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ClstrHeadSupport
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Medications: Here's what he's on, what now?
« on: Oct 7th, 2005, 9:57am » |
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Hello everyone. I left a more detailed message under the Supporters Corner but to make this short my hubby had these stupid things under control for a while. Or so we thought. Here's what he's on. (Imitrex works wonders for him but for one his insurance isn't covering it anymore - except for four injections a month which we all know isn't crap, and for two, he really needs to have a preventative that works)
So, here's what he's on, tell me what you think. Should he be on more mg's? Should he try any different medicaitons you guys know of?
Preventatives:
Topamax 600mg. (300mg 2 times a day)
Verapamil 480mg. (240mg 2 times a day)
Nimotop 60mg. (30mg 2 times a day) - his doctor just gave him this but he says that it feels like his clusters have gotten more intense since he started taking it, so I think he stopped as of last night. Has anyone had expirence with this medication?? What has it done for you??
Abortives:
Imitrex (always works but as I explained above he's barely getting it anymore these days)
Stadol (only on occassion - like when he goes to the ER and they perscribe it for him) But he says it doesn't take his cluster away, only takes the edge off.
He's been going to the ER pretty frequently again. They usually give him Deloted - probably spelled that wrong. It's just a pain killer he gets when he's in the ER. It's really strong though and makes him fall asleep even when he's standing. Plus it has no real long term effect. Like when he takes injections of imitrex sometimes he won't get another headache for a day or two. But Imitrex is the only thing that really does that for him.
And one more question - is there anyone out there that their insurance doesn't cover their imitrex? What do you do? And let me ask you this, have you tried the quick disolve tablets - has that worked even close to what the injections do?? I'm asking because I'm hopeing that even though they won't cover his injectables they'll cover the tabs and if those work then that would be great.
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Sara Pope
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nani
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Re: Medications: Here's what he's on, what now?
« Reply #1 on: Oct 7th, 2005, 10:09am » |
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Can't take Imitrex, so I can only say to look over on the left for the Imitrex tip. It'll help the shots last longer.
I was on Nimotop after I had brain surgery (not CH related). It's a powerful calcium channel blocker. I don't know why the dr would want him on verap and nimotop. 
There are still alternative treatments you could research. Look at the kudzu thread at the top of this board. And www.clusterbusters.com
pain free wishes to your home, nani
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jcmquix
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Re: Medications: Here's what he's on, what now?
« Reply #2 on: Oct 7th, 2005, 12:27pm » |
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Hi ClstrHeadSupport..
Its nice to meet you both... Sorry you have to be here, but this is the best place in the world for CHer's & Supporter's....
I can try to answer a few questions for you....
Frist off.. Is you huby using the tip to the left about splitting the TREX inj.. ? If not give it a try... I have a different method.. :
I use Diabetic Sryinges to devide each stat dose vial into 3 shots, insted of one.. about 1/3 works for me in about 10 minutes.. Some people here have to use 1/2.. but I would say try 1/3 first.. You can get the sryinges at a Feed Supply store if you can not get a script from your Dr, Just tell them you have a diabetic cat at home...
This method will also help prevent the TREX hangover feeling and the possible rebounds from taking to much TREX...
To try and get more TREX from your insurance company, Have your Dr or the Nurse from you Dr's office call your insurance company. Make sure they talk to a nurse at the insurance compajny, not an adjuster, a nurse.. Have the Dr tell them that, your huby suffers from CH and needs more TREX each month... I was only allowed 3 of the 2pack injections a month, after my Dr called they allowed me to get 9 2packs a month, not alot more, but with the tip of dividing them up.. it gets me through the month....
I also stock up on the meds when I am out of cycle.. I keep the TREX in a small fridge in my room... So it will have a longer shelf life, pass the exp date.
Have you tried the O2, my insurance would not cover it, but I got a portable system for about $200.00 and tank refills for $10.00 each... I took about a week to get used to using the O2, but now that is my first weapon.
It helped me streach out the TREX even more.
#2 Question.. Has anyone told you about the Melatonin? Its a Herbal sleep aid that helps reduce the intensity and frequency of the night time hits. Its available over the counter at any large store in the health food section. Get the 3mg pills, take 9mg (3pills) about 30 minutes before bed each night.. It will take about 3 to 4 days to start working, but it took almost all of my night time hits away. When I was able to start getting sleep again, I was able to handle to daytime hits much better. Once you start losing sleep, it all starts falling apart. Just consult you Dr or Pharmisist for any reactions before starting..
Well I hope some of this info helps, I will be back later, after work and see if I can add anything else.
God Bless & PFDAN
Charlie
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unsolved1
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Re: Medications: Here's what he's on, what now?
« Reply #3 on: Oct 7th, 2005, 12:50pm » |
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I'm on NImotop. It doesn't do anything to help me.
I also use Imitrex injections. Since my insurance won't cover it, I collect as many of the free samples as I can get my hands on (from my neuro). Only the injections will work for me. The pills & nasal spray is a waste of my time.
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Bob_Johnson
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Re: Medications: Here's what he's on, what now?
« Reply #4 on: Oct 7th, 2005, 1:27pm » |
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Ask your doc for a sample. One or two doses will reveal whether this works for you or not. If you have to buy it, the per dose cost is much less than the tripans.
--------
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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ClstrHeadSupport
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Re: Medications: Here's what he's on, what now?
« Reply #5 on: Oct 7th, 2005, 2:31pm » |
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on Oct 7th, 2005, 12:27pm, jcmquix wrote:Hi ClstrHeadSupport..
Frist off.. Is you huby using the tip to the left about splitting the TREX inj.. ? If not give it a try... I have a different method.. :
I use Diabetic Sryinges to devide each stat dose vial into 3 shots, insted of one.. about 1/3 works for me in about 10 minutes.. Some people here have to use 1/2.. but I would say try 1/3 first.. You can get the sryinges at a Feed Supply store if you can not get a script from your Dr, Just tell them you have a diabetic cat at home...
This method will also help prevent the TREX hangover feeling and the possible rebounds from taking to much TREX...
To try and get more TREX from your insurance company, Have your Dr or the Nurse from you Dr's office call your insurance company. Make sure they talk to a nurse at the insurance compajny, not an adjuster, a nurse.. Have the Dr tell them that, your huby suffers from CH and needs more TREX each month... I was only allowed 3 of the 2pack injections a month, after my Dr called they allowed me to get 9 2packs a month, not alot more, but with the tip of dividing them up.. it gets me through the month....
I also stock up on the meds when I am out of cycle.. I keep the TREX in a small fridge in my room... So it will have a longer shelf life, pass the exp date.
Have you tried the O2, my insurance would not cover it, but I got a portable system for about $200.00 and tank refills for $10.00 each... I took about a week to get used to using the O2, but now that is my first weapon.
It helped me streach out the TREX even more.
#2 Question.. Has anyone told you about the Melatonin? Its a Herbal sleep aid that helps reduce the intensity and frequency of the night time hits. Its available over the counter at any large store in the health food section. Get the 3mg pills, take 9mg (3pills) about 30 minutes before bed each night.. It will take about 3 to 4 days to start working, but it took almost all of my night time hits away. When I was able to start getting sleep again, I was able to handle to daytime hits much better. Once you start losing sleep, it all starts falling apart. Just consult you Dr or Pharmisist for any reactions before starting..
Well I hope some of this info helps, I will be back later, after work and see if I can add anything else.
God Bless & PFDAN
Charlie
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Okay I'm going to answer your questions...
My husband gets the imitrex stat does self injectors. They're the ones that look like a pen. You press the end to your skin and click the injector. So how do you divide up the doses?? I feel stupid asking because knowing me it's probably a really simple solution but help me out here anyway!
His doctor has filled out all the forms to appeal the insurance company's decision. He's done this several times. Each and every time I've called in to follow up they claim never to have heard from us. It's pathetic. Although I will say that I think this last time we appealed they actually did more than put it in the shredder. At least I think so. Because they've called the doctor back and asked a bunch of questions. How many headaches a day, how long do they last, and all that crap.
My hubby has tried O2 in the hospital but it's never worked. Is this something that takes a few times to work or is it something that works right away. He's never had luck with it in the past. I think his insurance covers it because his doctor was going to give it to him a while back but then didn't because at the time he was smoking. Now he's not so he could probably get it, but why bother if it doesn't work.
Good idea on stocking up with the imitrex. We tried that once but then every one we saved was not effective when he did use them. But I have to say, I never thought about putting them in the fridge. I'll have to try that the next time he's not in masive pain several times a day! Thanks for the tip!
Yes he has tried Melatonin. I think it worked but to be truthful we've been rid of these things for a while so we forgot about it. (Unfortunately the cluster demon didn't forget us at all) So I'll have to go and buy him some more of that tonight.
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jon019
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Re: Medications: Here's what he's on, what now?
« Reply #6 on: Oct 7th, 2005, 4:20pm » |
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Hello ClstrHeadSupport,
I am surprised that no one has mentioned that 600 mg of Topamax is a massive dose. What I know is from research only and conversations with pharmacists.
Typically, treatment commences with smaller doses building to the effective one (different in all) but 100 mg
turns up in the literature frequently. Higher doses are for its main use.
Possibly your Dr is using it as a clusterbuster which also has been reported in the literature and intends to reduce dosage later. I certainly hope so. How is your husband doing cognitively? Personally, at 100 mg I could not safely drive, was unable to carry on a converstion, could not spell or write coherently, had the attention span of a 2 year old (if I cared about anything at all) and was as lethargic as an old hound dog. Currently at 25 mg and experiencing foggy morning thinking and occasional bits of the above. Its all a trade off.
At very least tell your husband to drink LOTS of water or he risks experiencing kidney stones, which is a frequent side effect of this med.
Regards and blessings to an obviously good supporter
Jon019
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E-Double
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Re: Medications: Here's what he's on, what now?
« Reply #7 on: Oct 7th, 2005, 4:27pm » |
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Topa......forgot?? 
Rough stuff for some.
Seems to me to be a dangerous combo (verap. & Nimotop)
Trex....split the doses!
O2 a must &
Ditto Bob J on ZYPREXA
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Ronny
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Re: Medications: Here's what he's on, what now?
« Reply #8 on: Oct 7th, 2005, 4:52pm » |
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on Oct 7th, 2005, 2:31pm, ClstrHeadSupport wrote:
So how do you divide up the doses??
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Look at the left side of your screen, right under "new visitors", the sixth tab is "imitrex tip", everything is explained in there.
R.
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ClstrHeadSupport
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Re: Medications: Here's what he's on, what now?
« Reply #9 on: Oct 7th, 2005, 5:55pm » |
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on Oct 7th, 2005, 4:20pm, jon019 wrote:Hello ClstrHeadSupport,
I am surprised that no one has mentioned that 600 mg of Topamax is a massive dose. What I know is from research only and conversations with pharmacists.
Typically, treatment commences with smaller doses building to the effective one (different in all) but 100 mg
turns up in the literature frequently. Higher doses are for its main use.
Possibly your Dr is using it as a clusterbuster which also has been reported in the literature and intends to reduce dosage later. I certainly hope so. How is your husband doing cognitively? Personally, at 100 mg I could not safely drive, was unable to carry on a converstion, could not spell or write coherently, had the attention span of a 2 year old (if I cared about anything at all) and was as lethargic as an old hound dog. Currently at 25 mg and experiencing foggy morning thinking and occasional bits of the above. Its all a trade off.
At very least tell your husband to drink LOTS of water or he risks experiencing kidney stones, which is a frequent side effect of this med.
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That's something I'm going to have to look into. He's been on this dose for quite some time. No wonder he feels like he's going crazy. He has a VERY bad memory. He can watch an entire movie and not remember that he ever saw it (even after watching the previews to jog his memory) less than a month later. He also is very foggy. And the attention span thing, that hit home. I'm definitely going to mention this to him. Poor thing feels like he's going nuts and it may be as simple to fix as lowering his dose. I'm callin' him. Thanks guys. Keep the advice comming!
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unsolved1
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Re: Medications: Here's what he's on, what now?
« Reply #10 on: Oct 7th, 2005, 9:29pm » |
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Jon019 is exactly right. 600 mg is a huge dose. Topamax give me kidney stones twice on a much lower dose (100mg - 200mg can't remember  ) 
UNsolved
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Re: Medications: Here's what he's on, what now?
« Reply #11 on: Oct 7th, 2005, 11:28pm » |
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Yet another story about Dopeymax (Topamax). It actually made my attacks worse and I had terrible vivid nightmares while taking it. As was said before, I was unsafe to drive and was as dumb as a bag of hammers. No good at conversation. I'd drift off halfway through a sentence and stare into space. I was easily entertained though. I could sit for hours staring at my fish tank. That was at only 200mg.
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purpleydog
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Re: Medications: Here's what he's on, what now?
« Reply #12 on: Oct 8th, 2005, 11:44am » |
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on Oct 7th, 2005, 2:31pm, ClstrHeadSupport wrote:
His doctor has filled out all the forms to appeal the insurance company's decision. He's done this several times. Each and every time I've called in to follow up they claim never to have heard from us. It's pathetic. Although I will say that I think this last time we appealed they actually did more than put it in the shredder. At least I think so. Because they've called the doctor back and asked a bunch of questions. How many headaches a day, how long do they last, and all that crap.
My hubby has tried O2 in the hospital but it's never worked. Is this something that takes a few times to work or is it something that works right away. He's never had luck with it in the past. I think his insurance covers it because his doctor was going to give it to him a while back but then didn't because at the time he was smoking. Now he's not so he could probably get it, but why bother if it doesn't work.
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When your insurance denies a treatment plan recommended by your doctor, they must tell you, in writing, within a certain amount of time, and allow you to appeal the decision. Look in your insurance manual, or whatever they gave you to explain your coverage. If they are not following this, then you can complain to your state's insurance regulatory commission.
O2 must be used as soon as you know you are starting to get hit. I thought O2 didn't work for me, but then I realized that everytime I used it, I was too far into the headache for it to do any good. I had a chance to try some O2 at the very beginning, and it worked.
If your insurance won't cover it, you can go to a gas supply place, a place that supplies welding gas, and get welders O2. I'm not sure how much it would cost in your area, but it doesn't cost much to get it refilled. You will need to get a regulator that goes up to 15 lpm (liters per minute). Many people find O2 delivered at this rate works best. You do not need prescription to get this.
I had my neuro prescribe me Imitrex vials with syringes instead of the stat-dose injections. I can easily split the vials into 3 shots. An added bonus I found out, was that my insurance doesn't limit me as to how many vials I get each month. I get up to 25 vials, and get the refills regularly. And my insurance covers it. They also cover the syringes. I told my neuro I was splitting the stat dose anyway, so he was ok with the vials. Makes it go much farther, I can usually get by with 1/3 of a dose.
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marty
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Re: Medications: Here's what he's on, what now?
« Reply #13 on: Oct 10th, 2005, 6:54pm » |
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Hi
Check your Personal Messages.
Marty
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mzimmy
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I Re: Medications: Here's what he's on, what now?
« Reply #14 on: Oct 12th, 2005, 12:26pm » |
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I am in the midst of a CH cycle. In the past I have used Verapamil but went up as high as 720 mg to get relief before coming down thus my doc recommended topamax. He started me on 25 mg building up to 100 mg. I am now on 100 mg for three days but no relief, that is I am still gettin CH twice a day so what is the point of the T-max anway? Topamax has left me feeling very spacey which I do not like. Will this go away or does it stay like this as you stay on the medication? Thanks everybody, Mark.
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cjc68
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Re: Medications: Here's what he's on, what now?
« Reply #15 on: Oct 13th, 2005, 2:23am » |
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on Oct 7th, 2005, 4:27pm, E-Double wrote:Topa......forgot??
Rough stuff for some.
Seems to me to be a dangerous combo (verap. & Nimotop)
Trex....split the doses!
O2 a must &
Ditto Bob J on ZYPREXA |
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I am also becoming a beleiver of Zyprexa, I have been in cycle for al little over 2 weeks, made it to the Doc 1 week ago, he gave me a
prednisone 100mg taper, 10 days.....Verapamil 240 mg twice a day and 5-10 mgs of Zyprexa my choice either before bed or at onset....other than 1 small hit that first day after the Doc appt. I have been pain free!.....lol plus no depression!....lol I actually feel great!
PFDAN to ALL!
Chris
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