the shadows of my headaches haunt me whenever I'm awake. Nothing helps.
I don't know what to do
:'(

Look live with the pain, try everything u read on here, and then after all that, do 1 thing and one thing only!!!!  Go to your doctor tell him to give you Staydol nasel spray !!!!  Only thing that will work for ever !!!!  Next time you talk to me u can thank me for having ur life back  !!

a quick wiki shows that it's an opioid.
I thought the concenous was that they do'nt work for ch.
anyone have luck with it

idorko,
Glad you researched before taking this Newbie Spammer's horrible advice.  Staydol is highly addictive and very dangerous!  We've come along way since the Staydol days and there are plenty of better options to prevent and abort CH's.

Hang in there idorko ;)
-Gregg in Las Vegas

PS Alert moderator of previous poster as Spam! >:(

idorko wrote on Jun 12^th, 2013 at 1:27pm:

a quick wiki shows that it's an opioid. I thought the concenous was that they do'nt work for ch. anyone have luck with it

I used it twice and the Sheriff came and rescued me.

              Potter

idorko wrote on Jun 12^th, 2013 at 12:14pm:

the shadows of my headaches haunt me whenever I'm awake. Nothing helps. I don't know what to do :'(

Have you tried treating each one as if it is just a low level CH, so use oxygen, energy drinks, etc. against them?

Tell us what you've tried so far.

The same thing often happens to me.  Shadows that NEVER cease.  Sometimes 4 Way Nasal Spray combined with Excedrine Migraine will help.  Other times O2 and an energy drink will knock it back. 

Once, my husband bought me some of that "Head On" ( I don't even know if they make it anymore.... It had the WORST commercial)  I found that smearing it all over the right side of my face relieved some of the pain from strong shadows.  It was at least a diversion from it. 

I hope you find something that works. 

PF wishes,

Jeannie

oxygen helps for about 4 minutes (after using it for 8, so it's not that efficent for this pain for me)
Migranal doesn't help the pain, it just knocks me out and then I wake up in pain. Same with tizanidine.
Benadryl cream applied to my face has worked occasionally.
I can't really do caffeine, I'm super sensitive to it and I will likely be up all night even if I use it in the morning.

I'm wondering if you have tried any of these simple remedy's.

Ice blocks wrapt in a piece of cloth applied to the temple, top of
your head, and the lower part of the back of your neck.

A very hot shower.

Melatonin at bedtime, Kudzu, known to help in CH's, OTC.

Avoid processed foods containing nitrates
they can cause havoc in CH's.

Alcohol a real no no.

Can you give us a little more info? Otherwise we'll all be shooting in the dark. Tell us about your preventatives and your abortives, as well as what hasn't worked. You say the O2 doesn't work and you've been around long enough I suspect you know the proper setup for O2. Still, worth an ask. I also find the shadows problematic, and Migranal does work for me. I'm a little surprised to hear it knocks you out, though. Not sure why it would do that. Waiting to hear back. God bless. lance

I take the following meds:
300 MG of oxcarbazepine at breakfast, 150 at lunch and bedtime
300 of Gabapentin 3x day
30 mg of Celexa Morning
2 Capsulses of B12 and D3 at breakfast
10 mg of Melatonin at night time.
300 mg of Magnesium at night time.

wimsey1 wrote on Jun 14^th, 2013 at 7:49am:

Can you give us a little more info? Otherwise we'll all be shooting in the dark. Tell us about your preventatives and your abortives, as well as what hasn't worked. You say the O2 doesn't work and you've been around long enough I suspect you know the proper setup for O2. Still, worth an ask. I also find the shadows problematic, and Migranal does work for me. I'm a little surprised to hear it knocks you out, though. Not sure why it would do that. Waiting to hear back. God bless. lance

I have the CH 02 mask at 15l/minute.
Verapamil didn't work for me.
Tizanidine works sometimes, it dulls a bit, but makes me sleepy.
I just have Lidocane (hit or miss) migranal (hit, but knocks me straight out) and oxygen as abortitives.

Sorry the O2 isn't working for you. About 70% of us swear by it.

You don't have imitrex on your list. That's the abortative of most on here.

Gabapentin has NOT worked for many on here (and remember we're all different).

I've used Topamax for years and recently my neuro switched me to Zonagran (Topamax without the side effects) and it's working well for a prevent.

Now I DO have a Staydol script (I suffer from Chronic miagraines as well as CH and sometimes get hit with BOTH at the same time.. the staydol keeps me out of the ER, but I've only used in ONE time and I was begging the man upstairs to kill me at the time, so yes, it is a NO NO for CH).

All we can tell you is what has worked for US (and others). But I will tell you - it's hit and miss until you come upon what works for YOU. We all react different to different things.

I'm chronic so a Kip 3 is about pain free for me. When it gets above that I hit the O2 and Red Bull if it's going upward.

If it comes upon me (and it sometimes does) at an 8 or 9 - I hit the imitrex and start doing housework or some other manual labor to try to get my mind off the pain and keep myself from doing harm to something (like knocking my head against the walls or screaming at the dogs - they don't like that).

If I'm out somewhere and feel one coming on I down a can of Red Bull really quickly - and if that doesn't do it .. I do an imitrex spray and try to stay away from people (for their benefit) until the CH subsides.

Another thing .. I have a rice bag that I heat up in the microwave and use it on my CH side of head and neck while I'm huffing O2 - it helps.

These are just some things to try.. Keep us up on what's going on with you.  :-*

I mean o2 works during hits, just not to keep away the shadows for anymore than a negligable amount of time.
The advice from my secondary neuro was not to use injectable imitrex because it releases so much into your system that it may cause problems with my SSRIs at the dose needed to block headaches, which is why I have DHE nasal spray.
Stadol might be worth looking into I guess. I'm really just worried abotu shadows more than hits recently.

idorko,
After you abort with o2, reduce to 15 lpm and breathe normally for an additional 10 to 15 minutes, this method is helpful for many of us to avoid a re-attack and lingering shadows.

Utilizing the Imitrex Tip, yellow tab left side of your screen, will save you $ by injecting only 1/3rd or 1/2 dose and avoid the issue you are mentioning.

PF Wishes ;)
-Gregg in Las Vegas

I only have a max 15 regulator. I'll try and find a place where I can get a higher one. but my method is to drop the hit, then stay on the oxygen for 10-15 minutes anyway.

idorko wrote on Jun 15^th, 2013 at 4:44am:

I only have a max 15 regulator. I'll try and find a place where I can get a higher one. but my method is to drop the hit, then stay on the oxygen for 10-15 minutes anyway.

idorko,
I would recommend the Hyperventilation method to abort attacks with o2 and flow rates need to be 25 lpm to 40 lpm to hyperventilate.  To achieve hyperventilating, you will need to get a high flow regulator.

A company called FloTec out of Indianapolis will custom manufacture a 0--60 lpm high flow regulator for you, costs around $150; excellent quality.

Harbor Freight Tools is open TODAY and sells welder regulators (same thing) for about $35 bucks.

Do you have a NON-rebreather mask?
What size tank do you have?

-Gregg in Las Vegas

yeah I have the CH specific NRB mask that I ordered from the sidebar.
I have an M tank in my room and by our couch and the biggest portable tank for my car.

idorko wrote on Jun 15^th, 2013 at 12:20pm:

yeah I have the CH specific NRB mask that I ordered from the sidebar. I have an M tank in my room and by our couch and the biggest portable tank for my car.

idorko,
Keep in mind when you get your high flow regulator for your M tank you will need a CGA540 connector to ensure proper attachment to your M tank.

The welders regulators at Harbor Freight and the 0--60 lpm high flow regulator from FloTec are both CGA540.

As you already know, you can abort at 15 lpm with the regulator that you have.  But the hyperventilation method with a high flow regulator offering at least 25 lpm will produce MUCH FASTER aborts.

Good of you to stay on for 10 to 15 min after abort, no need to waste the o2, just reduce to 15 lpm or lower and breathe normally in an upright position.

Hang in there ;)

-Gregg in Las Vegas

Unless I missed it I see no mention of a prednisone taper

Quote:

Verapamil didn't work for me.

What dosage?

LasVegas wrote on Jun 15^th, 2013 at 12:30pm:

idorko wrote on Jun 15th, 2013 at 12:20pm: yeah I have the CH specific NRB mask that I ordered from the sidebar. I have an M tank in my room and by our couch and the biggest portable tank for my car. idorko, Keep in mind when you get your high flow regulator for your M tank you will need a CGA540 connector to ensure proper attachment to your M tank. The welders regulators at Harbor Freight and the 0--60 lpm high flow regulator from FloTec are both CGA540. As you already know, you can abort at 15 lpm with the regulator that you have.  But the hyperventilation method with a high flow regulator offering at least 25 lpm will produce MUCH FASTER aborts. Good of you to stay on for 10 to 15 min after abort, no need to waste the o2, just reduce to 15 lpm or lower and breathe normally in an upright position. Hang in there ;) -Gregg in Las Vegas

I'll look into it with my dad (who knows more about that shit than I do. I know we have a welding setup that I might just be able to switch around)

I did 120/3x on Verapamil, but the side effects weren't worth it for me, so my docs switched my meds.
I did three different steroid tapers. I did dexamethazone starting at 4 for a week, prednisone at 40 tapered down for amonth, and prednisone at 80, tapered for a month. The pred at 80 helped, but when it was gone, I just started getting headaches again.
It also, despite melatonin, disrupts my sleep and made me gain a lot of weight.

There are many trade offs when choosing meds. to battle CH .

seaworthy wrote on Jun 16^th, 2013 at 9:10am:

There are many trade offs when choosing meds. to battle CH .

Amen. How many of us have asked the question, "Which of these sucks less?"

Brew wrote on Jun 16^th, 2013 at 11:55am:

seaworthy wrote on Jun 16th, 2013 at 9:10am: There are many trade offs when choosing meds. to battle CH . Amen. How many of us have asked the question, "Which of these sucks less?"

Brew, the election is over! ;D

-Gregg in Las Vegas

LasVegas wrote on Jun 16^th, 2013 at 11:59am:

Brew wrote on Jun 16th, 2013 at 11:55am: seaworthy wrote on Jun 16th, 2013 at 9:10am: There are many trade offs when choosing meds. to battle CH . Amen. How many of us have asked the question, "Which of these sucks less?" Brew, the election is over! ;D -Gregg in Las Vegas

zinger.
Mittax. For that post 2008 headache.*
*Mittax may cause nausea, headache, sexual dysfunction, hatred of caffeine, religious fundamentalism, anger, phycosis, an urge to move to Canada, and in some instances: deaht.

Quote:

Amen. How many of us have asked the question, "Which of these sucks less?"

That about sums it it up Brew.


Quote:

phycosis, an urge to move to Canada

Isn't that the same thing?  Go BRUINS! 8-)

(Running for cover)

seaworthy wrote on Jun 16^th, 2013 at 4:42pm:

Quote: Amen. How many of us have asked the question, "Which of these sucks less?" That about sums it it up Brew. [quote]phycosis, an urge to move to Canada

Isn't that the same thing?  Go BRUINS! 8-)

(Running for cover)

[/quote]
A real Canadian would have apologized for that
sorry

I very much assume that the relationship between the US and Canada is very much like that between Australia and New Zealand. Fierce rivals for anything relating to sports or beer but otherwise getting on with each other pretty well.

Don't worry if you're not on the right side of the ditch, I won't mention anything to do with "that incident" with cricket or the claims that Phar Lap was an Australian horse either.

Mike NZ wrote on Jun 16^th, 2013 at 7:10pm:

I very much assume that the relationship between the US and Canada is very much like that between Australia and New Zealand. Fierce rivals for anything relating to sports or beer but otherwise getting on with each other pretty well. Don't worry if you're not on the right side of the ditch, I won't mention anything to do with "that incident" with cricket or the claims that Phar Lap was an Australian horse either.

our governments get along fine but the people shit all over Canada whenever we can, but everyone threatens to move there when their guy doesn't win the election.
Which lead to some funny comments on facebook when people were threatening to move to Canada because America was too liberal with Bush 3.0 Obama.

Mike NZ, wrote, claims that Phar Lap was an Australian horse.
To race goers here he was, he helped save the bacon of many
a punter during the great depression, hence why Aussies claimed him their own.  " But he was foaled at Timaru NZ on the
4th of October 1926, breeding, Night Raid - Entreaty(byWinkie.")
As for cricket i know nothing about. [smiley=applause.gif]

Idorko, you're definitely in a tough spot, man. But you knew that. All I can add to what has been written already is my experience with O2 was pretty much the same as yours: 15lpm worked, but not real well. When I went up to 25lpm I found it to be a whole new ballgame. Hopefully, you will, too. Blessings. lance

Quote:

(Running for cover)

Oh no need to, them Canadian grandmas just stand little Donnie up in the corner with a crosscheck, help find your two front teeth, grab a kleenex from her purse to stop that nose gusher, snap it back shut, put her gloves back on and skate away.   They're really polite, just hold your head back for awhile with the kleenex while watching the Bruins and eating ice cream through a straw.





I've nothing helpful on steady shadows.  Usually could mean my prevent is slightly undergunned.  Otherwise a energy drink or two, O2 if it's getting heavier.

Kevin_M wrote on Jun 17^th, 2013 at 3:06pm:

Quote: (Running for cover) Oh no need to, them Canadian grandmas just stand little Donnie up in the corner with a crosscheck, help find your two front teeth, grab a kleenex from her purse to stop that nose gusher, snap it back shut, put her gloves back on and skate away.   They're really polite, just hold your head back for awhile with the kleenex while watching the Bruins and eating ice cream through a straw. I've nothing helpful on steady shadows.  Usually could mean my prevent is slightly undergunned.  Otherwise a energy drink or two, O2 if it's getting heavier.

Kevin - all I can say is it's a good thang yer cute!!!  ;D

I feel ya Idorko. These cursed shadows hit me nearly every day all day. I thank God (and Batch) that the 4-6 times a day kip 7-10’s have subsided. I truly believe that is due to the vitamin d3 regiment these kind folks around here talk about, which is currently my only preventative. Energy drinks do seem to help at times. Imitrex if the beast decides to slip through the cracks.

Like you I have also tried Verapamil, started with 180mg, after the dosage was increased I started experiencing irregular heartbeats.  Cut that out.  The O2 had little effect other then light headed “high” sort of feeling.  I have just recently been diagnosed with CH, March of this year to be exact. I am starting to fear that I am a chronic sufferer.  Things are much better now than a month ago, but the shadow of this damn beast still lingers. Best of luck to you my friend.

Assalamu Alaikum