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Currently in cycle, & have a tip! (Read 2460 times)
Beautiful Disaster
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Currently in cycle, & have a tip!
Jul 15th, 2010 at 1:10am
 
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I'm new here on CH.com, but I'm not new to CH's.  Been having them for 16 years.  They started when I was pregnant (Ive been reading about a possible link to testosterone levels & CH's, perhaps thats what started the very 1st cycle?). 
I'm in a cycle, I get at least one a day, sometimes two.  They generally start off about 20-30 mins, and throughout the cycle, get longer and more painful.  Mine are always a 10...and I only wish I was exaggerating!!  Sad
I have an appt with a neurologist on Friday, and hopefully I'll get some kind of info.  I havent seen a neurologist yet.  I was in a headache clinic some years back, but my cycle stopped a week into the clinic, so I bagged it.  HUGE MISTAKE.  I should have followed through.  My current cycle is about 2 months in & I'm beyond desperate  Cry to find SOME kind of relief.  I have been taking 100mg imitrex pills for the entire 16 year history (I can sometimes go 2 years between cycles - praise God!!), and have no real negative side effects that I can think of, other than that it takes WAY too long to kick in.  SO HERE IS MY TIP (I havent seen it on here yet, but I havent read everything either): A SCALDING HOT SHOWER!  Huh Now listen--I know I dont have to explain how silly it sounds to non-sufferers to inflict pain upon yourself while being attacked by the beast...but we all know, WE WILL DO WHATEVER WE CAN FOR EVEN (literally) ONE SECOND OF RELIEF IN THE MIDDLE OF A CH.  So I say to you fellow clusterheads: it is worth a try if you can stand it!  I take a 100mg imitrex pill with hot water to try and dissolve it faster, and wait out the onslaught as long as I can (um...usually only about 5 minutes until I'm at a 7 or 8), then I jump into my shower and turn that water on SO HOT, that I can't even allow it to spray anywhere but on my head/face.  I have one of those shower heads that detach from the base and have different spray settings. I like the hard massage setting, with the scalding water.  Its a little awkward to find a position that allows only your face/head to be sprayed, but it can be done (Ive perfected it!) You can aim the spray as straight down as it can get (still in the base on the wall), and put your arms straight out, holding yourself out from the wall (think push ups) and kind of toot your rear-end out a little so when the water runs off your face, it goes straight down and not on your body.  You can also detach the shower head and squat on the floor of the tub/shower with your legs spread and your head down, holding the shower head at an angle so the excess spray ends up going in between your legs, but missing any of your body.  There are several other ways, but I'll leave it to you to figure out if you decide to try it.  Anyway, this doesn't actually take the pain away, but its like diversion therapy...you're so focused on the burning water that you're less focused on the CH.  Also, the burning from the water actually masks alot of the pain (for me anyway).  It makes sense in a weird way - heat is supposed to open your blood vessels and increase blood flow.  Perhaps this is why it helps me.
Nothing ever makes them go away but time though.  I'm trying really hard to continue on with a normal life, but I'm becoming more and more depressed.  This has been a long cycle for me.  I can't pinpoint a trigger for myself, so I dont know what to stay away from.
I must admit, I have been very lax about keeping a journal on my CH's over the years.  I go back and read and think 'how much more vague could I have been?!'  And I'm still not great about it because the last thing I'm thinking about when I'm dancing is 'oh, I gotta journal this' ya know? Then by the time it's over I'm so exhausted, I cant even think straight.
Im going to ask my neurologist about oxygen treatment and testosterone level blood test.
At any rate, I'm not generally a complainer, but it feels good to know that others here know EXACTLY what I go through on a daily basis.  Its too hard to try to explain it to someone who's never had a CH.
I hope you try my hot shower tip - as weird as it sounds - and if you do, I so sincerely hope it brings you a little relief in your world of CH chaos.
~Thank you for your time~ Smiley
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MJ
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Re: Currently in cycle, & have a tip!
Reply #1 - Jul 15th, 2010 at 1:46am
 
Every input helps, thanks.
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MJ
 
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bejeeber
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Re: Currently in cycle, & have a tip!
Reply #2 - Jul 15th, 2010 at 2:56am
 
Hi Beautiful  Smiley,

Those imitrex pills you're taking - did you know that the injections are much more effective than the pills, to the point of being practically guaranteed to completely abort a hit, even when 1/3 to 1/2 doses are used as outlined in the imitrex tip?  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

They can be a real ace in the hole if you can't get to your O2.

IMO you should demand O2 from your neuro, and if he/she still refuses, proceed directly to the nearest welding supply place where they will supply you with the exact same O2 without prescription.

It sounds to me like you could be getting much better results than you've been experiencing so far. Good thing you came here - you can learn a lot here and at clusterbusters.com about how to get a lotta relief.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Beautiful Disaster
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Re: Currently in cycle, & have a tip!
Reply #3 - Jul 15th, 2010 at 12:58pm
 
I have heard about the injections!  I've also read how to make them last longer  Wink I asked my regular doctor to prescribe them & she said she wasnt comfortable doing that.  Uh......   Angry  Tomorrow is the appointment I've been waiting for!  I'm going to get myself some O2, a testosterone test, some injectables, and hopefully some piece of mind!  I cant wait!!!!!!!
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bejeeber
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Re: Currently in cycle, & have a tip!
Reply #4 - Jul 15th, 2010 at 2:54pm
 
Sounds like things should be looking up for you - yay!  Smiley

If the Neuro you have the appointment with tomorrow isn't an actual headache specialist, then you might have to be a little emotionally prepared for the possibility of him/her to....um....how do I put this...to be a blundering ignoramus about CH.

So sad, but as we've seen here so very often, so true that the rank and file type neurologists often don't have a clue.
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« Last Edit: Jul 15th, 2010 at 2:55pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Beautiful Disaster
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Re: Currently in cycle, & have a tip!
Reply #5 - Jul 15th, 2010 at 4:39pm
 
It's actually at the UW Neurology Headache and MS clinic...so HOPEFULLY they wont be blundering ignoramus'!!  Typically, anytime I have had to go to the UW, the services are amazing and they are extremely well educated and experienced.  They have an extraordinary medical program at the UW, so I'm thankful that I live in Seattle!!
Its rather frightening to me to hear the horror stories on here about what kind of idiots are masquerading as neurologists!  Maybe this is subconsciously why it's taken me so long to get my rump in gear to see one!
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plateglass
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Re: Currently in cycle, & have a tip!
Reply #6 - Jul 15th, 2010 at 6:22pm
 
Best of luck to ya.... Get the O2 and get that testostorone test.  The results might be astounding!!  I just had mine taken and I was extremely low.  Starting replacement therapy next week.   Grin
Steve
ooh yeah and welcome to the family! Cheesy
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Wouldn't it be easier if we just cut off your head?
 
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bejeeber
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Re: Currently in cycle, & have a tip!
Reply #7 - Jul 15th, 2010 at 10:32pm
 
Headache clinic - that does sound good!!

Here's hoping we hear a happy report back about it.  Smiley
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Beautiful Disaster
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Re: Currently in cycle, & have a tip!
Reply #8 - Jul 16th, 2010 at 12:56am
 
Aww thank you all, you've been so kind and welcoming!   Smiley  I wanted to say - this evenings headache came on and I tried a medication my RN friend pilfered for me called Frova.  LOVE IT!  Its a pill...2.5mg (doesnt sound like much when I'm used to 100mg of imitrex).  I took it immediately at the first twinge and my headache was gone in 30 mins!  Thats about 1/3 of the time it usually lasts!  I'm pretty happy about Frova right now.  I also have a couple of "Axert" (never heard of it) which looks like its almotriptan malate.  I'm gonna have to research that one...although any triptans seem to work well for me.
Anywho...thought I'd share!
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Headache Boy uk
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Re: Currently in cycle, & have a tip!
Reply #9 - Jul 16th, 2010 at 1:54pm
 
hay Beautiful

Just one to throw in to the mix energy drinks such as red bull can be very helpful , chug one right at the start of an attack and it can reduce the kip level or even abort a mild attack also if you do get the O2, I have it on good authority,  it can help that work better to. And it's fairly cheep and straight away too.

Hope all goes well

God bless

Nigel
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You can't speak a kind word too soon, For you never know how soon it will be too late.

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Beautiful Disaster
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Re: Currently in cycle, & have a tip!
Reply #10 - Jul 16th, 2010 at 3:28pm
 
Thanks Nigel!  So.........I'm pretty disappointed in my appointment.  She prescribed me O2, but my insurance wont cover it.  I'm going to have to private pay, which totally sucks, cuz I never have any extra money (single mom.  Sheesh!).  She also prescribed me Verapamil and Prednisone.  I told her I had to research them before I would take them to see if the good outweighs the bad.  She kinda had an attitute about it!  (This is a neurologist who specializes in clusters, mind you) She basicaly told me that EVERYONE she had treated with those showed great improvement.  Um...Yay for 'everyone' then...but I don't take things without researching benefits/side effects.  Smiley  Heres what pisses me off: I asked for the testosterone test and she went on to school me about how UW Medical Center was a 'standard of healthcare' facility and basically, in layterms told me that since they have no standard to treat low testosterone for headaches, they wont even test for it.  Its more "fringe".   Smiley I am so aggravated with UW right now its ridiculous!  AND I HAD TO SCHEDULE MY MRI OUT 9 DAYS.  Here's hoping I dont have a flippin brain tumor............
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bejeeber
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Re: Currently in cycle, & have a tip!
Reply #11 - Jul 16th, 2010 at 5:41pm
 
Well that MRI oughta set your mind at ease.  You've been blessed with these lovely CH's for 16 years now, so I figure no use getting yourself worried at all about a brain tumor.

It does sound like standard preventatives that you've been prescribed. A prednisone taper to hopefully shut the attacks off temporarily, while the Verapamil is hopefully ramping up and kicking in as a longer term preventative.

Did ya get your imitrex pills replaced with injections?

I very much respect your due dilligence researching these meds before accepting them. It's not the easiest decision these days because although they have been effective for many people, they can be dangerous, they do have side effects, and there's this little non toxic mushroom you could try instead for your preventative that more and more CHers are abandoning their Prednisone and Verapamil for, because they report the mushroom is more effective.

Here's a video talk on the subject by one of our fellow CHers in case you're new to it, or haven't seen this yet. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register



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« Last Edit: Jul 17th, 2010 at 12:58am by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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plateglass
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Re: Currently in cycle, & have a tip!
Reply #12 - Jul 16th, 2010 at 10:15pm
 
Sorry to hear that you had a bad visit with that neuro.  As far as the testostorone test, your regular GP can and will test and treat you for low testostorone. 

Steve
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Wouldn't it be easier if we just cut off your head?
 
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Beautiful Disaster
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Re: Currently in cycle, & have a tip!
Reply #13 - Jul 17th, 2010 at 2:32am
 
LOL Bejeeber! I kinda wish it WAS a tumor...then at least I would know if it was treatable!  I'll take a look at your video link.  I had a bad experience with another kind of mushroom as a teenager that makes me cringe everytime I hear the word.   Grin But again, I'm looking into everything.
I did not get the injectable.  She told me I need to quit taking the imitrex because it's making the duration of a headache longer and probably more painful, as well as causing rebounds because I've been on it for so long. I've had good results with the Frova the last couple of days, and I have 2 of those left.  I'm hoping to have the O2 by Monday, so theres something to look forward to.
Ok, gonna go look at the vid link now!
Thanks guys!
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Re: Currently in cycle, & have a tip!
Reply #14 - Jul 17th, 2010 at 6:45am
 
Erm I did not have a good experience with verapamil it made me shaky, jumpy , dizzy and numb all over at only 40mg per day, but that's just me .

Don't let me put you off trying it as many have had excellent results , and as with all meds if you start looking at the side effects list you probably wouldn't take anything .

It's simply a case of finding out what works for you and what drugs suit you ( not found mine yet thoe I've only had one cycle so far ) . If you do use verapamil caution should be used if try energy drinks as well as some of the ingredients can interfere with each other in a not so good way but again that depends on how you react to them .

Nigel
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You can't speak a kind word too soon, For you never know how soon it will be too late.

Some people cause happyness wherever they go, others whenever they go
 
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Re: Currently in cycle, & have a tip!
Reply #15 - Jul 18th, 2010 at 10:30pm
 
In response to the original post, I also take steaming hot showers during CHs.  This may sound a little weird, but I was showering during the tail end of a very mild CH and accidentally got soap in my eyes.  As I scrambled for a couple seconds to wash out my eyes, I totally forgot about my searing CH.  Pick your poison, I guess.  Smiley

I've been on Verapamil for about 6 years now and just started Topomax about a month ago.  I'm up to 150mg of Topo and I'm absolutely feeling the side effects, but sincerely appreciating the CH free days.
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