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miikkee

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new to cluster headaches
Dec 17^th, 2008 at 10:06am

hi everyone-i have been lurking here for about 1 and a half months.
I was diagnosed with cluster headaches 3 weeks after they started on nov.5.
I was first treated for sinus infection. After no relief went back to doctor who suspected cluster headaches.
My headaches were every day,1 in afternoon,1 at night about 8 on kip scale.
I had just got over cataract surgery when they started about a week later.Doctors say there is no connection.
I am ashift worker who was working straight midnights before i come off of it for my cataract surgery.

To start my doctor treated me with 80mg verapamil 3 times a day,1week of prednizone and relpax.
The relpax really helped and would take away the pain if i took it a soon as i felt the headache coming on.But the headaches kept coming like clockwork.
I went back to my doctor and he increased verapamil to 160mg 3 times a day.
So far this has really helped and i am using less relpax which was my savior the first month.

Hope this help someone

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Ray

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Re: new to cluster headaches
Reply #1 - Dec 17^th, 2008 at 11:52am

Hello:

I'm glad that you're having success with this combination. I have a couple of suggestions to keep in mind:

1) We [almost] all recommend high flow oxygen at 15 liters per minute in a non-rebreather mask to abort those headaches that do come. The advantage is that it is fast, relatively cheap, and nearly side effect free....

2) Keep in mind that verapamil can be raised, still higher, if needed.

3) Relpax has related medications that can be used by nasal spray and/or injection for faster aborts if needed. For example Imitrex/sumatriptan.

Wishing you well,

Ray

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You have my prayers and compassion-I'm right there with you.

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Garys_Girl

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Re: new to cluster headaches
Reply #2 - Dec 17^th, 2008 at 3:52pm

Welcome to the site and glad you're finding some relief!

There's just oodles of info available here, lots to learn, and you'll get lots of support when you need it. This is one of those afflictions where the more you know the better you can work with your doctor to find the best way to beat the beast back.

Wishing you PFDAN!

Laurie

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Just Plain Carl

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Re: new to cluster headaches
Reply #3 - Dec 17^th, 2008 at 5:10pm

Hi Miikkee
   Welcome to the bin. glad you are getting some relief.

ditto on the oxygen. The stuff works wonders.

Are you off the Prednisone? That stuff works for me but I don't like the side effects, no sleep, jittery ect.
I was on 360mg of verapamil with some results. I was going to have that increased until I got the O2.

If your hits are coming at night, look into Melatonin. It's over the counter and could help you sleep.

Keep bouncin around this site, there is tons of info and tips here.

   PFD's
   JPC

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miikkee

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Re: new to cluster headaches
Reply #4 - Dec 17^th, 2008 at 8:14pm

hi carl

yes i am off prednizone
i only took it for 7 days,not sure if it helped at all.

i have a ct scan scheduled for 23rd to rule out other causes,i had blood tests this past week,and see my doctor again the 1st week of january
My doctor said he would look into oxygen if the heasaches keepcoming.

It seems my insurance company sent him a nasty e-mail about the cost of all the Relpax. I am not sure if the oxygen is cheaper or more expensive.Will find out in the new year.

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RichardN

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Re: new to cluster headaches
Reply #5 - Dec 17^th, 2008 at 10:05pm

Hello & Welcome to Clusterville

First, congratulations on getting a diagnosis so quickly after your attacks began . . . . for many it took years/decades to get proper diagnosis/treatment. Consider buying some lottery tickets Wink

.

It was Verapamil and 02 that did the trick for me. I got as high as 480, then settled on 360 mg. As stated above, many take considerably more (and some in combination with other meds like Lithium). If you haven't noticed already, many have some constipation with Verap (I did), but if so, easily remedied with diet change or stool softeners.

The Verapamil did not stop the attacks . . . but it did reduce the frequency/intensity of same . . . . and for the hits I did get . . .02 02 02. This is our major first-line abortive . . . and works for 70% of us. DO take the 02 info to your doc and get the script. Even if your insurance won't pay for it, it's cheap if you have to pay out-of-pocket . . . and VERY effective for most of us.

Do try the Melatonin for the night hits . . . 45 min before bedtime . . . will make you a bit groggy so don't be surprised at that. Dosages vary . . . some take 15 mg . . . I'd start at 6, then 9, then 12 mg to get used to the grogginess and assess the success of this OTC supplement.

Read, read, read . . . and ask any questions you might have. You've just found the motherlode of CH info/caring/sharing.

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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miikkee

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Re: new to cluster headaches
Reply #6 - Dec 23^rd, 2008 at 9:44am

hi richard
thx for the info
Right now the verapamil is working for me,other than feeling a little weak.i see the doctor again in january.Definately have been adding fibre to my diet and also on the treadmill 30 minutes.the relpax worked very well for me when i needed it,My doctor suggested the 02 if i still need it at the next appointment.

thx miikkee

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: new to cluster headaches Reply #7 - Dec 23^rd, 2008 at 10:37am Your insurance will LOVE the cost of 02 compared to the other meds. It's dirt cheap by comparison. For several years my insurance wouldn't cover it so I was buying it myself. $4.00 a month to rent an e-tank, $11.00 to fill it. Hope it proves as effective for you as it has for me! Joe
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UnderTheRadar CH.com Old Timer Offline Literally Posts: 383 Texas Gender:	Re: new to cluster headaches Reply #8 - Dec 23^rd, 2008 at 6:51pm Sorry you had to find the site, but welcome to your new family.
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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: new to cluster headaches Reply #9 - Dec 25^th, 2008 at 7:02pm Hello miikkee, can you tell me more about the shift working thing.? Kinda weird you metioned this, when i was 20 yrs old i worked 3rd shift as a stocker in the local market for about 2 years. Then i quit the job to get away from the vampire life and about a month later KAPLOW..... Clusters!!! Let me know. Coach Bill
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miikkee

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Re: new to cluster headaches
Reply #10 - Dec 26^th, 2008 at 8:46am

hi coach bill

I have worked shift work on and off most of my life.I am currently working night shift 11pm to7am. I have worked this since May of this year.

I am 48 and have had 5 year stints of midnights before but never have i been hit with clusters before.

when i think about my sleep patterns before these clusters headaches it makes me think it may be related.
Example: Monday--work 11-7 cant sleep well,get up then lay back down 7pm to 9pm and to get more sleep.
Usually sleep like this till wednesday till i can sleep through a solid 7 hrs. Fridays i would try to get up at 1 pm to start the weekend.
Saturday and Sunday tried to sleep normally but usually took a nap in the afternoon.

I came off of this shift to have cataract surgery and noticed mild headaches starting and thought it was my caffeine intake causing a problem,
but never thought much about it.but about 2 weeks after my cataract surgery the cluster headaches started.

I work in dusty environment so i was off 1 month for the cataract surgery,then went back to work for a week and put in for vacation for 2 weeks.
I am now off till January and hoping this clears up by then.

What i found about midnight shift is you try to extend your weekends by sleeping less Friday and Sunday and worrying about sleep later in the week.

I know many of the people i work with have similar patterns to this and probably sleep much less, i know i did years ago when my children were younger.

hope this helps

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: new to cluster headaches Reply #11 - Jan 1^st, 2009 at 8:34pm Thanks for the info. Im trying to see if there is some link, but the more info i gather it seems there is just no rymhyn or reason behind any of this. Coach Bill
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miikkee

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Re: new to cluster headaches
Reply #12 - Jan 2^nd, 2009 at 12:10pm

hi coach bill

Thinking back, im not sure if this is my first attack or not.
About 15 years ago i use to lift weights at the local ymca,on sunday mornings we would do legs,sets of squats and then sets to failure on a incline leg press. I was finishing the leg presses when i got a severe pain in my head.

I went to the doctor and he said i strained my scalp muscles,the headaches from this were very painful but i cant remember if the symptoms were the same as the cluster headaches.

I do remember the headaches lasted a long time,and i havent been able to lift heavier weights without feeling like a headache was coming on.
I havent lifted weights since that day, it scared the beejesus out of me!

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