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(Message started by: FramCire on Sep 14th, 2006, 9:32am)
Title: More tips please
Post by FramCire on Sep 14th, 2006, 9:32am
OK, i have been around here for a while and I have read a million tips but I need more.  For whatever reason I just can't find anything to work right now.  The following is a list of things I have tried (that i rememeber).  I would love to try CHuck's (I think that is his name) method but I don't have the brain capacity to read and understand it right now.

1.  Maxalt (not used since day 1 because I tried something else)
2.  Migranal (started day 3 once Maxalt had 24 hours to get otu of system
3.  Verap (already on)
4.  Melatonin (already on)
5. frozen peas to head
6.  heat to jaw
7. Red Bull
8.  Coffee/mountain dew
9. O2
10.Ultracet (used to help the jaw pain)
11. Vicodin (ok,this is stupid but I have got desperate.  I also have neck pain that maybe CH reltaed or related to a disk problem)
12. Shower (hot and cold)
13 Mangosteen juice (yes, I am trying everything I got here)

The migranal was working OK during the night for a few nights but it was USELESSS last night.  I have imitrex inj I can try tonight once i have given the Migranal enough time to get out of my system.

My jaw hurts, my head hurts, it tastes like metal in my mouth, and Im not sleeping.  

Any other ideas?


Thank God for my wife, kids and you guys.  As much pain as I am in, I am not suicidal nor even crazy (yet).  Any more tips would be appreciated as banging my head on the floor is looking might y tempting right now (I wont be doing this however).
Title: Re: More tips please
Post by Melissa on Sep 14th, 2006, 9:38am
Do you have a heart condition as I don't see imitrex or zomig on that list?  Also what about Zyprexa (E2 is that how it's spelled?), Lithium in combination with your verap (what dose verap are you on?) or forgoing all the RX meds (detoxing slowly) and then do the CB method?

Sorry your in pain Fram. :(

hugs,
mel
Title: Re: More tips please
Post by FramCire on Sep 14th, 2006, 9:42am

on 09/14/06 at 09:38:01, Melissa wrote:
Do you have a heart condition as I don't see imitrex or zomig on that list?  Also what about Zyprexa (E2 is that how it's spelled?), Lithium in combination with your verap (what dose verap are you on?) or forgoing all the RX meds (detoxing slowly) and then do the CB method?

Sorry your in pain Fram. :(

hugs,
mel



I tried Maxalt because the MLT works for me until this past week when the beast ramped back up hard.  Then I went on Migranal which is what my headache specialist wanted me to take.  You cant take other triptans (like imitrex) with these.  I will go to trex 24 hours after my last migranal dose (yesterday evening 5pm)

I am also on a prednizone taper that isn't working which always did in the past.

I will call my headache doctor this morning and see what he suggests but honestly I trust you guys more.
Title: Re: More tips please
Post by Melissa on Sep 14th, 2006, 9:53am
Woops!  Sorry, i see now that you wrote about the trex.

Well then, how about asking your doc about adding lithium to your verap?  There have been many here who have used the 2 together with some success.  

I'm sorry that there really isn't anything else I can suggest other than sticking your face in front of a vent with the A/C on full blast or dunking your head in a bucket of ice water while taking a hot shower.

I've tried these things, but it's only temporary and doesn't work every time.

Do you have a Clustermasx yet Fram??  
Title: Re: More tips please
Post by kissmyglass on Sep 14th, 2006, 10:00am
lithium
Title: Re: More tips please
Post by maffumatt on Sep 14th, 2006, 10:11am
clusterbusters.com
Title: Re: More tips please
Post by Margi on Sep 14th, 2006, 10:15am
the metallic taste is your mouth is from the verapamil.  That happened to Mike too - he hated it.  

All I could suggest is to maybe add in some magnesium to help with the verapamil side effects.  And to maybe swap out the melatonin for benadryl or dramamine for a few nights?  Mike got way worse when he tried melatonin.  

Hang in there, Fram.  We're pulling for you.
Title: Re: More tips please
Post by FramCire on Sep 14th, 2006, 10:24am

on 09/14/06 at 10:15:41, Margi wrote:
the metallic taste is your mouth is from the verapamil.  That happened to Mike too - he hated it.  

All I could suggest is to maybe add in some magnesium to help with the verapamil side effects.  And to maybe swap out the melatonin for benadryl or dramamine for a few nights?  Mike got way worse when he tried melatonin.  

Hang in there, Fram.  We're pulling for you.



I didnt know the metalic taste was from verap because I have been on it for a year now and it only seems to happen when I am getting hit.  Thanks for the tips to stop it.

Ive been on melatonin for a year now as well.  It was horrible the firts couple nights then was awesome.  Ill have to consider stopping  it though.

I iwll contact my doctor this morning about other options.  Clustermasx is one I shoudl try but O2 isn't even touching them right now so i wasnt sure if it was worht it right now.
Title: Re: More tips please
Post by alchemy on Sep 14th, 2006, 10:29am
Well I've got a huge lump on the back of my head from wall banging and a black eye from digging at it. my tip for you DON'T DO THESE!!!!

I hope you feel better real soon
Title: Re: More tips please
Post by Melissa on Sep 14th, 2006, 10:43am

on 09/14/06 at 10:24:04, FramCire wrote:
Clustermasx is one I shoudl try but O2 isn't even touching them right now so i wasnt sure if it was worht it right now.

3 cycles ago, O2 quit working for me 1/2 way through.  2 cycles ago, it didn't work at all.  I wasn't even going to try it last cycle, as I thought it wasn't working, so why waste my time?  Until encouragement from people here AND coughing up the money for a Clustermasx.  

Wouldn't you know it, it began working for me again AND it killed them within 20 min every single time.  

It is worth a try, that's all I'm saying.

hugs,
me
Title: Re: More tips please
Post by georgej on Sep 14th, 2006, 10:45am

on 09/14/06 at 10:29:10, alchemy wrote:
Well I've got a huge lump on the back of my head from wall banging and a black eye from digging at it. my tip for you DON'T DO THESE!!!!

I hope you feel better real soon


Ditto to the above.  Also don't get or use one of those sinus/migraine masks that plugs into the wall and heats up.

Trust me on this--please.

Have you tried Charlie's circulatory technique?  It can help some people to abort, or even just to cope.

Best,

George
Title: Re: More tips please
Post by imnotbub on Sep 14th, 2006, 11:09am
Has anybody suggested seeds? I don't know much about them, or even what kind are used, but there was a great deal of talk at one time about seeds.

Steve
Title: Re: More tips please
Post by FramCire on Sep 14th, 2006, 11:09am

on 09/14/06 at 10:45:54, georgej wrote:
Ditto to the above.  Also don't get or use one of those sinus/migraine masks that plugs into the wall and heats up.

Trust me on this--please.

Have you tried Charlie's circulatory technique?  It can help some people to abort, or even just to cope.

Best,

George



Seriosuly, I will try and learn Charlie's tehcnique when out of cycle.  It confuses me when I try and read it right now.  

It is time to order a clustermasx though.  You'd think I would be smart enough to have already bought one.
Title: Re: More tips please
Post by Margi on Sep 14th, 2006, 11:48am
I'm sorry - my post was misleading.  Magnesium doesn't stop the metallic taste that verapamil can cause.  It only helps with the ... uh ... binding effect.  I believe the expression BobP used about magnesium was **** through a goose. ;)

The only thing that got rid of that taste for Mike was going OFF the verapamil.  (Doing THAT also ended his cycle, by the way - but don't get me started on that.  I make enemies real quickly when I pooh-pooh the chemical meds.)  
Title: Re: More tips please
Post by Linda_Howell on Sep 14th, 2006, 12:41pm

 Framcire,

   Yes.....Charlies technique needs to be practiced when you are not getting hit, Once you get the knack it can be done as soon as you feel a hit coming on.  I asked him to do it himself once in Nashville and with-in mins. I felt the added blood flow and heat in his hands.   I have tried it many times and it DOES work for me, but only up to a certain point.

Let me see...any other tips I can give you???  Vigorous excersize (push-ups, sit-ups)

If shocking your system by standing under a cold shower is too extreme, how about dousing just your whole head in the sink.

Also the difference between the clustermax and an ordinary non-rebreather is really remarkable and I do suggest you get one.

I feel so frustrated in not being able to help you more.. :'(
Title: Re: More tips please
Post by FramCire on Sep 14th, 2006, 1:01pm
Since I couldnt get seeds or clustermasx today, my local pharmacy is going to make me some lidocaine to be taken iintranasallly??

My personal physician found this article helpful in looking for a new treatment.

http://www.aafp.org/afp/20050215/717.html


Anyway, I just got kneed in the head by my 2 year old (by accident) and I didn't even react.  I am very glad because he certainly did not mean to do it and I am so on edge right now and he's only 2.  

Anyway, let's hope this lidocaine thing works well.  Otherwise Im banking on imitrex tonight.  Migranal will take a baack seat for now.

Xyprexa is another thought.  but it and lithium worry my doctor because of side effects.  For some strange reason side effects don't worry me right now.
Title: Re: More tips please
Post by FramCire on Sep 14th, 2006, 1:03pm

on 09/14/06 at 12:41:45, Linda_Howell wrote:
 Framcire,

   Yes.....Charlies technique needs to be practiced when you are not getting hit, Once you get the knack it can be done as soon as you feel a hit coming on.  I asked him to do it himself once in Nashville and with-in mins. I felt the added blood flow and heat in his hands.   I have tried it many times and it DOES work for me, but only up to a certain point.

Let me see...any othe

r tips I can give you???  Vigorous excersize (push-ups, sit-ups)

If shocking your system by standing under a cold shower is too extreme, how about dousing just your whole head in the sink.

Also the difference between the clustermax and an ordinary non-rebreather is really remarkable and I do suggest you get one.

I feel so frustrated in not being able to help you more.. :'(



Linda,

My headaches became worse after some excerise on Monday.  I am scared to try that again.  

Please call me Eric.  

Don't worry about how much you help.  Honestly, you persoanlly have been a HUGE help (as have a lot of people) but as we all know, we can be quite helpless in this battle no matter what we try.
Title: Re: More tips please
Post by E-Double on Sep 14th, 2006, 7:18pm
Eric,

I'm so sorry you're having a refractory period........sucks!!!!!!!!

Zyprexa has been kick ass and has worked when other meds have not.

Wishing you PF times!!!

Eric (I was here first :-*) ;)
Title: Re: More tips please
Post by FramCire on Sep 14th, 2006, 8:14pm
Eric,

You used it as an abortive, right?

Once I give this lidocaine a shot..... that may be next.

I couldn't get onto the clustermasx website.... maybe a typo..... Ill try again.
Title: Re: More tips please
Post by E-Double on Sep 14th, 2006, 9:03pm
Yes as an abortive.

At onset.....2.5 (half a pill) has aborted within 7 minutes.
Title: Re: More tips please
Post by FramCire on Sep 14th, 2006, 10:24pm
lidocaine was a fuailure

2.5 down the hatch... thanks E-Dub  lets see how it works
Title: Re: More tips please
Post by Charlie on Sep 15th, 2006, 2:19am
My theory is that so much exercise is general rather directed like my technique which certainly does draw circulation to one or two areas.

Just my take though.

Try everything and rant away.

Charlie
Title: Re: More tips please
Post by BarbaraD on Sep 15th, 2006, 6:12am
Eric,

Melatonin at night before bed helps me get rest. It gives me the energy to fight during the day.

REd Bull at the first sign usually helps also.

Iced coffee has also been suggested (I still drink mine hot).

Cafergot has always helped me more than trex.

If all else fails ask your doc about DHE-45 IV (q 8 hours for several days usually breaks a cycle).

Hope you're better soon.

Hugs BD
Title: Re: More tips please
Post by nani on Sep 15th, 2006, 6:18am
kudzu
Title: Re: More tips please
Post by FramCire on Sep 15th, 2006, 11:21am
Ok, the 2.5 dose of Zyprexa didn't seem to help so we tried another 2.5 and I did get around 5-6 interupted hours of sleep last night.

However, with the side effects it looks like I masy be off to another doctor (asap) to get a occipital nerve block (I think that's what they call it).

Anyone ever had one of these?
Title: Re: More tips please
Post by ExplodingEyeBall on Sep 15th, 2006, 11:54am
Did you try the Imitrex injections  yet?

I drug my feet on this one for a long time till the lovely people here threatend to hunt me down and kick my ass if I didn't try  it. (Thanks guys)

I will ALWAYS keep an injector around now. I have one less than a foot from my hands as I type this and I keep a few in different locations at home.

I'm out of cycle right now but it is still a comfort just knowing that they are there.


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