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Cluster Headache Help and Support >> Getting to Know Ya >> A brain tumor might be preferable! OUCH!!!
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Message started by BlueDog on Nov 13th, 2008 at 6:50pm

Title: A brain tumor might be preferable! OUCH!!!
Post by BlueDog on Nov 13th, 2008 at 6:50pm
in my 3rd week as first timer age 50.  waiting for an mri and im broke as it is already.  1st clinic gave me naproxen, omg, no relief.  2nd visit got fioricet and i am so frustrated.... the anticipation and fear of waiting to take the meds BEFORE the headache is truly agony... afraid to not take it soon enough.....   geeze.....I was joking with my friend that i was hoping my mri will show some sort of operable condition vs a lifetime of this hell!  Was looking up shadowing on the site today and was sure I knew what it was but had to make sure....  this really sucks...  i guess i need a new plan.  I take verapamil for high blood pressure but it's only 120mg daily... wonder if i should ask doc to up it but my budget has me at a clinic with very little info about the condition...  must find out about the oxygen treatments too....  I just want to say i am so sorry for all of us with this condition and (crying now) happy to have found you although it's not a happy time but thank you for being here.  I think the depression is getting to me and i think fioricet is contributing to the depression although i've only taken 2 doses so far.  Anyway, i'll be around reading and waiting for the answers as they come up...  thanks again..... bluedog

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Jonny on Nov 13th, 2008 at 7:02pm
It dont have to be hell, ive had this shit for 34 years....31 of them were chronic and im still here. I think we all cried when we found out there was this big CH family here.

My advice to you is to keep reading, knowledge is power over this fuck!

Welcome to the family my friend!  :)


Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Paul98 on Nov 13th, 2008 at 7:09pm
Hi BD-

Ditto to what the guy above me said!  It doesn't have to be hell.  With the right meds and the right attitude it is very managable.  Read and ask questions.  There is one heck of a lot of collective information here.

Hang in there!

-P.

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Just Plain Carl on Nov 13th, 2008 at 7:19pm
Welcome BlueDog,  I'm glad you have found us.  Lots of good info here.

Check with your Dr about Verapamil.  I take 360mg a day.  Some others here take even more.

Be sure to read up on oxygen, it really works.

                                         PFD's On Ya
                                                JPC

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Rolomatic on Nov 13th, 2008 at 7:26pm
Got O2, It does a cluster HA good! ;)

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by CH-HELL on Nov 13th, 2008 at 7:27pm
 Welcome BlueDog,  Hang in there keep reading every thing including all the links to the left.  If you have any questions feel free to ask,  we will try to answer what we can.  
 You are not alone,   Phil

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by coach_bill on Nov 13th, 2008 at 8:15pm
Welcome Bluedog, hang in their brother, ive had clusters for 18 years ( not chronic thank god ). You will learn to deal with it, the blues are just a part of it. Although it may be diffuclt to even think about whats next other than the next hit, you have to keep looking for your magic bullet, find some way or a new trick to shorten a hit or even better yet beat a oncoming hit with the info you learned here. It is so rewarding when i can steal one from the beast, its the best ever!!! So keep searching for a way to trick the beast and your name will soon  change from Bluedog to BIGDOG!!!  Be well.. Coach Bill.

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by CH-HELL on Nov 13th, 2008 at 8:40pm
[quote author=7356575740390 link=1226620243/1#1 date=1226620932] ive had this shit for 34 years....31 of them were chronic and im still here.


 Dang Jonny must be old ;D   102?

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by JP on Nov 13th, 2008 at 9:21pm
New member here also, 8 years with CH and still going

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by JP on Nov 13th, 2008 at 9:23pm
Has anyone been perscribed Maxalt?  I was yesterday instead of imitrex

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Linda_Howell on Nov 13th, 2008 at 10:15pm
Let me see if I understand what you said.


You've only had CH for 3 weeks and are wishing for a brain tumor?


   Correct me if I read that wrong.

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Garys_Girl on Nov 13th, 2008 at 10:56pm
BlueDog, please spend as much time as you can here learning about proper treatment, because your clinic is very poorly informed.  

The first thing you should look into is oxygen.  It works as an abortive.  15 - 25 minutes on it can knock the beast back.  There are threads here about locating affordable 02.  Bear in mind that what you seek is oxygen being delivered at a flow rate of 15 - 25 litres per minute (LPM) (MUCH higher than you see people who have emphysema or something like that using), and it should be delivered with a NON-REBREATHER mask - and, actually, the type of mask can make the difference between aborting an attack and not.  You can make one yourself, but it should have something like a 3 litre bag attached to it (much larger than the standard fare provided at most medical products places).

I would stop taking the Fiorcet.  Given that it has a barbituate in it, it IS likely contributing to your depression.

Go to any pharmacy or health food store, and purchase Melatonin.  Melatonin is produced in the body and helps regulate sleep cycles.  It helps many clusterheads get sleep and for some it stops the night-time hit(s).  Start with the 3mg and work your way up.  Most take somewhere between 9mg and 15mg.  Up to 18mg is safe.  The clusters appear to affect the adrenal system in many - so in addition to melatonin, you may want to get a blood test done to test your testosterone and cortisol levels.  Sometimes prescription testosterone can improve the situation.

Verapamil is a widely used preventative.  Typical doses are between 480mg and 960mg, so yes, discuss this with your Doctor.  If he's not familiar with clusters, perhaps he'll do a little research.

Consider adding a magnesium/calcium supplement.  It's the magnesium you want, but to keep a better balance of water in your intestinal system, it should be used in conjunction with the calcium.  Look for a supplement that has a 2:1 magnesium/calcium ratio, and go for 600mg of magnesium a day.  This will likely not help immediately, but over time you may see a real difference.

Many clusterheads find that caffeine (especially in combination with Taurine) really help to abort those attacks.  Look into any of the energy drink threads here.  

There is much more, but knowledge is your friend - and there is a lot of it to find here!

Laurie

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by BlueDog on Nov 13th, 2008 at 11:24pm
Thanks Laurie, i will be taking your info to my doctor...  and to all the fine people who have replied, thank you also, i feel very welcomed here, so many nice people for a bunch of clusterheads! lol

And to JP, you did read wrong... jokingly i said an OPERABLE condition would sound better than cluster headaches for a lifetime....  just a silly comment made out of pure frustration....  but a quick drilling of my skull to fix it still sounds tolerable based on the last 3 weeks of hell and the future outlook of ch's forever only....

anyway, my sincere thanks again to all...  PFDAN for all is my wish!

bluedog

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by CH-HELL on Nov 13th, 2008 at 11:43pm
Heres some links if your still having trouble..  ;)  Phil
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
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Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Rolomatic on Nov 14th, 2008 at 12:28am
Quote CH-hell
 Dang Jonny must be old ;D   102?


102 X 7 (dog years) = 714 (dam neer as old as Yoda)! :D

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by BlueDog on Nov 18th, 2008 at 2:57pm
2 DAYS WITH NO CH's!!!!!!!  Exactly when does one declare a break in the cycle anway.... feels like an eternity already... 2 nights of regular sleep feels like the first two in a lifetime.  

Anyway, thanks again to all... my abortive has been diet pepsi which has worked well (but keeps me up all night) and I finally was approved for my MRI a week from Friday...  my bottle of fioricet looks lonely on the bedside now.

Will be taking plenty of info on verapamil and 02 and the like to the doctor after the MRI for future readiness, I'm not going through a cluster again without plenty of amo...

Today is a great day, wishing PFDAN to all and THANKYOU THANKYOU to all again, this place feels like home already and it's only been a couple of weeks...  the info i've learned here is immeasurable.

The beast is at bay for now, may he lose your address too!

Thanks, BLUEDOG   :)

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by Jeannie on Nov 18th, 2008 at 5:11pm
Hey Blue,

Welcome.  Glad to hear you had a couple of pf nights.  I hope that it lasts!  If  you should need it....energy drinks work to help abort hits too.  They have more caffeine and taurine that speeds up the the delivery of the caffeine.  It may work faster than the Diet Pepsi.  Just a thought.  

I usually consider my cycle broken after a week or so with no hits or shadows.  I don't know for sure though till I take the beer test.  If I can have a Mich Ultra and not get hit, I know I'm in the clear!   I never try till I'm pretty sure that it's over though.  

PF wishes,

Jeannie

Title: Re: A brain tumor might be preferable! OUCH!!!
Post by BlueDog on Nov 19th, 2008 at 12:02am
>:(the beast is still in the house.....ffs!

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