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mic977
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New to site and need help
« on: Aug 6th, 2007, 8:18pm » |
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I just found this site today and hope someone has some answers for me. I have had CH for the last 6 years which the last 3 under my doctors care. For the last 3 years the only treatment I have received is Imitrex pills and spray, Prednisone 10MG, Oxycodone w/APAP 5/325 & Hydromorphone 2MG. None has helped not even the Dilaudid which is a powerful pain pill. I took one pill at the very start of the CH and the pain lasted over one hour. Thirty minutes later I got another CH. On other days after taking a pain pill the CH goes away within 30 minutes. I am not sure if the pill worked or the CH just stopped on its own. I am on my 5th week now and am out of meds because my insurance company won't let me re-new my prescription for Imitrex any earlier the 30 days after my last refill. The pain pill are written with no refills. I have an appointment Aug 8th with a Neurologist and one with Johns Hopkins in Oct. What can I tell the doctors so they understand that the treatment I am on is not working and need something that will. I am at the end of my rope and don't know what else to do. I talked to my primary doctor (who I will never go back to) about using Oxygen and other treatments I have found on the internet. All she did was write me a prescription for the same meds. Any help and advise would be greatly appreciated.
MIC977
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rolo65
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Re: New to site and need help
« Reply #1 on: Aug 6th, 2007, 8:25pm » |
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on Aug 6th, 2007, 8:18pm, mic977 wrote:| I am at the end of my rope and don't know what else to do. |
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That sounds like a GP guessing  , what a world we CH'ers live in where you can't find a neuro worth a shit. It's happened to all of us I’m sure!
Tell your doc to get you some oxygen (fast), and read read search search this site bro!
Rolo.
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| « Last Edit: Aug 6th, 2007, 8:35pm by rolo65 » |
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Kevin_M
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Re: New to site and need help
« Reply #2 on: Aug 6th, 2007, 9:31pm » |
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on Aug 6th, 2007, 8:18pm, mic977 wrote:I have an appointment Aug 8th with a Neurologist
What can I tell the doctors so they understand that the treatment I am on is not working and need something that will. |
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Agree with the oxygen but a preventive med is important and I don't see any used yet. Also, get a doc more familiar with clusters than you've previously had and relay the seriousness of the pain.
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| « Last Edit: Aug 6th, 2007, 9:55pm by Kevin_M » |
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Guiseppi
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Re: New to site and need help
« Reply #3 on: Aug 6th, 2007, 11:07pm » |
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Go to your doctor with a two pronged attack approach in mind. Accept that there is no pill that will make the headaches stop. The hydrocodone may even be aggravating it, the beast doesn't like narcotics.
First you need a preventative. That's a med you take to reduce the frequency and the severity of your headaches. The most popular/common on the board are verapamil, topomax, and to a lesser degree, and my favorite, lithium. These meds are used to reduce the number of times you get hit, and how hard it hits you.
Then you need an abortive, that's when you feel that headache start, when you get the oh sh#@ here it comes feeling. Most of us use oxygen as a first line abort, it will stop a headache in its tracks in less then 8 mnutes for me most of the time, to use oxygen:
Must be started at the first hint of a headache.
You must breathe pure oxygen, no outside air no re breathed air, out of a NON Re Breather mask, at a high flow rate, up to 15 litres per minute. If you get outside air or rebreathe your own air it doesn't work. So if they suggest the nasal canulas it's a big NO!
Other abortives are imitrex injections, effective but very expensive, imitrex nasal sprays, didn't work for me but have for many others. zomig nasal spray, I've never tried it but seen numerous positive posts on it.
The problem with pills is these headaches ramp up faster then your body can absorb the meds, that's why the nasal sprays, inhaled oxygen and injectables are so popular.
Try and find a neuro fam iliar with CH. Going to a GP is a crap shoot at best as very few of them know anything about it. Stick around here and educate yourself, we will do anything we can to help you.
Guiseppi
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mic977
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Re: New to site and need help
« Reply #4 on: Aug 6th, 2007, 11:17pm » |
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on Aug 6th, 2007, 9:31pm, Kevin_M wrote:
Agree with the oxygen but a preventive med is important and I don't see any used yet. Also, get a doc more familiar with clusters than you've previously had and relay the seriousness of the pain. |
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What are some good preventive meds?
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mic977
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Re: New to site and need help
« Reply #5 on: Aug 6th, 2007, 11:23pm » |
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on Aug 6th, 2007, 11:07pm, Guiseppi wrote:Go to your doctor with a two pronged attack approach in mind. Accept that there is no pill that will make the headaches stop. The hydrocodone may even be aggravating it, the beast doesn't like narcotics.
First you need a preventative. That's a med you take to reduce the frequency and the severity of your headaches. The most popular/common on the board are verapamil, topomax, and to a lesser degree, and my favorite, lithium. These meds are used to reduce the number of times you get hit, and how hard it hits you.
Then you need an abortive, that's when you feel that headache start, when you get the oh sh#@ here it comes feeling. Most of us use oxygen as a first line abort, it will stop a headache in its tracks in less then 8 mnutes for me most of the time, to use oxygen:
Must be started at the first hint of a headache.
You must breathe pure oxygen, no outside air no re breathed air, out of a NON Re Breather mask, at a high flow rate, up to 15 litres per minute. If you get outside air or rebreathe your own air it doesn't work. So if they suggest the nasal canulas it's a big NO!
Other abortives are imitrex injections, effective but very expensive, imitrex nasal sprays, didn't work for me but have for many others. zomig nasal spray, I've never tried it but seen numerous positive posts on it.
The problem with pills is these headaches ramp up faster then your body can absorb the meds, that's why the nasal sprays, inhaled oxygen and injectables are so popular.
Try and find a neuro fam iliar with CH. Going to a GP is a crap shoot at best as very few of them know anything about it. Stick around here and educate yourself, we will do anything we can to help you.
Guiseppi |
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Thank you for the important information. I will take it with me to the Neuro in 2 days. I have already bookmarked this site at home and work. Just reading some of the answers to my posting has helped. At least I know I have somewhere to go for help. Up till now I thought I was alone. Thanks again.
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sandie99
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Re: New to site and need help
« Reply #6 on: Aug 7th, 2007, 2:56am » |
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Mic,
welcome aboard! 
I see that you've got lots of info already.
My advice: learn as much as you can. The more you know yourself about ch, the better. During my "devil years" I've met several GPs and neuros and to be honest - average ch.com visitor does know more about ch than some of them... So arms yourself with knowledge about the beast and the available treatments and medications. Then you know yourself what YOU want.
One of the things I have learned is that I can have a say in my own treatment; the docs and neuros know what they know and I know how my body reacts to meds. So if you think that something they suggest will not agree with your head, you can say no. It's not the docs who will pop those pills or take the injections or whatever. It's you.
PF days to us all,
Sanna
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| « Last Edit: Aug 7th, 2007, 2:57am by sandie99 » |
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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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Kevin_M
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Re: New to site and need help
« Reply #7 on: Aug 7th, 2007, 7:26am » |
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on Aug 6th, 2007, 11:17pm, mic977 wrote:| What are some good preventive meds? |
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The middle of this page has a list, the right level of one or more may help.
http://www.ouch-us.org/medications/medications.htm
verapamil has helped for me.
There are other options to explore I'm less familiar with.
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cathip
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Re: New to site and need help
« Reply #8 on: Aug 7th, 2007, 7:45am » |
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Mic, I am sorry the beast is a part of your life, but since he is, you have found the right place! Tons of experience here, and an equal amount of support and encouragement to get through daily!
You've gotten great advice from Guiseppi and Kevin. All I can really add to that, is take info that you have printed off here to your next appt.
We'll be looking forward to hearing about your Dr visit!
BE PF!
Cathi
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BarbaraD
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Re: New to site and need help
« Reply #9 on: Aug 7th, 2007, 9:06am » |
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Everything they said above -- and another thing -- RED BULL at the first sign of a hit. Chug-a-lug a can of that -
CH does NOT like narcs... they don't work on CH. If a doc gives you a script for them - RUN!
And INTERVIEW your doc (and neuro). Find out what they know about CH and what they propose to do about treating them - how many patients they've treated with CH. If they get beligerent about your questions - FIND A NEW DOC!
Topamax works great for me at preventing them (most of the time) and I keep Cafergot (ergotomine) handy for when I have a breakthru. (Cafergot comes in pills and suppositories - the supp work faster but if you get them make sure they're the cafergot PB).
Let us know how your neuro appt goes.
Hugs BD
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