Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Scratch one more
        
(Message started by: Gator on Dec 5th, 2007, 10:22am)
Title: Scratch one more
Post by Gator on Dec 5th, 2007, 10:22am
I have heard some people say that when their cycle was raging, the DHE nasal spray (migranal) would give them a break for (sometimes) up to a few days.  It also kind of knocked them on their asses and let them get some sleep, which would be a really good thing right now.

I discussed this with my neuro during my last visit and we decided to try something different.  He gave me several sample packages and the following instructions:

Take the first dose as per the package instructions, then, rather than following the directions for a full dose, spray once into each nostril (half a dose) twice a day.

The idea was to get it into my system and then keep it there for several days to see if that would give me a break.  Well, it didn't work.  Not only that, but because of or incidental to trying it, my nose and sinuses are plugged/running/driving me effing crazy.  Not being able to breathe worth a shit sux royally, not to mention the wonderful side effect of increased hits and heavy shadows.

What can I say, we're grasping at straws here as none of the usual (and several non-standard) prevents have worked.  Even the last round of pred only worked for a couple days before the hits started coming back.  I'm lucky that oxygen works to abort, but damnit, I need a break.  Short of a hospital visit for DHE infusion, which I cannot afford, this seemed like an idea, even if not a good one.

Why do I get my hopes up every time we come up with another treatment idea, when I know that everything I have tried has failed?
Title: Re: Scratch one more
Post by Sean_C on Dec 5th, 2007, 10:38am

on 12/05/07 at 10:22:58, Gator wrote:
Why do I get my hopes up every time we come up with another treatment idea, when I know that everything I have tried has failed?


I've walked in your shoes Mike, many times :-/ However, just because something hadn't worked in the past, doesn't necessarily mean it won't work this time.

My sinuses get all wacked out during cycles, it definately makes the hits worse because of the difficulty breathing. Thomas mentioned that over the counter Walgreens nasal spray that seemed to give him some relief, might be worth a try.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1196106369;start=0#0

If there's anything I can do, you have my number.

Keep the faith bro,

Sean...........................
Title: Re: Scratch one more
Post by thomas on Dec 5th, 2007, 10:40am
I haven't used the nasal DHE, but the last two nights I've been given a shot of DHE right in the tush.  I've had two nights worth of sleep now in the last 34 days.  DHE has always given me a minimum of 12 pf hours.  But the only ways I've used it are shots and IV, so I can't vouch for the nasal option.  Is it possible for your doctor to instruct your wife on how to administer the shot? (It goes in yer butt, so you have to have someone else do it for ya).  

See if you can use some 4-way to clean up your nasal area, it might also help with the head a bit.  ;)
Title: Re: Scratch one more
Post by Sean_C on Dec 5th, 2007, 10:54am

on 12/05/07 at 10:38:32, Sean_C wrote:
If there's anything I can do



on 12/05/07 at 10:40:20, thomas wrote:
(It goes in yer butt, so you have to have someone else do it for ya).


I draw the line here though  ;;D You'll have to suffer LOL ;;D

J/K pf wishes headed your way bro.

Cheers,

Sean............................... ;;D
Title: Re: Scratch one more
Post by Guiseppi on Dec 5th, 2007, 11:19am
Damn Gator, sorry you're getting so beat up, hang in there. :-[

Guiseppi
Title: Re: Scratch one more
Post by LeeS on Dec 5th, 2007, 11:48am
Sorry to hear it Mike - this has been going on too long :(

Keep battling - have you tried taurine as a supplement (sorry - can't remember)?

-Lee
Title: Re: Scratch one more
Post by Ray on Dec 5th, 2007, 1:02pm
I've used the DHE nasal spray.  It does clog up your nose.  I used it only on one side, one spray, then waited 15 minutes and another. (same drug vial)

It gave me some PF time afterwards, maybe a day.

Good luck Mike, sorry you're having a rough time.

Remember no Imitrex for 24 hours after the DHE.

Ray
Title: Re: Scratch one more
Post by black on Dec 5th, 2007, 1:47pm
sorry mike.i really cant think anything to say except wishing u have a pf time soon.stay strong and positive as possible.
Title: Re: Scratch one more
Post by Sandy_C on Dec 5th, 2007, 3:42pm
Aw Mike, I'm so sorry you are having such a hard time.  Sending you hugs, babe.  

If I can help you in any way, please let me know.  You've given me so much advice and support over the years, it's my turn.

Sandy
Title: Re: Scratch one more
Post by Grandma_Sweet_Boy on Dec 5th, 2007, 3:45pm
Mike - I'm so sorry to hear that you continue this brutal fight without a break.

Sending you all the PF wishes I can drum up.

Carol
Title: Re: Scratch one more
Post by lionsound on Dec 5th, 2007, 4:04pm
[smiley=hug.gif]
Title: Re: Scratch one more
Post by Annette on Dec 5th, 2007, 4:08pm

Sorry Mike to hear you are getting hit hard and that the DHE spray didnt work ! I understand how hard it is to get ones hope up only for it to be dashed. I believe that has happened to just about every CHer.

Sending hugs and prayers for painfree days and nights.

Hang tough Mike, this too will pass.
Title: Re: Scratch one more
Post by Charlotte on Dec 5th, 2007, 4:13pm
Sorry, Gator.

Charlotte
Title: Re: Scratch one more
Post by Gator on Dec 5th, 2007, 7:28pm
Thanks y'all.  I really only started out to report a new twist on an old treatment in case it might help someone.  I guess I got caught up in my own little pity party.  Sorry.  The fact that this didn't work for me shouldn't deter anyone else from trying if their doctor prescribes it - nothing else has worked for me, either.  I'm one of those nasty little statistics that blows out the bell curve - a late onset, intractable, primary chronic.  :P  My neuro loves me, though.  He uses me as a crash test dummy for his neurology residents at least once a year for the past couple years.  They get to ask questions and learn about CH and I get to promote clusters, OUCH and ch.com to a new crop of neurologists every year.  

Thanks for the love and support that only this family can give.  I am standing strong once again.

Onward and upward!
Title: Re: Scratch one more
Post by Kevin_M on Dec 5th, 2007, 8:02pm

on 12/05/07 at 19:28:18, Gator wrote:
Thanks for the love and support that only this family can give.  I am standing strong once again.


Despite the news of no break for you Michael, it's good to hear.  :)  Reminds me all of that poem you wrote, about the armor getting heavy at times from battling. ;)

Here for you too, bud.
Title: Re: Scratch one more
Post by E-Double on Dec 5th, 2007, 8:35pm
u need to find a way to get your ass in the hospital.

I gotta tell ya that was the best thing i ever did.

It pretty much lasted up until now from july not 100 % pf but damn near close to it.

getting an increase as of late but nothing can't handle.

good luck brother and if in need of anything ;) holla pm styles
Title: Re: Scratch one more
Post by nani on Dec 5th, 2007, 11:32pm
:(   [smiley=hug.gif]

Sorry, Mike.
If you haven't... maybe you could give the taurine supplements, and the 4-Way a try? 4-Way worked for me today.
Sending lots of pf wishes and prayers...
love to you and Jane, nani  :-*
Title: Re: Scratch one more
Post by kcopelin on Dec 6th, 2007, 11:01pm
Aw Mike, I'm so sorry you're gettin' slammed.  You've been such a great help for so many-if there's anything I can do-just PM me.  
Praying for a break for you brother.

PFDAN y'all,
kathy
Title: Re: Scratch one more
Post by Jill on Dec 7th, 2007, 8:13am
Hey Gator,

I am sorry that you are having such a rough time. And that the nasal spray did not work like you wanted it to.

Nasals sprays are my worst enemy, so my doctor decided to set me up with the DHE injections. There have been a couple of times when he gives me instructions on using the injections routinely for a day or so instead of just as an abortive.

This might be an idea since you can't do the in hospital route.

Just a thought.

Jill
Title: Re: Scratch one more
Post by thomas on Dec 7th, 2007, 8:48am

on 12/05/07 at 23:32:16, nani wrote:
:(   [smiley=hug.gif]

4-Way worked for me today.

Really glad to hear that.  Maybe more folks will believe now. ;)
Title: Re: Scratch one more
Post by thomas on Dec 7th, 2007, 8:50am

on 12/07/07 at 08:13:31, Jill wrote:
There have been a couple of times when he gives me instructions on using the injections routinely for a day or so instead of just as an abortive.

This might be an idea since you can't do the in hospital route.

Just a thought.

Jill

That's the way we use it, it's not really that good as an abortive for me, but it's great for a nice 8-24 hour break so you can rest up.  I did two shots Monday and Tuesday night this week, now I'm only getting hit 2-3 times a day, and they are very mild.  Are the shots an option for you, Mike?
Title: Re: Scratch one more
Post by sandie99 on Dec 10th, 2007, 6:04am
Mike, I'm sorry that the experiment didn't turned out as you hoped. That's the down side with ch treatments; it's so hard to find that one treatment which works wonders. I do hope that it will appear for you.

PF wishes,
Sanna
Title: Re: Scratch one more
Post by danielpeterson on Dec 11th, 2007, 10:51am
MIKE! --this may sound goofy but it works for me, and I AM not really a novice to the CH scene. IN FACT in my scaredy-cat days I ran to ER twice.... I know that I am a "rightie" and that an MD called me a CR.
AND I know that the MD John Sarno is on to something when he says that when the pain starts, talk to your head, yes, TALK to your head. Tell it that you know this is a harmless oxygen deprivation, an attempt to distract you from underlying emotional issues that are even more painful to you. "Your cover is blown," you say. He gets rather mean to the little guy (for we are just parts of a whole, you know) so I do it in a more spiritual way.
And he has ten other steps (in the book The Divided Mind), like not allowing the little guy's pain to dissuade you from doing physical activity or the things you love to do.
I think this is in line with your motto,  "Eating poison is like holding onto resentment and anger, and waiting for the other person to have a hissy fit," or some such.
LOVE
Title: Re: Scratch one more
Post by vietvet2tours on Dec 11th, 2007, 10:58am

on 12/11/07 at 10:51:54, danielpeterson wrote:
MIKE! --this may sound goofy but it works for me, and I AM not really a novice to the CH scene. IN FACT in my scaredy-cat days I ran to ER twice.... I know that I am a "rightie" and that an MD called me a CR.
AND I know that the MD John Sarno is on to something when he says that when the pain starts, talk to your head, yes, TALK to your head. Tell it that you know this is a harmless oxygen deprivation, an attempt to distract you from underlying emotional issues that are even more painful to you. "Your cover is blown," you say. He gets rather mean to the little guy (for we are just parts of a whole, you know) so I do it in a more spiritual way.
And he has ten other steps (in the book The Divided Mind), like not allowing the little guy's pain to dissuade you from doing physical activity or the things you love to do.
I think this is in line with your motto,  "Eating poison is like holding onto resentment and anger, and waiting for the other person to have a hissy fit," or some such.
LOVE


 Troll.
Title: Re: Scratch one more
Post by danielpeterson on Dec 11th, 2007, 11:05am
WHAT in the world is a troll... is there an "enemy image" lurking around here somewhere?
MOTTO: it may be a Beast, but it is the best beast we have.
Title: Re: Scratch one more
Post by thomas on Dec 11th, 2007, 11:10am

on 12/11/07 at 10:51:54, danielpeterson wrote:
MIKE! --this may sound goofy but it works for me, and I AM not really a novice to the CH scene. IN FACT in my scaredy-cat days I ran to ER twice.... I know that I am a "rightie" and that an MD called me a CR.
AND I know that the MD John Sarno is on to something when he says that when the pain starts, talk to your head, yes, TALK to your head. Tell it that you know this is a harmless oxygen deprivation, an attempt to distract you from underlying emotional issues that are even more painful to you. "Your cover is blown," you say. He gets rather mean to the little guy (for we are just parts of a whole, you know) so I do it in a more spiritual way.
And he has ten other steps (in the book The Divided Mind), like not allowing the little guy's pain to dissuade you from doing physical activity or the things you love to do.
I think this is in line with your motto,  "Eating poison is like holding onto resentment and anger, and waiting for the other person to have a hissy fit," or some such.
LOVE

Bio-feedback and coping mechanisms can be efective, sometimes.  But your doctor is a moron if he thinks CH is caused by oxygen deprivation.
Title: Re: Scratch one more
Post by Clusterman on Dec 11th, 2007, 2:13pm
Mike,
I've been a long time sufferer and have come across my own method recently. It worked wonders for me. Every cycle I told myself I hated all the chemicals but ultimately I went beck to anything that relieved the pain. Check out the experience I had just a couple weeks ago. I don't know if it will work for you but it does it is a great solution, off the shelf, better than drugs, and pretty cheap (about a $40 investment into a pain free life). I got one of those inhaler machines that you can add menthol oil to. Twice a day and whenever I felt a headache coming on. My headaches are gone within a week and I was in a series head banging cycle with at least five ch a day. Hope this helps.
Title: Re: Scratch one more
Post by thebbz on Dec 11th, 2007, 2:41pm
I hate it for ya Gator. You know the grill, hang tough.
the demon hater deluxe
thebb
Title: Re: Scratch one more
Post by Beastfodder on Dec 11th, 2007, 6:03pm
Gator - sorry it's bad right now.

If you can stand the heat try steam as a decongestant, it's not a 24 hour fix but does clear things up for you to get on with things and can be repeated without fear of side effects.

All the best , might be worth thinking about the book - if the CH doesn't clear up you should be able to hit yourself over the head with it. Then it'll come in handy to treat any resulting back pain.
Title: Re: Scratch one more
Post by Gator on Dec 11th, 2007, 9:42pm

on 12/11/07 at 10:51:54, danielpeterson wrote:
MIKE! --this may sound goofy


No!  Ya think?


Quote:
but it works for me, and I AM not really a novice to the CH scene. IN FACT in my scaredy-cat days I ran to ER twice


So only scaredy-cats go to the ER?  Lots of nice people here will love reading that.


Quote:
.... I know that I am a "rightie" and that an MD called me a CR.


Chronic Retard?  


Quote:
AND I know that the MD John Sarno is on to something when he says that when the pain starts, talk to your head, yes, TALK to your head.


There.  Fixed it for you.


Quote:
Tell it that you know this is a harmless oxygen deprivation,


If the problem was oxygen deprivation, why would constricting the blood vessels via a triptan (resulting in less oxygen carrying blood to the head) cause relief in mere minutes?  Either you or your doctor or both are friggin idiots.



Quote:
an attempt to distract you from underlying emotional issues that are even more painful to you. "Your cover is blown," you say. He gets rather mean to the little guy (for we are just parts of a whole, you know) so I do it in a more spiritual way.


ROFLMAO  What a maroon!


Quote:
And he has ten other steps (in the book The Divided Mind), like not allowing the little guy's pain to dissuade you from doing physical activity or the things you love to do.


The beast stops me for 5 - 15 minutes with abortive and for about 90 minutes without.  The rest of the time I do what I want to do.


Quote:
I think this is in line with your motto,  "Eating poison is like holding onto resentment and anger, and waiting for the other person to have a hissy fit," or some such.
LOVE


My tagline says what I mean it to say.  I don't need some troll redefining it for me, thank you very much.

I have cluster headaches.  Good luck with whatever problem you have.  May I recommend a good shrink?  ::)
Title: Re: Scratch one more
Post by Gator on Dec 11th, 2007, 10:25pm
Once again, I thank everyone for the support (and the laughs).  Contrary to what most of those who know me think, I am totally mentally sane and stable.  It's everyone else who is crazy! :P ;;D

Aborting individual hits is not normally a problem for me.  100% oxygen at 15 lpm via a clustermasx works almost as fast as imitrex injections for me.  I also have coffee, energy drinks, ice and the odd trex jab when I need them.  Thanks to Thomas' post, I will try the 4-Way.  I hope it works for me as well as it does for Thomas, Bill and others.  It's always good to have a backup plan.

My biggest problem is finding a legal preventative that works that I can afford.  I've done all the "standard" prescription meds and several non-standard ones.  I've done the vitamin/supplement/herbal thing (except for taurine) as well with no relief.  I plan on ordering some taurine and starting a trial of that next payday.  Inpatient anything is beyond my reach right now.  Trust me, I'd have already tried DHE infusion or the Histamine Desensitization treatment if I could afford it.  

I know many here are getting amazing results with shrooms, seeds and LSD.  I thoroughly support those who get relief from hallucinogens, but it is not something I am prepared to do right now nor do I wish to get into an argument about why I should or shouldn't.  I respect and support your decision to go that route, please respect mine not to.  

I love this place.  The knowledge and support this group gives can't be found anywhere else on earth.  I am proud to be a member of this family.

LYG,

Mike
Title: Re: Scratch one more
Post by thomas on Dec 12th, 2007, 10:35am

on 12/11/07 at 22:25:54, Gator wrote:
Trust me, I'd have already tried DHE infusion or the Histamine Desensitization treatment if I could afford it.  

Have you talked to your doctor about DHE injections that can be administered at home?
Title: Re: Scratch one more
Post by Gator on Dec 12th, 2007, 11:49am
Yes, I did, T.  We decided to try the DHE nasal route first.  On my next trip to Oklahoma City, I am going to stop by and get a script (and samples if he has them) for the injectables.  Hopefully, I won't have the side effects I had with the nasal stuff.

We'll see how that goes.
Title: Re: Scratch one more
Post by brewcrew on Dec 12th, 2007, 12:27pm

on 12/12/07 at 11:49:47, Gator wrote:
Yes, I did, T.  We decided to try the DHE nasal route first.  On my next trip to Oklahoma City, I am going to stop by and get a script (and samples if he has them) for the injectables.  Hopefully, I won't have the side effects I had with the nasal stuff.

We'll see how that goes.

Gator - I've done both nasal spray and IV push. No stuffiness with the IV. Haven't had the IM injections.


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.