Hola! It sure has been awhile since I've been here... and I hate to say that I'm back but I had a new cycle start yesterday morning at 5:37am.

Anyways, I've got a few questions...

Verapamil and Topamax never worked for me. Yesterday I felt an attack coming on and within 2 minutes I used oxygen at 20LPM for 10 minutes and it did nothing for my headache, it got worse. I sucked it up and took an injection of imitrex and proceeded to take a pain pill for the shadow. I also started prednisone yesterday, I had some stocked up for this instance.

What else can I try??? I really want to take Lithium but my doctor and parents freak out when I say that. And fyi, I'm a 20 year old female, college student, sorority sister, very active and generally a happy person.. so they think lithium is going to make me depressed.. honestly, i'll be depressed anyways if I have to deal with these CH's for 2 months (my normal cycle time).

I've tried the ole' shot in the head and that worked for about 4 days. The prednisone will hold them off until I run out. I get about 4 imitrex shots per month. Soo, what will I do when I run out of those options?

Nose spray? Botox? Cut my head off? Help!

And I know I'm going to get a lot about Oxygen, but it's so unrealistic for me to carry around an oxygen tank everywhere I go because I'm soooooooo busy, and it usually doesn't work for me anyways. Yes, i have a full mask and yes, I have a good regulator. My dad is on the rescue squad and he hooks me up.

Thanks,
Kim

"Full mask" means nothing. Is it a non-rebreather? In other words, are you getting 100% O2 on inhalation, or are there holes in the side of the mask that mix room air with the O2?

Bag the pain pill.

     Potter

Brew wrote on Oct 24^th, 2010 at 2:58pm:

"Full mask" means nothing. Is it a non-rebreather? In other words, are you getting 100% O2 on inhalation, or are there holes in the side of the mask that mix room air with the O2?

Yeah, yeah. A NRB mask. That is what I meant. I even put tape on the holes and hold the mask away from my face when I exhale, so I'm pretty sure I'm getting 100% O2. It doesn't work. :(

Kim D wrote on Oct 24^th, 2010 at 2:35pm:

I really want to take Lithium but my doctor and parents freak out when I say that.

If your doctor freaks out about trying a treatment that is well documented in medical literature then I'd consider a different doctor, unless there are other medical issues that indicate that lithium isn't appropriate for you. If there are then he should be explaining why not rather than just "freaking out".


Kim D wrote on Oct 24^th, 2010 at 2:35pm:

Verapamil and Topamax never worked for me.

It could be that you were not on a high enough dose for them to be effective. The dose to prevent CHs is often well above that used for other medical issues. I know my GP did a double take when I mentioned how high a dose of verapamil some people use until I showed him printouts from Bob of medical literature, then he was happy to bump up my dose to a more effective level.

I find Kudzu to be an effective prevent.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; I prefer Natures Way.  Call them if interested and they give great service and rush them out if they know you are needing them badly.  I usually get them within three days.  Your normal dosage will be 6 capsules a day, so you can figure how many you will need.  I take 2 with each meal.

Jerry

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

[quote author=18283F2D5A0 link=1287945301/6#6 date=1287961574]Have you tried START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Tell me more.

Kim D wrote on Oct 24^th, 2010 at 9:06pm:

Tell me more.

Not a chance - other than that it works. That's why I provided the link. Go there and read.

Brew wrote on Oct 24^th, 2010 at 9:33pm:

Kim D wrote on Oct 24th, 2010 at 9:06pm: Tell me more. Not a chance - other than that it works. That's why I provided the link. Go there and read.

I've gone to the website and been reading for awhile. I don't see any information that isn't already on this site. Help?

Try this:

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

Kim D wrote on Oct 24^th, 2010 at 10:06pm:

Brew wrote on Oct 24th, 2010 at 9:33pm: Kim D wrote on Oct 24th, 2010 at 9:06pm: Tell me more. Not a chance - other than that it works. That's why I provided the link. Go there and read. I've gone to the website and been reading for awhile. I don't see any information that isn't already on this site. Help?

That's hard to believe.

             Potter

Kim D wrote on Oct 24^th, 2010 at 2:35pm:

Verapamil and Topamax never worked for me. Yesterday I felt an attack coming on and within 2 minutes I used oxygen at 20LPM for 10 minutes and it did nothing for my headache, it got worse. What else can I try??? Nose spray? Botox? Cut my head off? Help! And I know I'm going to get a lot about Oxygen, but it's so unrealistic for me to carry around an oxygen tank everywhere I go because I'm soooooooo busy, Kim

Kim, go ahead and try nose spray and botox. Try reading more on this site about other good abortives and preventatives. Realize your 10 minutes of O2 usage may not be enough, nor might 20lpm. And many of us are reeaaaallly busy, too, but I won't go anywhere without O2 when I'm in cycle. And what doses didn't work?

More questions than answers I'm afraid. May your day be pain free. lance

You'll really need to register on the clusterbusters site. For a number of reasons, we don't deal with that subject outside of the referrals we give. But LORDY they've been cranking out some success stories!

I've used Lithium as my prevent forever. I worked as a patrol deputy and a patrol sergeant while taking 1200 mg a day. It did not depress me or turn me into a Hollywood stereotype mouth breathing zombie! ;D If I didn't tell you I was on it you wouldn't know it.

A couple of suggestions while you work at either educating your doc or finding a more knowledgeable headache specialist neuro!!

Start the following regimen up to 3X a day:

Calcium Citrate with Vitamin D, magnesium and Zinc, washed down with fresh lemonade. This will alter your arterial PH making you less succeptible to attacks. This will not cure or completely stop your attacks, but for many it  has reduced the number and intensity of their attacks. Oxygen stopped working for me last cycle and this regimen had the 02 working again in about 30 hours. Cheap, woth a shot, and a young lady like you should be taking clacium anyways! ;)

I'll re stress the importance of trying to locate a headache specialist neuro. You will probably have CH for life, so the sooner you can get on board with a good head neuro, the better off you'll be long term!

Joe

Potter wrote on Oct 24^th, 2010 at 10:31pm:

Kim D wrote on Oct 24th, 2010 at 10:06pm: Brew wrote on Oct 24th, 2010 at 9:33pm: Kim D wrote on Oct 24th, 2010 at 9:06pm: Tell me more. Not a chance - other than that it works. That's why I provided the link. Go there and read. I've gone to the website and been reading for awhile. I don't see any information that isn't already on this site. Help? That's hard to believe.              Potter

Don't be rude, please. I'm almost 21 years old and I've had these for 7 years, nobody understands and I have hardly any support. I went to that website and I don't know where to look. I spent about 2 hours on there but it seems to be the same people/same posts. I saw some stuff about RC seeds, shrooms, etc. but I have no idea what that stuff is. What I was looking for was someone pointing out "try ____ from clusterbusters".

OK guys,I think Kim needs a little more specific help that I know you veterens of this site can give her.

Kim I am new here,but what has worked for me is Melatonin at bedtime and the Red Bull energy drink when I feel a hit coming. The pain pills are USELESS..

A lot of folks here use 02,but I know little about this as I dont use it. I dont think anybody is being rude,when I first visited this site I thought a few were kinnda short but some people are just quick and to the point.

Perhaps a little more plain English: Nobody here who has a job or standing in a community that might be subject to public scrutiny is going to elaborate for you. You're going to have to go there and figure it out for yourself - like the rest of us did. Nobody escapes having to do the legwork.

End of explanation.

Brew wrote on Oct 25^th, 2010 at 1:26pm:

Perhaps a little more plain English: Nobody here who has a job or standing in a community that might be subject to public scrutiny is going to elaborate for you. You're going to have to go there and figure it out for yourself - like the rest of us did. Nobody escapes having to do the legwork. End of explanation.

???

mikstudie wrote on Oct 25^th, 2010 at 1:48pm:

???

How about PLAINER English - it's illegal. Expound if you want - you'll not get me to.

You think it's wise to start extolling the virtues of something that could land one in prison?

Sheesh.

I did not know advice was illegal. I give it all the time,best I should be locked up.

Sheesh ;)

Thats funny, all I got when I came here was advice "SUGGESTIONS" same thing.


Kim sorry about the hijack it's all yours. :)

mikstudie wrote on Oct 25^th, 2010 at 2:01pm:

I did not know advice was illegal. I give it all the time,best I should be locked up. Sheesh ;)

Knock yourself out.

Mikstudie,

To suggest, advise, or whatever other synonym you want to use, an illegal substance on a public forum is not wise.  If you want to you are welcome to. 

I know several people who have had phenominal results using some illegal substances for medicinal purposes, not recreational, but they are still illegal.  I have not, although I want to, but am unable.  I cannot though recommend them to someone else.  Kim is going to have to do her own research, as did we, and make her own decisions.  We can't do it for her.

That is not being unkind, but rather self preservation.

Jerry

Quote:

That's hard to believe.              Potter Don't be rude, please

I believe what Potter was trying to say was that on the clusterbusters  site there is INDEED a lot more info. about what you're interested in looking for,  than there is here.  It wasn't rude at all.   Honest.

Also...you can get 02 tanks that are small.  Small like what would fit in a pack-pack.   Many here have cloth carrying cases they fit into and no one even thinks twice about it.  They can fit easily in a locker at school or behind a desk, etc.    I used to leave one in my car, and just went outside if I got hit, used it for 10 mins.  and went back to my job..with no one the wiser.

Callico wrote on Oct 25^th, 2010 at 2:41pm:

Mikstudie, To suggest, advise, or whatever other synonym you want to use, an illegal substance on a public forum is not wise.  If you want to you are welcome to.  I know several people who have had phenominal results using some illegal substances for medicinal purposes, not recreational, but they are still illegal.  I have not, although I want to, but am unable.  I cannot though recommend them to someone else.  Kim is going to have to do her own research, as did we, and make her own decisions.  We can't do it for her. That is not being unkind, but rather self preservation. Jerry

My suggestions were Melatonin and Red Bull????? You people advised me on MANY abort and prevents and none were illegal. I think this is what the poster is looking for. But I also see where you and Brew are coming from.

Kim's reference was to the clusterbuster site.  That was my reference.  We have no qualms at all talking about other things that work or don't work.  I understand we aren't always clear or messages get misread.  That's why I answered you to try to clear up the misunderstanding.  Sometimes we who have been here for a while think others understand what is perfectly clear to us from our vantage point.

Hope it helped.

Jerry

Kim D wrote on Oct 25^th, 2010 at 12:58pm:

Potter wrote on Oct 24th, 2010 at 10:31pm: Kim D wrote on Oct 24th, 2010 at 10:06pm: Brew wrote on Oct 24th, 2010 at 9:33pm: Kim D wrote on Oct 24th, 2010 at 9:06pm: Tell me more. Not a chance - other than that it works. That's why I provided the link. Go there and read. I've gone to the website and been reading for awhile. I don't see any information that isn't already on this site. Help? That's hard to believe.              Potter Don't be rude, please. I'm almost 21 years old and I've had these for 7 years, nobody understands and I have hardly any support. I went to that website and I don't know where to look. I spent about 2 hours on there but it seems to be the same people/same posts. I saw some stuff about RC seeds, shrooms, etc. but I have no idea what that stuff is. What I was looking for was someone pointing out "try ____ from clusterbusters".

   Try that.

      Potter

Just had a delightful 30 minute phone conversation with Kim. She is an intelligent friendly young lady, who is frustrated as hell with the pain of CH......told her we've all been there and done that!

Armed with a whole bunch of new info she will see her neuro this Wednesday and hopefully be on the right track towards some pain free time. I have assured here everyone here will help her each and every step! ;)

Joe.

You're a (retired) Officer and a Gentleman, Joe  ;)

his wife wrote on Oct 25^th, 2010 at 7:24pm:

You're a (retired) Officer and a Gentleman, Joe  ;)

DITTO!!!

All I want to do is help anybody I can. I know what condition I was in when I found this place, walking the streets all night asking the Lord why me. And you guys/girls gave me the weapons I needed to fight this crap. We all need to never forget the first time we reached out for help becuse we were lost, I know I wont becuse I found all you great people and you made my life better. I just want to pass my new found weapons on to others that are lost and looking for answers.

Thanks to the people that really care, especially you Joe. Your talk really cheered me up and I had a better night. :)

Sorry for starting a topic that ruffled some feathers.. but it does show the true character of some of the people on this site! Wishing everyone PF days, even you Potter. :)

Kim D wrote on Oct 25^th, 2010 at 10:38pm:

Thanks to the people that really care, especially you Joe. Your talk really cheered me up and I had a better night. :) Sorry for starting a topic that ruffled some feathers.. but it does show the true character of some of the people on this site! Wishing everyone PF days, even you Potter. :)

      Been PF for 2200 days.  Thanks though.

      Potter

Kim,

I'm glad you were able to talk with Joe.  If he can't help you you cannot be helped.

Sometimes when we post we don't always come across the way we intend to.  When you are looking at little black (or colored[color=#000000][color=#000000]squiggly lines on a phosphor screen you don't get the feeling behind what is said as you would if you heard vocal inflection or saw body language.  I assure you that very rarely does anyone want to do anything but help.  You got to talk with Joe, so you got a bit of a feel for what I'm talking about.  If at all possible try to come to St Louis in Jan for a meet and greet and meet some of us in person.  That makes a big difference later when you see our posts, because you will know us as people and not just a screen name.

In defense of Potter:  He doesn't say much at a time, and most of what he says is rather pointed, but you don't have to read behind the lines to see what he is saying.  When you read his last post and notice he has been PF for 2200 days yet he is here almost every day pushing O2 and supporting.  His manner of support may rub your fur the wrong way at times, but in my estimation he is one heck of a good man to stay around when he isn't doing it because HE needs it.  he is paying back what was done for him before hand.  After you've been here for a while and pay attention to what it is he is doing I think you'll understand what I'm saying.

Jerry[/color][/color]

This is important, does your mask have a bag on it? In case you haven't read it, below is a link to O2 info for treating CH.

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

The best O2 mask for CH treatment is the O2pti available on this site at the CH.com store. About $28, made just for CH, makes the standard NON-rebreather look ancient.

Don

Sheesh guys, way to come close to scaring off a young, hot one! Didn't you read she was in a sorority?! ;D

Kim, I am of course kidding! Please stick around, and please keep us posted as to what's working and what isn't and we will try to help. I have said it before but I will say it again: the realization that there are almost to many treatment options available to us to try in one lifetime for my husband's episodic CH was knee weakening to me. It was a new world of hope and help after years of dead ends with doctors.

Lucas is out of cycle now, but once he started using Red Bull, Melatonin, and welding O2 (all based on advice from this site) he did not have a headache that he wasn't able to prevent or minimize. The change was THAT substantial for him. I hope the same for you and everyone!

Kim, I suggest you to do "walking treatment" to break your cycle if you have a time. Please look at the topic "A New Way to Break/End the Cycle". Maybe it is suitable for you if you would like to try. Wish you luck.

Thomas

Lauren17 wrote on Oct 28^th, 2010 at 3:24pm:

Sheesh guys, way to come close to scaring off a young, hot one! Didn't you read she was in a sorority?! ;D Kim, I am of course kidding! Please stick around, and please keep us posted as to what's working and what isn't and we will try to help. I have said it before but I will say it again: the realization that there are almost to many treatment options available to us to try in one lifetime for my husband's episodic CH was knee weakening to me. It was a new world of hope and help after years of dead ends with doctors. Lucas is out of cycle now, but once he started using Red Bull, Melatonin, and welding O2 (all based on advice from this site) he did not have a headache that he wasn't able to prevent or minimize. The change was THAT substantial for him. I hope the same for you and everyone!

Baaahahaha! You're funny.. and thanks for the advice. It's people like you that make having CH easier!

and p.s. - my mask does have a bag on it. It's a NRB mask. :)