Are you staying on the O2 for several minutes after the headache subsides? That sometimes helps with the shadows.

You might try melatonin at night. It helps you get thru without the night hits and lets you get some sleep so you're not exhausted during the day.

What does of verap are you on. May not be enough.

Other than that - energy drinks is about all I can think of.

Go ahead and rant. I've been there where you are since 1999 - you just learn to cope.

I hit the O2 at the first sign of a shadow and stay on it a few minutes after it aborts. If it's above a 5 I usually drink an energy drink with it. That usually does the trick and I'm good for a while. Might try that.

I'm laughing about your "shooting up" on a plane. Did that several times. One time the "attendant" got real upset with me - was in my face wondering what I was going to do with the "used syringe". I was hitting on about an 8 at the time.... Told her, "I'm gonna stick it up your (*&& if you don't get outta my face right before I throw you out this window!" She got outta my face! But I'm not real nice when I'm hitting an 8. (My husband was with me that time and got her calmed down before I hurt her).

Hang in there -- it's usually funny when it's over if you just look for some humor in it...

Hugs BD

Jay, I can't use verap (lowers my BP too much) but someone will be along to answer that one for you.

Are you using the O2 properly. (At least 15 liters per minute with a non-rebreather mask).

Helen can help with the Melatonin over there. I don't know what it's called. We get it over the counter here.

Hang in there -- others from the UK will be along to help you. I'm lost when it gets out of the "colonies".

Hugs BD

Hi Jay,

A full year of shadows would really suck.  I'm sorry they haven't let up for you. 

Now I've never had them that long so I can only comment on verapamil.  Are you using the regular release or sustained release formulation?

Initially my Neuro put me on SR and I have rather mixed results.  It was only after I started using RR that I really experienced a benefit. 

I take 400mg as follows: 160,7am/120,2pm/120,10pm.  This strategy has brought me some real relief.  Of course YMMV 

Be careful with energy drinks and verapamil.  Verapamil nad the Taurine in energy drinks are both calcium channel blockers.  I can add 1000mg of Taurine to my 400mg of verapamil without any bad effects but I had one very bad night after drinking two.

Good luck...

-Dennis-

Verapamil got my major clusters to go away, but it didn't help my shadows.  My doc said that wasn't good enough for him.  He added depakote.  If that didn't work, he said he would keep trying until they were gone.  Thankfully the shadows were gone.  I tried getting off the depakote this summer, but I felt shadowy again.  My doc said I might have clusters and migraines.  Lucky me.

Thanks good luck with your shadows if we dont get rid of them we should all have a shaddow party very exclusive club!

I'll be there!

Whipsmart wrote on Sep 24^th, 2008 at 8:24am:

Um, it shouldn't matter whether or not it's good enough for him. It only has to be good enough for you. And you can tell him I said so.

Linda_Howell wrote on Sep 24^th, 2008 at 12:09pm:

I am not sure we can get a 4 way spray over here as I went into my local chemest today and he looked at me like I had come from another planet! To even have a un -stuffed nasel passage would be a result on its own and my partner has said anything that stops me snoring would be amazing, as I dont get to sleep till the early hours most nights and I wake her up when I do sleep so she would thank you very much

Linda_Howell wrote on Sep 24^th, 2008 at 12:09pm:
I'll second that 4-way nasal spray.  Linda, I think you got me onto that.  I wasn't sure who mentioned it, but one blast on the side of the CH and the shadow is usually gone within a minute.  It's amazing and I thank you for that 

I haven't had an attack since April 5th.  However I still shadow almost everyday.  Some days it feels like the beast is coming back.  Then I'll have a pretty good week.  Verapamil is just one of things I still take at 1200 mg.  Tried to come off it  but its too risky.  I'd rather shadow all the time then have actual attacks.  Hoipe my experience gives you something to think about

You mentioned buying Red Bull stock. I feel for you - that stuff puts a serious hurtin on the wallet.

Hey Jay,

I just wanted to throw in my 2c here, I'm not advising just letting you know of my experience...

This cycle (6 days now pain free yeeha) I decided to give the verapamil a miss and use only O2 because I felt that in the past it had been the cause of bad shadowing, longer cycle, more intense hits etc etc.  And for me, going without the verapamil - this cycle - was the right decision.  I hardly shadowed at all and the cycle was a bit shorter.  

I remember a couple of years ago my shadows were insane!  Daily, unrelenting, and I was sure that my cycle should have been finished.  No major hits (after 10 weeks of hits) just the shadows.  Anyway I decided to bite the bullet, tapered off the verap - and it was scary because the shadows got worse and worse, but it proved beneficial for me.  I believe I would have continued to shadow had I kept on with the verap.

Like I say I don't mean to give advice, but this has been my experience.  Next cycle I will not be using verapamil!

I hope you get some relief real soon.


Kate

Glad to hear things are looking up. Red Bull is a good shadow killer for me as is kudzu.

Nice avatar as well, Red 5..........