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Steambug

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clock watching

Posts: 63
Worcestershire, UK

Got a result!!!
Mar 23^rd, 2009 at 11:15am

Thank you so much to everyone here for the advice and support

This morning I asked my doc for the sumatriptan Injections and Oxygen and he said YES!

I went to my GP this morning armed with printouts from OUCH(UK)'s website and the information sent to me in the membership pack,
I told him how awful my weekend had been, including yesterday's worst one since this cycle began. After 2 weeks of trying to convince him, I think the info from OUCH and the BNF finally tipped it in my favour. He said he would request the oxygen as urgent. I just hope I am in the group of people that it helps.

Going to try see if the injections are ok as the nasal spray makes me wretch/sick each time, so hopefully the injection wont

Thank you so much, I dont know what I would have done without the help I got here and from OUCH(UK)

Fran

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midwestbeth CH.com Sponsor Offline Posts: 1123 Edwardsville, IL Gender:	Re: Got a result!!! Reply #1 - Mar 23^rd, 2009 at 3:35pm Great news Fran. Always happy to hear about a Dr. who is willing to listen and learn. pf wishes to you! Beth
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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Got a result!!! Reply #2 - Mar 23^rd, 2009 at 3:54pm That is great news Fran! Hoping for good results for you.
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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: Got a result!!! Reply #3 - Mar 23^rd, 2009 at 4:08pm Ye Ha,way to go Fran! So glad to hear your MD had an open mind and you got what is needed to help you enjoy PFD.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Got a result!!! Reply #4 - Mar 23^rd, 2009 at 5:38pm That's GREAT news!!! The injections have never made me ill and have worked every time. Hope the 02 works as well for you as it has for me!!! Joe
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on my knees Ex Member	Re: Got a result!!! Reply #5 - Mar 23^rd, 2009 at 6:49pm results can happen when we are prepared. good for you!!!!
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Steambug CH.com Junior Offline clock watching Posts: 63 Worcestershire, UK	Re: Got a result!!! Reply #6 - Mar 23^rd, 2009 at 7:33pm thanks, used an injection tonight, wow what a difference - so much more effective!
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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

Posts: 5394
Greenville, North Carolina
Gender: male

Re: Got a result!!!
Reply #7 - Mar 23^rd, 2009 at 8:32pm

Steambug wrote on Mar 23^rd, 2009 at 7:33pm:

used an injection tonight, wow what a difference - so much more effective!

WOOHOO!!!

Let's hope that once you get your oxygen setup, you will not need to go to the injections, but on rare occasions! Are these the auto injector pens? If so, have you looked at the tip, behind the tab, on the left margin of you screen, labeled: imitrex tip? It tells you how you can get two or three uses out of one injector. I find that the half dose works just fine for me, and it gives me twice the available shots! It also does not make me feel the chest discomfort that the full injection does.

Good luck with your oxygen!

Chuck

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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Steambug

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Posts: 63
Worcestershire, UK

Re: Got a result!!!
Reply #8 - Mar 24^th, 2009 at 10:53am

hi Chuck

thanks for the info - I just looked at the tip info - thank you.

I dont like the auto-injector - it felt really brutal - I've injected myself with heparin in the past so I have no problem using a needle and syringe - I wish the imigran/imitrex came the same way!!

keeping fingers crossed the oxygen service contacts me soon - will be great not to need to use the injections too often!

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« Last Edit: Mar 24^th, 2009 at 7:13pm by Steambug »

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southwalessunshine

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Posts: 154
caerphilly uk
Gender: female

Re: Got a result!!!
Reply #9 - Mar 25^th, 2009 at 5:44am

Glad you're on your way. I too had no decent treatment until I came on here and was advised to print out as much as I could to give to the doc. My doc was pretty clueless about CH but really understanding...the first ever in my personal experience.
The oxygen suppliers are usually pretty quick, they're really helpful in setting up and showing you how to use it. Just a tip though, make sure they know the correct mask as when my 02 was ordered I got the wrong one and it took a good few days before I could use it as it had to be re ordered through the doctor surgery. I tell you it was a killer seeing it there and not being able to try it out. Most people take the 02 incorrectly and think it won't work for them, I was one of them. But there's a great piece on here that helps and now I take it properly it works on my kip 5's and under.
The injections are brutal and I always have to suck up the courage to inject, but if my partner is home I make him do it. I get some side effects from it which are uncomfortable....tightness across my face, neck and chest, dizziness generally not a nice feeling but it's worth it to get rid of the beast.
I hope you get the same relief I and many others have from your meds, it does change your quality of life to a degree and that's something in itself xxx

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keep your face to the sunshine and you will never see the shadow.&&Alone we can do so little, together we can do so much.&&Walking with a friend in the dark is better than walking alone in the light.&&Helen keller

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Steambug

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Posts: 63
Worcestershire, UK

Re: Got a result!!!
Reply #10 - Mar 26^th, 2009 at 11:47am

The O2 arrived yesterday and has been a complete godsend - I am so relieved it works for me, after using it last night along with the injection to good effect, I used it this morning on its own which worked really well and was great not to feel groggy afterwards which the injection does to me

My neuro just rang me and is really pleased that the GP gave me the injections and O2 and is going to see me in a few weeks to discuss preventative meds.

I finally feel I can breathe a bit after the complete nightmare of the past few weeks!

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Got a result!!! Reply #11 - Mar 26^th, 2009 at 12:44pm Yeah....I gaze at those silly green tanks with love in my eyes! It's amazing how much easier it is to face CH knowing you have a fairly dependable weapon to slay his sorry a$$ with! Can't tell you how happy I am it's working for you! Joe
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