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oceangirl
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Hi newbie here
« on: Nov 16th, 2007, 2:44pm » |
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Hi everyone. My name is Jennifer and I have been suffering from headaches for 3 years. I have seen neurologists and sinus doctors. When I get a headache I have a sharp terrible pain behind my right eye, that is how it starts. Then it is in my forehead and the top of my head. My right nostril runs and my right eye runs. I have had cat scans, spinal taps, sinus scans everything they can think of. I have had some doctors tell me that it is a migraine. I know it isn't because I don't have nausea or sensitivity to light or sound. I feel like no one wants to listen to what I have to say. The only thing that seems to work for me are prescrition pain killers. I have been on Inderal, Imitrex, Verapimil, topomax, and all those types of meds. It is terrible when your doctor doesn't want to listen to what works for you and help you. Instead they think you are a drug seeker. Believe me if I didn't have to take it I wouldn't. I am tired of emergency room visits. Not having insurance is even worse. I recently went to a family doctor that is trying to work with me. He prescribed the oxygen for me. It seemed to work for 2 nights and lately it hasn't. I usually get a headache every day. They seem to start after 8 at night. I am not sure what to do anymore. I am tired of rocking, banging my head, pressing my hands on my head feeling like I am gonna crush my skull. It seems that the doctors I have found just don't think that a person could be in such pain. They seem like I am making it up. Believe me I would trade with them in a heartbeat to let them feel my pain. Thanks for listening.
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ski2k
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Re: Hi newbie here
« Reply #1 on: Nov 16th, 2007, 4:22pm » |
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Hey there, Jennifer! Welcome!
Try taking the cluster quiz (link on the left side of the board). That may give you something to bring up with your doctor. Have you been oficially diagnosed as having CH?
Also... Can you give us any details on your O2 use? How much are you using (how many liters per minute), and how are you using it (mask, nasal canules, etc..)? Oxygen is really only effective if it's used correctly.
How many mg of the Verapamil and Topomax have you been on? Together or seperate? Have you tried Imitrex injections?
There's a LOT of info on this site, so kick back, and read as much as you can!
Best wishes,
Adam
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Guiseppi
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Re: Hi newbie here
« Reply #2 on: Nov 16th, 2007, 4:41pm » |
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Your frustration comes through loud and clear, most of us have been there a time or two. The trick to living with this stuff is accepting you can't cure them, but with some effort can manage them.
You need to work towards finding a good preventative medication. I use lithium, the other common ones are verapamil and topomax. Most doctors start the verapamil way too low to be effective, that's why Ski was inquiring about dosage levels. The idea of a preventative medication is it stays in your sytem and reduces how often you get hit and will help reduce the pain level.
Then you need an abortive regimen. That's when your head starts hurting and you want it to stop. Your first line abortive should be oxygen. Started at the first sign of a hit I can be pain free in less then 10 minutes. It must be pure oxygen you breathe, using a non re breather mask at a high flow rate.
Another good abortives- is imitrex injectables, unfortunately very expensive. For now try chugging an energy drink, Monster, Rock Star, any containing the combo of taurine and caffeine. Many can abort a hit using just that. Even strong coffee can help lessen the pain and the length of the hit.
Stay away from the narcotic pain killers, they barely touch the pain and cause you far more rebound headaches and other issues then they will ever solve for you. Wishing you a short cycle.
Guiseppi
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oceangirl
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I love YaBB 1G - SP1!
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Re: Hi newbie here
« Reply #3 on: Nov 16th, 2007, 4:42pm » |
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I can't remember the dosage of the topomax and verapimil it was about a year and a half ago. I remember that I increase dosage to the max dosage over a couple weeks time. I tried using them seperately. Imitrex makes me very sick so I can't use that. My doctor does believe I have cluster headaches. The oxygen I use is 10 ml for 10-15 minutes with the mask. So it is just very frustrating. Wish they would just go away and stay away. I spend my days worrying when the next one is coming and what I will do.
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ski2k
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Re: Hi newbie here
« Reply #4 on: Nov 16th, 2007, 5:08pm » |
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Easier said than done, but stop worrying about when the next one will come! Take advantage of the pain free time when you have it!
Consider talking to your doctor about getting your O2 prescription upped to 15 lpm-20 lpm. 10 is a little on the low side to help most of us out. You want it flowing fast enough that you can just breathe pure oxygen, and NO outside air, including what you exhale. This may help get the O2 working for you again!
Lithium is another less commonly used preventative. You may consider asking your doc about trying it. Personally I have no experience with it, and don't know the risks involved, but thought I'd throw it out there as an option. I know Guiseppi swears by it!
Energy drinks with Taurine and caffeine might also be worth a try, as well as strong coffee. I've found slamming down an E-drink at the first sign of a hit, can knock it right out! They're fairly inexpensive, readily available, and just might help, so give it a try! 
Hope some of this helps, and you find relief soon!!
Adam
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Guiseppi
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Re: Hi newbie here
« Reply #5 on: Nov 16th, 2007, 5:55pm » |
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As I said my primary preventative is lithium. I'm male, 47, weigh about 190 pounds. I take 1200 mg a day of lithium while on cycle. If I avoid all of my triggers, alcohol, sleep deprivation, sustained stress, extreme hunger, I can block about 90% of my headaches using just lithium. The only side effects I've experinced from the lithium is a little lethargy the first week or two and you pee a lot the first 2 weeks. It's inexpensive so a great alternative to those without insurance.
I use oxygen to abort the majority of the break thru head aches. Like Ski said, the key to oxygen working is you have to get pure 02 into your lungs. No outside air and you can't re breathe anything you've exhaled. So nasal canulas, re breather masks, all bad!!!!!
Guiseppi
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