Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Sharon, Ken (Acidcase) and Calvin - CHECK IN!
        
(Message started by: LeLimey on Aug 13^th, 2006, 6:08am)

Title: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by LeLimey on Aug 13^th, 2006, 6:08am

Okay peeps,
I know you're all going through this weekend with little or no meds and I've been thinking about you all and wondering how you got on last night and how you're getting through the days.

Updates please! I need to know you're all as okay as you can be until tomorrow.

Don't keep an idiot in suspense please ;)
Helen

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by Shazza on Aug 13^th, 2006, 10:36am

Hi Helen,

I have been coping ok, been taking co-codamol like they're sweets, which do nothing for the pain but let me cat nap, sleep is something I need right now!!
Will be ringing the neurology department first this tomorrow morning, wont hurt to try and see if they can fit me in any earlier than september!

Sharon x x

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 13^th, 2006, 5:14pm

Hey Guys or rather heygirls !

Been ok got hit pretty hard saturday morning infact really hard, got really pissed off that it was happening again, but after some rest decided get my sorry ass out the house and try and have a weekend !!

Suprise suprise woke up to it again this morning but not as bad as yesterday .

Looking forward to seeing the neurologist tomorrow and pushing to get some injections and oxygen will let you know how it goes,

Helen - thanks for all the support !!

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by LeLimey on Aug 13^th, 2006, 8:10pm

Well chaps and chapesses, good luck in the morning (well LATER in the morning!) I'll be wanting to know how you got on as soon as you can post so don't let me down!
Helen

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 14^th, 2006, 6:31am

Hey Hellen,

Went through it all again this morning, sitting at work feeling really edgy and pissed off, caved in and had a ciggie this morning (first since my cycle started) as i felt like i was going tear my skin off !

Oh the joy of it all .

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by LeLimey on Aug 14^th, 2006, 8:07am

What time is your appt kiddo?
I'll be thinking of you, at least you're going armed with a bit more info
Hurry up and get back!
Helen

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 14^th, 2006, 9:56am

Hey Helen

6:40Pm tonight its with a Harley St Neurologist!!company BUPA plan is a god send !!!!!

Will update when i get home .

Later

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 14^th, 2006, 3:54pm

Hey Helen,

Well the Neuro diagnosed me as being a Cluster head, he is setting up a MRI scan for me just to be on the safe side, and sending a list of things that my GP needs to right a prescription for,sumatriptan injection kit and i think a calcium blocker ?? can not remember the name of it but begins with a V, i will also be getting oxygen he mentioned that i should read up on the kind of mask i will need to get on the uk ouch site as my GP may have problems with this, so i think the guy is pretty clued up !!

All in all i think the neuro was great and very understanding, have a follow up next monday as he wants to know how the blockers are working for me .

Any advice on the oxyen side of things? i read you use it

Ken

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by serendipity on Aug 14^th, 2006, 4:50pm

I have some. I highly recommend buying a Clustermasx. You can use a standard nonrebreather mask, but I read about the Clustermasx on this site and ordered one (it came from the UK, incidentally) for $25 USD and it's the best thing ever!

Make sure he writes your prescription for at least 12 liters per minute. Some people need less, and some more. When I'm having a more persistent CH, I sometimes crank mine up to 15 liters per minute.

The important things are the mask and the liter flow. One of those little nose things won't help you, since you have to have 100% oxygen (or as close as you can get to it) for 10-20 minutes.

I'm happy to hear that there's a light at the end of your tunnel!

P.S. Is that you in your picture or just some random hottie? ;)

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by chewy on Aug 14^th, 2006, 5:00pm

Quote:

a prescription for,sumatriptan injection kit and i think a calcium blocker ?? can not remember the name of it but begins with a V, i will also be getting oxygen he mentioned that i should read up on the kind of mask i will need to get on the uk ouch site as my GP may have problems with this, so i think the guy is pretty clued up !!

Clued up? I'll say he's clued up! Sounds like the perfect arsenal. The "V" is probably verapamil, or I think its called something a little differant over on your side of the pond. Its the preventative of choice.

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 14^th, 2006, 5:18pm

Yeah i must admit i think i did really well with the Neuro i had a list of things including meds that i read up on from the site that i was going to give to him but didnt need to, will get all the meds tomorrow and the oxygen later in the week - really does feel like there is a light at the end of the tunnel now .

Just hope others are as lucky as me.

Hey serendipity - that is me in the picture , you made me blush ..lol ;)

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by LeLimey on Aug 14^th, 2006, 6:13pm

Serendipity I told you we breed 'em gorgeous over here! ;) Ken is one of the mingers.. you should see the hunks PHWOARR! (Sorry Ken, couldn't resist ::) )

I'm glad you've had a good experience with your neuro, I was talking to one poor soul this evening who's had the complete opposite so it shows what a post code lottery it is.

Chewy is right, it is Verapamil, one of the drugs that do actually keep the same name in both countries.

The mask you want is a clustermasx available from www.clustermasx.com I will never be without one for either myself or my son Jasper again as long as l live. Its my most essential and valued possession and after my kids its the first thing I'd save from a burning house.

When your GP fills in a HOOF for O2 ask him to tick the box for Ambulatory O2 as well so that you can have little cylinders as well as big 'uns for carrying around. (See.. size IS important!)

Have you got an ECG arranged before starting the verap? Don't forget you'll need to have one at every increase of dose and you may need a few increases before you get to the magic moment :)

Really glad to hear you sounding so confident now, its made me smile
Take care and keep posting about how you're getting on
Helen

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by Shazza on Aug 15^th, 2006, 7:10am

Hey Ken,
Glad to hear your getting sorted! and that you have a sound neuro. Hopefully my turn soon :D

Sharon x x

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 15^th, 2006, 8:18am

Hey Shazza,

Thanks , got nailed last night and today, took the day off work, its hard to stay positive but picking up my injection kit at 3:30 today and getting an ecg in preperation for the calcium blockers .

Ken

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by Shazza on Aug 15^th, 2006, 8:21am

Wow

Things are moving pretty quick for you then, I imagined it would take weeks in order for things to getting sorted!!!!
Bet It's such a relief?
xx

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by LeLimey on Aug 15^th, 2006, 8:30am

ECG's can usually be done at the doctors surgery by the nurse, its no big deal (just sounds it!) It takes longer for them to put all the little sticky things on you than to do the ECG
I'm sorry you had a rough night Ken, hopefully now you're armed you'll be able to get going on aborting.
Let us know how you do tonight won't you?

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by calvin_b_2000 on Aug 15^th, 2006, 12:10pm

I'm here i had none yesterday that was great :D

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by LeLimey on Aug 15^th, 2006, 12:22pm

great news Calvin! Long may it continue for you but in the meantime get building your arsenal! The rule of the game is stockpile, stockpile, stockpile!

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 15^th, 2006, 1:56pm

Hi Guys,

Well got my Imigran injections kit 2 x 6 mg and 3 verapamil hydrochloride tabs to keep me going till i see the Dr again on thursday (not sure why she wants to see me again before i get more meds) and will saught out the oxygen also had my ECG and last but not least my MRI tomorrow at 10:45 .

Oh and also have a Clustermasx in the post on the way to me in prep for my oxygen tank - thanks Helen and Serendipity for letting me know about that .

Lets see this s.o.b try fuck with me tonight !!!

( Should be read while listening to the theme tune to Rocky playing )

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by Shazza on Aug 15^th, 2006, 2:30pm

Really pleased you got what you need!
Let us know about how ur MRI scan goes hun

Shazza xx

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by thebbz on Aug 15^th, 2006, 8:56pm

Keep up the good work Mr. Case. You have just completed in a month, what most have taken years to accomplish. I just love to read threads like this. Rock on
jb

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by calvin_b_2000 on Aug 15^th, 2006, 9:04pm

Hey i went to Dr today he gave me neurontin in hopes that it will prevent the attacks i will get a MRI next week.

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 16^th, 2006, 4:21am

Hey Guys,

Just wanted to add an update after last night my first night after taking verapamil - well belevie it or not the beast didnt turn up last night or this morning - first night in nearly 4 weeks PF !!!!.

Now today i still feel the shadows but PF still!! pretty amped about that , how quickly do people respond to Verapamil could one tablet already have helped or is the beast just toying with me ?

I know this is going to sound odd but i am almost dissapointed that i didnt get to try out my injection kit ...lol i think i must be going mad ;;D

Hope you are all doing well/PF and have a kick ass day .

Ken

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by LeLimey on Aug 16^th, 2006, 4:59am

People don't generally respond that fast to verapamil, it can take up to two weeks to kick in which is why it's often given with a prednisolone taper (which WILL work that fast!)
My money is on either the beast playing with you or it being the end of your cycle. As for your imi, don't leave home without it!
Good look trouble, I do hope it IS the end for you! :)Helen

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by chopmyheadoff on Aug 16^th, 2006, 6:48am

on 08/16/06 at 04:21:48, acidcase wrote:

alreet mate, your story is so familiar to me !!
i was chronic for 7 years and from the day i started verapamil a month or so ago i have been pain free !!

i was like u in that i kind of wanted to get a ch to try out the injectors.
about 2 weeks in i forgot to take the verapamil one night and again the next morning.
i got hit mildly that afternoon and used an injection.
BANG - GONE within seconds !!!

the stuff kicks ass :) ;;D

glad your sorted mate. stick around to share your results wont you !!

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 17^th, 2006, 9:42am

Feeling pretty sh1t today .

2nd day PF i should be happy as can be, but the head has been feeling odd all day cant really describe it and not to sure why but really depressed is it possible that CH can have an effect on seratonine levels , i dont know maybe its just that i feel completely exhausted after the last few weeks.

Went back to my GP to get my full prescription and had an ecg before upping my v dose to 240 and apparently i have an incomplete right bundle branch block !!! the gp wanted to stop me taking verapamil but she spoke to a heart specialist and beleives this is a normal variant non the less it scared the crap out of me and didnt help how i feel .

Also i feel really angry and edgy .

Bolocks !! sorry for the moan dont want to bring any one down

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by chopmyheadoff on Aug 17^th, 2006, 10:07am

mate , im not sure if the CH CAUSES a change in seretonin but there DEFINATELY is a corrolation between CH and seretonin.

I know what you mean about the depression mate.
im chronic so im hit all the time but now and again i get a week or 10 days of REAL bad ass ones all in a row.

the last time this hapenned it was a real killer. for the first time ever i thought about suicide. just because i simply couldnt take it anymore. id get home from work, get hit, doze a bit, get hit again and again all night, ALL KIP 10+.

it was aweful.

anyway mate, im on verapamil and besides a few mild breakthroughs iv been pf for a month.

but after that week, i was left feeling really really low. i didnt want to speak to anyone and it was a pretty dark point of my life.

the good news is IT DOES PASS - stick with it matey and come here if your feeling down ..

peace man
chop

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by Shazza on Aug 17^th, 2006, 11:09am

Hi Ken,

Sorry to here you feeling like shit, I dont know about you but I'm letting every little thing get to me, depressing me. Hopefully the mood will lift after a bit of time. You've had alot of info to digest in the last few days and it all adds up.

Hope your feeling better soon hun xx

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by serendipity on Aug 17^th, 2006, 1:02pm

I don't think it's uncommon to feel depressed and anxious during a cycle (or ALL THE TIME, if you're chronic). These things are very physically taxing, and it sometimes gets to the point where you're asking, "Why me?" and justifiably feeling sorry for yourself and just generally pissed off at the world.

Give yourself permission to feel depressed, angry and tired. I don't know many people who wouldn't feel that way in your (our) situation. But remember, better days are ahead. Your medications will kick in and you'll soon be leaving the bad days behind you.

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by acidcase on Aug 21^st, 2006, 3:46pm

Hi everyone,

Well good news been PF since end of last week ;;D

And saw the Neurologist today to get my MRI results back and everything came up clear so looks like climbed the final wall !!!

I have a month worth of Verapamil left witch the Neurologist said i could continue to take, but all in all looks like my cycle has come to an end .

I am starting to feel like me again .

Just want to say thanks to all of you for the support especially Helen, Shazza and Serendipty .

Will stop by from time to time and see how every one is doing and offer support where i can .

PF Ken

Title: Re: Sharon, Ken (Acidcase) and Calvin - CHECK IN!
Post by Shazza on Aug 21^st, 2006, 5:25pm

Hi Ken,

Glad to hear you are PF and fingers crossed are for a while. Also glad MRI was clear and no more fretting over that!

Keep Smiling ;)

Shazza x x