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Topic: Baltimore/Maryland PLEASE help (Read 417 times) |
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Jumjum15
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Baltimore/Maryland PLEASE help
« on: Mar 22nd, 2004, 8:36pm » |
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I couldn't contact anyone through the location list due to email idiocy, so here goes.
We are in desperate need of an understanding primary care provider. We have to have a referral to go to a nerologist, and we had a horrible experience today.
My husband is in the worst wave he's had in about a year. I don't really call them cycles, because he rarely goes more than a week without a ch, but there are long stretches where it's only one or two a night, usually for a few weeks.
We switched insurance and went to a new PCP today, who basically treated my husband like he was a drug addict, or just making stuff up. She told him to take tylenol as an abortive.
Yes, I said Tylenol.
Needless to say, we'll be getting another doctor. I still feel like punching her just thinking about it.
He's been through prednisone, imitrex and lithium, all with little or no effect.
Basically, I am looking for suggestions for doctors in the Baltimore /Maryland area who will be sympathetic to his needs. Thank you so much for your help.
Oh, and we have no problem with opiates. You gotta sleep sometime, right?
-Ella
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Superpain
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GOT O2!?
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Re: Baltimore/Maryland PLEASE help
« Reply #1 on: Mar 22nd, 2004, 9:15pm » |
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Have you tried Oxygen?
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Chris
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Jumjum15
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Re: Baltimore/Maryland PLEASE help
« Reply #2 on: Mar 22nd, 2004, 9:53pm » |
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He has found some releif with that, but he travels a great deal for work.
Right now, however, our main problem is finding a doctor who doesn't think he's just there for drugs. No doctor, no o2 presciption. 
I gotta add, it's so nice not to have to explain everything to you guys. I'm sure we're not the only ones who've had a doctor act like the headaches were his fault somehow.
Yay. Thanks.
-Ella
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Lobster
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Re: Baltimore/Maryland PLEASE help
« Reply #3 on: Mar 22nd, 2004, 10:50pm » |
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To hear that pred and imitrex had no effect is curious... both are brutally effective against CH's. Thus I hate to be the idiot and ask the question... are you sure they are CH's?
Go over to the 'OUCH website link'. Under 'Cluster Help', follow 'Recommended Doctors'. There is a Baltimore one listed.
Good luck!
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Superpain
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Re: Baltimore/Maryland PLEASE help
« Reply #4 on: Mar 23rd, 2004, 1:05am » |
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Ella, he can use welding O2 just as effectively as medical O2 and it is much cheaper. It's technically illegal to transport welding tanks in an enclosed car, but I would in a heartbeat!
As far as the tylenol remark... I would go ballistic! I'm afraid I would have to attack her!
But after re reading your description of the "cycle" or lack thereof, and lack of effectiveness of those drugs, are you sure it's ch?
And believe me, if it is ch, opiates will do absolutely nothing, except take the edge off the pain. They do nothing to stop or prevent a ch, and they do nothing to keep it from still being the worse pain imaginable. But they will make you throw up, and as we who have done that during a ch know, that is nooooo fun at all! Without a headache opiates might make him sleep... They curiously have the opposite effect on me... But if a ch comes, nothing short of being in a coma or dead is going to keep you asleep.
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Chris
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Jumjum15
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Re: Baltimore/Maryland PLEASE help
« Reply #5 on: Mar 23rd, 2004, 12:36pm » |
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Thanks for your input. Yes, they are most definitely clusters. Eye droop, duration, etc.
Good lord.
With the lithium, it didn't affect the ch, and it made him fat and shaky.
Because of his job, he must be very alert, as he is responsible for the actions and safety of a great many people.
With prednisone, it helped for the 6 weeks he was on it, but he was violently angry the whole time. He's not willing to live his life like that, either.
He's reluctant to keep an o2 tank in the house. We have a very small house, and he's concerned about combustion.
Our main thing is finding a DR. who will give him a referral. He was very clear with the wh*re from yesterday, and she was antagonistic from the first sentence that came out of her mouth.
Last night, I gave him 1Dramamine and 2valerian (Alluna Sleep). He slept through the night. Even if it doesn't work again, sometimes one good night of sleep helps the wave start to ebb. He said he woke up in the middle of the night with a headache, and went downstairs to take something, but was so bombed out that he just laid down on the couch and went back to sleep.
For us, it's more about helping him sleep than pain mngmnt, just because almost nothing "manages" the pain.
Oh, the imitrex totally didn't work for him. Don't forget, everyone's different.
-Ella
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ave
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Re: Baltimore/Maryland PLEASE help
« Reply #6 on: Mar 23rd, 2004, 2:08pm » |
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Don't be afraid for combustion. Most of what you hear about that are just scare stories.
I live in a downstairs apartment and the Oxy people came and deposited 5 very large tanks and 3 so called portable tanks without blinking an eyelid.
Just take care the room is ventilated, so the oxy does not soak into stuff. Don't let the bottle run without somebody to inhale, and if after 10 minutes there's no improvement, just stop.
Also, Verapamil is a pretty good preventative but yiou must start low and dose up slowly. It takes 4-8 days to kick in. Some chronics get relief from the lithium/verapamil combo.
O, and don't light cigs while you are sucking O2.
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5-string
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Re: Baltimore/Maryland PLEASE help
« Reply #7 on: Mar 23rd, 2004, 6:59pm » |
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Hey Ella,
I live in the Oella/Catonsville area.(The west side in Baltimore county) I just read your post.
I've got a TOP NOTCH neurologist who knows what clusters are. I think she was sent from heaven.(what I did to deserve metting her I'll never know  )
She's in Columbia,Md.(across from howard county general hospital on 175.) I'll send her name and office number to your mailbox.
She was able to scare the beast away from me enough to go back to work.
Good luck.
...Mark..
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Charlie
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Re: Baltimore/Maryland PLEASE help
« Reply #8 on: Mar 24th, 2004, 3:20pm » |
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I know how frustrating this is. Ave is right that O2 isn't dangerous. It's a benign gas necessary for life and not combustible. You need fuel and flame for that we aren't stupid. Welding O2 is just as good, just as safe, and cheaper. It's the same thing and probably purer than what you breathe standing on your doorstep.
Here is a link to a letter by a UK sufferer that does a wonderful job explaining that this horror has nothing to do with what is thought of what is thought of as a headache. A good thing for your doctor as well:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Here is a link to a technique that worked well for me:
http://www.netsync.net/~charlies/
If you look around you'll find some good ideas and ways to deal with these attacks.
Let us know how you're doing.
Charlie
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Jumjum15
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Re: Baltimore/Maryland PLEASE help
« Reply #9 on: Mar 27th, 2004, 2:44pm » |
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Just wanted to update everyone. My husband had abt 40 hours without headaches, and since then he's had only one or two a day, which is completely managable to him, considering what it's like sometimes. I, however, wake up everytime he moves in the night becasue I'm shellshocked from his headaches. I'm going to the supporters board, but I wanted to thank everyone who had some input and advice. Ta ta!
-Ella
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ghostwriter
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Re: Baltimore/Maryland PLEASE help
« Reply #10 on: Mar 27th, 2004, 6:41pm » |
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I have been having cluster headaches since my mid-teens, I am 33 now and I think I have found the most effective way of aborting an attack. Personally I would rather work on preventing them but I dont have the luxury of medical insurance so I am unable to see any doctors or take medications (which I couldn't afford). So here's my poor-mans remedy... ICE. Sounds simple and it is. Whenever I feel an episode building I run to my freezer and take out my gel icepack and keep it pressed to my head. Usually this, if done in time can abort an attack. If it doesnt, then I just suffer through it. Thankfully, the majority of my attacks last about thirty minutes until the end of the cycles, then I am in for an hour or two... ouch.
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CP774
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Re: Baltimore/Maryland PLEASE help
« Reply #11 on: Mar 29th, 2004, 2:49pm » |
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Hi - understand your pain - I go to MD primary care in Annapolis, Dr. Riebman, he is real good he has a best friend (golf pal) who suffers w/migraines. He is current on all the latest. My neuro is Schilder in Annapolis he is the best and never gives up trying to help.
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Jumjum15
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Re: Baltimore/Maryland PLEASE help
« Reply #12 on: Apr 9th, 2004, 10:59pm » |
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We finally found an awesome doctor, regular PCP. Not only did the RECEPTIONIST know what a CH was, and she was very sympathetic, but the DR does reasearch on all types of headaches, ch included.
I'm so happy I can't stand it!
Hubby can't see him until May 3, but what's another month when he's gone this long.
Yayayayayayayayay!
Ta ta.
-Ella
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