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Topic: I need your help... (Read 383 times) |
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Georgia
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I need your help...
« on: Jul 23rd, 2003, 10:32pm » |
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I am going to a new neuro tomorrow and I need to have a plan of what I am going to ask for, recommend, as a preventative and an abortive.
I am chronic, and have been for 5 years.
Here is what I have tried in the past. I did not list the time taken or the doses on all of them. They are not anything I wish to try again, with the exception of the zomig, o2 and imitrex.
1) Verapamil (twice) 120 to 240 to 480. Stopped treatment because hypotension and chest pains.
2) Medrol dose pak. Prednisone blister pack. Prednisone, 60mg decreased over one month. Did not stop the clusters.
3) Sansert. Stopped after one dose due to severe reaction.
4) Maxalt MLT. No effect.
5) Depakote - increasing dose. Stopped due to partial kidney failure and hematuria.
6) 02 - Still use it sometimes...helps sometimes.
7) Lithium. 600mg to start. Was a zombie. Dropped down to 300mg. My hair and finger nails fell out. Stopped taking it.
 Vera and lithium together. Reduced my attacks to 5-7 a week/ continued taking it until the hair and nails thing.
9) Topamax. Increased gradually to 400mg. Added to the 300mg of lithium. Stopped due to no reduction in CH and serious loss of short term memory.
10) Zomig - Still use it. Works 50% of the time.
11) Indocin. No effect.
12) Stadol NS. Pain without the ouch. Bad reaction after a while, stopped.
13) DHE - 45 IV treatment, in patient. PF for 5 days during the treatment, took a long trip to hell once it stopped.
14) Migranol NS. Nothing.
15) Cafergot as an abortive. Shat blood.
16) Prozac - no improvement.
17) Zanaflex. No improvement.
1 Propanalol. No improvement.
19) Elavil. No improvement.
20) Imitrex. Bad side effects. Continue to use it when desperate. Effective 1/3 times.
I am sure there are lots of things I have yet to try, too many to bring up at the appt. I am talking med wise here too - not alternative treatment stuff. If it were you, if you were me, what would you ask for?
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| « Last Edit: Jul 23rd, 2003, 10:54pm by Georgia » |
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don
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Quite frankly Georgia, aftyer reading through your failed med list, if i were chronic, I would ask about the trials of Occipital Nerve Stimulation. I would at least ask the neuro to try and get some educational info.
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Ree
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Re: I need your help...
« Reply #2 on: Jul 23rd, 2003, 11:21pm » |
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Georgia at the convention the doc told us that they were coming out with a Zolmitriptan Nasal Spray. (Zomig) stronger and quicker that the tabs... If you have some success with that its worth a shot... Also Dave has stopped his cycle from starting twice with Neurontin... have you ever tried that instead of Verap? Dave's cycle is definately here now but he gave it the good fight for a few weeks anyhow... He is using the Imatriex Nasal Spray til we can get some prescriptions from the doc Thurs and Friday. The doc said that the pills take the longest to abort then the nasal and then the injections. We were excited to find out that the Zomig nasal spray is going to be stronger than the Trex and work faster.........Oh and the doc also said that the melting fast acting pills werent as good as the regular pills... sorry folks We're asking for that Zolmitriptan (Zomig) Nasal Spray... If its available for you get some........love ya and say hi to Den ree
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forgetfulnot
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Georgia, I think Don has his ears on strait this time. Their ain't much left out there. Good luck girl!
Lee
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cathy
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Re: I need your help...
« Reply #5 on: Jul 24th, 2003, 12:29am » |
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Hi Georgia wish I could offer some advice, instead i'll send you PF vibes my friend...good luck with the new neuro.
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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Hooter
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Just a thought, could Imitrex in a lower dosage work but without side effects?
Hope the new doc has some good ideas and comfort for you
Hooter
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katethecelt
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Re: I need your help...
« Reply #7 on: Jul 24th, 2003, 12:57am » |
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Hi Georgia,
Axert and Frova are abortives I've had success with. They are both fairly new so the doc may have samples.
Neurontin is the best preventative for me. I take 200mg at bedtime, but you may need a higher dose. It can make you drowsy so increase the dosage slowly. A friend takes Elavil and Neurontin which has been a good combo for her.
Good Luck! I'm sending good vibes.
Kate
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The mad viking
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Re: I need your help...
« Reply #8 on: Jul 24th, 2003, 1:20am » |
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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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Always Look on The Bright Side of Life
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Ted
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Re: I need your help...
« Reply #9 on: Jul 24th, 2003, 1:21am » |
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Excuses excuses, Georgia. So would you complain if the antihistmine made you drowsy? (Don, forget what I asked for and get her in?)
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rumplestiltskin
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call me if ya want me there
love
den
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Roxy
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Re: I need your help...
« Reply #11 on: Jul 24th, 2003, 9:11am » |
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Georgia, damn lady....that is one heck of a list of meds. The only thing I could add to that would be Frova, and of course...what we have discussed in email. Just let me know, ok?
Love ya,
Tracey
oh yeah....which neuro are you going to?
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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catlind
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Re: I need your help...
« Reply #12 on: Jul 24th, 2003, 9:21am » |
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Georgia that list of meds looks mighty familiar.
Frova, Relpax are two new ones out in the triptan family.
The zomig nasal spray is showing promise to be almost as effective as the trex injections.
Amerge is being tested as a preventative, taken at bedtime with good results so far.
If your attacks are fairly well timed, consider cafergot suppositories 1 hour - 30 min. before your attack.
Also, Dr. Bigal mentioned to me that baclofen and phenergan have also had some good results both as abortives and preventatives. I have used the baclofen with good results, but the docs won't give it to me continuous without the neuro supervising it.
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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Georgia
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Re: I need your help...
« Reply #13 on: Jul 24th, 2003, 9:38am » |
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Thanks for all the replies. I knew I could count on my family for help. Y'all bring tears to my eyes.
Don - I would love to try it. I just don't know how I could get to AZ let alone get Dodick to take me. Worth looking into though.
I am surely going to ask about the newer triptans. Perhaps one of them will work better for me.
Hooter - because the Imitrex only works for me 33% of the time, I don't think lowering the dose would help any.
Neurontin: I am cautious about this drug after reading the scandal with the pharamaceutical researcher. If it is something that has helped others though, I would consider it as a last resort. At this point, everything seems like a last resort.
Rox - I am going to Dr Lee Pollack, in Spring. He is a neuro that specializes in headaches. I called to make an appt and was told there was a 2-3 month wait. I said I have clusters, they said, "Would next week be soon enough?" A good sign, but we shall see.
I am nervous as all get out about this appointment. My stomach is in knots. I haven't been to a neuro in 2 years. (After my DHE HELL, I just couldnt do it anymore. The hope was too dangerous. If I go to the neuro, that means I have hope, even the smallest amount, that he can help me and I am so scared of the devastation that can follow the dashing of hope.)
Frankly, I am so fucking tired of the pain. I just want a few days, just a few simple days, without crying and screaming and hating my head. I start crying at the mere topic of my ch. I need to get my shit together if I am going to manage to talk to this dr without crying hysterically the whole time. The treatments that I have found so far from this site and from the Robbins HA Clinic that I haven't tried yet are: Ritalin, Cocaine drops, Methadone, Bellergal...and of course, the new triptans. Do you think the new dr is gonna think I am a "drug seeker"?? Pshaw. Why wouldn't he?! I know I'm not - I have been med free for 2 years now, with the exception of zomig and the rare imitrex injection. But if I were him and a new patient came in with that list...oh fuck it. Nothing like a dose of worry and negative projection to start the day.
OK. I am gonna get through this. Preferably without killing someone. I will let you all know. Thank you again for your replies. I mean it. You guys are the best.
And Denny - I'm calling ya out.
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la la lala la la.....(its the theme song from the smurfs in case you couldn't tell) Need a smile? Click here: http://users.compaqnet.be/cn174277/Smurfs%20-%20Smurf%20Theme%20Song.mp3
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catlind
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Re: I need your help...
« Reply #14 on: Jul 24th, 2003, 9:58am » |
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Georgia, email Lori Choyce. She can help to make sure that you don't get labelled as a drug seeker. The lidocaine nose drops or the liquid coke may be good options for you.
Cat
(you've got mail)
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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Mr. Happy
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Re: I need your help...
« Reply #15 on: Jul 24th, 2003, 10:05am » |
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George-ah,
What a list. Wow. You're definitely WAY outta my league.
When Not4 was working on the oxygen page, he had MASS QUAN-TITTIES of info on hyper(bar)baric O2........you know...the one where they stick you in a torpedo tube, pump the sucker full of canned air at high pressure, then let you relax with your favorite dirty magazine and D cell toys. Don't know that anyone here has ever tried it......but there's definite research done on it in years past.
Downside - last time I looked this up on the net, prices started at $4,000 per compression party. Mayhaps that was a yuppie site, and there are others more reasonable. Insurance coverage would be to laff.
That's all I got for ya......one lousy long shot in a decreasing pile of straws. Guess it wouldn't hurt to ask.
Hope you start finding a way to make it thru your day.....
RJ
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Georgia
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Re: I need your help...
« Reply #16 on: Jul 24th, 2003, 10:20am » |
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Thanks Cat. I got the email before I read your post. I will email her right now.
I forgot to add Lidocaine to my list. I did try that too. 
Mr Happy - I have read about that treatment. All the info I have seen basically claim that it cures everything from MS to CP to Clusters. When all else fails....
Off to write the email and then off to the neuro. My husband (I still love saying that) is going with me.
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la la lala la la.....(its the theme song from the smurfs in case you couldn't tell) Need a smile? Click here: http://users.compaqnet.be/cn174277/Smurfs%20-%20Smurf%20Theme%20Song.mp3
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kim
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Re: I need your help...
« Reply #17 on: Jul 24th, 2003, 8:45pm » |
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Hi Georgia,
I know. It's a long and most-often crummy list. They are all last resorts - nowhatImean? Anyhow, out of that entire crummy list, the neurontin did some good in my own history. Aside from the scandal, side effects for me were severe memory problems and just felt more numbskullish than usual. But I'd rather be a numbskull than the alternative. I'd give it a shot were I u.
Tell the neuro exactly what you've said above - and be brave - I know you ARE!
Wish ya well********and PFDAN!!!
PS: Sorry so late in responding. Guppy swimmin.......swimmin.....and KABLAM! I think it was some tentacled icky LARGE- toothed fish and well - i'z only a GUPPY ;D
Freakin swam like crazy (coward) and floated in the pond afore I stuk fin back in.
Feel better Georgia**
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| « Last Edit: Jul 24th, 2003, 8:51pm by kim » |
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andy
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Re: I need your help...
« Reply #18 on: Jul 24th, 2003, 10:03pm » |
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Georgia, good luck at the neuro tomorrow, i hope you find the magic treatment thats right for you. Quote:| hyper(bar)baric O2........you know...the one where they stick you in a torpedo tube, pump the sucker full of canned air at high pressure |
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A friend of mine got bit by a brown recluse spider a few weeks ago and he is doing the hyperbaric o2 treatment 3 or 4 days a week. Maybe its something we should look into for CH ............andy
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