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CJohnson
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10 years episodic, first post
« on: Mar 12th, 2003, 9:38am » |
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Hello, I have been getting CH every fall/winter for 10 years. They last around 6 weeks. My headaches are pretty typical of CH sufferers. I have never met, let alone shared my experiences, with someone who suffered from CH. So I am going to vent right now because it feels good to do it. So please forgive me if I am long winded.
I have been to neurologists. I have had CAT scans of my brain, my sinuses, and my neck. Nothing abnormal.
I have "managed" my headaches in the following manner:
When I wake up with one coming on (every night during a cycle) I get out of bed and go for a run. I run and run until the pain goes away. Usually this takes 10 minutes. 10% of the time it doesn't work and I just ride it out. Normally I wake up once or twice per night, however, some nights it lasts all night long. I'll wake up, fight one off, start to drift back to sleep and 5 minutes later, here comes another one.
For the first couple of years I just rode them out. It seems like they weren't so bad as they are now. The third year it was totally different. I finally went to a neurologist.
The first prescription I took, 7 or 8 years ago, was Stadol NS. This was good at first, but the thought of it makes my nauseous now. It got me through a cycle, though.
The next few years I discovered that running would abort an attack, so I never went to a doctor or took any medicine. Whenever I would feel one starting (sometimes during the day), no matter where I was or what I was doing, I would go outside and just take off running.
2 years ago I decided to see a doctor, and she prescribed Maxalt. I would take one before bed or before a social gathering. Between that and running it was good enough.
This cycle, which I am currently in, I felt one coming on and put on my shoes and went outside to run. Unfortunately, I managed to step in a hole and severely sprain my ankle. Oh No! Now what can I do? I can hardly walk with crutches let alone run . I get way too many headaches during a cycle to manage them all with Maxalt. I sometimes get 8 in one day. Sunday night I was out of maxalt and had one of my "all-nighters". Monday morning I went to my doctor and asked for another Maxalt prescription. He said he could not legally write me another prescription because I was taking too many. He suggested I see a neurologist. After spending the morning on the phone trying to find someone who could see me immediately I found one. She seemed to be pretty familiar with CH and prescribed Amerge and Fioricet and oxygen.
My insurance will not cover the oxygen unless my saturation level is lower than 88%. I am a healthy 30 yr old man who has done a good deal of running My saturation level is not lower than 88%
The good news, however, is that in the past 2 days, I have taken an Amerge and a Fioricet in the morning and one each before bed and have not seen a sign of a headache. I am 2 weeks into this cycle, and this has never happened before. I also bought a nasal spray "thingee" and periodically spray my right nostril with cold water. (Thanks for the tip!)
Incidentally, the anti inflammatories and the vicodin I was given for the ankle sprain do not affect CH. Also as much as my ankle was hurting, while I was in the bathroom rocking back and forth during an episode, I was twisting my ankle with my hand hoping that the ankle pain would take my mind off of the CH pain. No dice. Also, I am a smoker, but have not smoked during these past 2 days. The following is a list of what I have done these past 2 pain free days:
1. Amerge and Fioricet in the morning and before bed
2. Every few hours spray cold water into my right nostril
3. Not smoking
4. Drinking more water, less coffee
5. Chili dogs for dinner (probably not a factor, but deliscious nonetheless)
6. Have NOT jogged or done any vigorous exercise.
I feel so much better now. Thanks
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Roxy
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Re: 10 years episodic, first post
« Reply #1 on: Mar 12th, 2003, 10:47am » |
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Welcome CJohnson....and feel free to vent away. Glad you found this site after dealing with these for so long.
Sounds like you have a handle on the beast, at least until you can get back to running. Exercise does help some people abort them, and then it works as a trigger on some.
You should look into welding 02, which is what some people use. 02 really does rule in helping with these. Also, see if your dr. will give you imitex. That and 02 will usually take care of anything the beast will throw at you.
Take care...hoping you stay PF,
Tracey
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BruceD
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Re: 10 years episodic, first post
« Reply #2 on: Mar 12th, 2003, 11:57am » |
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Howdy CJohnson and welcome. I would really recommend the O2. It has worked wonderfully for me.
I would have to guess that it will work for you. Although I'm not a doc, I understand that the increased O2 will cause your vessels to clamp down in the brain. I would guess that the running does a similar thing where your muscles receive increased O2 and because of the quicker respirations (and increased O2) the vessels in the brain contract. Besides, it is certainly worth a try.
My doc prescribed it and I got a 15 lpm regulator with non-rebreather mask. I hit the O2 hard when a HA wakes me and leave it on 15 until it starts to subside. Then as I start breathing slower I turn down the flow to conserve the O2. Every time I've used it, it has killed my HA within 15 minutes - it's really amazing stuff.
Take care
BruceD
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CJohnson
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Re: 10 years episodic, first post
« Reply #3 on: Mar 12th, 2003, 12:01pm » |
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My insurance (Aetna PPO) will not cover the oxygen because my saturation level is too high. How much is it without insurance? I would love to try it.
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BruceD
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Re: 10 years episodic, first post
« Reply #4 on: Mar 12th, 2003, 12:16pm » |
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I'm not really sure as to costs and if your state requires a script. Jonny is the O2 man here so perhaps he can chime in and let you know. I do know that many people use welder's O2, but the key here is the non-rebreather mask. To be effective you need 100% O2.
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brain_cramps
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Re: 10 years episodic, first post
« Reply #5 on: Mar 12th, 2003, 12:31pm » |
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on Mar 12th, 2003, 9:38am, CJohnson wrote:The following is a list of what I have done these past 2 pain free days:
1. Amerge and Fioricet in the morning and before bed
2. Every few hours spray cold water into my right nostril
3. Not smoking
4. Drinking more water, less coffee
5. Chili dogs for dinner (probably not a factor, but deliscious nonetheless)
6. Have NOT jogged or done any vigorous exercise.
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Hi
I've been 'managing' these without meds for more than 5 years now. Luckily I have very short cycles. The reason I am posting is a couple of the things you mentioned have also helped me. In addition to not smoking and substituting water for coffee, you might try a couple other things.
- ABSOLUTELY avoid alcohol!!!
- try sleeping in an upright position (ie. recliner) or with your head elevated at least a bit (ie. LOTS of pillows). This seems to keep the blood pressure down in my head.
- get as much fresh air as possible. While in cycle, I sleep with the window open regardless of the temperature. Fortunately my cycles are usually in the spring and fall, but it can still be COLD.
- don't skip meals EVER.
- try to avoid BIG meals. A lot of people mention getting hit after a big meal. I try to eat a LOT of small meals all day long. (ie soup, an hour later a sandwich or two, an hour later more soup, etc...)
- if you don't have oxygen, what occasionally works for me is hanging my head out the window of the car while SOMEONE ELSE is driving, preferably down a highway or freeway.
Some of these may or may not work for you, but they seem to help me.
Just my 2 cents worth,
grant
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CJohnson
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Re: 10 years episodic, first post
« Reply #6 on: Mar 12th, 2003, 1:05pm » |
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Thanks for the advice! I have been skipping meals lately. I certainly will not do that anymore.
-Curtis
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Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
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cootie
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Re: 10 years episodic, first post
« Reply #7 on: Mar 12th, 2003, 1:21pm » |
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Hi CJ.......jus wanted to say Hello to ya....Pam-Coots-hi-ya'll-greeter
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ZAIRA
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Re: 10 years episodic, first post
« Reply #8 on: Mar 12th, 2003, 3:31pm » |
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Welcome home CJ, you are in the right place!
Good Luck from Italy, Zaira 
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Ueli
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Re: 10 years episodic, first post
« Reply #9 on: Mar 12th, 2003, 4:10pm » |
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Hi Curtis,
The insurance talking about blood saturation level is complete BS. Remember, for a doctor that committed some serious blunder there are only two choices left: Pharma company rep or "medical expert" at an insurance company. The only use of oxygen they know is for those with respiratory disease, and there a check on saturation makes sense. But we use the oxygen treatment in a different way (the word "therapy" implies a long term application, to improve, be example, on the saturation level). For us oxygen is to treat an acute emergency, a cluster attack. Bombard your insurance with facts, by example those from the excellent compilation of Mr.Happy at http://www.drfeller.com/ch/o2ch.html. It might also be helpful to mention the fact that a single Imitrex injection saved pays for a month supply of oxygen.
Try to talk your new doctor into prescribing Verapamil as a preventative.
Stop smoking might be a good thing in general (Charlie, your call ), but will not influence CH.
For many, coffee belongs to the first line of defence against CH. Your reduced coffee intake will be compensated by the caffeine in Fioricet, . The Fioricet might help against shadows, but will do nothing to prevent or abort CH attacks.
Sorry about your ankle. But in the meantime you could exercise lifting dumb bells sitting on a chair.
PFNADs
Ueli
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