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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Dancin with the beast in NorCal

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Dancin with the beast in NorCal (Read 1113 times)

JSCartier

CH.com Newbie

Offline

Pardon But has anyone
seen my brain ??

Posts: 20
Kodak, TN
Gender: male

Dancin with the beast in NorCal
Oct 24^th, 2008 at 7:31pm

Hello Everyone !

Glad to finally find a place online for all info one could want and or need

Currently in Diamond Springs CA , Working for a major computer company, 33 winters old and trying to still enjoy life

Since this round of CH has hit I am extremely photo sensitive , but sound has no effect.

My first bout with CH was in 2003 but only lasted for about 2 months .. At that time I had a passing in the family and just chalked it up to "stress"

Around the March of 2008 I started another cycle but as of yet did not know the cause .. after 3 weeks I finally broke down and went into the clinic . Well according to them I was suffering from migraines ....

well I was PF until the end of July and I have been dancing since .

I have not had a Primary Care doc since I was in grade school and really have not had anything wrong with me medically.

Well in July I changed all of that , the HA's were getting worse, more frequent and lasting longer .

Finally after what seemed like 7 different meds, and 3.5 months my doc referred me to a decent neuro.

Have to admit that my PC doc is good , went through a full MRI setup as well as blood work. Nothing abnormal at all ok another dead end ..

I know that on my Mothers side of the family Migraines are common and both my mother and one of my aunts have severe Migraines.

well back to my neuro ... ( sorry I am sorta scattered but right now I am in the sweat of a nice little dance and the hits are coming regular and strong - Damn that nice sharp pencil !!!!

That consult lasted all of 20 minutes once we got into the same room ...

He sorta laughed and said you are not suffering from Migraines ... you are suffering from CH ...
ok so Nortriptlyne went out the window ... ( thank god that stuff messed up my already messed up sleep cycle )

made an RX of Verap and Prend-taper
( kept the phenegren due to the verap causing lots of nausea )

So currently I am using Verap and Prend- taper with imitrex and O2 for aborts. ( Thank you all for the info .... it has helped a LOT !!! ) my neuro was a little dicey about the o2 but I kinda forced the issue

SO I am waiting for a non-rebreather mask from the Oxy place ( even talked them into possibly ordering a clustermasx !!YEAH!!!)

Verap 240mg 1x daily
Prend-taper 60mg
Imitrex inject 6mg
and all the O2 I can handle

P.S. the going joke around the house is " Anyone Got a spoon ?!? " if I can only remove the eye ......

Anyone Have a Spoon ??.. If i can just get the right eye out ..

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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: Dancin with the beast in NorCal Reply #1 - Oct 24^th, 2008 at 8:29pm Welcome to our growing group. Sounds like you have a pretty good handle on things. I'm on the same meds you are and they seem to working pretty good. Hang In There JPC
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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: Dancin with the beast in NorCal Reply #2 - Oct 24^th, 2008 at 10:48pm Welcome to the ~~insane asylum~~ family! It seems like you have a good handle on an attack plan. All of it sounds like a logical war readiness plan. If you can't get a good non-rebreather mask, the one at the link on the left oxygen info is worth its weight in gold! Good luck! Chuck
Back to top	CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame. Keep fire extinguisher available, and charged. IP Logged

JSCartier

CH.com Newbie

Offline

Pardon But has anyone
seen my brain ??

Posts: 20
Kodak, TN
Gender: male

Re: Dancin with the beast in NorCal
Reply #3 - Oct 25^th, 2008 at 2:28am

JPC & Chuck

The only Reason I might have a good handle on this is from all the info , trial and error and practical advice that you all have put together on this site.

I was diagnosed with CH by my Neuro last week so I am currently ramping up the verapmil 240mg and a 2 week 60mg Prend Taper .

I really can not tell at this point if the Prend-taper is working at all but it does seem to be keeping the CH's at around 5-6 and so far no need to go screaming to the ER ...

Does anyone else get mild to strong nausea right after taking Verapamil ? Though all this time I have ad no nausea until taking that med ..

In the middle of writing this post I had to make a pit stop to the store for some e-drinks and protein - Cheesy

It seems that the worst time for me at night is from 8pm to 3am then a little sleep and again from 6 am to 9 am with a couple of hits during the mid day

If not for the website and the Neuro finally diagnosing with CH then I would prob still be running around lost, missing work, and no idea about O2 aborts.

May you all have Wonder PF time and Lots of comfy undisturbed sleep

Anyone Have a Spoon ??.. If i can just get the right eye out ..

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Just Plain Carl

CH.com Old Timer

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IT IS WHAT IT IS

Posts: 449
Royal Oak, Michigan
Gender: male

Re: Dancin with the beast in NorCal
Reply #4 - Oct 25^th, 2008 at 10:28am

I got the ok to up my Vrap dosage to 360mg. Never noticed any nausea.

I did the 10 day Pred taper at first. Didn't seem to work as well as in the past. I just went on it again to see if I can bounce this thing outta here. I should be at the end of my cycle. (I hope)

Side effects for me are short term memory loss and exhaustion. The exhastion mainly due to no interupted sleep. The short term memory loss due to---------------uh--------I forget.

PFD's On Ya
JPC

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thebbz Ex Member	Re: Dancin with the beast in NorCal Reply #5 - Oct 26^th, 2008 at 2:30am The pred will cause some nausea. So does the pain. Houdy and welcome. thebb Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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