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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Current meds.
        
(Message started by: 5yearsteve on Dec 7^th, 2006, 8:21pm)

Title: Current meds.
Post by 5yearsteve on Dec 7^th, 2006, 8:21pm

New here. Introduced myself earlier in the getting to know ya section. My current neuro seems to have come across some meds that have broken this cycle. They are:

Topomax. (50mg) twice a day. (I take 25mg twice)

Dexamethasone. Still building up.

Maxalt as an abortive.

After the first dose of the topo and dex I havent had a serious attack since.

The down side is that I feel as if I have a slight k2 all of the time now. But it is very managable and not a problem. I do not have to take an abortive for it.

Drugs are a crazy situation for ch. During my last cycle Depakote, Prednisone and imitrex did nothing. Now I actually make doctors appointments with my gp and neuro so I could beg for maxalt samples. My current insurance will only pay for 9 of them every 20 days and its the only thing that seems to work.

I wish the medical world would wake up and realize how serious and life destroying ch could be. Then maybe there would be better insurance and prescription support for clusterheads. They probably dont make enough money on them since they are sort of rare.

Title: Re: Current meds.
Post by thebbz on Dec 7^th, 2006, 10:13pm

This may help ya
http://www.patientadvocate.org/help.php
Insurance companies..uug
jb

Title: Re: Current meds.
Post by 5yearsteve on Dec 9^th, 2006, 2:50am

Maybe not so good now. 2 today. I think I'll try to up the dopomax to 100mg a day as ordered.

Title: Re: Current meds.
Post by tanner on Dec 9^th, 2006, 5:17am

All you can do is keep trying my friend. I am glad that you have found some relief :)

I consider any change to be a good thing....it means I'm still alive and fighting ;)......Tim

edited to add...tried O2?

Title: Re: Current meds.
Post by 5yearsteve on Dec 9^th, 2006, 4:54pm

No, never tried O2. I really never needed too. The maxalt has always pretty much done the trick. (except last night) I had a stubborn one that just wouldnt go away, finally fell asleep about 3 hrs into it with an ice bag on my head. I have another appt soon and want to ask about O2 though. I am also going to try the red bull trick also.

Title: Re: Current meds.
Post by bothofus on Dec 9^th, 2006, 11:43pm

How much longer do you have on the Dexamethasone?
I was prescribed this around 10 yrs ago and it worked wonders. However, it did change my thinking and reasoning drastically. It took me 2-3 weeks after stopping it to get back to some state of normalcy.
Not trying to scare you, just be aware if you find yourself thinking unreal thoughts. I remember too that I was hungry all the time.

I'm not trying to play doctor here, just giving you a heads up.

Carl

Title: Re: Current meds.
Post by 5yearsteve on Dec 10^th, 2006, 12:19am

4 days left of the dex. Tomarrow will be the first day of the tapering down to 1 a day. I have noticed a little weirdness but didnt know if it was the topomax or the dex. Both of them are new to me. I dont scare too easy when it comes to the side effects I just worry about being randomly drug tested (I work in aviation) and what my employer would do when they found all of this crap in my system or if they will even show up. I really dont have no dizziness or anything so I cant see missing work unless im having an attack. I havent read much about the dex and was going to make another post about it. It seems like there isnt much info about it and not many people have tried it.

Title: Re: Current meds.
Post by 5yearsteve on Dec 16^th, 2006, 5:26pm

New game plan.

After using all of the dexamethasone, relapsed back to 3 ch a day.

Topamax (100mg/day) discontinued (cold turkey) per neuros orders. (It was giving me headaches? go figure.)

Starting today.

New dexamethasone taper. (this is great stuff).

Elavil (Amitryptyline) 25mg 2 hrs before sleep. (Dont know what to expect).

Imitrex spray. (Needed something to work faster than the maxalt when at work). Plan on getting the pen inj also.

Title: Re: Current meds.
Post by brewcrew on Dec 17^th, 2006, 9:43am

It often takes years to find the right meds and combos of meds that work for us. Keep at it. My magic bullet is methysergide maleate, better known as Sansert. You can't buy it as Sansert in the States anymore because Sandoz doesn't sell it in the States (something about those pesky profits or something). Anyhow, you CAN get a compounding pharmacy to make it for you as it's still completely legal. You might want to talk to your doc about it. PM me if you would like to know more.

And speaking of legal, you should not have to worry about being pee-pee tested if you are taking legally prescribed substances and are under the care of a physician. Give 'em all the pee or hair follicles they want - you have a prescription.

Good luck, and give 'em hell!

Title: Re: Current meds.
Post by E-Double on Dec 17^th, 2006, 10:32am

YOU SHOULD NOT be doing another roid taper so quickly.

If you have found that (like all of us) an icrease has occured upon finishing then you may not be at a therapeutic level with your preventatives.

Be careful with the roids.

Short term ever so often.

E

Title: Re: Current meds.
Post by writer on Dec 17^th, 2006, 1:04pm

As to Brew Crew's recommendation of Sansert as a med, I hope his doctor is testing his blood every few months--?
That is required for Sansert patients because it may cause hardening of lung tissue (I forget the scientific name) after a long period of use.

Sansert is an extremely close relative of LSD and is not without dangerous side effects. (I took it for a time and while it stopped the headaches, it made me nauseatingly woozy.)

Because of the potential for lung tissue hardening, no matter the hype otherwise, I believe that is why the drug is no longer sold in the USA.

Title: Re: Current meds.
Post by UN solved on Dec 17^th, 2006, 1:36pm

Sorry guys... it is illegal for a compounding pharmacy to make Sansert. If they did do so, they now become a manufacturer w/o a license. (Illegal) But don't worry... You can still get Sansert by ordering it for Canada, but many docs are hesitant to do that.

The Imitrex injs are a good thing to try. It has always helped me. If you haven't tried O2 ... that should be a priority! (Cheap, pretty safe, & effective for many).

Goodluck

UNsolved

Title: Re: Current meds.
Post by brewcrew on Dec 17^th, 2006, 1:41pm

Sorry, guys. First off, it's fibrosis of the kidneys, not the lungs, and it's very rare. Even so, one must take a one-month holiday every six months to be on the safe side.

Second, it is NOT illegal for a compounding pharmacy to make methysergide maleate. Tel-Drug has made it for me twice now. They are Cigna's in-house pharmacy. I also found several others that were more than willing to make it for me - they just wanted to charge a whole lot more.

Title: Re: Current meds.
Post by 5yearsteve on Dec 17^th, 2006, 3:37pm

Thanks for all of the input everyone. Thats what is so great about this board. I am always asking my neuro about medications and methods that I learn from here and she is quite suprised that I know so much about the drugs used and about ch in general.

E-Double, I have discussed the second roid taper with my neuro and she seems quite sure that it will be perfectly fine for me to do.

Title: Re: Current meds.
Post by brewcrew on Dec 17^th, 2006, 3:40pm

on 12/17/06 at 13:04:01, writer wrote:

Oh, and it's flank pain, lower back pain, and difficulty urinating that are the first warning signs. There's nothing that can be detected via blood test in the early stages. Blood tests are more important when you're taking lithium.

Everything we take to combat this m***** f***** has potentially dangerous side effects. If I could live with the pain, I'd take nothing.

It's no longer sold as "Sansert" because the manufacturer decided to stop selling it. The active chemical in it is just that - a chemical. Methysergide maleate. It's still perfectly legal and can be obtained with a prescription.

PFDAN

Title: Re: Current meds.
Post by 5yearsteve on Jan 22^nd, 2007, 7:29pm

Well, here we go again. New doc new meds.
I like to keep this thread updated because I have learned so much by reading about what others have tried and what worked and what didn't.

Prednisone: 60mg for 10 days then immediate taper to 10mg. (new doc couldnt believe the short 1wk dex tapers previously prescribed by other neuro).

Lithium: 300mg for 5 days then 600mg until end of cycle.

Imitrex injections: Doc wants me to only use 3 a week if I can help it and use the 02 mainly.

Oxygen: At last!!

New neuro is in Pittsburgh. He really seems to know his medicine and methods in treating CH. I have told him about the meds that I was currently taking and have tried. He discontinued them all. He wasnt a fan of Topomax either.

I was worried about only using 3 imitrexes a week but with this current combo I have not had a HA for 3 days now. Probably will have to see what happens after the taper of the prednisone.

He also stated that If I started having CH's again that he would add verapamil along with the lithium.

Title: Re: Current meds.
Post by Guiseppi on Jan 22^nd, 2007, 10:08pm

Only an add to your lithium part. I'm 47, male, 190 pounds. I take 1200 mg a day lithium when on cycle, blocks 90% of headaches. 02 and cafergot handle the rest with an occasional imitrex jab when it goes sideways.

I do weekly then monthly blood draws to monitor lithium levels. My wife has all the literature on lithium toxicity and knows what to watch for. I've been doing the lithium for about 15??? (roughly) years have had almost no side effects. I pee a lot the first week or two and get a little bit of the tremors but nothing else. Hoping it works as well for you.

Guiseppi

Title: Re: Current meds.
Post by froggy on Jan 23^rd, 2007, 12:59am

Hey there, I agree with most of the posts (the other parts I either don't understand for lack of knowledge or we haven't tried yet) but My husband was on the Sansert and did really well on it. He did have to get his liver MRI'd every 6 months while on it and it checked out just fine. Don't know about the illegal part of it but do know the methysergide maleate is the generic name for it.

Do agree about the politics and $$$$bucks concerning keeping it around in the U. S. it was expensive and there wasn't a generic available.

Sounds like you're ready to get caught up in a whirl wind of chemicals - like the rest of the posters on this thread, I agree with trying O2 ASAP. Look up Mr. Happy, he's a wealth of info. on this topic. Maybey even a Monster Khaos drink to see if it works. My hubby is a very hard to tread chronic and it's knocking his 5 Kips and under out like right now - yahoo!

Great luck to you,
Froggy

Title: Re: Current meds.
Post by gonz2112 on Jan 23^rd, 2007, 9:48am

on 01/22/07 at 19:29:34, 5yearsteve wrote:

Imitrex injections: Doc wants me to only use 3 a week if I can help it and use the 02 mainly.

Check the Imitrex tip on the left. I am able to abort with half a dose. In the past I have used a third of a dose and it was effective most of the time. A kip 6 or above would usually require more.

Hopefully the O2 will work well for you and you won't need the Imitrex as much anyway. I highly suggest using a Clustermasx (http://www.clustermasx.com/)

Mark