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        Cluster Headache Help and Support >> Cluster Headache Specific >> Neuro appointment today-updates
        
(Message started by: MorePower on Jul 20^th, 2006, 9:35am)

Title: Neuro appointment today-updates
Post by MorePower on Jul 20^th, 2006, 9:35am

Hi ya'll. I have a second Neuro appointment today that I begged the secretary for as my GD is on holidays for 6 weeks. I stated that my CH's have gone from min 2 a day to 4 to 12 a day and only once I had 20 in one day. With intensity increasing as well. They gave me the appoint within 2 weeks. Also I have a very close friend that has a foundation in London that he makes grants to. He made a few phone calls and inquired for me about the Lawson Reasearch Institute here in London Ontario. The Lawson Ins. is world renown for inventing the MRI and and many other medical break throughs right here in London. They do so much research and are 10 yrs ahead of research even before pharmacy companies and Dr's know about things. He said that they might already be doing research on our disease. He was going to look into it for us. As well, there is a headache clinic in London that I am going to try and get into by referal by a Dr.Copper. He had trained in Harvard and has a mile long resume, so I am very confident if I get in touch with this man. I am so working diligently trying to get help to fight and hopefully pass any new medical info along to you guys as well. I am past the denial stage and now have my head out of my butt from previous posts and now am working positive towards helping myself. The depression is still very strong and can not help myself but cry when I have severe attacks. That is something I am still trying to have acceptance from. But now I wanna fight this beast.
Just giving you an update as I said I would.
Sorry for those whom complain I write"War and Peace"
Have a Pain Free Day
God Bless

Title: Re: Neuro appointment today-updates
Post by starlight on Jul 20^th, 2006, 10:54am

Morepower,

I wish you good luck at your appointment today. I am sure that Headache Clinic in London must have some good info--you guys seem to be smartie pants over there in the UK :)
Thank you for posting. I have given into depression in the past but the only way is to keep fighting until you find someone who can help--it is so much easier said than done when these headaches start getting frequent like yours are. You are a strong person and will help others by being like that.
I hope you get some good relief very soon. Please let us know how your appointment goes .

Starlight

Title: Re: Neuro appointment today-updates
Post by Margi on Jul 20^th, 2006, 11:16am

uh, Starlight - London, Ontario is in Canada. Last time I checked, we weren't part of the UK.

Morepower - please talk to them about getting some oxygen. Social assistance can help you with the cost. It has to be a high flow rate, non-rebreather mask and you need a prescription for the mask here in Canada.

PLEASE ask to get off that imitrex. You can PROVE now that it's caused an increase in your attacks! Please ask to try Zomig instead.

Also, you mention that you had a day with 20 attacks. Please ask them to give you a script for indomethacin. This might not be cluster if you're getting that many in a day. It could be CPH instead (chronic paroxysmal hemicrania) - same pain, just shorter duration. It's physically impossible to get that many cluster attacks in a 24 hour period. But you can get that many CPH attacks. Indo can cure CPH in most cases.

Seriously, please take some of the advice you've repeatedly been given here in your threads.

Title: Re: Neuro appointment today-updates
Post by starlight on Jul 20^th, 2006, 11:20am

I am sorry I hadn't checked for the flag in the corner--thought it was London, England--well, anyway, I am sure your docs in Canada are smartie pants too :) Sorry for the confusion.

Title: Re: Neuro appointment today-updates
Post by MorePower on Jul 20^th, 2006, 11:54pm

umm I am an idiot.I wrote in my schedule 9:15, but read it as 4:15, so at 10am this morning I called the office to confirm and she said I had missed my appointment and she believed me because A a 4 and a 9 look similar and also they don't take appointments after 3 and also most wouldn't call to confirm an appointment 30 minutes after they miss there appointment. So I begged and pleaded and got an appointment for this Monday at 2:45pm and a $25 cash non show up fee, but thats fine. I deserve it. It was an honest mistake on my part. I have a ton of print offs from this board. I have got my amo. I mentioned on a prev thred I used the Zomig spray but really didn't like it because it took forever to work and it didn't work as strong and the after taste in my throat mad me wanna throw up, so i was hoping to find out if there was an injectable Zomig???? Anyhow
You all have a PainFree day, espcecially PainFree NIGHT!

Title: Re: Neuro appointment today-updates
Post by Margi on Jul 21^st, 2006, 10:02am

to my knowledge, there is not an injectible form of Zomig but there is the Rapid Melt tablets that you put under your tongue. They work quickly.

How many times a day are you injecting yourself with Imitrex?

Title: Re: Neuro appointment today-updates
Post by MorePower on Jul 21^st, 2006, 10:42am

My GD said never more than once a day. My nuero doc said you can go twice a day. Me, I have never done more than once a day. Nuero also said do not max out no more than 10 doses per month because of side effects. I rarely use it. Only when in public where I can't hide, or when I have to sleep and I have an appointment in the early morning and don't feel like battling out a 1-3 hour fight. Like last night. I took a shot, cause I had stuff to do today. I rarely use it because my attacks increase.
I always try advil, multiple strong cups of coffee,pop(no redbull-makes me vomit), and I am on 100mg per day of topomax. This will all change Monday when i see the nuero. I got my amo, and my friend that has the Foundation that is trying to help me with the Lawson Research Institute trying to find out if they are doing any research on our disease also will try to get into the headache clinic. I am trying people. I am trying.

Thanks for the support
Have a pain free day, especially Pain Free NIGHT

Title: Re: Neuro appointment today-updates
Post by NONI on Jul 25^th, 2006, 7:32pm

To Morepower

Sorry could'nt pm you back from last message,,it seems that all you're info is gone ..

It was nice talkin to ya,,from a fellow ch'er and Canadian

NoNI

Title: Re: Neuro appointment today-updates
Post by chopmyheadoff on Jul 26^th, 2006, 3:42am

keep your chin up bro . and keep us posted on how your appointment goes !!

provided you make it this time
(tsk tsk, i thought my 4 was a 9 . . . that old chestnut)

8) ::) :-X [smiley=laugh.gif]