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Title: 1ST-time post...neuro,meds,triggers... Post by jayhawk on Dec 6th, 2002, 8:33am Where to start? Found this awesome site 1 week ago...wish I'd found it 3 months earlier...would have saved me soooo much pain and misery. I've had CHs for 18 years. Started with a 6-week episode in 1984, became chronic. Had had 2 other episodes during those 18 years. End of September, another episode started, worst ever. Got so bad had to be hospitalized. Was complicated by fact my primary care physician really knew nothing about clusters...and I'm just realizing that, from reading EVERYTHING on this site, that I may have been being mistreated for a good part of these 18 years. For 10 of the 18 years doctors have had me on Inderal. For 8 of the years I was on Verapamil (and during those 8 years I was the most pain-free by far). Anyway, have just gone through an experience with a neurologist from HELL. He had me on about 8 things after getting out of hospital, including inderal and Topomax...neither were really working and then i started developing REALLY bad side effects to topomax. So I went back to him and he seemed to think i was faking the side effects, and all he wanted to do was put me on Paxil, to treat anxiety (which, before the CH episode started, I'm like the least-anxious person around)...i told him this, which he ignored. I asked him if Paxil causes fatigue or weight gain (because I'm about 80 pounds overweight) and he promptly said no, those aren't side effects of Paxil...i've since found out he was either outright lying or is an idiot. Then he said he wasn't even sure if I have cluster headaches. I'd already detailed for him, in person and in my written medical history (which it was obvious he'd never read) classic CH symptoms. When I asked him what his diagnosis was, he wouldn't even give me an answer. Regardless to say, I'm not going back to see him ever again. My question to all of you: I'm seeing another neuro on Tuesday (recommended by a member of the Web site)...I am so shook up by my encounter with this last neuro, what can I do to best ensure that this next appointment with new Doctor goes totally differently? I'm positive i need to be on Verapamil...is it OK to suggest, based on my past success with it, as well as dosage? I want someone who knows what she's doing, but I also want someone who will listen to my needs and validate my concerns and what I know about my own body. Thank you all SOOOO much for wading through my ravings. I have sooo much more to ask and say, but will save for another post. |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by echo on Dec 6th, 2002, 8:40am Sorry to read you are having such a rough go of it Jayhawk. Hopefully this new appointment will have a fruitfull outcome. Is your name a coincidence or are you a Jayhawk alumni? |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by Mastifflvr28 on Dec 6th, 2002, 8:40am Hi Jayhawk, Welcome to the board, glad you found us and all the info you need. Don't know what to tell you about your new doc, other then be non confrontational...take all your info. Good luck!! Mast |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by cootie on Dec 6th, 2002, 9:24am I'm no expert bya long shot but 'would imagine' if yer goin to a nero or doc that was reccomended and knows what CH's are and treated them you'll be in purdy good hands ??? Verses one that don't know shit and thinks ya got somethin else goin on...like anxiety and it jus casuein em. YES-SIR-EEE Paxil causes weight gain.....big time.....takes forever to loose it to and when on it you can eat like a bird and 'still gain tons of wieght'....like yer puffy all over type weight !!!! But it does serve a purpose and help with anxiety....I think it should be more of a short term drug....kinda teaches ya how to react to things more laid back and not panic. Everyone is different tho.....GOOD LUCK TO YA !!!! :) |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by Bob P on Dec 6th, 2002, 9:31am When I go to my doc I say, "I'm starting another attack of clusters. I would like verapamil as a preventative and oxygen and injectalbe imitrex as abortives. You will need to write a letter of medical necessity for my insurance because I need 2 imitrex per day. I also want to start the verap at 360 mg a day and up it by 120 mg every 4 or 5 days until they stop." Be sure to print the backup info for what you're asking and take it along with you to substantiate your request. |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by ave on Dec 6th, 2002, 9:36am Jayhawk, if you had good results with one med AND the neuro you are seeing is a reasonably body, you can certainly ask to be given that medication again. As to dosage, do a Search on this site (top button right I fancy ) and print out everything you find.There was a meeting quite recently where a doc spoke who has been quoted to say (something like): "clusterheads need Verepamil in dosages that would give a cardiologist a heart attack!" It is always a good idea to bring as much printed out info you can. But if Vera helped, buy all means try and get her(?) to prescribe it. Great good luck! |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by Drk^Angel on Dec 6th, 2002, 11:50am Welcome to the board! Sorry that the beast is whippin' your cranium with electrified razor wire. Good luck! PFDAN.................................. Drk^Angel |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by Slammy on Dec 6th, 2002, 12:16pm Jayhawk, It doesn't get any better than the advice BobP just gave you.....please use it. :D Slammy 8) |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by Mark C on Dec 6th, 2002, 12:34pm Nice post Bob. |
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Title: Re: 1ST-time post...neuro,meds,triggers... Post by domm on Dec 6th, 2002, 4:19pm Jayhawk - welcome to the board. Use Bob's advise. Make sure you use the O2 correctly. Read up on it here. good luck |
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