Vickle

Thanks Batch. The burning is in the right occipital area (back of head). I hugely appreciate the info on getting the 25 (oh)d testing. I was doing the d3 before without much luck. I am willing to start from scratch again with it. Also, great info about lyrica. Thanks to you all so much for your feedback and support. You all are life savers. Hugs and pfw

Had appointment with my neurologist this week. One of the things we discussed was the ongoing burning sensation in my right occipital area. He suggested it may be neuropathic pain and prescribed Lyrica. Any other chronic mish mosh heads been diagnosed with this? Feedback on Lyrica? I have not started taking it yet.

I'm just curious and thinking out loud here. But if so little is known about primary headaches in general, who's to say that the slightest variations in ch presentation could make or not make a huge difference to the outcomes of such treatments. Things that make me go hrmmmmm...

If this is available in Canada I would guinee pig for this. I am going to draft an e mail to my neuro.

I am so stoked. Flight and hotel booked last month. I went a couple years ago in Vegas. But I was so overwhelmed and kept to myself most of the time. Even stayed at a different hotel. Lol Im even more stoked that so many fellow Canucks will be there. Rock on! Group hug.

It's official...i had a most fantastic compounding of pharmacist scouring the globe for the skinny on Sansert. He really did pull out all the stops. It's a matter of timing and how much you can afford to pay. My busting supplies have run dry. My crop moulded out. Neuro doesn't want to repeat the nerve block because the last one in January saw my migraine and cluster activity pop over to the left side about 25 hours after. So it's me all the old school abortives. The trex is staring at me...and now I am inclined to use it. Oxygen is still helpful thank God. Aborts about 80% of attacks in 10-20. Thanks for tolerating my whining and snivelling. I know y'all are fighting too. Cheers!

Proud and humbled.

ClusterHeadSurvivor, You have lived one of my fears, a hit at the dentist. As yet they always happen right after a dentist visit. Not too long ago I was looking for a new GP. One I had met with suggested to me that my depression has caused my ch. Needless to say, he is not my doc. Cheers and pfws all.

I send my love and kick ass vibes with you guys. I am unbelievably proud to know so many fantastic and dedicated people. Thank you to all the attendee's of HOH from the bottom of my heart.

ClusterHeadSurvivor, Crazy how so many of us have had that negative experience. this is my 4th neuro in some 15 years. It took me so long and so many life lessons to gather the confidence to start really advocating for myself. And thanks to this web site, I found the help and resources I've needed to keep positive and help myself. No magic miracles, but hoping and coping is worth it's weight in gold.

Well I had my first visit with Dr.Robinson at VGH today. I have to say it was so incredibly wonderful to have a candid conversation about my noggin. This was the first visit with a neuro since my diagnosis of ch almost a couple years ago. I had an occipital nerve block on the right side. I had brought up the botox experience had by Hipshot. He said that he has done the same thing to one other patient with the botox and had the same result. It makes him super nervous to do the botox in those spots. But will do it if other things fail. He's totally cool with my busting. So I came away with imitrex injections and axert oral (for migraines). What a difference it is to be heard!

I briefly worked in a psychiatric ward about 20 years ago. I remember one of the patients you to suction her mouth to that water faucet and guzzle. She actually got intoxicated from it messing up her electrolytes. I drink typically about 6-8 glasses of water a day, plus tea and coffee. After trying the water thing for nearly two weeks, it did not affect my ch one way or the other. It did not help my migraine. It seemed to aggravate my tension type ha.

Diamondmaker, You are absolutely right. It was worth a shot. After trying it different ways, I concede, the nasal cannula is a fail. Was worth the try for $5. I have an M tank and D tanks. So I think a demand valve will be the next investment.

Belated but right back at you. Mooo

ClusterHeadSurvivor, Thank you for this. And thank you to your friend Rami. My insurance company has seen your video and hence had a lot more relevant communication with me since. I've shared it with many friends and family. You are a brave soul and it's much appreciated. Hugs and pfws, Vic