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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Im a human guinea pig
        
(Message started by: FramCire on Sep 28th, 2006, 2:08pm)
Title: Im a human guinea pig
Post by FramCire on Sep 28th, 2006, 2:08pm
For those keeping track, I have tried the following:

Imitrex injec:  Believe it or not,, it didn't work for my night HA.  Did for a daytime one.

Maxalt MLT:  Works for me wnough to ride the HA until the end.  Doesn't kill HAs though

Migranal:  Worked for a couple days then NOTHING.

ZYPREXA:  5 for 5 in killing HAs for me (at 5mg) and lets me sleep the rest of the night.

Ultracet and Vicodin:  Does a little for the pain but has helped the nerve pain in my jaw a little.  NOT WORTH trying.

O2:  Works good some of the time for me.  Getting a clustermasx in hopes of more relief.

Ice packs/Cold shower;  Limited relief but doesn't do anything once you take it away.

Elec toothbrush:  Helped the jawpain for a short time.

Lithium:  Haven't taken it long enough

Verapomil:  Seemed t work OK but I became chronic while on it... coincidence?  Maybe don't know.

Topamax:  Might have helped kill a cycle the first time but did nothing the next time.  Side effects sucked (cognitive).

Melatonin:  With verapomil seemed to help expect for this ramp up.

Occipital nerve block:  Worked for a few days (PF with VERY liugth shadows) but wore off in 1 week.

Predizone taper;  Great for a few days usually, then wares off.


I thgink that's all I have tried.  Just a short list for those looking for something new.  All have had some amount of succes excpet lithium which I haven't taken long enough.
Title: Re: Im a human guinea pig
Post by Guiseppi on Sep 28th, 2006, 2:22pm
I'm pulling for the lithium!!!! It's been my frontline preventative for years, I like the fact it has so little side affects. Hoping and praying it works as well for you. I started out with the shotgun approach like you did years and years ago, it's a tough road, good luck!!

Guiseppi
Title: Re: Im a human guinea pig
Post by nani on Sep 28th, 2006, 2:36pm
Sounds a lot like me.  :-/  (before)
I hope you find something, Eric.
pf wishes, nani
Title: Re: Im a human guinea pig
Post by unsolved1 on Sep 28th, 2006, 2:44pm
Yea, that's a list alright. But sadly, I got ya beat. We'll try anything to stop the 'headaches'. Hopefully the Lithium will kick in and help you soon.

Goodluck

UNsolved
Title: Re: Im a human guinea pig
Post by pattik on Sep 28th, 2006, 2:53pm
http://www.clusterbusters.com/ You might want to take a look.  :)
Title: Re: Im a human guinea pig
Post by FramCire on Sep 28th, 2006, 3:36pm

on 09/28/06 at 14:53:16, pattik wrote:
http://www.clusterbusters.com/ You might want to take a look.  :)



I hate to ask but are they legal?  If not, I can't go anywhere near them.

Thanks
Title: Re: Im a human guinea pig
Post by FramCire on Sep 28th, 2006, 4:25pm
I forgot Lidocaine nasal spray 4%:  I didn't wshake it up and it wasnt working.... now when I shake it up I am getting some instant relief from the HA (not the nerve pain in jaw.. use toothbrush)..... but it can be used frequently
Title: Re: Im a human guinea pig
Post by no-one on Sep 28th, 2006, 7:41pm
aren't we all. I tried to post my list but it kept telling me my post was to long  :(

Good luck with the Lith hope it works for you, don't give up there will be something that will work. I keep telling myself that.


"I hate to ask but are they legal?  If not, I can't go anywhere near them. "

unfortunately NO. but the normal test they do for drugs won't show it.  Because once it is ingested it is so close to the normal bodys seratonin that it shouldn't show  up. It would take a specific test for it to show up. At least that is what I have been told.
PF wishes
Title: Re: Im a human guinea pig
Post by andrewjb on Sep 28th, 2006, 10:29pm

on 09/28/06 at 15:36:06, FramCire wrote:
I hate to ask but are they legal?  If not, I can't go anywhere near them.

Thanks

:). hello hope you find something soon. is your concern an ethical/moral one ? andrew.
Title: Re: Im a human guinea pig
Post by thebbz on Sep 28th, 2006, 10:45pm

Quote:
I hate to ask but are they legal?  If not, I can't go anywhere near them.

So are hookers but last I heard business was going strong [smiley=laugh.gif] [smiley=laugh.gif]
Check it out, your just getting started, lots more stuff to try,  the 02 again with a clustermasx
all the best
jb
Title: Re: Im a human guinea pig
Post by FramCire on Sep 28th, 2006, 11:13pm

on 09/28/06 at 22:29:34, andrewjb wrote:
:). hello hope you find something soon. is your concern an ethical/moral one ? andrew.


I don't think it's an ethical issue.  Morally, I don't like to break the law but that's not why I wouldn't try it.

I can't be involved in any illegal drugs without jeopardizing my wife's business.  

I am having a very rough stretch not finding anything that works, BUT I still got to stick with legal means.
Title: Re: Im a human guinea pig
Post by nani on Sep 29th, 2006, 12:32am

on 09/28/06 at 23:13:59, FramCire wrote:
II am having a very rough stretch not finding anything that works, BUT I still got to stick with legal means.


OK... kudzu is legal, and ethical, and moral. You ask for ideas, and I give you this one, over and over. It works for a lot of people. Why have you not even addressed my suggestions? Dude... I was a 5 year chronic, on verap, lithium and enough Neurontin to tranquilize a horse, and I still got hit at least 4 times every single day. I shadowed for most of the rest of the days. Kudzu gave me my life back. WTF? This is gonna be the last time I mention it... I don't need any other reasons to bang my head against a wall. Sorry, bro...I'm feeling pretty frustrated right now.
pf wishes, nani
Title: Re: Im a human guinea pig
Post by Charlotte on Sep 29th, 2006, 12:55am
Good luck, Famcire.

Thank you, Nani.  I appreciated the guidance you've given me.  I did read and think for about a month before I took the kudzu plunge in May.  I think the kudzu kept my headaches from getting even closer together and has entirely eliminated the accompanying migraines.

However, I am also now using Indocin and about 700 mg of neurontin a day.  Each helps, but each alone does not quite do it.   I am still getting hit about every 2 hours 11 minutes, but it is bearable.  I see the neuro Thursday for a follow-up.  I have no idea what to expect from him, this time

Thx, Nani.

Charlotte
Title: Re: Im a human guinea pig
Post by sandie99 on Sep 29th, 2006, 2:20am
This is probably very stupid question, but hey, I'll ask anyway: have you tried Red Bull/other energy drinks?

You mentioned that cold shower/ice packs did give you some relief, so if you haven't tried ice cold energy drinks (and can try what comes to medications & conditions), give it a try.

That's my  [smiley=twocents.gif]

Anyways, I hope that you'll find that something which WILL work on your ch. I'm sure that something WILL.

Best wishes & PF days,
Sanna
Title: Re: Im a human guinea pig
Post by FramCire on Sep 29th, 2006, 9:06am

on 09/29/06 at 00:32:31, nani wrote:
OK... kudzu is legal, and ethical, and moral. You ask for ideas, and I give you this one, over and over. It works for a lot of people. Why have you not even addressed my suggestions? Dude... I was a 5 year chronic, on verap, lithium and enough Neurontin to tranquilize a horse, and I still got hit at least 4 times every single day. I shadowed for most of the rest of the days. Kudzu gave me my life back. WTF? This is gonna be the last time I mention it... I don't need any other reasons to bang my head against a wall. Sorry, bro...I'm feeling pretty frustrated right now.
pf wishes, nani



Nani,

I am sorry i forgot about Kudzu.  As you probably know it can be tough to think straight when in cycle and for whatever reason kudzu got forgotten.  I am hardly ignoring you and I appreciate the suggestion.  I will try and pick some up today and give it a try.  I have no idea which thread you mentioned the amount or how to use it.

I have a ton of respect for you as I have seen how you help people around here in need.  I am sorry that my oversight has obviously frustrated you.  

I have tried energy drinks with limited success.  I also will be picking up some Red Bull (or if there is a better tasting one, let me know) today.  

Back to kudzu.  I hope our local "specialty" store has it.  Otherwise Ill have to drive 20 miles to find some and I wont have time for that today.

Again nani, thank you for the suggestion.

Eric
Title: Re: Im a human guinea pig
Post by Gena on Sep 29th, 2006, 9:38am

on 09/29/06 at 09:06:49, FramCire wrote:
 I also will be picking up some Red Bull (or if there is a better tasting one, let me know) today.  

Eric


http://i2.photobucket.com/albums/y42/gml4u/0906.jpg

Tastes so much better then Red Bull
Title: Re: Im a human guinea pig
Post by SteCo on Sep 29th, 2006, 10:15am

on 09/28/06 at 23:13:59, FramCire wrote:
I don't think it's an ethical issue.  Morally, I don't like to break the law but that's not why I wouldn't try it.

I can't be involved in any illegal drugs without jeopardizing my wife's business.  

I am having a very rough stretch not finding anything that works, BUT I still got to stick with legal means.


Fram, does this help? Directly from CB website
http://www.clusterbusters.com/faqlsa.htm
this was taken from section 10.2 for more reading.
" ....(In the US).... it is not illegal to posess, buy, sell, or cultivate any of them. In fact it is very easy to order non treated seeds over the internet......"

The above is talking about the seeds. Identical to ordering seeds for your garden. In fact a few should land there as they are a nice flowering plant. One thing to keep in mind, it is better to be med free when trying this route. If you lean towards this, focus on the RC ones, as they are used most often by CBr's.

Another bonus with the alt. routes...many report that O2 works even better after getting on this regime.

Good luck with whatever you decide! Just wanted to clarify about the seed option.
SteCo.....................
Title: Re: Im a human guinea pig
Post by Gator on Sep 29th, 2006, 3:17pm
If the reasons for not taking a substance are tied to legality, the seeds may not be a viable option.

Seeds are legal to buy, sell and cultivate, but when prepared for ingestion, they become a Schedule 3 substance.

From Dr. Halpern's presentation at the 06 OUCH Convention:

http://www.ouch-us.org/gatherings/milcon06/halpern-seedsillegal.wmv
Title: Re: Im a human guinea pig
Post by nani on Sep 29th, 2006, 9:03pm
Hi Eric. I'm sorry about my rant. The last thing one of us needs is someone getting on their case about what they choose to try. I think I've spent too much time with teens and pre-teens these last few weeks.  :-/ They look you right in the eye, and ignore what you're saying.
About kudzu, if you can't find any locally, you can get it online at iherb or vitacost.com Since you're getting slammed, I'd recommend going ahead and starting at the dose the bottle recommends (ie: 2 tabs, 3Xday).
Take the doses about 2 hours before you expect the biggest hits. PM me for more info, if you'd like.
Be sure to read up on it, as much as possible.
Sorry again. hugs and pf wishes, nani
Title: Re: Im a human guinea pig
Post by FramCire on Sep 29th, 2006, 9:32pm
Nani,

You have no need to appologize.  I can't say it any simpler.  

I bought kudzu 150mg (I think) caps and I will take them as directed on the bottle.  I also will avoid triptans as I read in another thread.

This week has been good (I started a job, part-time) and bad (getting too many hits and too hard).  With it all I am psyched.  I have mostly functioned well during the hardest hitting time I have had.  I hope to get the clustermasx sometime soon and I find out monday if my O2 regulator will end up being bought for me by my insurance company instaed of renting it.

Anyway, nani, you rule.  If it takes a small rant to get me off my butt, then rant away!

Eric
    \/ nani
[smiley=hammer.gif]  
^^^ Me
Title: Re: Im a human guinea pig
Post by Jonny on Sep 29th, 2006, 10:26pm

on 09/28/06 at 23:13:59, FramCire wrote:
I don't think it's an ethical issue.  Morally, I don't like to break the law but that's not why I wouldn't try it.

I can't be involved in any illegal drugs without jeopardizing my wife's business.  

I am having a very rough stretch not finding anything that works, BUT I still got to stick with legal means.


I guess the pain aint bad enough, eh?

When I was without meds I would have killed someone to stop what was in my head!

Sorry Bro, but your excuse to stop the pain you say you are in is BULLSHIT!!!!!

I would eat Chewys fried balls to stop the pain you say you are having......thats no joke!!!!

Edit to add : Unless your ready to help yourself, nobody can fix you, so stop whining.
Title: Re: Im a human guinea pig
Post by Sean_C on Sep 29th, 2006, 10:42pm
He's right Eric, your a big boy, get help, or suck it up, its all your call bro ;)

Sean..........................
Title: Re: Im a human guinea pig
Post by MJ on Sep 30th, 2006, 1:46am

Ditto
Title: Re: Im a human guinea pig
Post by chewy on Sep 30th, 2006, 8:28am

Quote:
I would eat Chewys fried balls to stop the pain you say you are having......


Your in for a lifetime of pain.


Eric.............Inpatient DHE IV Treatment
Title: Re: Im a human guinea pig
Post by unsolved1 on Sep 30th, 2006, 8:49pm

on 09/30/06 at 08:28:13, chewy wrote:
Your in for a lifetime of pain.


Eric.............Inpatient DHE IV Treatment



Right to the point !! No beatin' around the bush !!  I like that !!  ;)

Good advice too !

Personally, I wouldn't give a F if it's legal or not. If it worked, I'd use it !! NO DOUBT !!

UNsolved   8)


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