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Topic: what next? (Read 499 times) |
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DavidEH
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So I had my neuru appointment yesterday..
He prescribed topamax, 25 mg for a week (then 50, 75, 100 each successive week).. This was due to a bad reaction I had to predisone 2 years ago (killed the cycle, but I had very negative mood effects)...
He also prescribed Vics. Last Time I got the headaches, he gave me imetrex nasal sprays... He's going to keep me on relpex 40mg tabs as well..
Here's the stipulation. I can't take the relpex everyday. So I have to alternate between the vics and relpex....
Ordering me a mask for 02 tank...
So today, I am took a vic, and experienced a doosy of a hit, but this time I projectiled vomited... The Vic did nothing for the hit, cept make me puke, violently..
The weird part about it is, the vic did nothing and I mean nothing to help my head pain... I am going to call later when I feel better..
Despite what he said, I took my last remaining relpex and the pain finally went away...
Would it be a good idea to seek switching to a different abortive? Maybe ask for the imetrex sprays? 2 years ago, I was using the imetrex sprays almost everyday, and that wasn't a problem. Why is the relpex? The rebound headaches when I don't take a relpex are horrible, but not ch quality (more like an intense migraine), but I would rather have those then the ch hits...
So yeah, waiting a month to see the neuru, saw him for less then 5 minutes (wtf)...
I am so fed up.... Any ideas? What should I ask for now? Supposedly she (the nurse)said, I won't see results from the topamax for at least a week+. But sheesh, havign to go through a painful day (vic day) for every pain free day (relpex day) seems silly..
Any ideas?
Is taking 1 relpex a day that bad (when they say not to go over 2 a day? and never say not to stay on it in the prescription) I use it when I wake up to shadow pain, and it kills the pain the whole day... Any tips for rebound headaches?
I'm at wits end....
I'm about to take matters into my own hands, and find some shrooms....
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| « Last Edit: Sep 8th, 2006, 1:33pm by DavidEH » |
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Karla
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Re: what next?
« Reply #1 on: Sep 8th, 2006, 1:37pm » |
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That is kind of fast to be upping the topamax. It will make you stupid very quickly. Good luck on it. Drink lots of water to avoid kidney stones. It has helped a couple people on the board but not many. Vicadin and percacet are pretty worthless when it comes to ch. It would bring a kip 10 down to a kip8 maybe just enough to take the suicidal edge off. But that was it. I started then taking oxycodone without the tylanol or asprin in it. Then I finally got my dr to give me daily doses of imitrex and send me to a ha/pain clinic. Usually the insurance company wont allow more than 6 or 9 pills or ns a month. You may have to get your dr to write a letter to your insurance company explaining your difference and need for more medicine than just 6 a month. That you need unlimited access etc. Then usually the insurance company will bend over and let you fill the scripts. I am glad to hear you are on oxygen and that it is helping. That is wonderful news.
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Karla
suffer chronic ch
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DavidEH
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Re: what next?
« Reply #2 on: Sep 8th, 2006, 1:49pm » |
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thank you for the reply...
The scary part about the topmax, and I even told the nurse. I have gout, which I think may be related to kidney issues anyways, basically every now and then uric acid builds up in my joints... She said if anything seemed array, to call...
About the pill max, not sure if thats the issue yet. It seemed to be when I was on the imetrex sprays, had to have the doctor authorize more sprays, and had pharmacist questioning me like I was a drugie....
In the past month, I've had 4 refills of relpex okayed so far, along with 2 for axert (I guess I have an okay insurance plan  ..
He seemed as if, taking relpax everyday was the issue, and I wasn't supposed to be doing that (1- 2 a day max)... that seemed strange to me... If they are putting me on a preventative, why can't I use an abortive everyday..
With the oxygen I've been 50 percent successful so far with it, and hope that the mask helps more...
I hate having that feeling that the Doc sees me as a drugie, when I am truely suffering. I mean give any man a quick daily cure for his ailment, who wouldn't take it (2 a day max, as stated on the script)...
Even my primary care doc who gave it to me, said I could take it day after day... I mean if someone suffers from migraines (what the med is for) and suffers a 48 hour attack, do they have to wait a day to space it out??
thanks for the help
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Katherinecm
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Re: what next?
« Reply #3 on: Sep 8th, 2006, 2:22pm » |
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I agree with Karla about the painkillers- Lortab keeps me from being suicidal, but only knock the pain down a couple of points, not get rid of them. A couple of things I've learned:
1)taking them at the very first sign helps them be much more effective. (ie: if taken late, it may knock down 2 points, if taken early, 3-4)
2)taking them with a redbull makes them work faster and better than either redbull or Lortab alone. Too much redbull makes me nautious though (I think it's the corn syrup). You might want to try the sugar-free kind if this makes the nausea worse. The carbonation seems to help nausea.
3)I've read that taking 200mg of ibuprofen with any type of hydrocodone/tylenol combo makes it slightly stronger and last longer. I've been experimenting with 400mg and can't tell if it's true yet or not. But it might be worth trying, as long as you don't have liver issues.
4)to handle the nausea- try taking half the dose you were taking before. It seems to me that too much is no more effective and only makes me vomit too. If it's still bad, there's this over-the-counter anti-nausea syrup meant for children. I'm blanking on the name. It helped me a lot when I was trying lithium and was vomiting constantly.
Re topamax- you might have some results within a few weeks, but it might take up to 6 weeks, and if it works for you the benefits can increase over 3 months. My neuro mentioned she had even once seen it increase in benefit over 6 months for one person, but this might be rare. Just beware increasing it too fast- the side effects can be debilitating, and there is some theory that increasing too fast will make it stop working completely.
If you're completely miserable you could ask for something like a 10-day course of prednisone while you're waiting for the topa to kick in.
Good luck with the oxygen.
Katy
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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Guiseppi
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Re: what next?
« Reply #4 on: Sep 8th, 2006, 2:37pm » |
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Vicodain made me barf and didn't ever help with the pain. Fiorinal helped the pain, if taken early on would keep it down to a 6 or 7. Addicting so not a real good choice for ch.
I'm now on lithium when on cycle, 1200 mg a day, takes 10 or so days to kick in, not much on side effects, don't know what it does with gout though. )@ is my constant companion, I use the imitrex injections when all else fails.
Good luck.
Guiseppi
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DavidEH
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Re: what next?
« Reply #5 on: Sep 8th, 2006, 11:10pm » |
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thanks for the replys everyone... once again, just shows how thoughtful everyone is around here... gladly I take all advice, once again thank you all...
At my rip old age of 26, I've learned that other's advice is sometimes more precious then gold.
Luckily, The nurse told me to stop taking the vics, and is going to increase my supply from 6-9 of the relpex for each refill. She still wants me to try and conserve on the relpex, do to rebounds....
here's hoping for painfree days for us all...
Thanks every1
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Brew
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Re: what next?
« Reply #6 on: Sep 8th, 2006, 11:21pm » |
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on Sep 8th, 2006, 11:10pm, DavidEH wrote:| At my rip old age of 26, I've learned that other's advice is sometimes more precious then gold. |
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Would you mind having a conversation with a certain newbie of Irish descent? 
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Katherinecm
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Re: what next?
« Reply #7 on: Sep 8th, 2006, 11:26pm » |
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on Sep 8th, 2006, 11:21pm, brewcrew wrote:
Would you mind having a conversation with a certain newbie of Irish descent? |
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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BB
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Re: what next?
« Reply #8 on: Sep 9th, 2006, 4:18am » |
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Hi David,
Try to avoid Vics, its addictive and doesnt do much for real CH pain, at high enough dose it will just make you "float" above the pain, not getting rid of it, and thats when its really addictive.
This is a good link on Relpax:
http://www.migraines.org/treatment/pro_rlpx.htm
You shouldnt take more than 80 mg of Relpax per day as it constricts blood vessels in your heart as well as your brain so too much for too long can cause heart disease. However occasional over usage for day or so when you have a bad run shouldnt be a big problem.
Also the mechanisms for kidney stone formation and gout formation are different, so Topamax shouldnt make your gout worse, just make sure you drink heaps of water to help your kidneys clearing the crystals and you shouldnt get kidney stone either.
Good luck with your treatment, wishing you many many painfree days and nights soon.
Take care
Annette
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paulc
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Re: what next?
« Reply #9 on: Sep 9th, 2006, 6:47am » |
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I have used Dilaudid and Actiq (fentanyl) for years. I rarely take the prescribed dose as I do have to work and if I took what was prescribed I'd either be sleeping or flying...on the weekends or days off, when the pain is really bad, then I take as prescribed. Narcotics work for some and don't work for others. I get mine from a pain clinic where the same doctors have been treating me for years and have also been hospitalized about 20times in the past 5 years (I have a case of intractable CH and after trying every medicine known that might help, my docs decided years ago that all that they could do was to try to give me some relief from the pain). I do work but do not believe that I will be able to continue to do so for the 2.5 years more that I need to get a full pension-a real bummer. I wish you well and hope that you find something that works for you; I've had this crap since 1980 and went chronic 10 years ago, with only one break of any significance, so I know what the future holds for me unless the medical community comes up with something that works. I have tried diets, didn't work; I am open to most things that seem reasonable to me BUT I WILL NOT JOIN THE MASTURBATION CLUB! I'd rather have, like Coca Cola, the real thing. keep well.
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Paul C
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JohnM
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Re: what next?
« Reply #10 on: Sep 11th, 2006, 9:54am » |
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So PaulC - my guess at your addictions seems right if what you say is true (are you really Dutch?)
It's denial (that you are a wanker) , pankilling narcotics, and prescription drugs.
If you really have CH then try going cold turkey on the meds. My guess is that your HAs are rebounders.
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unsolved1
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DaveE
If the relpax works, then Imitrex would probably work too (Injections). Have you tried a 2mg subQ injection? I didn't see it mentioned.
It'll stop the worse of attacks for me in less than 15 minutes. It's definately worth the 'jab'!
Reading threads like this really make me appreciate more what my neuro has done for me ... supplying me with injections for years (for free). He's saved me ALOT of pain (and money)!
Goodluck
UNsolved
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DavidEH
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Re: what next?
« Reply #12 on: Sep 14th, 2006, 2:33pm » |
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never have had the injections, closest thing I've had are the trex nasel sprays and that was 2 years ago... They worked great. But I used the pills work great too, at least now, despite slight rebounds...
I am happy to report that I think the topamax may be helping. Tonight I start on 50mg, but in the last few days, I have been dealing quite fine with the relpax and oxygen (along with hot showers, and ice packs)..
Haven't had a CH above 5 in a few days now.... Just waiting on the refill for the relpex....
It seems as if the topamax keeps it at bay, like I can feel the beast, trying to work his dark magic, but never quite gets there... Still shadows though, but an occasional run to the o2 machine, and I'm fine...
At this rate, I'll be back in action in no time (recently finished my college course work, have to go and fill in the paper work for the degree, and look for a job finally, the CH has basically kept me down for over a month.... Where did August and half of September Go?)
I hate the side effects of the topamax though (makes coca cola taste like poop, and I feel alittle forgetful/ and use the wrong words alot)...
Once again thank you so much to everyone on this board, you don't know how much it means!!! When 99 percent of the world has no clue, or doesn't care, thank you!
I hope everyone feels better, and eventually they find a cure to this demon...
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Garys_Girl
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Re: what next?
« Reply #13 on: Sep 14th, 2006, 5:10pm » |
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So far, the most effective treatment out there seems to be psilocybin mushrooms or LSD, and don't expect any doctor to suggest them to you. Harvard conducted a study that indicated:
* 22 (85%) who had used psilocybin reported that it had aborted attacks.
* 25 (52%) of the psilocybin users and 7 (88%) of 8 LSD users reported termination of at least one cluster period.
* 18 (95%) of 19 psilocybin users and 4 (80%) of 5 LSD users reported extension of their remission periods.
* 22 (42%) psilocybin users and 2 (22%) LSD users found therapeutic effects with sub-hallucinogenic doses.
* In secondary analysis, 76 (52%) respondents reported that psilocybin terminated at least one cluster period.
Here's a link to the summary: http://headaches.about.com/od/clusterheadaches/a/mushrooms_lsd.htm?terms =psilocybin+in%20treatment%20of%20cluster%20headaches
There is little else out there that works as consistently to bust the cycle - not abort the CH attack - bust the cycle. And extend the remission period.
You can learn more at http://www.clusterbusters.com
Just a thought.
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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