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        New Message Board Archives >> 2004 Posts >> Hi and new, can you help?
        
(Message started by: broomhilda on Jan 31st, 2004, 7:39pm)
Title: Hi and new, can you help?
Post by broomhilda on Jan 31st, 2004, 7:39pm
Hello everyone!!!! I am new here and want to thank you for being a bright light in my dark days of five weeks into my first cycle. I am 34 years old and diagnosed by gp four weeks ago. I will see a neuro next week and armed with loads of stuff from all of you thanks!!!! ;;D
I am currently on 75 mg of Topamax, 240 of verap and imitrex, O2 not covered in BC and still trying to get it. Some relief(clusters at night pretty bad) but I am getting pains in my right kidney, whassup with that... any feedback will help, please [smiley=huh.gif]
Thanks so much and sooooo glad to be aboard with all of you when I felt alone in this! :)
Title: Re: Hi and new, can you help?
Post by bobkip on Jan 31st, 2004, 8:10pm
Hi Broomie,
Sorry you're here but welcome. It seems you've done your homework well. There are other ways to get O2,ie welding O2. You don't need a script for it and it works just as well. Getting it set up takes some doing but jonny and possibly Margi (fellow Canadien) could help. It works wonders for me, woke up today with a 6 to 7 and 5 minutes of O2 kicked the beast's butt. It does amaze me that a progressive nation like yours still doesn't recognize O2 as a treatment/abortive for CH. You guys gotta work on that. And do join OUCH.
pf
Kip
Title: Re: Hi and new, can you help?
Post by Cerberus on Jan 31st, 2004, 8:33pm
Broomhilda,

 A referrence to the old comic strip or a phonetically challenged opera singer? (sorry had ta ask) :D. First cycle eh? (I said eh like a Canadian ;;D) Anyway, sounds like you are on the right path, just need the O2 and yer all set unless one or more quit workin for ya.
 The pain in the kidney area may be caused by the recent and massive intake of medications, many are processed by the kidneys and/or liver. Drink lots of water and or cranberry juice, and if the pain worstens or persists for more than a few days see a doctor about it. Its kinda like takin high doses of tylenol or ibuprofen can cause irritation of the kidneys or liver.

Ramon
Title: Re: Hi and new, can you help?
Post by DaveHar on Jan 31st, 2004, 8:45pm
Sorry to see you here but very glad you found us! Tell us more about your cycle and how you found us. Do you have a supporter? As far as the kidneys go I can't help but what Raymon said sounds as logical to me as any reason I have ever heard. I have been lucky so far and have not had any real side effects from the depakote or trex but when I have anything that does not feel right I let my doc neuro know ASAP just in case and I recomend that you do the same.

be sure to join us at http://www.clusterheadaches.org and http://www.headachesupportgroups.com as well as the chat here on this site.

When times get tough we are a family that pulls together to help each other through it.

Dave
Title: Re: Hi and new, can you help?
Post by thomas on Jan 31st, 2004, 9:38pm
Hits at night?  Melatonin is worth a try....
Title: Re: Hi and new, can you help?
Post by broomhilda on Jan 31st, 2004, 10:42pm
Hi everyone, thanks for the replies! I found all of you when I got diagnosed and queried cluster headaches and have been looming since and just joined. I have been in the chat room and hope to go when I can!!!! Thanks for the input Ramon, my husband bought me a water cooler for Xmas who would have thought it would have come in so handy!!!!! ;;D I just sent him out for cranberry juice, his support has been in keeping me in hand with imitrex, food and stuff, as he does not know what else to do at times, I am sure you all know, its the do not touch me, I need to pace, go away thing at times >:(
Things will get better I know, its hard, I am in the helping profession so asking for help has been hard but here I am and its been great!
Yes, us non progressive canadians and no O2, will keep looking around though, I will get it somehow!!!!

ps- broomhilda is a reference to the old comic character, I got it from an ex who used to tell me to get on my broomstick and fly away!!!!!!!!!!!! ;;D

Thanks all PF night!

will join OUCH asap!!!!!!!!!
be in the chat soon!
Title: Re: Hi and new, can you help?
Post by Tiannia on Feb 1st, 2004, 1:10am
After my nasty experiance, keep an eye on your topomax.  For me I ended up with bad abdominal craps, stomach and kidney focalized, and vomiting from the tomopax. Stopped as soon as I stopped taking it.  So please make sure that you take lots of water and dont ramp up too quickly on that drug.  It might work wonders for those that can handle the side effects, but if you cant if can be really bad.  

Tia
Title: Re: Hi and new, can you help?
Post by tsayswhy on Feb 1st, 2004, 2:06am
welcome broomhilda

first cycle can be tough, but it looks like you have a great GP good luck and wishing you pf days

   tsays
Title: Re: Hi and new, can you help?
Post by Kirk on Feb 1st, 2004, 8:25am
Welcome broom test pilot. Other than O2 looks like you have it all rounded up.
Way to go. [smiley=thumb.gif]

TTFN [smiley=wave.gif]
Title: Re: Hi and new, can you help?
Post by stevegeebe on Feb 1st, 2004, 8:32am
No...you're not alone.

May be the single greatest thing about this place.

Welcome broom.

Steve G
Title: Re: Hi and new, can you help?
Post by dougW on Feb 1st, 2004, 10:06am
Broomhilda:  Let's talk Oxygen.  I'm over on Vancouver Island, and there are several clusterheads in and around Vancouver.  

I pay $20 per month for tank and regulator rental.  Refils are about $25 each.  The Oxygen suppliers are great in this area, they helped us out at the Vancouver convention in 2002.

My e-mail is dawright@telus.net

Or find us at www.clusterheadaches.ca  
        OUCH Canada

Doug Wright
Title: Re: Hi and new, can you help?
Post by broomhilda on Feb 1st, 2004, 1:34pm
Hi everyone, thanks for all your replies and greetings! :D
Had a bad night and onto a bad day but am here smiling with all your support!!!!!
Tiannia, have been reading your story :'( very closely watching the topamax, so I am not ramping up till I see the neuro next week because of the side effect and this stange pain [smiley=huh.gif]. Thanks I hope you are feeling better!

Doug, I have been trying for days to get to OUCH.ca and the Canadian sites to no avail so I will e mail directly, thanks so much, I was going to try E Bay next for O2, I knew there would have to be a way to get it!!!! Thanks!!!!!!!!!!!!!!!!!!!!!!!!
And thanks again to all for your support, enjoy the Super Bowl if your watching, wishing you PF day! :D
Title: Re: Hi and new, can you help?
Post by Charlie on Feb 1st, 2004, 4:24pm
Welcome Broom and I can't add much but O2 is definitely worth a shot.  Sorry you are experiencing this horror. Here are two links that might be useful:

http://www.netsync.net/users/charlies/

This one is to help others understand that this has nothing to do with what is thought of as "headache:"

"http://www.ouch-uk.org/ch/note_colleagues.cfm"

Charlie
Title: Re: Hi and new, can you help?
Post by Little Deb on Feb 1st, 2004, 9:01pm
Welcome!

Little Deb
Raleigh, NC
Title: Re: Hi and new, can you help?
Post by benj on Feb 2nd, 2004, 8:44am
sorry you have to have it - although you're not alone.

At least you found this place quickly (not to mention being diagnosed quickly as well) so you can tackle the beast at the doorstep. I've just started Verapamil myself after years of Imigran (Imitrex as you northern hemisphere-ers call it!) and that seems to be helping. Good luck - you know where we are..
Title: Re: Hi and new, can you help?
Post by Paigelle on Feb 2nd, 2004, 9:28am
Welcome to our own little part of the world!
Title: Re: Hi and new, can you help?
Post by Margi on Feb 2nd, 2004, 10:54am
broomhilda,
I apologize that we have been having some server errors at the Canadian site.  It is getting there, it seems to be working better this morning.

Doug is exactly right.  O2 IS available in Canada and very affordable, even without insurance.  You do need a prescription for it, to get a supply from Medigas, Praxair or Vital Aire, however, so that means that you will have to get that from your doctor.  We have a list of cluster-knowledgeable doctors organized by province over at our website, so check it out.  Please feel free to register for our new message board and participate in some Canadian cluster support as well.

I'm getting reports that just typing www.clusterheadaches.ca isn't working and I'm checking into that.  So type http://www.clusterheadaches.ca to get there instead.  Click on the support board tab above the logo to find our message board.  

We also have printouts there that you can take to your doctor that detail how oxygen is used for clusterheadaches.
Title: Re: Hi and new, can you help?
Post by broomhilda on Feb 2nd, 2004, 5:57pm
Hi everyone, glad to be here, still trying to get to O2 in canada!!!!!!!
Thanks for all your support, going to try melatonin as well, funny thing about us Canadians still have to run over the border to get that as well.. strange eh!!!!! No O2, easily or Melatonin!!!!!!!

Tnaks again to all you have been helpful in my new journey!
Title: Re: Hi and new, can you help?
Post by Margi on Feb 3rd, 2004, 9:45am
Again, Broomhilda, you've sadly gotten misinformation about cluster treatments available in Canada.  Melatonin became available in Canada January 1 of this year.  We talk about it on the Canadian board and I believe there is a post here about it, too.  Doug Wright, our OUCH Canada president, gave an excellent talk about the benefits of using Melatonin at the American OUCH Convention (held in Vancouver) in 2002.  
Lots of good information out there and much better treatment available at home in Canada now for cluster folks.  Take heart!  :)
Title: Re: Hi and new, can you help?
Post by Peppermint on Feb 3rd, 2004, 9:55am

on 02/03/04 at 09:45:00, Margi wrote:
 Melatonin became available in Canada January 1 of this year.  
         xxxsnipxxxx  much better treatment available at home in Canada now for cluster folks.


Margi, didn't know melatonin is now available in Canada.  Thanks for putting that up here, I'll pass it on!
Is Canadian healthcare changing dramatically?  Before this, I've only, sadly, heard negative things about healthcare there.

Pep
Title: Re: Hi and new, can you help?
Post by Margi on Feb 3rd, 2004, 10:53am
Hi Patty,
Sadly, I think our Canadian system gets some really bad press.  Granted, we have gone through some drastic cuts in the last few years, but we are still able to visit the general practitioner (and specialists with a referral from a g.p.) for free if we have Provincial Health Care coverage.  If we have insurance through our employment, prescription drugs are fully covered (with an average benefit plan).  Many employers cover this insurance at little or no cost to the employee (for both provincial health care and drug coverage).  I just filled prescriptions for Imitrex and Verapamil for the next few months for Mike and there was no charge, and there are no deductions from my paycheque for my health care coverage.  6 imitrex inhalers cost $180 Cdn and 120 Verapamil are about $40.  Cost to me?  Nada.  

So...my long winded answer to your question is...no it's not so bad here!  It could be a LOT worse!! ;)

AND more and more doctors are becoming more cluster educated, so availability of oxygen and cluster drugs have become MUCH more accessible in the last few years (thanks to organizations such as O.U.C.H.!!)  
Title: Re: Hi and new, can you help?
Post by Peppermint on Feb 3rd, 2004, 12:18pm
First off.. broomhilda.. jeez, I didn't even say hi..  :P

WELCOME !!!  ;;D So glad you find you found this site, it is a fountain of experience.  As you can see, lots of knowledgeable people here are willing to shine a light for you.  

Margi, that sounds a hell of a lot better than what I heard in the past... really.  No copays?  Wow.  Excellent.  I guess it depends on who your doc is and what kind of insurance you have too.

Wasn't long winded.. but I like wind -
http://www.multimediapalace.com/misc/misc-gifs/sailboat.gif

Pep
Title: Re: Hi and new, can you help?
Post by Margi on Feb 3rd, 2004, 2:31pm
Hi Patty,
I think maybe "co-pay" means something different in Canada than it does in the States.  Here, it means if your insurance plan only covers, say 80% of your meds and dental, and your spouse has a plan through their work - you can submit the portion you don't get paid for to your spouse's plan and, chances are, you'll get 100% coverage without having to spend a dime out of your own pocket.  It works that way for dental, chiro, massage, podiatry, psychiatry, etc. too.  
Now, I'm talking about how it is in Alberta - one Canadian province.  I know each province has different regs, but I believe it's basically the same idea.  Except Ontario (I think) doesn't charge you for the Provincial Health Care plan (but I could be wrong about that).  There are instances when we are 13 separate little countries up here, instead of one (when it comes to insurance differences).
Title: Re: Hi and new, can you help?
Post by broomhilda on Feb 3rd, 2004, 3:49pm
Hi everyone and thanks again for all your replies!!!! Hi Pep! :)
Margi, I have been in contact with Doug and have been trying OUCH.ca to no avail, so I am back here. Thanks for your input I am learning. I did not know you could get Melatonin here, and Doug is helping me on the O2 leads!!!! Thank goodness! Margi could you e mail me, or anyone can at broomhilda@shaw.ca, love to chat! I have no knowledge of co-pay and am close to 900.00$ out of pocket on imitrex while I wait for my plan to re-imburse me so any help from a fellow BC'er would help as well! And thanks to all you clusterheads!!!!!!! I see the neuro in two days!Hope he can help as much as you all have!!!!!!!!!!! ;;D
Title: Re: Hi and new, can you help?
Post by Margi on Feb 3rd, 2004, 4:21pm
Hi Again
Can you tell me what kind of errors you're getting when you try to load the Canadian website?  We had a major bug fix yesterday and it all is working now.  I see you have successfully registered for our message board.

Make sure when you bookmark our site, you mark it as http://www.clusterheadaches.ca (not just www.clusterheadaches.ca).  Just click on the support tab above the logo to go to the message board - there is another link there for you.

As to being out of pocket for meds....most Shoppers Drug Marts and London Drugs accept direct pays from insurance companies.  Who is your insurance with?  Or are you trying to buy your meds from Safeway - I know they sometimes won't accept direct pay...
Title: Re: Hi and new, can you help?
Post by broomhilda on Feb 3rd, 2004, 5:48pm
Hi Margi, on the site when I go to login it says the page is unavailable... no luck, I will try again soon, I am at work so trying when I can!!!!!( could get in trouble here)!
I filled my prescription at Save on, who knew may be I will call them and ask if they direct pay, my plans are with Blue Cross(pacific) both mine and my spouses!
Thanks! :D


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