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Topic: CH Newbie (Read 894 times) |
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Theresa
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Hi everyone.
I'm 25 years old and I believe I am entering my second cluster episode. Friday night I woke up with what I thought was as "bad headache." Ten minutes later I was in so much pain I couldn't believe it was possible to live through something like that. My first episode was about 4 years ago and incredibly mild compared to what I experienced the other night. I have seen a doctor but he decided that since the headaches were so short (20mins max) it wasn't necessary to prescribe medication. The other night lasted 1 1/2 hours and was so much more intense than before. I haven't had one since but I'm terrified of the next attack. I'm glad there is a place like this with so much information since no one here seems to know much about cluster headaches.
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Gator
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Re: CH Newbie
« Reply #1 on: Mar 14th, 2005, 1:10am » |
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I have the perfect solution to your doctor problem. Take a pair of pliers, a railroad spike, a propane torch and a sledge hammer to your next appointment. When the doctor asks you why you brought the items, tell him you simply want to show him what the pain feels like. Tell him you are going to heat up the railroad spike to glowing and drive it in his right eye with the sledge hammer and leave it in there for 20 minutes. Tell him he shouldn't need any medication due to the short duration of the pain.
What a jerk! I can guarantee you he would be dipping into his samples really quickly if he were to get hit with an attack. He would not ride it out for 20 minutes like he wants you to do.
Welcome to the website. Sorry you are having troubles with your physician. It's a sad fact that most doctors, even most specialists know little to nothing about cluster headaches.
Tell us a little about your headaches. Where is the pain centered? How quickly does it ramp up? How severe on a scale of 0 to 10; 0 being no pain and 10 being the worst pain you have ever felt. What do you do when you get a headache? Lie down, pace the floor, bang your head, etc? How quickly does the pain leave you when the attack is over?
Take the cluster quiz and read all the information in the links to the left. Also read through the threads in the various message boards. There is tons of info, new info almost daily.
I, like most people here, would recommend you see a neurologist and have an MRI/MRA done to rule out any possible organic causes for you pain. It's always better to err on the side of caution where your life is concerned.
Also check out the OUCH Canada website. http://www.clusterheadaches.ca/DesktopDefault.aspx Very good resources there to get you in touch with competent physicians and get a proper diagnosis and treatment.
Again, welcome to our little corner of the web.
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jokrs2
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Eventually He will make us pain free!
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Re: CH Newbie
« Reply #2 on: Mar 14th, 2005, 1:53am » |
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Welcome apenner. Sorry you are experiencing the pain.
That was an awesome reply by Gator. Some of us have had to educate our doctors about this problem because they just don't understand how something that doesn't show up on an x-ray (like a broken bone), can hurt so bad. Just a word....I took prescription Morphine Sulfate for 14 years (every day), and it did NOTHING to stop the Cluster Headaches. So in my opinion if they try to shove an opiate at ya, tell them to shove it and tell them I told you withdrawal and an "additional problem" ain't worth it. Hope your situation goes away forever and you have pain free days. Blessings, Joe (Chronic CH for over 20 years) and still looking for an answer.
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Given strength, courage & a sound mind!
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Theresa
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Re: CH Newbie
« Reply #3 on: Mar 14th, 2005, 6:05pm » |
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The headaches always start on the right side of my face behind my right eye. With this last episode I went from totally pain free to wanting to scream within 10 minutes. I just kept telling myself it would be over in 20 minutes since that's as long as the other ones lasted. The pain quickly started shooting up the back of my head with is totally new for me because I don't remember it being that bad last time. All I could do was pace the floor and push a cold wet face cloth into my right eye and the back of my neck as hard as I could. After about 1/2 and hour I was able to sit in a chair and rock but kept getting up to pace every couple of minutes. On a scale of 0-10 I would say that at peak it was probably an 8 or 9. After about 1 1/2 hours the pain started to subside and I was okay again. One thing I have noticed since is I seem to have a mild headache on the right side...not enough to really complain about but it never seems to go away. Is this constant dull headache normal of cluster headache sufferes?
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thomas
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Re: CH Newbie
« Reply #4 on: Mar 14th, 2005, 6:21pm » |
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on Mar 14th, 2005, 6:05pm, apenner wrote:| One thing I have noticed since is I seem to have a mild headache on the right side...not enough to really complain about but it never seems to go away. Is this constant dull headache normal of cluster headache sufferes? |
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Yes, we call them shadows.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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jokrs2
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Re: CH Newbie
« Reply #5 on: Mar 14th, 2005, 6:54pm » |
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Yep. The damn shadows that remind us that the beast is looking for a way back in and it's just a matter of time. I wish I could turn the clock back to when my clusters were shorter in duration. Yesterday I got hit with a k-10 and it didn't back off to a k-5 until 14 hours and 4 kudzu had passed and I finally fell asleep sitting up with the help of 6mg of melatonin. The pain is a pi$$er...unbelievable, and many times I have been glad my beliefs won't let me commit suicide. Heaven is too important. Blessings, Joe
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Theresa
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Re: CH Newbie
« Reply #6 on: Mar 14th, 2005, 7:06pm » |
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Are there any signs that the episode is coming to an end? I haven't had enough of them to recognize when an episode is coming or ending.
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Kris_in_SJ
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Re: CH Newbie
« Reply #7 on: Mar 14th, 2005, 8:13pm » |
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Hi,
Your question is kind of difficult if you haven't had regular cycles so far. It really varies for everyone.
Mine normally start with a severe 30 - 45 minute HA every 2 or three nights, but quickly escalates to 1 every night at nearly the same time, and they get longer, as well - 1 1/2 to 2 hrs. By then I've already been to the doc and am loaded up with Imitrex injections and on high dose Verapamil.
Once the meds kick in, the severe ones fade in intensity and frequency, but the shadows continue for a number of weeks.
I kind of know my cycle is over when I start sleeping normally again without the benefit of Melatonin.
It sounds to me like you definitely need to see a neurologist, get a difinitive diagnosis, and get started on some kind of protocol. Read all you can and take info with you to the doc. Relief is out there, but you will probably need to advocate for yourself.
Many Hugs,
Kris
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don
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Gator said it all.
All I have to add is start looking for a new Doc.
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| « Last Edit: Mar 15th, 2005, 5:43pm by don » |
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Theresa
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Re: CH Newbie
« Reply #9 on: Mar 15th, 2005, 6:31pm » |
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Thanks everyone for answering my questions....as I'm sure you can tell my doc isn't that helpful and he's also on holidays so I can't even go see him until april. I live in a fairly small town with an incredible doctor shortage so it's the er I wait. I had another attack today but just a k5 so I'm considering myself lucky. I was at work so luckily I was able to live it out without having to go home and it passed fairly quickly. After though I was completely wiped so it made the day incredibly long.
Thanks again everyone for your answers and information. 
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hzzz
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Re: CH Newbie
« Reply #10 on: Mar 15th, 2005, 9:45pm » |
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on Mar 14th, 2005, 6:21pm, guesst wrote:
Yes, we call them shadows. |
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I hadn't heard of that term until I found this site, but I've always had them during an episode. I usually get the shadows about a week before an episode starts. They stay with me until the end of that particular episode. One day I will wake up and all of a sudden the shadow is gone. I know right away the episode is over. The shadows can be pretty bad in themselves or just a slight annoyance. Since starting the Kudza they are just a slight annoyance.
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TxBasslady
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Re: CH Newbie
« Reply #11 on: Mar 16th, 2005, 2:38am » |
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Hi and welcome to the board.
You might try Melatonin for those night hits. It works for alot of folks here. You can buy it without a Rx.
Check out some of the posts here on the board.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
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jokrs2
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Re: CH Newbie
« Reply #12 on: Mar 16th, 2005, 2:47am » |
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I am having success with Kudzu and melatonin. All hits today were shut down with maybe a k1 shadow. One of the best days I've had in years. Started on Kudzu 11 days ago after imitrex became mostly ineffective. Just my results  . Wishing you PFD's, Joe
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Given strength, courage & a sound mind!
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Theresa
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Re: CH Newbie
« Reply #13 on: Mar 17th, 2005, 5:47pm » |
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Hi everyone,
I had another attack lastnight so I went to the ER. The doctor gave me oxygen and WOW it really worked. At least now I know there's some potential pain relief if I get hit again.
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Theresa
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Re: CH Newbie
« Reply #14 on: Mar 21st, 2005, 9:03pm » |
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Well I thought the oxygen was the answer until I got hit again and went back to the ER. I had the same nurse I had had two days earlier who actually had the nerve to ask me if I had even tried taking advil before I can in this time. I couldn't believe how ignorant she was. She took my temperature then sent me to the waiting room for a couple of minutes while she sat and did nothing. It was almost as though I wasn't supposed to be there for oxygen or something. I can't wait for my Doctor to get back. I'm starting to get two and three HA's a day now with no end in sight. 
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sandie99
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Re: CH Newbie
« Reply #15 on: Mar 22nd, 2005, 3:03pm » |
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Hi Theresa,
I am so sorry that you're hurting. I do hope that CH leaves you alone.... 
best wishes & PFdays,
Sandie
p.s. I'll 25 in April...
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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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seasonalboomer
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Re: CH Newbie
« Reply #16 on: Mar 22nd, 2005, 3:15pm » |
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Theresa,
Welcome to the boards.
You may be a great candidate to try the Kudzu treatment that many have been giving a go. Why I say that is that because you would not be de-toxing off of many other medications, and since you're having to wait anyways, the Kudzu could be worth a go.
Many of us have seen results in 24-48 hours, particularly episodics. While it may not make them "nuthin but memory" it has had some effect and some success.
You can find them at GNC (sometimes), Herbal remedy/Health food stores (more often), and on-line (all the time). 2 pills, 3 x a day with none ofthe known side effects of many other treatments. Might be worth trying while you're waiting for your doc to get back.
Best wishes,
Scott
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Theresa
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Re: CH Newbie
« Reply #17 on: Mar 24th, 2005, 10:51pm » |
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I went to the doctor today and he prescribed me Imitrex nasal spray which I've had some succes with for stopping my attacks and Indomethacin. Has anyone else here tried Indomethacin? I don't know much about it and I've taken two doses so far and it's making me feel kindof spaced out.
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E-Double
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Re: CH Newbie
« Reply #18 on: Mar 24th, 2005, 11:47pm » |
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on Mar 24th, 2005, 10:51pm, Theresa wrote:| I went to the doctor today and he prescribed me Imitrex nasal spray which I've had some succes with for stopping my attacks and Indomethacin. Has anyone else here tried Indomethacin? I don't know much about it and I've taken two doses so far and it's making me feel kindof spaced out. |
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I prefer the injections......very quick for me 99% of the time and I can guage the amount of meds I'm going to take.......
Also indomethacin is really just a super duper NSAID...will be effective for other HA but prob. not for your CH......I take it for a different HA I get along with the CH (fun huh...a damn party in my brain)..It helps those but doesn't do a thing for the CH
Here is a great resource to know like the back of your hand
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!! Print it out and give it to doctor to memorize!!!
Demand Oxygen for your house and for travel (can get different size tanks) read and print this out!!!
http://www.headachesupportgroups.com/oxygen/oxygen.htm
Wishing you the best !!
Best,
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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Theresa
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Re: CH Newbie
« Reply #19 on: Mar 25th, 2005, 12:07pm » |
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Sorry about all the questions but I'm pretty new to all this. What is a NSAID? My doctor told me to take the indomethacin three times a day so I did and got hit harder than ever this morning with a K9 which the imitrex didn't touch.
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nani
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Re: CH Newbie
« Reply #20 on: Mar 25th, 2005, 12:13pm » |
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on Mar 25th, 2005, 12:07pm, Theresa wrote:| Sorry about all the questions but I'm pretty new to all this. What is a NSAID? My doctor told me to take the indomethacin three times a day so I did and got hit harder than ever this morning with a K9 which the imitrex didn't touch. |
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NSAID: non steroidal anti inflammatory drug.
Indomethacin is very effective for "icepick" headaches, but not for CH. I tried it to rule out Chronic Paroxysmal Hemicrania...I don't have it. It gave me the WORST non Cluster headache I've ever had.
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| « Last Edit: Mar 25th, 2005, 12:14pm by nani » |
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E-Double
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Re: CH Newbie
« Reply #21 on: Mar 25th, 2005, 2:26pm » |
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Yup...what Nani said..........
It's comperable to Vioxx, Celebrex, bextra, Ibuproferin.......yet for whatever the reason IT helps other HA's
Like many other meds you can get rebound from it.
Depending on your dosage I believe the intensity of the rebound (my opinion).....I ran out and need to refill and I get a rebound near around the time when the next dosage is due....kinda like withdrawl I guess.....Who the hell knows.
READ and Print out the info. that we sent you....
EMPOWER yourself
E
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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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Theresa
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Re: CH Newbie
« Reply #22 on: Mar 31st, 2005, 10:08pm » |
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Wow you guys were right about the rebound headaches from the Indomethacin. I can't decide which is worse...killer cluster or non stop rebound headache?? Anyway I stopped taking it after only a couple of days. I'm fortunate in that I can abort most of the attacks with Imitrex nasal sprays.
I've been pain free with nothing but a couple of shadows for three days now and no night attacks for the past three nights also. Knock on wood but hopfully this cycle has passed. I feel so fortunate that it was so short.
My thoughts and blessings go out to all of you and thank everyone for all your help and answers.
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KMT
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Re: CH Newbie
« Reply #23 on: Mar 31st, 2005, 11:44pm » |
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Ok reading all this I am scared I just started Indocine and you all are talking about rebound doesn't sound like fun... 
Welcome to the board but sorry you needed to seek us. I am new to the Kudzu so can't give my two cents just yet.
I hope you find relief soon...
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aka...................................................... KimY
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RichardN
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Re: CH Newbie
« Reply #24 on: Apr 1st, 2005, 12:32am » |
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You must live close to the ER for 02 to have given you noticeable relief. I can kill him in a few minutes during the day . . . .at the KIP 2-3 level, and within 5-15min if hit at night with a KIP 4-5. I'm never more than a minute away from my tank and I don't fear sleep anymore.
I you wait til the ha is in the 6+ range, he's much harder to beat, and sometimes not possible . . . . if 02 works for you, you are enduring much more pain than necessary by not having it immediately at hand.
Copy the pertinent links and take them to your doctor . . . who obviously needs some education in that area of therapy.
Be Safe, PFDANs
Richard (02 lover . . .can ya' telll?)
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I can live with the beast as long as I don't have to "dance" with the bastard.
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