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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Saw the neurologist today
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Message started by Joshua on Aug 28th, 2012 at 8:16pm

Title: Saw the neurologist today
Post by Joshua on Aug 28th, 2012 at 8:16pm
Here's the latest..Zonagran is only substantive change to my regimen (which includes verapamil, vitamins)

Chronic at this point as of a few months ago.

1) prescription for sleep clinic to check apena eventhough it may just be a seperate issue.

2) order for new MRI (it's been 5 or so years) just to make sure all is kosher there.

3) prescription for Zonagran (never heard of it) 25mg build up to 100mg.

4) up melatonin dose to > 12mg a night


Title: Re: Saw the neurologist today
Post by tachead on Aug 28th, 2012 at 9:30pm
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Another anti seizure med. Standard stuff. See if this works see if that works. Hope it works :D
tachead

Title: Re: Saw the neurologist today
Post by Skyhawk5 on Aug 28th, 2012 at 10:17pm
Zonegran was little to no help for me, you may have better luck. What dose is your Verapamil? 480mgs a day is the average to have Verap help. Many chronics have to combine Lithium with it.

Do you have a proper Oxygen setup?

Don

Title: Re: Saw the neurologist today
Post by Joshua on Aug 29th, 2012 at 8:17am
I am on 600, have been on 720 of verap.  Have also been on Lithium 900, had a rough time with the side effects.  I'm pretty sensitive to side effects. 
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Have O2 at home-- that helps a lot.

Title: Re: Saw the neurologist today
Post by Joshua on Sep 3rd, 2012 at 10:16am
Have been doing 75mg Zonagran at night.  Totally dopey during the morning hours.
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Tapering off pred (now at 40mg)
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Neuro said to try 1 spray in each nostril of Migranal every 8 hours for 7 days (she said in super rare instances DHE has broken cycles but this would be a long shot, and usually it was IV DHE that worked) but since I've been so resistant to other things, to give it a try. Usual caveats about NO mixing triptans etc.
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DHE is a killer on the stomach and I'm 3 days in.  I haven't had any clusters even on a low dose of pred, but I do have a feeling when this 7 days of squrting in the nostrils is over, I'll be getting them again unless then Zonagran kicks in.
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Blah...  trying to stay optimistic. 

Title: Re: Saw the neurologist today
Post by AppleNutClusters on Sep 3rd, 2012 at 5:17pm
For the Migranal tummy troubles, double-check that you're not sniffing the spray. It's meant to only contact the lining of the nose, not go into the sinuses or throat. I personally found that the Migranal caused less stomach upset than Imitrex but ymmv.

Title: Re: Saw the neurologist today
Post by Joshua on Sep 3rd, 2012 at 5:49pm
Interesting..that could be it, b/c I definitely am tasting it in my throat.  I'll try to adjust the usage.  Imitrex never causes me any stomach issues, and I have the same experience of tasting it in my sinuses, weird.  It might also be the Zonagran, but I don't think so since I had one day in between and no stomach issues until using the Migranal. 
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Fingers crossed that SOMETHING is gonna work.
.
Thanks!

Title: Re: Saw the neurologist today
Post by AppleNutClusters on Sep 3rd, 2012 at 7:06pm
Yeah, "tasting it" is a sure sign that the spray is going deeper than it should. I know I'm not "sniffing it" when the spray actually drips back OUT of my nose. Gross, but true. Definitely see if that helps. But be aware that Migranal, even if taken correctly, can cause digestive upset.

Title: Re: Saw the neurologist today
Post by Brew on Sep 3rd, 2012 at 9:04pm
There's a reason the nurse gives you Reglan before she does the slow push of DHE-45 in the hospital.

She don't like getting puked on.  :o  [smiley=hurl.gif]

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