH's let alone come to a site devoted to the very thing I despise. Until the 7th of this month I had been PF for close to five years and I was loving life! Since my last time here (back in early 2000 if memory serves me) I have been to Baghdad and back and got married. Then I had a ton of stress thrown at me from alot of corners and I believe it triggered this cycle. Which in a way makes me wonder why I didn't get these damn things when I was in Baghdad getting shot at almost daily.
This time the CH's are worse than I can ever remember. I am getting around 5 to 6 KIP7-8 CH's everyday. I do not have a neurologist or a primary doctor of any kind and I am finding it very difficult to get in to see a neurologist without a referral and the first office visit is upwards of $250, then I would have to pay around $150 to $200 for the medicine even with my insurance. My wife and I are supposed to be going up to Oklahoma to spend Thanksgiving with her parents but she has said that if I am still getting these damn HA's we are going to cancel the trip. I don't want to be responsible for her not beig able to spend Thanksgiving with her family so I am hoping to get in somewhere to at least maybe get some samples of stuff. There is this girl that works at my office that was told she was having migraines but come to find out she has part of her brain that is too big and is rubbing up against her skull. Poor girl! Anyway, she is about 17 or so and she has been bringing me samples of the medicine she got that doesn't work for her. The other day she brought me some Frova or however you spell it. When she gave it to me I was in the throes of agony and I took it as soon as it hit my hand. Then I went trolling for info on Frova and it said they were essentially ineffective for CH's. Well, it certainly worked for me! My wife and I got home last Friday night and I was dancing around all happy and she thought I was going insane due to the pain I had been going through but I told her I was pain free for the first time in a while. Then the next morning I got hit with some serious HA's that kept me horizontal for about three days.
Well, enough rambling. I can't say that I am glad to be back here but I am glad that there is some place that us who suffer the dreaded Beast have a place to find some kind of solace. Thanks to everyone that makes this site happen and to everyone that is part of the strongest group of people in the world. I wish you all many pain free days and nights and I pray that someone out there will someday very soon find a cure for this monster!
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nani
CH.com Alumnus
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Got kudzu?
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Re: Hi y'all
« Reply #1 on: Nov 16th, 2006, 10:28am » |
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Welcome back, Tak. Stick around this time, and you can offer your wisdom and support to those who need it. 
I'm not surprised that you weren't getting hit while in Iraq. Most of us find that relaxing is a trigger. High levels of stress (and I really can't think of a higher one) will often keep the CHs at bay.
Frova is a med that some have found success with. I believe it also stays in your system long enough to also work as a prevent. Your GP can prescribe it, along with oxygen. If you haven't already, read the oxygen info link on the left. It works for many of us.
Discuss preventatives with your dr as well.
Look here for a list of things that work for us:
http://www.ouch-us.org/medications/medications.htm
good luck and pain free wishes, nani
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| « Last Edit: Nov 16th, 2006, 10:51am by nani » |
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Others may come and go, but MY power is MINE.
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BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
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Re: Hi y'all
« Reply #2 on: Nov 16th, 2006, 4:56pm » |
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Hi Tak,
Sorry to hear you are having a hard time but welcome to the Board.
While waiting to get prescribed meds, you can try taking melatonin at night. Its a natural remedies that you can buy from most health food shop and its fairly safe. Start from 6 mg at night 30 mins before bed then work your way up increasing by 3mg every 3 days or so, some people need to take as high as 18-20 mg to work, but it can stop the night hits as well as reducing some day ones.
Applying ice or hot pack to the neck, head, temples during a hit also help many to reduce the pain. Some people find hot or cold showers help too. Experiment with the heat or the cold to see which works best for you.
Drinking a lot of water and taking vitamins supplements such as B 12 and Magnesium also help, same as drinking Red Bull and green tea.
I know these things wont stop the beast but at least they will provide some relief until you get your medications.
Take care and painfree wishes to you
Annette
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kcopelin
CH.com Alumnus
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good grief
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Re: Hi y'all
« Reply #3 on: Nov 16th, 2006, 5:41pm » |
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Tak,
You're a veteran, right? If so, please register at the nearest VA clinic. You can get medical care there and if you ever need help navigating their system, PM me.
Hang in there.
PFDAN y'all,
kathy
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Words count, chose carefully.
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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
 
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Re: Hi y'all
« Reply #4 on: Nov 16th, 2006, 6:53pm » |
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Quote:Then the next morning I got hit with some serious HA's that kept me horizontal for about three days.
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Unless I have knocked myself completely unconscious by banging my head into the wall...horizontal is the last position I can be in.
Do, however look into the option of going to the VA..You've earned it.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Jonny
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Give me a shovel Ill dig my own grave!
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Re: Hi y'all
« Reply #5 on: Nov 16th, 2006, 6:59pm » |
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on Nov 16th, 2006, 6:53pm, Linda_Howell wrote:Unless I have knocked myself completely unconscious by banging my head into the wall...horizontal is the last position I can be in.
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Ditto!
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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.
- Guiseppi
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Ernie_Moss
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Re: Hi y'all
« Reply #6 on: Nov 16th, 2006, 7:55pm » |
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Hi Tak I can't say welcome back (other than you're getting support) because to do so would mean I am glad the demon has taken over your head. I ditto the others about being protate, man I am running everywhere and cannot lay down. Until you can get your meds, I am an ole fart so I don't do much of it but exercing may be of some benefit to you verses laying down during your attacts. Also try caffine, it is a vascular contrictor. I don't know if you have access to welder's oxygen, but that may be of benefit as well. Oxygen combined with Imitrex (which of course is expensive and prescribed) work fairly well to abort my attacks. My heart goes out to you man, as I am now in my worst every cycle and am about to go crazy, although I can usually get them under control within an hour its just having so many in a day. I hope you can find a VA Hopital soon so they can at least prescribe you some meds. Be very careful about taking any pain meds because they can have a rebound affect and actually cause another attach.
Ernie.
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Ernie Moss
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thebbz
CH.com Alumnus
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Ow,Ow,Ow
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Re: Hi y'all
« Reply #7 on: Nov 16th, 2006, 8:48pm » |
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Quote:Hi Tak I can't say welcome back (other than you're getting support) because to do so would mean I am glad the demon has taken over your head. I ditto the others about being protate, man I am running everywhere and cannot lay down. Until you can get your meds, I am an ole fart so I don't do much of it but exercing may be of some benefit to you verses laying down during your attacts. Also try caffine, it is a vascular contrictor. I don't know if you have access to welder's oxygen, but that may be of benefit as well. Oxygen combined with Imitrex (which of course is expensive and prescribed) work fairly well to abort my attacks. My heart goes out to you man, as I am now in my worst every cycle and am about to go crazy, although I can usually get them under control within an hour its just having so many in a day. I hope you can find a VA Hopital soon so they can at least prescribe you some meds. Be very careful about taking any pain meds because they can have a rebound affect and actually cause another attach.
Ernie. |
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Go Ernie! Couldn't have said it better.
jb
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It wasn't me I didn't do it
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Richr8
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It's all about today...
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Re: Hi y'all
« Reply #8 on: Nov 16th, 2006, 8:49pm » |
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Hi Tak,
Nice to meet you, just sorry it had to be here. I''l have to give another vote for O2, but can't highly recommend anything else as I am still stumbling around looking for the magic bullet myself. There are multiple options discussed here that offer varying degrees of relief. Be sure to read up on all the options and find one that works best for you. If it's listed, someone here has tried it, and will certainly give you their view on how well it did or did not work for them.
When you are feeling better, it will happen, jump in and row. There is alway's someone here looking for help, advice, or just company.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Hi y'all
« Reply #9 on: Nov 17th, 2006, 7:11am » |
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Tak,
I'm so sorry that ch is back in your life. I'm glad that you came here.
I agree that caffeine can help a lot. My primary treatment is just a can of ice cold Red Bull, but I have always caffeine tablets with me.
Now, check and see about the meds and treatments, I bet that there has been new ones since the last time you had to deal with the demon. I'm sure that you will find a treatment, which helps you with ch this time.
I hope you will have a PF Thanksgiving.
Best wishes & PF vibes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Tak
New Board Newbie
Kill the Beast!!!
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Re: Hi y'all
« Reply #10 on: Nov 17th, 2006, 4:44pm » |
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Thanks to all that replied to my topic. For information purposes, I have been a CH survivor ever since I can remember. When I was really young I started getting these bad headaches so my mother took me to the doctor. They thought it was my eyesight. They said my eyes were straining too hard to see and that is what was causing my headaches so they gave me glasses. Still got headaches. I am a seasoned veteran when it comes to fighting these damnable things. I have many different techniques that are prevalent throughout this website (i.e. taking a bath in as hot of water as I can stand, ice packs on the back of the neck and forehead, icy hot applied to my head, etc.) and I even tried that Sinus Blaster stuff that is linked from somewhere in this site and that didn't work for me, just triggered another one.
When I said I was horizontal that did not mean that I was inactive. I have always had "restless legs" and when I get hit my legs are going ninety to nothing and I try to concentrate on the rhythm my legs make in order to distract myself.
What I find that gives me the most "comfort" when I do not have any meds of any sort is this:
I will go and fill up the bathtub with as hot of water as I can possibly stand. I lay on my side and soak the affected side of my head in the hot water as I massage my temple, face and neck. Then I will get out and go lay on my bed with a fan turned on high, grab the icepack and put it under my neck, rub icy hot on my head, then I grab my trusty pillow case that I tie around my head as tight as I can stand. Then I will lay there and rock my legs back and forth. For some reason this will usually (I stress, usually) abort the attack. I am guessing it might have something to do with the temperature change your body is subjected to in coming from a HOT bath to an ice pack on your neck and laying your wet naked body in front of the fan.
Yesterday morning though I woke up and felt a "banger" (what I have always called the bad ones) working its fingers into my neck so I chugged a Starbuck's doubleshot and by the time I got out of the shower the bastard was gone.
Yesterday afternoon I got squeezed in to see a pain management doctor and this guy was very cool. He was pleased that I had done my homework (thanks to this site) and he listened to me and asked very pointed questions. He had samples of Frova and gave me 4 pills, one of which I took right then because I had one in his waiting room. He also prescribed me Relpax and I am having trouble finding room in our budget to get them. Even with my insurance it is going to run me close to $100. On top of the office visit to the doctor yesterday costing me $200, it's damn near impossible for me to afford it. Damn the luck!!! LOL
I took my last two Frova this morning and I have been PF all day so far today, but I am scared to death that shortly after I get home from work, my lovely wife will have to witness this bastard kicking my ass once again. I hope you all have a great weekend.
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