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REDog
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I have visited this site from time to time, and finally decided to sign up.
I have been having cluster headaches since I was in the 8th grade back in the mid 1980s. I remember the very first one... I was running and felt something in my neck that I can best describe as feeling the sound "Sproing!"
Anyhow, I come to this site sometimes partially to remind myself that some of you guys have it a lot worse than I do! This is not bragging... I really wouldn't wish any form of these headaches on anyone!
I typically have the headaches 1/day in the early afternoon for a cycle of 2-4 weeks. They last about 30 minutes start to finish. Sometimes I can go a year between cycles.
They're on the left side starting in my neck and working up right behind my eye. I have some pretty significant sensitivity to light and sound. My left eye tends to water and twitch. Luckily, I don't have many attacks while I sleep. Occasionally I will have some nausea.
On the Kip Scale, I would say my worst attack ever may have been an 8 or 9, but typically mine are in the 4-6 range. I can still drive (although I try to avoid it), and recently ran on an elliptical trainer at the gym through an attack. If I'm at home I retreat to a quiet place, close the blinds, and cover my eyes with a pillow. Moving and rocking don't seem to help much.
Back in the late 90's I mentioned them to a friend's wife, an RN, who mentioned that I might have CH's. Then I talked to my doctor, and he had me try Imitrex tablets. They tend to help, but with a headache that lasts 30 minutes - I'm not sure that they take effect fast enough to really help. I hate to take them at the first sign of an attack, because I tend to have several "shadows" (I think that's the term?) so I never know for sure that it's a full blown attack unless it's ramping up pretty rapidly. I'm thinking of going back to see if the inhaler form could be an option for me.
I also tried a chiropractor for unrelated low back pain, and he said that I have two vertebrae in my neck that are fused together. He said that it's probably inherited - and my mother has the same thing. She always thought it was from a childhood injury though. She has similar headaches, but they last much longer... I think they're migraines.
I find some relief with a re-heatable "Sinus pack" that you warm up in the microwave oven. My newest trick is Thera-gesic at the first sign of an attack, with Imitrex if it gets on up to a 3 or more.
So anyhow - here's my post... Glad to be here!
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| « Last Edit: May 1st, 2007, 3:07pm by REDog » |
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REDog
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Re: First Post
« Reply #1 on: May 1st, 2007, 3:14pm » |
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Oh, I forgot to mention - Alcohol consumption seems to greatly aggravate these attacks. I'm not a heavy drinker... maybe 5-7 drinks per week. A beer or two here and there. But during an attack cycle - I can almost instantly trigger a headache with a drink or two. I'm not sure that I ever made the connection... I remember taking an Imitrex every couple of hours with draft beer back in the late 90s. I first discovered the link (or possible) link between alcohol and the headaches here - so that alone has been a big help!
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Rosybabe
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Re: First Post
« Reply #2 on: May 1st, 2007, 3:20pm » |
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Welcome aboard REDog!
Have you ever used Oxygen? It works for many of us..
Hope you feel better soon and you cycle be as short as you said they tend to be for you.
Good Luck and keep reading , there is a lot of people here that can help with advise or just an ear to vent.
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| « Last Edit: May 1st, 2007, 3:21pm by Rosybabe » |
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ClusterChris
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Re: First Post
« Reply #3 on: May 1st, 2007, 3:23pm » |
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hey redog,
Sorry to hear about your pain bud. Any head pain really sucks. But from your description, it sounds to me that you have migraines, but keep in mind I am no doctor and it could be a number of things. There is a quiz on the left side of the page that does a great job on determining if you are suffering from Cluster headaches so I would first recommend you taking that. Hopefully you are able to properly diagnose what you are suffering from and I wish you all the best!
Chris
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Guiseppi
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Re: First Post
« Reply #4 on: May 1st, 2007, 3:32pm » |
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Welcome to the board and I do agree with Chris on the importance of getting the right diagnosis! That being said, try oxygen! You'll hear it a lot on the board because it's proven so effective for so many and the side effects are almost nil. Oral meds don't really do much for us since the headaches ramp up and down so fast. I tried the nasal spray imitrex and they didn't help me, the injectable imitrex are like magic for me.
For the oxygen to work you need to breathe pure oxygen. It requires a high flow regulator, up to 15 LPM and a no re breather type mask. One that doesn't mix the outside air with the 02. Nasal canulas..(spelling?) are worthless for us.
Lots of good info on the board, get thee to a neuro and confirm the diagnosis. We give lots of helpful tips here but there are only a few doctors on the board and even they won't give you a diagnosis wothout seeing you!!
Hoping you find relief soon.
Guiseppi
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REDog
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Re: First Post
« Reply #5 on: May 1st, 2007, 3:37pm » |
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Thanks for all of the fast replies! I took the quiz a while back, and then again right after reading the post by Chris. Lot's more "yes" answers at the end of the page than the first. The light sensitivity and being able to lay down motionless is probably not so typical of CH sufferers. The only "no" answers in 9-16 were regarding not being awakened from a sound sleep, but I think that's more because I usually don't have them at night. In the instances that I have had them at night (that I'm aware of) I will wake up from a dream about some sort of head trauma!
I also answered "no" to the stuffy nostril - I have noticed it occasionally, but more of a minor side effect, than something that I really associate with it. Also "no" to the thrashing and pacing - but that's part of what makes me think my attacks may not be as bad as some...
Anyhow - would the cycles of having these on a daily basis - with a relatively short headache, be consistent with Migraines? I always thought that Migraines were more random and lasted for hours on end...
Thanks again for the replies!
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| « Last Edit: May 1st, 2007, 3:39pm by REDog » |
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ClusterChris
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Re: First Post
« Reply #6 on: May 1st, 2007, 4:09pm » |
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Again I'm no doctor but, My mother suffered from migraines for years, she would have it for about two or three days off and on , nausea, sensitivity to light and noise, those are a couple of the main factors other then the pain intesity that seperate the two. Hard to say though, I would recommend finding a nerologist that is recommended on this board that is in your area!
Best wishes
Chris
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Guiseppi
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Re: First Post
« Reply #7 on: May 1st, 2007, 4:48pm » |
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To further confuse you!!!!
For the first 20 plus years I NEVER had a night time wake up hit. Those have only started in the last several years. I don't get a stuffy nostril, I just get a runny nose. I have never beat my head against the floor or the walls. If you watch Artonios video, I'm more one of those who wraps my arms around my head and pulses both legs like I'm running in place in the fetal position.
While I am not "sensitive" to light when I'm getting hit, I don't like bright lighting. It doesn't make my headache hurt more it just makes me very very angry on a deep level...(make sense??)
Like I said before, I'm not a doctor. The shorter duration and the cyclic nature point towards ch. There are just so many variables it's always a safer bet to eliminate everything else. If the oxygen works wonders.....you're probably looking in the right direction. Good luck to you!
Guiseppi
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ClusterChuck
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Re: First Post
« Reply #8 on: May 1st, 2007, 6:10pm » |
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Welome to the nut house best place to be for clusterheads!
Oxygen; attitude; oxygen; attitude; oxygen; attitude; oxygen; attitude; oxygen; attitude; oxygen; attitude
Do you get the drift of my thoughts? LOL
Both are HUGE aspects for sucessfully dealing with the beast. It is what keeps us anywhere near sane ... (although many here are VERY far from sane .. myself, being at the top of that insane list)
Good luck, and welcome aboard!
Chuck
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aubmari
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Re: First Post
« Reply #9 on: May 1st, 2007, 6:30pm » |
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Welcome REDog! 
I actually get both CH's and Migraines.
My Migraines I started getting at age 6 and for me at least it is a gradual worsening of the pain until eventually I cant move with out vomitting due to the pain and usually last from 4-24 hours depending on if I can catch it in time.
My Ch's are not like this at all. I dont have the stuffiness in my nostril and it isn't really runny but it feels like someone shoved a hot poker in it.
They wake me up at night and usually last 15-45 minutes and continue off and on like this for about 3-5 hours in the night. I think because everybody has different symptoms it isn't easy to say what it is w/o a diagnosis.
Have you seen a neurologist re: this?
Hope everything gets better for you.
Aubmari
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Life is too short for drama & petty things, so kiss slowly, laugh insanely, Love deeply and forgive quickly.
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REDog
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Re: First Post
« Reply #10 on: May 2nd, 2007, 11:34am » |
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You guys have given me a lot to think about. I think I will go to my family doctor and see if we can start on the path of seeing a neurologist to eliminate anything else...
I had another headache last night. A little rare in that it was the second one of the day. We're out of town now, and I was outside walking around the resort - so I was a good way away from our room. I did notice the runny nostril deal on that side... I think it may be a lot less obvious to me on a normal basis because I'm usually laying down. Anyway, the sensitivity to light thing is absolutely for real... I walked half way around the building to keep from going through the lobby with it's bright lights! The only thing that killed me outside were the street lights...
The only other unusual thing was that the pain in my neck and a very mild head pain... probably what I see called "shadows" here... has stuck with me pretty much all night. Nothing I couldn't sleep through, but definitely different than I have experienced in the past...
Thanks again to all of you for all of your suggestions and ideas!
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| « Last Edit: May 2nd, 2007, 11:35am by REDog » |
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REDog
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Re: First Post
« Reply #11 on: May 2nd, 2007, 11:51am » |
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on May 1st, 2007, 4:09pm, ClusterChris wrote:| Hard to say though, I would recommend finding a nerologist that is recommended on this board that is in your area! |
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Is there a special section here on the board for Dr. recommendations? Or does anyone have a recommendation for the Columbia, SC area?
Thanks!
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Rosybabe
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Re: First Post
« Reply #12 on: May 2nd, 2007, 5:32pm » |
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click in the O.U.C.H. link, there is good information there and a list of doctors in any area in the US.
Good Luck and hope you find relief soon!!
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Linda_Howell
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Re: First Post
« Reply #13 on: May 2nd, 2007, 6:34pm » |
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Here ya go. Hope it helps. You'll have to look up addresses and phone numbers though.
http://www.ouch-us.org/chgeneral/doctors.htm
Linda
P.S. just curious. Have you ever been on here before and posted as water dog?
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REDog
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Re: First Post
« Reply #14 on: May 4th, 2007, 9:53am » |
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Thanks for the link Linda! No, I've never registered here before...
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