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Topic: new to site, not to CH, meds messed up!! (Read 464 times) |
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mezza
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new to site, not to CH, meds messed up!!
« on: Mar 18th, 2008, 2:54am » |
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I have been lurking here for a few days and have learned a lot. thank you all. I am episodic. Am on my 3rd episode- prior episode was 4 years ago- episodes seem to always happen late feb to early march. 4 years ago doctor gave me pred taper ( a pack ) and stopped cycle immediately. Used imitrex nasal prior to the taper. This time started march 2nd went 1 week till I got pred taper started at 60 mg for 3 days, 40 for 2 etc. at 60 mg absolutely no ch when i dropped to 40 got attack. Saw dr again and got a pred shot and lengthened the taper - 40 mg for 7 days, 20 mg for 7 days and then will go to 10. Also I only ever get 1 attack a day at night about 2 hours after i go to sleep. Here is where I am at:
since dropping that first time on the 12th to 40 mg i have been getting hit. Used Imitrex to abort, then tried maxalt . Maxalt doesn't work for me- had worst hit ever on the 14th - lasted almost 2 hours. Ran out of imitrex this weekend (sat), can't refill till the 26th ( Dr working on an override) Took Melatonin 6 mg and 250 mg of magnesium last night, slept thru night , horrid dreams, upon waking up got hit, but aborted with red bull, strong black coffee, excedrine migraine. Strong shadows all day.
Thought melatonin is the trick- upped to 9 mg , took magnesium too , never fell asleep and within an hour got a terrible ch. Still don't have the imitrex, took a leftover maxalt and took an hour to abort. This was about 3 hours ago. Can't sleep, head hurts, afraid to sleep, strong shadows.
What is the deal? could it be that I upped the melatonin? I felt the worst ever today keeping the attack at bay, groggy, blurry, too much caffeine. Something has to give- I am going to try to get in to see a Neuro asap. I can't deal with this much longer. It's the third week. It hasn't ever been this bad.
Any advice? Thanks so much
BTW 38 yo female
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seasonalboomer
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Re: new to site, not to CH, meds messed up!!
« Reply #1 on: Mar 18th, 2008, 5:09am » |
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Sounds like your doc is engaged in your treatment. I don't se Oxygen mentioned. This is a first line abortive for many of us. See about getting a prescription for O2 witha regulator that will go to 10-15 lpm and a non-rebreather mask. It changed my life when I did.
Scott
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seasonal boomer
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darknight
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Re: new to site, not to CH, meds messed up!!
« Reply #2 on: Mar 18th, 2008, 7:14am » |
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HI Mezza,
As seasonal metions Oxygen is the first line of abortive for many! Ive been on Maxalt which i thought did not touch the sides currently im on Oxygen and Imigran injectors but ive only ever used Oxygen as they seem to abort them without the need to inject (so far). Ive been diagnosed for just over 2years and been on OXygen for 2months roughly. Before Oxygen id dance at least twice a day and take a horrid amount of meds now im on 02!!!. i hope it helps you!
Hope you find your relief!!!
PFD TO ALL!! 
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mezza
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Re: new to site, not to CH, meds messed up!!
« Reply #3 on: Mar 18th, 2008, 8:16am » |
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yes - thanks to the replies. I have been seeing so much on this site regarding oxygen. I really have just been thinking that like 4 years ago that the prednisone would just stop this cycle like last time and that imitrex would handle the breakthroughs. I am waiting for neurology offices to open today - wish me luck
Does anyone think that there is a possibility that the type of prednisone taper i was on 4 years ago - the kind in a pack that was spread out over the day medrol?) vs the kind i am on now pills in the am all at one time- may have been more effective due to the timing of taking the pills?
Also- does anyone think that melantonin may have worsened the attacks? BTW finally fell asleep last night but when i woke up - bad cluster- aborted with imitrex ( used last one) and 2 cups of black coffee within 10 minutes- ( much much better than maxalt)
I am thinking of going back to basics here- get the rest of the imitrex script filled today ( with any luck dr and override is complete) and stick to pred till i get in neurologist and forget about all the other stuff i tried
Thanks to everyone and for all of this great information.
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Brew
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Re: new to site, not to CH, meds messed up!!
« Reply #4 on: Mar 18th, 2008, 8:23am » |
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My doc told me that the most effective way to take prednisone was to take it all in the a.m. (upon waking). Doing this most closely mimics the body's natural production of adrenaline.
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Bob_Johnson
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Re: new to site, not to CH, meds messed up!!
« Reply #5 on: Mar 18th, 2008, 8:40am » |
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No mention of your using Verapamil to prevent/reduce CH. Have you tried it?
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Bob Johnson
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mezza
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Re: new to site, not to CH, meds messed up!!
« Reply #6 on: Mar 18th, 2008, 11:15am » |
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Thanks for the info- no verapramil - last cycle the pred was enough and so gp thought no worries this time too and gave me the shot for good measure.
I have an appt with a Neuro tommorrow- Hopefully this will do it- i obviously need something else- It seems to be getting worse. Maybe this means that its getting better? on the downhill slide of the cycle?
Who knows? If i could get that imitrex override today then i can definitely stick it out for 1 more day till i see the neuro-
Anyone ever just get night hits ( 1x only each night) and then suddenly get 2 hits melatonin?
Thanks so much for advice and support- I feel desparate and weepy and of course angry!
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Trooper
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Re: new to site, not to CH, meds messed up!!
« Reply #7 on: Mar 18th, 2008, 6:50pm » |
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For a quick fix you may want to call your doc and see if he can give you some samples of Imitrex to carry you over. I always beg for samples anytime I go to the doc. You may also want to look into getting a different form of Imitrex. I don't know about your insurance but mine will only give me 6 nasal sprays per month and that does not even come close to lasting during one of my cycles.
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Superdave
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Re: new to site, not to CH, meds messed up!!
« Reply #8 on: Mar 18th, 2008, 7:00pm » |
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Mezza,
Melatonin works really well for me but many of our brothers and sisters in pain say it lets them sleep to far into the attacks and there for have a more difficult time aborting
Superdave
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Wow! you mean it's just in my head?
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coach_bill
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Re: new to site, not to CH, meds messed up!!
« Reply #9 on: Mar 18th, 2008, 9:55pm » |
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hey there, sorry to hear about your cycle, some thing to think about, you can call your doctor and ask him to call your insurance for prior authoration (sorry about spelling). it may help bump up the time in the month so you dont have to wait as long, also when cycle ends make sure you still get your imitrex everymonth refills, that way you can still shove it up your insurance companys ass for holdin out on you when you were hurtin, aslo you can bulid a little stock so next time your ready, only need to check expire dates but that alot easyier than waiting 13days for it when your hurtin. and before i clusterbustered MELATONIN worked great for me, it took me a couple of nights but i found useing less worked better and i know it saved me from some battles, feel better, coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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mezza
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Re: new to site, not to CH, meds messed up!!
« Reply #10 on: Mar 18th, 2008, 10:35pm » |
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yes- thanks for the advice- I have already planned to stockpile my 11 refills of imitrex for next time- i can only get 3 imitrex now til april 4 th with a preauthorization- so i plan on being so prepared next time. And as a gotcha to my insurance company too- they suck!
I am trying 6 mg of melatonin tonight we'll see- took the magnesium- can't get worse i don't think at this point. Going to the neuro tommorrow- and have printed off a link provided to me earlier. I am going to ask for a preventative tommorrow and samples of imitrex or i have to get another type of abortive because 3 will last me till thursday max-
I am exhausted from all the meds- I am going to take the rest of the week off from work after the dr appt tommorrow just to sleep and not have to juggle work, kids, sports, easter events etc and of course these horrible shadows and caffeine jitters- also i am finding myself being short with people and very intolerent( pred i am sure)
I am so glad i found this site- i have been helped so much and am continuing to learn- thanks again
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