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Vickle

1st visit with Neuro

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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!

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Vickle.

Yes I agree what a difference. The first nuerologist I dealt with....GRRRRR She made me so angry and i am not the only one. My buddy a retired firefighter deals with her. He feels the same way.

She said to me one...oh clusters...not so bad. I get migraines.....I was like ummmm I get migraines too lady and they are NOTHING like migraines.

All I was to her was a prescription pad. She did not want to hear about my side affects.

for 2.5 years my body was a funnel for here"try this".

All those god damn side affects I had and the last straw was impotence. That was final straw. I poured every single thing she gave me down the toilet. Told her id never see her again and got another nuerologist. The best in the country in fact. So caring, thoughtful.Listened and actually didnt compare themselves thinking i was  a whiner.

...

moving forward. My new nuerologist got me in touch with

my nuerosurgeon...and voila... brain surgeries later,

so Vickle. I am veyr happy you got someone empathetic to CH and listens and is open to alternative treatments.

If you haven't taken Imitrex before everyone reacts different to it. Its like CH. No one is the same. We all have our own mix of things.

As for myself. Imitrex is a love hate relationship. Night before last, 1147 am woke up to Kip 10. Jammed myself with a needle to let me why sleep because she works. Only 15 min of screaming not hours. But the next day I get really sick. Lethargic, bloated, zero energy,wiped out and rebouns 10 fold. usually 5-10 extra attacks that day. Its the trade off. But again everyone reacts differently to the med.

Just be preparred.

There is videos on line to reduce the dosage and get 2 doses per injection. I have tried that and sadly dont work for me because I am a big guy. I need the full dosage.

Might work for you.

Wishing you a PFD

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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.

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Glad to hear about the god doc experience, and agreed it can make a big difference!

She said to me one...oh clusters...not so bad. I get migraines.....

Just reading that made my blood pressure go up 50 points right now.  >:(:D

Sorry Vickie, I'm not remembering if you've had the imitrex injections in the past? I know I'm right on the same wavelength as CHSurvivor regarding how worthwhile it is to pursue the partial dose approach. I'm one of the lucky ones who feels no side effects at all from the injections. I hope that's the case for you too (I do share the same concern as so many others about imitrex potentially causing CH rebounds  though).

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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.

Love, love, love it!!!

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I explained to my shrink the other day that the first 5 years of having CH, like anyone plagued with a disease at a young age we go through the 5 steps. It really took me until last couple years to accept what I have and move forward and not worry about the next attack yet worry about the now and live for now. To be positive and know life is a gift.

My blood boils too when I hear" Oh my mom gets those, she takes an asprin and lays down" or "They can't be that bad"

where 99.9% has no F'ing clue. Finding a nuerologist that has done their homework and knows and has listened to Dr Goadsby knows what the heck we are talking about.

Im glad you found someone who cares. Makes a world of difference for us.

I am often told by my nuerosurgeon I know far more about the diseasr than him. He also said it would be use ful but chances are I am the only patient he may have in his working career.

My surgeon is a Parkinsons DBS surgeon amongst ONS and other brain surgeries.

I only see him and not my neurologist because I have far exceeded a nuerologist help being chronic an dhaving tried or funnelled any drug through my body.

I wish you great success with your new nuerologist.

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I explained to my shrink the other day that the first 5 years of having CH, like anyone plagued with a disease at a young age we go through the 5 steps. It really took me until last couple years to accept what I have and move forward and not worry about the next attack yet worry about the now and live for now. To be positive and know life is a gift.

My shrink had a good point about the pain. Ive been chronic for 4 years now, and chronic pain leads to depression, which leads to more severe pain since youre so run down, which leads to more depression, etc. Being aware and in control of your thoughts is step 1!

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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.

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If you have CH and have to go in for dental work, do not let them deaden you with Xylocaine with EPI (epinepherine).  It is a major trigger for headache, and a dentist worth his or her salt will know that.  Instead request prilocaine or anything without EPI.

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Hey Vickle,

I just stumbled across this thread..I also see dr gordon robinson...He is great, before seen him I used to see a nero in Kamloops where I was attending school at the time. Dr Robinson prescribed me the Imitrex for the first time and he uped my dose of Verapamil, which reduced my attacks..As for the Imitrex I do not get any side effects..the pills or nasal spray does make me tired.

Anyways glad to hear you have met with Dr. Robinson he understands CH more then anyother doctor I have seen.

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