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Topic: NEW TREATMENT REGIMEN! (Read 390 times) |
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Renee
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NEW TREATMENT REGIMEN!
« on: Mar 2nd, 2004, 7:42pm » |
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I sure hope this works.
I've been to hell and back lately and almost constant ha for 8 days varying from kip 4 to kip 8. Called my neuro today and am switching to Zomig, Topomax and staying on the Indocin but tapering down to a lower level on the Indocin in 4 weeks. Still on the o2 also but it hasn't helped much lately either, even with tube in ice.
The imitrex was only providing partial relief for about 40-45 min. and was taking 20 min. just to get the partial relief.
So, I'm free to take Zomig anytime after 9 pm tonight (24 hours after last imitrex injection) and I start the low levels of topomax tonight and it will take 4 weeks to get to desired dosage.
I also got 2 nerve blocks today. One in the supra orbital notch and one in the supra trochlear notch so..right now all is numb and I look like I got punched in the eye by Mike Tyson. The last nerve block, last year, helped for a few months...crossin' my fingers.
What dosages of Topomax do many of you take at full desired dose?
Any comments on the Zomig? My rx is for Zomig that dissolves on my tongue.
also, scheduled an mri and mra as it's been a few years since I had them.
hoping this works and send me some vibes,,PLEASE!
love y'all and pf 24/1 to all,
renee
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| « Last Edit: Mar 2nd, 2004, 7:44pm by Renee » |
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BarbaraD
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Re: NEW TREATMENT REGIMEN!
« Reply #1 on: Mar 2nd, 2004, 7:48pm » |
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Vibes are out kiddo.
Topamax was my miracle drug. My headaches went away (except for break thrus) as soon as I started it. I started on 75mg and a week later went to 150mg. I stayed there for a long time, but when the CH broke thru I would up it. Most of the time I stayed on 100mg.
It worked from 99 until a few months ago. I'm off it now, but have my 50,000 mile check-up with my neuro in the next month or so, so I'll probably go back on it.
Hope you got good insurance - it's expensive as the devil. About $400 for 90 pills. At one time that would get me thru a month. Right now my druggist is having to find someone else to make his house payments. He keeps asking me if I don't need to go back on it.
But you need to put your theory to work and "THINK" it will work and it probably will.
You know where I am if you need me... 2 hours away...
Hugs
BD
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DJ
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Re: NEW TREATMENT REGIMEN!
« Reply #2 on: Mar 2nd, 2004, 8:37pm » |
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HANG IN THERE RENEE!!!
I hope the new stuff kicks the clusters in the ass!
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #3 on: Mar 2nd, 2004, 10:37pm » |
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thanks Barb and DJ for the support!
the lidocaine has worn off so i'm back to about a kip 7 right now but the dekadrone (sp?) will make things worse before they get better and i know this from experience but give me 36 hours and it should be kicking some demon butt!
i'm gonna have a black eye from this round of blocks. didn't happen in the past??
got my first topamax on board and in the belly, about 15 min. ago. so far no side effects, just a ch.
i'm not physician approved to take a zomig as it is after 9 pm and that marks 24 hours without trex, but i want to wait and not add both new meds real close together in case of any side effects. i will want to know which caused the side effects.
well...i think i'm rumblin' on here. maybe the steroids already have me workin' overtime.
love y'all
renee
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Lizzie2
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Re: NEW TREATMENT REGIMEN!
« Reply #4 on: Mar 2nd, 2004, 10:42pm » |
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Renee,
I sure hope it works for ya!!! I have been on the decadron many times. For topamax, I was all the way up to 375mgs, but then we backed down to 100mg twice a day and then to just 100mg at night. My neuro told me if you get numbness and tingling in your extremeties or even your face, try eating bananas and drinking OJ...it restores potassium to your system, which can fight the numbness and tingling.
I really wish you the best of luck! I have some experience with all the meds you mentioned if you have any questions.
Keep fighting! 
Lizzie
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #5 on: Mar 2nd, 2004, 10:50pm » |
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Lizzie,
thanks for letting me know you've done the same meds. i don't really expect any side effects at only 15 mg for the first week, but who knows.
if i have any questions or fears, i'll certainly p.m. ya...thanks
i love oj, but bananas don't like me..  and i loved bananas so.
did you ever have any supraorbital or supratrochlear blocks?
i'm thinking i might should go get an ice pack to help keep down the swelling and bruising but since i have no feeling on the skin, only the ch on the inside, i'm a bit leary of icing right now.
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TxBasslady
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Re: NEW TREATMENT REGIMEN!
« Reply #6 on: Mar 2nd, 2004, 10:59pm » |
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Renee,
Hope you know that I am always with you, sweetie.
I suppose I have kinda been on you lately to make some changes.....but I hope you know that it is out of love that I did that. Just could not stand the thought that you have been so bad off for so many days. I felt terrible about leaving Dallas on Sunday. Had I known that Monday was gonna be as bad as it was for you...I damn sure would have stayed with you.
Since Jackie has gone thru so much with Blake....I thought with her help, between the 2 of us, we could do something for you. I am so glad that you talked with Blake. He has been thru so much. Jackie is such a strong supporter and is very knowledgable about CH. I felt that she could really help. And, as usual, she did!
If you need me to be there when you do the MRI and MRA.....let me know. I do have a bass tourney on Saturday, but I will gladly not make the tourney, if you need me.
Tell your Aunt Mary I appreciate her talking with me and Jackie. I can tell that she was concerned. She is such a sweet lady.
Hope you have a good night. Sorry that things had gotten so damn bad. But hopefully, you will get some relief now.
Remember that Jackie and I will be here for you. You should be able to reach one of us anytime you need too.
I love you sweetie,
PF vibes.......
Jean
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Lizzie2
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Re: NEW TREATMENT REGIMEN!
« Reply #7 on: Mar 2nd, 2004, 11:00pm » |
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i have had occipital nerve blocks many many times, as well as the nerve blocks injected into trigger points in my back, neck, and arm. never had them in the places you have though. most of the time, i did ok with the nerve blocks, but this one time, my neck got really stiff and hurt a whole lot!! i alternated ice and heat until it wore down some.
15mg of topamax will hopefully be ok for now, but as one of my neuros said, "25 mg is like spitting on the fire for headaches" hehe so don't worry if it isn't helping yet...you may need to go higher. i started on 25 when i very first started it.
again, good luck!
lizzie
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #8 on: Mar 2nd, 2004, 11:31pm » |
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ok...so i'm pissin' in the eye of the demon right now with 15 mg but in 4 weeks i'll be ramped up to full dosage and hopefully with no side effects!!!
thanks for the info lizzie
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #9 on: Mar 2nd, 2004, 11:39pm » |
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Jean,
You and I both know that Jackie is your Angel. Well, now you fill those shoes for me! They are big shoes to fill and i'm listening very intently to all that you and Jackie tell me.....SEE!!! I'm off the trex as it wasn't helping, i'm starting topamax and zomig, cut the bag off my mask and got an appt for mri and mra.
See what y'all's loving and being on my lately has achieved! I've given in to the fact I can't fight the demon without meds. Blake convinced me of that today.
I love you and will call for ya if I need ya or they put me in for 6.7 days for DHE IV but I've had many mri's and besides...your talkin' fishin' tournament forfeiture!!! Hell no we aren't gonna let a freakin' demon stop the love of fishing!
I think since you are my angel that Jackie and Blake must be my grandangels...get it?
I'm in good hands with your support and love! I DO listen, just sometimes don't say much cause i'm hurtin'.
Kiss Skylar for me and thank you for being you and being there for me!
WE WILL BEAT THIS DEMON!
LOVE YA
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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SommelierCH
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Re: NEW TREATMENT REGIMEN!
« Reply #10 on: Mar 3rd, 2004, 4:24am » |
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Renee,
Keep fighting girl.
Zomig ZMT 5mg and Maxalt MLT 10mg are the only two meds that I have used. Both are quick dissolving triptan tabs that enter the body under tongue, fast, bypassing the digestive system. Because of this absorption in the mouth, you need a lot less of the drug than you would if you swallowed a regular tab, that dissolves and is absorbed in your stomach or intestine. Did I mention they are fast? They have always been able to kill a Kip-10 in less than 15 min., sometimes within 7 min. I will say, that since my Kip-10’s are almost always out of a deep sleep, I have my O2 close by in the living room and start sucking on it as soon as I can blindly stumble to my tank. This combo is my lifesaver.
I hesitate to mention this next part, because we ClusterHeads are so different, so take it with a grain of lithium, buuttt…because my Big One comes every frigging night 15 min. to 2 hours after I go to sleep, like clockwork, I was able to get quality sleep at the end of my last cycle by taking a Maxalt MLT 10mg or Zomig ZMT 5mg before I went to sleep. The half-life of the tab was always enough to cover me during that first 2 hour period after going to sleep.Unbelievable relief for me and everybody on this Message Board who had to put up with my multi-page posts after being awake for 33+ hours. You have to really know your cycle to do this, these pills are so expensive and so tightly rationed that you never want to waste one.
My first choice is Maxalt MLT 10mg for two reasons. First, my insurance gives me 12 Maxalt MLT 10mg tabs a month, but only 6 Zomig ZMT 5mg tabs a month. Second, if I have to buy them out of pocket, I get 6 Maxalt for $93.00 but only 3 Zomig for the same price (give or take a few bucks).
I called my Dr. today to set up an appt. so I can stock up for my coming cycle. He said he didn’t need to see me, he would just call in whatever I thought I needed. He only saw me once, a year and a half ago, but he remembered all the research that I had brought in with me (printed out from this site and the O.U.C.H. site). He said at the time, that I knew what I needed more than he did. I feel like I have hit the lottery. Tomorrow, I tackle the Insurance beast.
I hope this helps some,
David J.
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Jackie
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Re: NEW TREATMENT REGIMEN!
« Reply #11 on: Mar 3rd, 2004, 8:48am » |
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Ahhhhhh Renee.....bless your heart.
Ok, now you're on the move. You've fought the beast sooooo hard and he's still been beating you up....now it's your turn to kick the SOB right in the ass. He (the beast) is tough but he CAN be outsmarted!!!
There are better days coming, Sweetie.
There is safety in numbers.....Jean, Blake and all the rest of us are right here. Please call ANYTIME....ya hear me??  Aunt Mary and Amy know how to get in touch with us too...right?
Love ya,
Jacks
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #12 on: Mar 3rd, 2004, 9:07am » |
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David J,
Fortunately and unfortunately, I don't have an rx plan with my health insurance. Good news is I am not limited to quantities except those prescribed by a doctor.
Bad news is I a $1500 deductible to meet and then I still have to pay 20% of full price after the deductible on all meds and send the claim to the insuracne company.
Good news is I hold all my RX receipts and file them the first of the following year and after my deductible, which has usually already been met with dr visits, I get a VERY NICE check in the mail that covers all of my vacation expenses for the upcoming year.
I don't know if taking a Zomig at bedtime would work for me. My magic dancing does not come on until 0450, true to the clock almost every time, and I typically go to bed around 11, SO...I am lucky and get almost 6 hours of sleep prior to the dance. But..when I wake the demon has already got me in such a bad way that it takes forever just to ride it out as it is usually too high for any meds or o2 to help.
Congrats on your lottery winning with your neuro and good luck with the insurance company.
pf vibes to ya
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #13 on: Mar 3rd, 2004, 9:41am » |
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Jacks,
did you know since you are TXBasslady's angel for being her first supporter and TXBasslady is my angel for being my first supporter when I logged in that this makes you and blake my grand-angels!! lol
I didn't listen to the doc and stay lying down last night so I have a black and blue swollen eye today and had the steroid sweats at 3am and couldn't get back to sleep until 0630 and was back up at 0800. Nothing going on except typical steroid reactions that I have and a black and blue swollen eye. No CH!!!!
YAHOO!!!!!
I did email my g.p. and I can't my Celexa with the Zomig. I am to call him today and discuss a plan.
Thanks for all your support and "pushing" because I was at the point I couldn't fight the demon anymore without any meds that worked. I can't believe the trex got to where it quit workin'!
hugs and kisses to ya both
love
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Roxy
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Re: NEW TREATMENT REGIMEN!
« Reply #14 on: Mar 3rd, 2004, 5:11pm » |
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Renee, I'm hoping this does kick it's ass for a long damn time. I'm very glad to see that you're going to have a MRA, I think that's a wise thing to do. If you need me to come down there for any reason....just holler. I'm only two hours away.
Love ya,
T
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Tiannia
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Re: NEW TREATMENT REGIMEN!
« Reply #15 on: Mar 3rd, 2004, 5:25pm » |
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Renee I hope that it works for you. I pray that your nerve blocks work better and are longer lasting then mine. Crossing my fingers and arms and anything ese that will corss for you. Also, keep a base ball bat by your bed and knock the beast out if he tryes to climb back inside your head. You have had enough things in there lately.
I hope that the topomax works for you. 25 mgs and I had side effects gallore. But mine started withint 12 hours of me talking it. Seems to be normal that it you are gonna get the really bad side effects they will come right away, or you will get the annoying long lasting ones that will taper off for most if you slowly raise the dose.
Good Luck hun and you will be in my thoughts and prayers.
Tiannia
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TxBasslady
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Re: NEW TREATMENT REGIMEN!
« Reply #16 on: Mar 3rd, 2004, 5:47pm » |
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Just thought I would let you guys know.....
I called Renee couple hours ago....she was taking a nap.
Has a black eye, and swollen nose from the nerve block,
but still no CH.
So, looks like the block just may work.....
I spoke to someone that works for Renee, but left message for her to call when she wakes.
Renee has had an awful time with all this. She not only has CH...but also CPH and has a CSF Patch. She had a botched surgical procedure sometime ago, and the end result was a probe that hit her brain, thus causing her more problems.
I really appreciate all of you helping her out.
She really needs our prayers and vibes.
Jean
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Tiannia
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Re: NEW TREATMENT REGIMEN!
« Reply #17 on: Mar 3rd, 2004, 6:31pm » |
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Keep us posted Jean.
Tia
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #18 on: Mar 4th, 2004, 5:44am » |
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Hello my ch family,
I went 10 rounds with the demon this week and he got ONE really big blow to my left eye and nose, pic to be posted later this morning, but I have TKO'd the demon, at least for now!
I have not had a ch since Tuesday night, not a shadow, not a cph, notta nothing....just a black eye.
If ya got the balls to suffer the demon and ya get pain in the orbital area above your eye, check into a supra orbital and supra trochlear nerve block. This is my second time around with the block and the first lasted for many weeks pf.
I'm doin' well but findin' it hard to sleep due to the decadron used in the nerve block. that should pass by tomorrow and i'll be sitting happy at the dallas stars game on Sunday...what a novel idea to actually get to attend one of 41 games that I have tickets to. Actually I've made about 6 games total this year and we only have 7 more home games UNTIL THE REAL SEASON STARTS!!!
thanks for your concern and support. he had me down and out but the ultimate tko in the last second of the 10th round did him in and he can't get back up. no baseball bat even needed right now.
love y'all
renee
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BarbaraD
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Re: NEW TREATMENT REGIMEN!
« Reply #19 on: Mar 4th, 2004, 9:25am » |
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That's great news. You were hurting so bad in Dallas, I wanted to cry along with Jean.
If you have any problems with the Topamax try taking it at night before bedtime. That's how I did and if I had any side effects I never noticed them.
I'm with everyone else -- only two hours away if you need me. And you've got my numbers....
Lots of hugs and good vibes....
BD
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Renee
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Re: NEW TREATMENT REGIMEN!
« Reply #20 on: Mar 4th, 2004, 9:35am » |
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Good Morning Barbara,
When I posted at 4am ish I was still pf. BUT...now I have a ch but I just can't feel it over my eye. I feel it in my temple and in my neck. Nothing major..about like what I had at the m&g but nothing like I had Tuesday.
Storms here today!
You should see my eye!!! If you can find it for all the black and blue...lol
I'm takin' 15mg topamax at bedtime for 1 week and then I add 15 mg in a.m. for 2nd week. then i add addtl 15mg at bedtime (30mg total) with the 15mg in am for 3rd week and then 30mg am and 30 mg pm for fourth week and then 5th week is 30mg am and 45mg pm.
Does this sound about right for a skinny kid like me? 
pf vibes to ya
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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broomhilda
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Re: NEW TREATMENT REGIMEN!
« Reply #21 on: Mar 4th, 2004, 12:33pm » |
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Renee, so sorry you are fighting this demon but keep up the good work and kick his ass!!!!!!
I hope the medications will kick in for you and start to help a bit more. The dosage of Topamax is what I did a few weeks ago(mgs), wish it helped me but did not but I HOPE for you it works and fast!
You are in my thoughts and prayers, wishing you pf times to come and keep fighting!
Andrea
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Suck it up Princess...
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