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Topic: Tact??? (Read 816 times) |
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Prense
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OK, Verap didn't seem to work for me after over 6 months. Neuro put me on Topamax now. How can I "tactfully" tell/mention all these other treatments to the doc without steping on his toes??? I must admit, I feel rather uncomfortable telling someone else how to do their job. Oh yeah, and because I am ONLY getting 5-6 attacks a month he didn't feel an abortive was necessary....
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Ueli
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Prense,
There is a good article by Goadsby and Matharu, the CH gurus from England, about the nature of CH and the preferred treatments:
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498& ;Section=Feature
Print it out and bring it to your doc.
You say Verapamil didn't seem to work. Was your dose high enough? This article talks of such amounts of Verapamil it will raise the hair of almost every doc, LOL.
Good luck,
Ueli
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The mad viking
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Re: Tact???
« Reply #2 on: Jul 22nd, 2003, 6:03am » |
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Hi there
This is my coctail
Verapamil Retard 120mgX5-7/daily during cycle 3 weeks after last hit tapering down with 1 verap every 3/4 days until you are on 1 a day.1 a day for another 2 weeks you can decide to quit the verap or take 1 a day.Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 70-60-50-40-30-20-10-5mg every 3/4 day
This work fine for me
The very best from Svenn
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Prense
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Re: Tact???
« Reply #3 on: Jul 22nd, 2003, 4:57pm » |
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Well, I should have mentioned that I am a chronic sufferer. The neuro that I am seeing is under the impression that the 360mg of Verap that he had me on daily should have killed the CH completely. I must admit, and I told him so that the frequency diminished to 5-6 attacks a month and normally a 7 kip max. He changed to the Topamax because they did not go away completely. I printed out the link though and will follow your advice...thanks. He has never prescribed an abortive...my PCM has prescribed Maxalt MLT 10mg which didn't seem to touch these. I've probably tried Maxalt approximately 100+ times.
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Danielle
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Hi Prense,
I am also chronic. When my first Neuro finally acceded to the fact that what he was giving me wasn't working (preventatives) he graciously allowed me to have my choice between Oxygen or Imitrex. It was from the information garnered from this board that I chose Imitrex (far more portable) and finally got an abortive that provided relief. When I FINALLY got into see a REAL Neuro who knew about CH (found on the OUCH site), he couldn't believe the other Dr. had given me a choice?! I remember him telling me that I should have had all these things a long time ago. My point here is that it is bad enough to have Ch so don't do what I and others have done....suffer even moreso, unneccessarily.
My suggestion....do whatever it takes to take care of yourself and your Clusters. What is at stake here is the quality of your life, which is worth more than some not a very nice persons over-inflated ego. I don't mean to be rude, but I'd have a lot more respect for some of these Drs. if they just said "I don't know"....
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Prense
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Re: Tact???
« Reply #5 on: Jul 22nd, 2003, 7:40pm » |
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What you say makes sense...I called the neuro back and spoke with the nurse asking him to reconsider his decision. He's supposed to get back with me. We shall see...
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godsjoy
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Re: Tact???
« Reply #6 on: Jul 22nd, 2003, 9:14pm » |
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I am new to this board....I want to know if you would suggest a prophelactic that doesn't make me feel like death warmed over...Verap made me not want to live as I have low low blood pressure anyway....
Blessings,
Karen
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vig
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Re: Tact???
« Reply #7 on: Jul 23rd, 2003, 8:20am » |
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This quote was in the referenced article.
"However, in this era of a cost-conscious NHS, some practitioners are reluctant to prescribe this relatively expensive drug. We feel that, given the devastating morbidity associated with this excruciating pain syndrome, it is unethical to withhold treatment for cost reasons. " These are doctors saying this, not us.
and again, here is the link to the Glaxo people.
http://www.gsk.com/about/boardofdirectors.htm
I think the insurance companies are just as guilty of being unethical. It's all about money to them and Glaxo and their veneer about pretending to care is very evident. I'm not even insinuating that capitalism is bad, it's the fake posturing that is.
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Bob_Johnson
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Re: Tact???
« Reply #8 on: Jul 23rd, 2003, 11:21am » |
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The idea of printing out some of the medical information (links on left) is helpful because it presents material which he may respect.
The key, however, is for you to become comfortable in being assertive in asking for information, for a discussion of treatments being offered. Docs may have power but it does not mean we must submit.
You may wish to go back to messages of a couple of days ago, in general section, and look for my message on dealing with insensitive doctors.
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Bob Johnson
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Major_Headcase
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Re: Tact???
« Reply #9 on: Jul 23rd, 2003, 2:32pm » |
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Prense,
Your current doc sounds like a twit, dump him if he isn't open to good information and/or patient input. I swear, some med schools must require a semester of "Arrogance 101" to earn a degree! "Students, you must never appear less than perfect. Otherwise the patient will lose confidence in you." -- Horse hockey! 
Personally, I was very lucky that my HMO primary doc is only a few years out of school and still open to learning new tricks. When I first visited him in my first CH cycle, he was skeptical that I truly had CH ... but after going over my symptoms he was convinced and then he actually admitted to me that (gasp) "he didn't know the latest treatment methodology" and would need to do some homework. Bingo, that was my cue to pull out about 30 pages of info I'd printed off from this site. He read through some of the printouts and suggested we try Verapamil & Imitrex first. Gawd, I coulda kissed him!
Verapamil alone got me through that first cycle (240mg X 2/day). My last cycle I had to add Svenn's Prednisone regimen (again, my doc was hesitant to prescribe it in such dosages, but more printouts eased his concerns) and upped the verapamil to 720mg/day during the cycle.
If your doctor is stuck on playing God (all-seeing, all-knowing, all-Blowing), I strongly urge you to look for another one who has A) more empathy for your pain, and B) a better attitude about learning. Give him/her another chance to come around, but keep looking if he/she fails you again. There ARE better docs out there, and you deserve to be treated by one!!
Your doctor sounds like a 'dingleberry' to me ... most rural midwesterners will know what a dingleberry is, for the rest of the group let me say that a dingleberry is one of the little balls of poop that collect on the hairs of a cow's ass -- it is quite useless and only serves to remind you which end of the cow is most dangerous! 
-John
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| « Last Edit: Jul 23rd, 2003, 2:36pm by Major_Headcase » |
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Prense
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Re: Tact???
« Reply #10 on: Jul 23rd, 2003, 3:11pm » |
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In a town this size, if I dump my neuro I'm stuck with a GP....
ummm, not like that is not a bad thing...however, the GP is why I ended up seeing a neuro in the first place. GP is convinced migraine and cluster is the same damn thing.
Still no call back from the Neuro's office...just got back from the ER. I did call them back...apparently, I am still on "their list of things to do". Go figure, ER doc also says CH is just a severe migraine. I even showed her the printout from the above link. She glanced at it briefly, talked about O2 for a moment and how difficult it would be to get it as well as the rebreather and then promptly wrote out a prescription for fiorinal w/ codeine. I don't know why I even bother sometimes.
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| « Last Edit: Jul 23rd, 2003, 3:20pm by Prense » |
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Danielle
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Prense,
Dam, I'm really feelin for ya 
What about getting a second opinion and changing Gp's?
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Prense
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Re: Tact???
« Reply #12 on: Jul 24th, 2003, 4:58pm » |
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I'm in the Air Force...the GP is also in the Air Force and it took an act of God to get the referal to a neuro in the first place. Careful what you wish for eh? Either way, the diagnosis was the same, so at least there is consistency. Good news though...I called the neuro's office today, my chart is now on his desk!!! Yep, I asked the receptionist...only two days to get from the wall to his desk??? She did not see the same humor in that as did I. Anyway, no call from that tard still, but I am now on his desk.........the saga continues. I pondered the thought of camping in his waiting room. I just might.
Prense
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Major_Headcase
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Re: Tact???
« Reply #13 on: Jul 25th, 2003, 9:26am » |
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Prense,
Sorry for the impractical advise I so glibly offered above [ie, dump him], I didn't realize you were getting hit by the military bureaucracy as well as CH, Ugh! 
With your choice of docs being so limited, it sounds like you will really have take the lead as much as possible. My heart goes out to you. I hope and pray the doc is receptive to your input the day your chart actually gets into his hands (from the wall, to the desk, etc). We're pulling for ya'!
-John
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Bob_Johnson
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Re: Tact???
« Reply #14 on: Jul 25th, 2003, 10:29am » |
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Good that you told us about being in the Air Force. But now it's pinching some old, long quiet nerves!! I was in the USAF medical service as a hospital administrator, among other jobs.
Since your position shifts my whole focus, I'm going to send you a private message rather than take up space here on issues not relevant to non-AF folks.
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Bob Johnson
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Prense
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Re: Tact???
« Reply #15 on: Jul 25th, 2003, 7:40pm » |
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Thanks Bob 
Forward progress today I think...
The base hospital will not deal with me once I had them refer me to a neuro here in town. That is not to say that I can get this guy "fired" and get refered to someone else...that would require some commuting on probably a monthly basis...initially anyway. It may eventually come to that. Anyway, my neuro FINALLY got back with me today. He wants me to "try" Maxalt [/i]again[i]...it hasn't worked in the past. Ok, whatever, beats nothing, right? He increased my Topamax dosage to 300mg daily...inputs? I do not see alot about Topamax on here. If anyone has experience with Topamax, I'd appreciate some insight...the side effects at 75mg level I was at before he just bumped it way up was really starting to bother me. I can say that Verap didn't do much for me though for the 6 months or so I was taking it. I'll see what other leaves I can turn over at the base hospital Bob, but I think they have a personal vendetta towards me these days...we shall see. It's all about tact right?
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Damon
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Re: Tact???
« Reply #16 on: Aug 9th, 2003, 1:39am » |
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Hello Prense,
Sorry to read about all the trouble you've been going through. I am also a chronic CHr and am have been on Topamax 100mg for about 3 months. The side effects are really getting to me and I want off before I go totally insane and rip someone's head off. If you can avoid the Topamax please do, try to get him to give you some Imitrex nasal 20mg, at least it works for me ( 6 times every 23 days, Damn insurance co)
Good Luck and Stay Strong
P.S. How much Verap are you taking?
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Prense
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Re: Tact???
« Reply #17 on: Aug 9th, 2003, 11:37am » |
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I'm almost off the topamax now because of the side effects. The side effects went away QUICKLY as I began to taper off!!! I am still waiting for my "new" neuro appt. They are reviewing ALL my med records and then will schedule the appt. I am not on verap currently, but I was on 360mg at one point. I am not sure what direction this neuro will go, but I am going to try to influence the decision to go verap + lith and then trex and o2. I'd say that if you are still having effects from topamax after 3 months, it is definately time to get off. Just do it slowly as directed by your doc. It's a nasty med for sure.
Also, this neuro that was such a pain in the ass is now history, I got a referal to a neuro in albuquerque (four hour drive). That is the "new" neuro I referred to and she is supposed to be a HA specialist. As far as her knowledge about CH...we shall see soon (I hope).
Chris
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