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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Neuro visit-Things are changing

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Neuro visit-Things are changing (Read 1011 times)

Mike Bernardo

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Neuro visit-Things are changing
Aug 14^th, 2012 at 11:09am

I visited the neuro. He gave me a sample for a new injection sumatriptan that I'm going to try. Still doing 300mg Topo; however, if my cycle doesn't end by my next visit in November, we're going to start Lithium, and he's referring me to a headache center in either Philly or NY as he may consider me to be moving towards chronic (November will be a year with only that 2 1/2 week remission). We had tried Verapamil last year with no success, so he wants to try the Lithium with the Topo. Hard part is these damn migraines that sneak in during the day confuse things, and the fact that I have aura with my cluster attacks at night. Not broad flashes of light, but actual lightning cracks, like a single line of light, like a lightning strike. Don't you just love this stuff.

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Joshua

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Re: Neuro visit-Things are changing
Reply #1 - Aug 14^th, 2012 at 11:50am

Mike - i can't say I've experienced that phenomena. I have made the move from episodic to chronic though, so can relate to your efforts/struggle on that level. Topomax had too many side effects for me, but I started lithium last week.
.
I go to "The Headache Institute" at Roosevelt Hospital in Manhattan, the docs there are great.
.
Good luck with everything.

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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: Neuro visit-Things are changing Reply #2 - Aug 14^th, 2012 at 1:55pm Crossing the fingers for you Mike you're due a break .....and soon! Joe
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metoo

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Re: Neuro visit-Things are changing
Reply #3 - Aug 15^th, 2012 at 10:46pm

Hey, Mike,

Hope things go decently. Gads, so many overlapping contributors. Hope you can put together some things that are 'certain'. To the degree that they can be. My experience is that telling the doc two or three (or more) things is confusing to her/him and is best avoided. They are good people, but tend to chase the easier symptom. Get what you need to survive the beast, then think about developing a relationship.

TJ

#4 - Avoid annoying people who don't deserve it.

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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Neuro visit-Things are changing Reply #4 - Aug 15^th, 2012 at 11:38pm I get the lightning like aura, usually between attacks, it's visible in my periphial, not common for Clusterheads though. Only seems to happen during cycle. 6 mnths for me. Oxygen is the best treatment I've found in my 24 yrs of CH. Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

Lenny CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 642 Los Angeles,CA Gender:	Re: Neuro visit-Things are changing Reply #5 - Aug 16^th, 2012 at 11:28am Hey Mike...sorry to hear of this...Ive got 3-questions 1)...are you seeing a neur. that spec. in headache disorders 2)...why wait till nov. (3-months away) 3)...have you tried the combo...of lithium and verapamil Hopefully you will go PF real soon...wishing you nothing but the best.....Lenny
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Mike Bernardo

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Re: Neuro visit-Things are changing
Reply #6 - Aug 16^th, 2012 at 4:43pm

Hey, thanks everyone. I'll answer all at once. My doc is a headache specialist, that's all he does. I have built a good relationship with him, and he has been honest that he generally treats episodic Ch, and if I am chronic, he would like me to go to a headache center. Also, he stays up to date on the all the latest info, as every time I go see him, he seems to have new information regarding treatment and testing, since he is always attending seminars, talking to other docs, etc.
I have not tried verap/lithium, only verap/topo. Waiting until Nov because that is my next appt and Lithium is pretty serious, and Nov will be 1 year in the cycle. Also, I am on a diuretic, which means I'd have to go off it if I go on lithium. I will ask him about switching from topo to verap when/if I go on lithium, though the verap did nothing for me. But hey, let's try anything new. I use O2, but sparingly, it messes with my sinuses. Running works better and has the same O2 uptake in terms of liters, and actually feels betters as it feeds my nervous jag that I get when I'm hurting.
I think I answered everything?

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