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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Canadian Newbie
        
(Message started by: mityfast on Jan 26^th, 2007, 3:13pm)

Title: Canadian Newbie
Post by mityfast on Jan 26^th, 2007, 3:13pm

Been suffering 28 years with only one full year of remission.
Clusters typically from September til February and then again April to June/July.
Meds i have tried, oxygen, gynergen, cafergot, verapamil, naproxene, medachlopramide, sumatriptan(inj), darvon, cardizem, lithium, valproic acid, migranol, sansert,xylocane, gabapentin, methysergide etc.
Current cycle is not as bad as some but i do not let my guard down as i have been fooled into thinking they will lessen in frequency and intensity with age only to be disappointed with the next killer cluster.
I have been lurking for some time and I feel for all of you dealing with this affliction. I am lucky to be the owner of a business where i can structure my daily routine and business life around my condition, and i have a great support system with my family. I do not know how you all handle the stress of CH and employment issues. Brave souls.
I have been involved in research programs for 15 years with an expert in clusters only to see him pass away a few years ago and have very little faith in the neuros i have had since. Trying a new one in Feb so i have my fingers crossed that perhaps a new cocktail of drugs will help.
I have never smoked a cigarette nor drank alcohol my entire life.
enough said
Hi all. Hope you are all having a cluster free moment.

Title: Re: Canadian Newbie
Post by thebbz on Jan 26^th, 2007, 3:19pm

Hello and welcome,
I have one comment,

Quote:

I do not know how you all handle the stress of CH and employment issues. Brave souls.

Stubborn more like. [smiley=laugh.gif]
Stay warm up there
jb

Title: Re: Canadian Newbie
Post by Guiseppi on Jan 26^th, 2007, 3:36pm

Welcome to the board and don't be afraid of re trying past drugs. My current regimen includes some that didn't work in the past cuz I used em wrong!!!! Good luck with the new neuro it's always such an adventure!!

Guiseppi

Title: Re: Canadian Newbie
Post by Richr8 on Jan 26^th, 2007, 3:37pm

on 01/26/07 at 15:13:22, mityfast wrote:

I do not know how you all handle the stress of CH and employment issues

Hi mty,
Welcome! I manage to crawl in to work almost every day, it's the rest of my life that suffers. Fortunately, i only impact myself. Kids are grown and gone and so is the wife. :)

Clearly dealing with work is one of the more difficult parts of dealing with CH. Although CH without a job would prolly be even harder, unlwess of course money is not an issue for you.

Title: Re: Canadian Newbie
Post by BB on Jan 26^th, 2007, 5:23pm

Hello and welcome,

All the best wishes to you and your business, hopefully you will have a looong remission soon.

Annette

Title: Re: Canadian Newbie
Post by artonio7 on Jan 26^th, 2007, 5:53pm

Hi Mityfast,

Welcome. I hope the new neuro does the trick for you in February. Until then keep your chin up, I'll add you to my prayer list.

with warm regards,
Tony

Title: Re: Canadian Newbie
Post by barry_sword on Jan 26^th, 2007, 6:13pm

Hi mityfast. Cool handle. Pleased to meet you, sorry about why you are here.

Barry

Title: Re: Canadian Newbie
Post by Grandma_Sweet_Boy on Jan 26^th, 2007, 10:00pm

Hey there - another Canadian and one that practically lives in my backyard.

I'm an Orillia girl (hold the comments - you know Orillia can kick Barrie's butt! ;;D).

Not living there anymore but go regularly as it's where most of my family is.

Welcome to the nuthouse - you won't find a nicer bunch of people anywhere. Stick around - read lots and don't be afraid to ask questions.

There are a couple of great neuros in Toronto - one of them particularly knows his "cluster stuff". If you need names, let me know and I'll get them for you.

Carol

Title: Re: Canadian Newbie
Post by mityfast on Jan 27^th, 2007, 9:54am

on 01/26/07 at 22:00:53, Grandma_Sweet_Boy wrote:

There are a couple of great neuros in Toronto - one of them particularly knows his "cluster stuff". If you need names, let me know and I'll get them for you.

Carol

Please let me know the Toronto neuro name and contact info.
Thank you

Title: Re: Canadian Newbie
Post by mityfast on Jan 27^th, 2007, 9:55am

Thanks to everyone for the warm welcome.

Title: Re: Canadian Newbie
Post by Grandma_Sweet_Boy on Jan 27^th, 2007, 12:14pm

on 01/27/07 at 09:54:12, mityfast wrote:

Please let me know the Toronto neuro name and contact info.
Thank you

I will get that for you on Monday when I return to my office. He's on my list of contact doctors that I use for work. Hang in there.

Carol

Title: Re: Canadian Newbie
Post by Drew37 on Jan 27^th, 2007, 7:51pm

Hello mityfast, welcome to the looney bin, sorry to hear that you too suffer from this affliction, there are lots of great people here & tons of hands on documentation, hang in there bud. A near neighbor.
Drew

Title: Re: Canadian Newbie
Post by Major on Jan 27^th, 2007, 11:16pm

Hi Mityfast -

Welcome from another Ontarian.

Here is the name of the neuro Carol/Grandma was referring to - Dr. Marek Gawel. He works out of Sunnybrook Hospital. http://www.sunnybrook.ca/research/scientists/GtoL/gawel .

The Wasser Pain Clinic at Mt. Sinai Hospital is another place to look into (416-586-4800 ext. 5997), although the wait times are supposed to be very long, and finally Dr. Gary Shapero at the Markham Headache and Pain Treatment Centre in Unionville 905.475.9700.

I'm sorry to hear you've been suffering for so long. You mentioned that you havd great family support - I'm a supporter too, and have found great strength in knowing there are others in my shoes. Your supporter might want to check into the supporters board.

Best of luck and welcome aboard.

Title: Re: Canadian Newbie
Post by Grandma_Sweet_Boy on Jan 28^th, 2007, 7:09am

Hey Lisa - thanks for coming to my rescue on this one.

Those names are all good in the field. Dr. Gawal is the one I was thinking of. I've heard very good things about him.

Good luck Mity!

Carol

Title: Re: Canadian Newbie
Post by glen jenkins on Feb 1^st, 2007, 12:26am

hello welcome ,i`m a fellow canadian suffer to , but from new brunswick,not very many of us from the east coast as ch` suffer`s.you have found a great bunch of people in here ,who you will soon come to realize, are the best support club you will ever fine ,truely amazing people ,not just for ch`s but everything in general ,don`t be shy to ask questions , post ideas or just shoot the shit if you like lol, i`m so thankful i found this site when i did. it really has had an impact on my life and i thank my lucky stars for them . wishing you pain free days and nights my friend glen

Title: Re: Canadian Newbie
Post by glen jenkins on Feb 1^st, 2007, 12:30am

if anyone is in the fredericton area of new brunswick , there is a nero there name , dr.mckelvey , he is excellant , just in case someone my need that info he really knows his stuff on ch`s

Title: Re: Canadian Newbie
Post by glen jenkins on Feb 1^st, 2007, 12:43am

how do i cope with these ch`s and work ? oddly enough i have never missed a days work from these ch`s and i`ve had they since 1990, i usually get them in the evening from 9pm til 11 or 12 ,but this cycle has been different . these one have usualy been around 3 or 4 in the morming ,and when they leave as you know they wipe you out , but sadly as it is , my dad passed away on the 12th of jan 2007 , so with the time i was off from that it has helped me alot