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kcorrigan
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Please help me understand
« on: Oct 25th, 2004, 7:10pm » |
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Okay, I've talked to my doctor's office (he's just my family DR that's been treating me). I have an appt set with a neuro but they can't get me in till January! Duh, my head hurts now!
Anyway, I asked him to up my Verapamil during this cycle to see if it would work. He said "it won't work, you need to see a neuro" and gave me 2 new names to work with (the soonest I can get in is next Tues). (Remember that I'm only taking 180 mg SR currently and have been for years).
The pred taper and indomethacin are not working, nor is the trex spray.
Does anyone have any suggestions for when I talk to him? I'm in the process of seeing about getting an RX for the trex injections.
I don't mind getting info from a neuro but am hoping that I'm on the downward part of this cycle. They tend to only last about 6 weeks and I'm on Day 24 so am praying that I only have about 2 1/2 weeks to go.
I know that many of you have dealt with this for a lot longer. I've been coping for 15 years but am frustrated especially now that I know more about my treatment options. I want to be able to offer educated options and alternatives.
Sorry that this is so long and I'm probably rambling. I'm just really pissed. Even when I called to schedule an appt with the neuro, the lady's like "Oh you have migraines?" I tried explaining it but it's too hard.
Please help. Thanks so much.
~ K
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Katie Corrigan
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Biker
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Re: Please help me understand
« Reply #1 on: Oct 25th, 2004, 7:27pm » |
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Seems to me if you tell a Neuro you have CH, you should be getting in pretty quick. A good Neuro will know something about the pain involved.
Do you have a headache clinic in your area????
If so, you may want to get your doc to send you there.
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JJA
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Re: Please help me understand
« Reply #2 on: Oct 25th, 2004, 7:33pm » |
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Did you print this (http://www.future-drugs.com/admin/articlefile/ERN020304.pdf) out and show it to him? It's a scientific paper showing that higher doses of verapamil may be needed for CH (as well as other options). Most doctors start to listen to you when they see you are more educated on a subject than they are and not just reading stuff on the internet.
Jesse
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Jonny
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Re: Please help me understand
« Reply #3 on: Oct 25th, 2004, 7:34pm » |
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on Oct 25th, 2004, 7:10pm, kcorrigan wrote:Anyway, I asked him to up my Verapamil during this cycle to see if it would work. He said "it won't work, you need to see a neuro" and gave me 2 new names to work with (the soonest I can get in is next Tues). (Remember that I'm only taking 180 mg SR currently and have been for years).
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Sounds like your doc could use my boot in his ass!!
Ive been taking Verap for so long my neuro tells me to adjust the amount as I see fit, im not telling you to do this, but 180 is so low it probably aint doing shit for you.
........................................jonny
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Valerie
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Re: Please help me understand
« Reply #4 on: Oct 25th, 2004, 7:46pm » |
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I know your frustration!!!!
My neuro appt isn't until Nov 5 and I made it in Sept!!! My cycle is almost over. I can tell you that when I upped my dose of verapamil from 120 to 240 it really seemed to help. I would not advocate doing this without your doctor knowing ( I did, but I had a previous script for it and left over meds).
Maybe they will write you a script for an abortive before seeing you if they know you have ch (I'm trying to be positive) - will your regular doc write a script for Imitrex? Zoming 5mg rapid dissolving tabs work great for me. Tell them you're desperate and see if they will give you some samples or write a script.
You may run into the same problem I do - they don't believe you really have clusters because you're a woman. Usually once I start rambling on and they hear I'm educated on the subject they start to listen. Hang in there, hopefully the cycle will be over before you even get there - go anyway to be prepared for next time.
Hugs,
Valerie
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Kris_in_SJ
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Re: Please help me understand
« Reply #5 on: Oct 25th, 2004, 8:22pm » |
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Ditto to all the above. Follow the link Jesse gave you. First, read it carefully, so YOU know what it says, then print it out for your doc.
Unfortunately, cycles change. It's possible this one could end tomorrow or last for 2-3 months longer. If nothing else, you need to be knowledgeably prepared for the next one.
Keep trying for increased Verap and Imitrex injections or oxygen for aborting. If you're thinking about O2, be sure to read up on that as well - you'll need high flow through a non-rebreather mask.
Hang in there! Your have to know your stuff and advocate for yourself. We'll be here to cheer you on and provide support.
Many hugs,
Kris
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unsolved1
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Re: Please help me understand
« Reply #6 on: Oct 25th, 2004, 8:45pm » |
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Samples, samples, samples. Get em' ! Find out what abortive is best for you (I personally have to use Imitrex injections) and stockpile samples, samples, and more samples.
Unsolved
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kcorrigan
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Re: Please help me understand
« Reply #7 on: Oct 26th, 2004, 4:57pm » |
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Well, here's the update for today...
They had me go in for an MRI - DR's concerned that I've been getting these for too long - I'm only 3 1/2 weeks into it... aaahhhh, I'm really beginning to hate doctors!
Then he refused to up my verapamil and ignored my plea for trex injections.
So, now I'm looped up on Vicodin. The shadowing/bruising in my head is still there but much duller. We'll just have to wait and see what happens in the morning when I usually get hit. I am feeling better for now so at least that's a start.
Thanks again to everyone for your emails and messages. I love this group!
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Katie Corrigan
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unsolved1
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Re: Please help me understand
« Reply #8 on: Oct 26th, 2004, 6:30pm » |
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A doctor who would rather give you Vicoden's than Trex injections 
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E-Double
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Re: Please help me understand
« Reply #9 on: Oct 26th, 2004, 6:36pm » |
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NEW DOC!!!!
Unethical to withhold relief especially if your heart is fine and no other problems!!!
JMO
Hang in there!!
Eric
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sioux-z
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Re: Please help me understand
« Reply #10 on: Oct 26th, 2004, 7:03pm » |
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I don't think you should see that doctor anymore. My doctor is clueless about CH's but at least he admits it. I have been calling and calling and bugging my doctor so much in the past few weeks that he has personally called my insurance company to make sure I can get my Imitrex injections (the co. had a limit of only 6 in one month- yea right!!) And now after I've bothered him even more he has finally called the Neuro he referred me to and consulted with him as to what I should try next and has even tried to get me in to see the Neuro sooner. Just keep bugging him and see someone else soon!
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Kris_in_SJ
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Re: Please help me understand
« Reply #11 on: Oct 26th, 2004, 9:51pm » |
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Having the MRI is a good thing - need to rule out other possible problems. However ... need to treat the HA's until all else ruled out!
Narcotics are generally NOT GOOD for clusters - they tend to cause rather severe rebound HA's. If your doc is absolutely against Trex, ask about Oxygen Therapy. It has proven successful over and over, and is mentioned as an abortive in all pertinent literature. Once again, print this out and ask him to read it:
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Good Luck and hang in there!
Kris
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kcorrigan
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Re: Please help me understand
« Reply #12 on: Oct 26th, 2004, 10:20pm » |
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I mentioned the info from that document when I spoke with his nurse this morning. I thought that he'd agree esp since the DR that wrote it was the Dir of HA Research at the Cleve Clinic (and that's where my DR is). I was told that Dr. Rozen is not my DR, blah blah blah.
For now, the vicodin is making me loopy but at least my head doesn't ache. If I get another attack in the morning I'm gonna lose it.
The radiology report from the MRI said that everything looked normal. No shit! What were they expecting to find? Little men walking around with signs that said CH???
Sorry but I'm pissed, tired, and doped up now on top of it. I'm just taking it day by day until next Tues when I get to see the neuro - also with the Cleve Clinic. Hopefully we'll be able to make some changes for the better.
Thanks again to everyone. I'm off to lay down before I fall down, lol.
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Katie Corrigan
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nani
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Re: Please help me understand
« Reply #13 on: Oct 26th, 2004, 10:32pm » |
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angel-ache
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Re: Please help me understand
« Reply #14 on: Oct 26th, 2004, 10:33pm » |
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Hey katie-
I brought that future drugs printout to my doctor and the pharmacy. I live in a small town and the pharamcy girls are sisters and friends of mine. They really liked that printout.
I haven't heard any feed back from my doc yet, but i only dropped it off yesturday, and have an appointment tomorrow.
I agree, find a doc that will listen.
I switched my docs because the first (female) just seemed to busy and inististed migraines with a sinus infection on me. I hate anti-biotics. Stupid yeast infections for absolutly no freakin reason (end rant).
My doc now has a bad reputation for being 'i told you so' to patients. I've been there with him too. But! he accepts my pleas to try something different and changing doseings. He is definately interested in these CH's.
You will find the right doc who is willing to work with you, not with an idea of his.
I am thinkin of you katie..
Angela
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kcorrigan
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Re: Please help me understand
« Reply #15 on: Oct 27th, 2004, 9:03pm » |
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Day 2 of the Vicodin and this is horrible. There was no way I could make it to work today. I could barely walk around the house without holding the walls let alone drive. Not to mention that I've got some kind of crazy rebound/tension HA all over my head. I only took 1 pill today at 9 am and am only now starting to feel human again.
This stuff is making me so drousy and nauseous. But I didn't get an attack today so I'm really thinking that I'm on the down side of my cycle. They're hitting every other day now.
Anyway, just thought I'd give you all an update. Thanks again for all of your help.
I'm gonna go try to get some sleep - haven't had too much in the past 26 days.
Love and PF days/nights to all.
~ K
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Katie Corrigan
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BobG
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Re: Please help me understand
« Reply #16 on: Oct 27th, 2004, 9:45pm » |
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Please get off the Vicodin. Pain killer won't help with clusters.
And please get another doctor. The one you're going to now is an idiot. It is obvious he is ignorant about cluster headaches and refuses to learn.
Please!
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Re: Please help me understand
« Reply #17 on: Oct 27th, 2004, 10:48pm » |
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Please consider a trip to the emergency room for O2
and quit the narcotics and your doc!
~Andy
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ccbiggsoo7
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Re: Please help me understand
« Reply #18 on: Oct 28th, 2004, 2:53am » |
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180 mg isn't shit. They usually start you on 240 mg I took 480 for 2 years. Then it quit and I had to go to Lith. Verap. combo. And like John said adjust as you see fit, if you have em pop a extra. Make sure you see doctors dosage requirements Verapamil is fairly safe under 480 a day. I wouldn't recommend any more than that w/0 docs. consent.
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chris
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