Hi Guys,
My turn to rant lol After over a year of CH and no restbite in my shaddow headackes enough is enough! How can I stop the shaddows we all know the pain of an attack and I will not insult anyone on here about how much pain that causes.

I do get some tempoarary relif from the o2 and had a difficult situation at the weekend when I was on a flight and had a CH attack as we came into to land, I injected myself with the imigran and you have never seen the passanagers who sat next to me get so interested in the celing and air con lol

Ok back to the reason for this post what have people done that have had shaddows non stop for over a year done to end the cycle I am on vapermil etc I just need a rest every day and night shaddows and attacks is wearing me out so please SOS! I know there has been talk about majic mushrooms but dont even know where to start yes I am getting desperate

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

I know its great to laugh afterwards but I was wondering when the other passangers were going to attack me as some king of junkie lol I use the o2 even after the attacks are over but the shaddows have never gone away not even for a short while, I do use energy drinks and are beging to think I am helping red bulls shares lol

I am on 360mg of verapamil the consultans in Scotland are as much use as a chocloate tea pot here and if it wouldnt have been for the guys at Ouch and my GP i would have been left high and dry. My GP  has been relutant in increase my verapamil as I have had realy bad attacks of Trigeminal neuralgia and the dosage i am on for that is very tireing and dosent want to confuse the results I am getting see I am greedy CH isnt enough for me I need more rare conditions lol

What dosage has worked for you/other people of Verapamil and I havent heard of melatonin is it called by another name (for us in the UK)

Thanks for the response belive me any help is very much apprecated as I now keep forgetting things since this started and CH has been confirmed with scans and other things have been ruled out with lumbers and other tests

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

I have had constant shadows for over three years the pain is normaly a 2 or 3 and half way bearable but very distracting it limits my time to get to my abortives.  I hope some one can answer your question it would help me greatly to.  Im sorry to make this about me I just wanted you to know your not alone. If you need to talk to someone you can PM me. I hope your question get answered or your pain just stops.    Phil

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-

Hi Jay and thanks Dennis I have only had SR verap next time I see my doctor I'll be asking about RR.  Thanks,   Phil

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!

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! 8-)

Jay..

Get some 4-way nasel spray.  No other kind of spray decongestant  will work...only 4-way.  Use it in the side that is in pain.  It has worked like a charm for at least 4 of us that I know of.   I know...it seems pretty simplistic but it DOES work.  If for some reason it doesn't help you you're only out 4 or 5 bucks and no harm is done.   Might even wind up with an un-stuffed nasel passage.

Bill and Thomas, I am surprised you hadn't seen this and chimed in.  ;D

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

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.

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.

At least you guys have Docs that are trying to help apart from my GP I have been left high and dry by the Scottish NHS thats why I am happy to found other people that are going through this and in fact I spoke to my GP yesterday who is looking into increasing my Verapamil dosage!

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

Jay.. Get some 4-way nasel spray.  No other kind of spray decongestant  will work...only 4-way.  Use it in the side that is in pain.  It has worked like a charm for at least 4 of us that I know of.   I know...it seems pretty simplistic but it DOES work.  If for some reason it doesn't help you you're only out 4 or 5 bucks and no harm is done.   Might even wind up with an un-stuffed nasel passage. Bill and Thomas, I am surprised you hadn't seen this and chimed in.  ;D

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 ;D

Jay,

I know Linda said only 4-Way will work, but Neo-Synephrine and Sinex contain the same active ingredient - just has some camphor and/or menthol in it in addition to the Phenylephrine Hydrochloride.

Regards,
Jim

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

Jay.. Get some 4-way nasel spray.  No other kind of spray decongestant  will work...only 4-way.  Use it in the side that is in pain.  It has worked like a charm for at least 4 of us that I know of.   I know...it seems pretty simplistic but it DOES work.  If for some reason it doesn't help you you're only out 4 or 5 bucks and no harm is done.   Might even wind up with an un-stuffed nasel passage. Bill and Thomas, I am surprised you hadn't seen this and chimed in.  ;D

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  :)

Yep, it was me who told you about that Chad.  But Thomas and Bill were the ones who told me about it in the 1st. place.  

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

Quote:

I know there has been talk about majic mushrooms but dont even know where to start yes I am getting desperate

Start here
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
all the best
thebb

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

superhawk2300 wrote on Sep 26^th, 2008 at 7:10pm:

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

I have nothing bad to say about RedBull except the price. I believe it was the first (or one of the first) energy drinks. I am no longer willing to pay for the "name" so I use any of a number of others. Current favorite is "Wired" with 344 mg caffeine and 3000 mg taurine. It and others are approx half the price for twice as much (8 vs 16 oz). Works for me (shadows AND hits).

Best,

Jon

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

wrote on Sep 24^th, 2008 at 12:55pm:

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

;D
He was right.  As soon as I was out of the shadows, I remember what it was like to be pf.  I was hesitant to take more meds.  It ended up being worth it. There's a big difference b/t going to my family doc and my specialist.

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..........

That is very intersting for me to hear as you just dont know what to do, after so long of attacks and constant shaddows I think I am too scared to come off the verapmil as I am not sure I can take any more pain at the moment. But I am getting very desperate now as I have been trying to cope over this last year + but admit for the first time this is more than getting to me and beging to lose it.

Kate in Oz wrote on Sep 28^th, 2008 at 8:57am:

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

I have been trying the spray and I have had no luck with it at all :'(


Linda_Howell wrote on Sep 25^th, 2008 at 3:43pm:

Yep, it was me who told you about that Chad.  But Thomas and Bill were the ones who told me about it in the 1st. place.

I can concur with Kate in at least one instance myself, where not going on verapamil and / or prednisone was the correct choice for me as well.

And I've had the opposite true to, so not only do I think CH wildly varies between sufferer, but it varies wildly between cycles in the same suferer.

Hope this helps.

Thank you everybody for your experiances, I am waiting to hear about a nuro in Scotland that may be good.

I seem to live on redbull as well also because the tirdness is so hard to deal with. I think I am going through a very bad cycle at the moment which I am finding very hard to brake. I am usually a very strong person but I admit I am getting worried about myself as I am now taking it out on my partner and even beging to brake down and cry which is so out of character.

Strange thing just writting into cyberspace is at least some help the shadows are at the strongest I have had for over a year and strange how you can live with the shaddows everyday for so long and then one day you just cant take them never mind the attacks. Spent a lot of time off and on the o2 last night and so tired I doubt even what I am typing now makes any sence and I am sure I am boring you all but just need to say how im feeling even though I doubt it will help much but even a wee bit does make you feel better.

Sorry for moaning but I just feel so down with it all at the moment and thank you everybody who has listerned and have tried to help. :-[

I hope you start to come around soon and get back to PF status.

Being very tired and in pain does things to people's ability to cope. Last night I got angry with my beautiful little 3 year old girl. I felt terrible going to bed so I can related.

It is key to remember what you mentioned - that is it OUT of character. The beast is not you adn the fact you are here "moaning" about it shows insight to your true character. Try not to be to hard on yourself.

I hope peace comes to you quickly

Hang in there Jay.  I can definatly relate.    Phil

Hey Jay,

I'm sorry to hear that you're still hurting so much.  I have to agree with superhawk that what works for one person, one cycle, does not necessarily work for another or even another cycle.

I've been thinking about you since I last posted and honestly.. well I've been pain free for over a week now - after a 4 month cycle (2 months of the worst)- which seemed insane at the time.  I just can't imagine how you are coping for a year +.  I'm glad that coming here is helpful to you- this place is a real life saver.

I hope you find something that works for you soon.

Good luck with the neuro,

Kate

Thank you everyone it is good to know there are people out there who know how I feel and dont think I am insane!

Off to the GP latter with the name of the nuro in Glasgow so hopfully I may start to get somewhere and they need to do the ECG bad enough having this pain without having patches shaved on my chest for the ECG LOL!

It really has been good to be able to say how I feel and as no one will ever meet ne being the other side of the pond it is easier to admit how much this gets to you and how hard it is, fingers crossed I get somewhere today

jay wrote on Sep 30^th, 2008 at 5:59am:

That is very intersting for me to hear as you just dont know what to do, after so long of attacks and constant shaddows I think I am too scared to come off the verapmil as I am not sure I can take any more pain at the moment. But I am getting very desperate now as I have been trying to cope over this last year + but admit for the first time this is more than getting to me and beging to lose it.

Jay,

Please check out this link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Several of us have had fantastic success with the regimen Cyndi describes in the first post.  Hope it will help you out!

Regards,
Jim