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chrisv
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Damn Doctors
« on: Jun 15th, 2004, 12:34pm » |
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I have been suffering from clusters for the past 14yrs. I have been through more meds and been mistreated for this the whole time. Drs always tend to think that it is just allergies, or a sinus infection. I have taken all the meds in the world and nothing helps. I have explained all the symtoms to my Drs(one sided eye exploding pain, runs through my eye, jaw, teeth,ear, nasal passage shutson the side of the pain.) I think they think I am some sort of drug addict and just prescribe pain killers. Nothing works, its like they just ignore what i am telling them. I look at all the web sites and see that just breathing oxygen can help, and not leave me f*#d up for the rest of the day. My cycle started about two weeks ago, been sent to have a CAT for the second time, finally see a neurologist tommorow, god i hope he listens. New to the internet and just glad to see that others know just how bad it is, that strangely has provided some relief its good to know that I am not alone. Any advise on what i should tell my neuro tommorow to get the point across, i dont know what I'll do if he dosent listen. I've broken bones(broke my hand once trying to override the pain) and even had a collapsed lung, nothing compares to the pain. God it feels like im going crazy sometimes. Waiting for the cycle to end.
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Superpain
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Re: Damn Doctors
« Reply #3 on: Jun 15th, 2004, 3:59pm » |
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If your blood pressure is good and you don't have allergies or anything ask him for a prednisone taper while starting verapamil as preventatives.
And under no circumstances leave that office without a script for O2 with a regulator that can hit 15 lpm.
I'd seriously press him for a script for imitrex shots too! If you're really good you can get him to come off a couple of his sample packs! 
Being informed is your best weapon!!!!
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Chris
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Bob P
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Re: Damn Doctors
« Reply #4 on: Jun 15th, 2004, 5:37pm » |
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Yep. Say:
Hi doc. I suffer from episodic cluster headaches. I'd like you to prescribe O2 at 10-12 liters per minute for 10-15 minutes via a non-rebreather mask. I'd like you to prescribe verapamil at 240mg/day to be increased by 120 mg/day every three days until the headches stop, I get to 960 mg/day, or side effects set in. I'd like you to prescribe imitrex injections and write a letter of necessity for my insurance telling them I need 60 injections/month.
Thanks doc.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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BlueMeanie
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on Jun 15th, 2004, 5:37pm, Bob P wrote:Yep. Say:
Hi doc. I suffer from episodic cluster headaches. I'd like you to prescribe O2 at 10-12 liters per minute for 10-15 minutes via a non-rebreather mask. I'd like you to prescribe verapamil at 240mg/day to be increased by 120 mg/day every three days until the headches stop, I get to 960 mg/day, or side effects set in. I'd like you to prescribe imitrex injections and write a letter of necessity for my insurance telling them I need 60 injections/month.
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Not sure if you're being sarcastic or not Bob, but that is what I basically did last Neuro I visited. He agreed 100%. I was amazed and walked out with scripts in hand and in total shock. All cept for the 60 injects a month. Damn insurance people. I wonder if it was because I told him I was suicidal without my Trex. Dunno, but it worked.
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Bob P
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Re: Damn Doctors
« Reply #6 on: Jun 15th, 2004, 7:01pm » |
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Not being sarcastic in the least.
I've had the run around so many times from doctors who don't understand clusters that I decided to educate myself, walk right in and show them I know more about it than they do and 'tell' them what I wanted. It worked with my GP. He admitted he didn't know much about clusters as he wrote the scripts. I too had to fight about the trex. I used samples of all the triptans and cafergot instead. I did get the O2 the very same day. The doc followed me out of the exam room and instructed his nurse to get on the phone to the insurance and get approval for the O2 immediately. I think I finally got the insurance to increase the trex coverage to 18/mo. That was the best I could squeeze out of them.
I also gave him a copy of the article that Lee linked above (except I copied it from the US OUCH site instead of the UK site).
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| « Last Edit: Jun 15th, 2004, 7:04pm by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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cathy
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Re: Damn Doctors
« Reply #7 on: Jun 15th, 2004, 7:10pm » |
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chrisv...like Bob says after 14 years you need to be telling them not the other way around....lets face it they're playing with YOUR life so nows the time to take control of YOUR life and stop being fobbed off with painkillers that you know don't work....
Good luck with the neuro let us know how you get on, sorry your here but glad you found us. PF vibes from across the pond.
Cathy 
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My own tears would mean nothing to me, if I could stop you from just shedding one....
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Superpain
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Re: Damn Doctors
« Reply #8 on: Jun 15th, 2004, 7:43pm » |
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I agree... I was lucky and finally got a GOOD neuro, but he was impressed with my knowledge on the subject and gave me everything I wanted.
Except xanax... 
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Chris
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chrisv
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Re: Damn Doctors
« Reply #9 on: Jun 16th, 2004, 5:54pm » |
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Thank you all!!! My neuro was very informed on CH, It made my trip so much easier, he was shocked that i'd never seen a neuro before now. I start off with Imitrex, and a steroid to try to prevent. Go back in two weeks for checkup see how meds are working, doc said would try o2 at that time. Finally no more pain killers!
Thank you all again,
ChrisV
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Superpain
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Re: Damn Doctors
« Reply #10 on: Jun 16th, 2004, 6:42pm » |
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on Jun 16th, 2004, 5:54pm, chrisv wrote:Thank you all!!! My neuro was very informed on CH, It made my trip so much easier, he was shocked that i'd never seen a neuro before now. I start off with Imitrex, and a steroid to try to prevent. Go back in two weeks for checkup see how meds are working, doc said would try o2 at that time. Finally no more pain killers!
Thank you all again,
ChrisV
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Your doc has done you a disservice. He sent you out the door with one of the most expensive drugs around, effective as it may be imitrex is not the all in one answer.
O2 should've been the first script he wrote.
And what good is a cycle of steroids without a long term preventative?
Steroids are given to give you relief while the verapamil or whatever other prevent has time to set in and start working. 
Oh well... Enjoy the next couple weeks of PF hopefully.
I'd give your doc a C+ in his treatment.
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Chris
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FZfan
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Re: Damn Doctors
« Reply #11 on: Jun 16th, 2004, 6:50pm » |
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Sounds like good news for you chrisv. Finally some relief for you. But you didn't follow Superpain's advice...
Quote:| And under no circumstances leave that office without a script for O2 with a regulator that can hit 15 lpm. |
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I know this is beating a dead horse, but I can't help it. The failure of even informed neuros to prescribe o2 immediately just stuns me. Do doctors have some sort of predjudice against prescribing something that isn't a pill?!
Good luck with your meds, but please get on that doctor's ass about getting your o2. Print out the info available here and take it with you if necessary.
Welcome to Clusterville.
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chrisv
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Re: Damn Doctors
« Reply #12 on: Jun 23rd, 2004, 5:49pm » |
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Couldnt wait until next week, called dr and got script for o2. Imitrix works great, just get more headaches than shots in a week.
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thomas
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on Jun 23rd, 2004, 5:49pm, chrisv wrote:| Imitrix works great, just get more headaches than shots in a week. |
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Then try a different triptan. Like zomig or amerge.
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don
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I saw my neuro for the first time in 3 years last week. First thing he asked is how do you want to do this?
I told him. We are doing it.
480 mg verap.
pred. taper
imitrex to abort.
If that dont work I told him I wanted admission for IV DHE. He agreed.
If you dont tell them what works, they'll be playing a guessing game with your pain. I dont have time for that.
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| « Last Edit: Jun 23rd, 2004, 9:56pm by don » |
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Superpain
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Re: Damn Doctors
« Reply #15 on: Jun 24th, 2004, 4:01pm » |
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on Jun 23rd, 2004, 5:49pm, chrisv wrote:| Couldnt wait until next week, called dr and got script for o2. Imitrix works great, just get more headaches than shots in a week. |
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You got the statdose pen? Split the shots if so. You only need 1/3-1/2 of that "dose" to kill a headache. 6mg just about sends me over the edge.
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Chris
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Prense
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Re: Damn Doctors
« Reply #16 on: Jun 24th, 2004, 4:16pm » |
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on Jun 24th, 2004, 4:01pm, Superpain wrote:
You got the statdose pen? Split the shots if so. You only need 1/3-1/2 of that "dose" to kill a headache. 6mg just about sends me over the edge. |
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Some folks actually need the full dose...the majority can make less than a full dose work. Unfortunately, I cannot.
Chris
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Superpain
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Re: Damn Doctors
« Reply #17 on: Jun 24th, 2004, 4:47pm » |
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Damn.... I'm not sure I'd want to use it if I had to do the whole 6mg.... I guess it's better than the headache though.
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Chris
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Prense
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Re: Damn Doctors
« Reply #18 on: Jun 24th, 2004, 6:14pm » |
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I don't even feel any sides from using it except for some minor scalp tingling. Thank God it still works though.
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Kevin_M
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Re: Damn Doctors
« Reply #19 on: Jun 24th, 2004, 10:51pm » |
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on Jun 23rd, 2004, 5:49pm, chrisv wrote:| Couldnt wait until next week, called dr and got script for o2. Imitrix works great, just get more headaches than shots in a week. |
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Glad the trex works for you, it does for me too. A common problem though is getting enough of them for the month. That is why oxygen is very important. Getting the right set up, with the non-rebreather mask, humidifier and the high-flow regulator from a supplier can be a search too if it's not on the script. Therefore the suggestions obtaining the O2 from welding shops supplier as an alternative. I find the trex more portable for work.
The topic of the prevent which SPain brought up should be brought up to your doctor. The steriod you mentioned is probably Prednisone, good for short duration only, I think twenty days max. Call and ask your doc, what happens when the Pred taper ends and the cycle isn't broke, which it never has for me. Tell him you certainly don't have the amount of trex to abort every attack for the next few months with and ask about a preventive medication. Mentioning also, that sleep is kind of important to you. My episodes always have been 3-6 months, so prevents are important.
All this takes some legwork but getting it right soon is the best thing.
Kevin M
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| « Last Edit: Jun 24th, 2004, 10:56pm by Kevin_M » |
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Superpain
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Re: Damn Doctors
« Reply #20 on: Jun 25th, 2004, 5:15am » |
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LMAO.... 
"Sleep is kind of important to you"
That's right up there with "severe cluster's"!
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| « Last Edit: Jun 25th, 2004, 5:16am by Superpain » |
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Chris
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miapet
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Re: Damn Doctors
« Reply #21 on: Jun 25th, 2004, 10:46pm » |
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o2 o2 o2 . . .if you can't get a script, there's always welding tanks *g*
k, enough of that
being educated and advocating for yourself is your best defense . . .it took awhile, but we finally got our medical community whipped into shape *g*
*positive light and energy*
D/miapet
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Re: Damn Doctors
« Reply #22 on: Jun 25th, 2004, 11:08pm » |
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I wish I had seen this post before I wrote my list of Questions. This answers about half of them. I knew that would happen. I 'm going to take that info to my doctor too. I sure hope he listens. I have been grabing at any thing jus hoping that some thin will work and keep this pain away. Funny I feel better knowing other people are in the same boat I'm in. Thought I was all alone or going crazy.
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UN_SOLVED
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Re: Damn Doctors
« Reply #23 on: Jun 26th, 2004, 6:31am » |
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I hope you all have or find great doctors. But if you don't ... keep looking for a GOOD doc.
Don't except "your appointment is in 2 months" from anyone docs office. You're suffering with CH !! You need in ASAP !!
Do your meds like your supposed to. Try not to skip any and do them at about the same time everyday. Give them a 'fair' amount of time to work (or not work) before switching to something else.
Bottom Line: Don't sit back and suffer when there is possibly someone / somethig out there that might help. Find it !!
Goodluck
Unsolved
PS> I'm glad I do have a great doc(s). He KNOWS CH. He knows me. It's working out good with him. I wouldn't trade docs for nothing. I owe him (and Imitrex) my life !
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