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Mike Bernardo

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Must be that time of year
Sep 16^th, 2013 at 10:38am

Hello all.
I've been on a good treatment regimen. I've been going to a headache center in Philadelphia (Jefferson). I did 320mg Verapamil and 300mg Topiramate (I'm chronic). I still do 10,000 IU of D3. I also have been getting occipital nerve blocks every 5-6 weeks in both nerves. I just dropped to 200mg Topo and no Verap and had a block a week ago. I've had the worst hits, hard and fast, with some residual pain and feelings of what I've heard others describe as a stroke. Dizziness after, confusion, blurriness. During it literally knocks me off my feet. The pain is over my eye, the side of my head and directly in the occipital nerve. The weird part is the pain has been switching sides again, still mostly on the right (80%), but some hits on the left (for those you bad at math, 20%, haha). I think the 85-90 degree days, followed by 45 degree nights, followed by heavy clouds and rain, followed by sun, etc. you get the picture has made it worse. I've had some migraines, which I haven't had in months. Light definitely bothers my eyes, and that hasn't happened in months. Though I haven't had any nausea.

Just wondering how others are faring.
Mike in NJ

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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Must be that time of year Reply #1 - Sep 16^th, 2013 at 10:56am Hi Mike, Sorry to read you've tried so much and are still getting slammed. Hopefully something begins to work better for you very soon. Hang in there -Gregg in Las Vegas
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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: Must be that time of year Reply #2 - Sep 16^th, 2013 at 10:58am Good to hear from you Mike, sorry it's because you're getting slammed. D-3 is still holding beasty at bay for me these days, hoping you catch a break soon. Joe
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metrolamar CH.com Junior Offline This will get better Posts: 47 Georgia Gender:	Re: Must be that time of year Reply #3 - Sep 16^th, 2013 at 11:15am Sorry to hear about you getting slammed....It is that time of year for me too. I hope that you find some relief soon. Just know you are not alone, We both are getting slammed this time of year. All we can do is keep the oxygen close by and hope the beast gives us a break sooner than later. Best wishes to you.
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wimsey1

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Re: Must be that time of year
Reply #4 - Sep 17^th, 2013 at 7:59am

Good morning, Mike. As the others have said, I am so sorry you are in so much pain. This has been going on for a while with you. I take it the usual abortives aren't working? And is there no chance of upping your verapamil? I am finding some relief at 680mg/day plus 300mg lithium. Enough that the abortives work when the O2 isn't enough. Last night was a typical example: got hit at 11PM. Aborted with O2. Got hit again at 11:30pm, slammed a double Monster and aborted with O2. Got hit at 1AM and snorted a Migranal and aborted with O2. So far I've had luck going down the line of weapons in that fashion. I pray you will, too. Blessings. lance

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Mike Bernardo

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Re: Must be that time of year
Reply #5 - Sep 17^th, 2013 at 3:01pm

hey Lance and all. Thanks. I just went off the Verap. I couldn't take it anymore. My heartbeat was so slow I thought I would pass out. Just walking around the city for work going from client to client was killing me. I'm sitting here right now and I can feel a clenching in my jaw and my head is aching. But as bad as it is, it's not as bad as the passed out feeling and always feeling like I'm on drugs and confused from the 320mg verap and 300mg Topo.

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metrolamar

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Re: Must be that time of year
Reply #6 - Sep 17^th, 2013 at 3:44pm

300 Topamax, dang. 100 made me completely tired and I could not work. Not to mention I was still having the headache attacks. I had to stop taking Topamax. Now at least I am just having the headaches, but I can function in between.

Sorry to hear you are having trouble. But I wanted to share my Topamax experience. Hoping you feel better soon

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painfulnoodle

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Re: Must be that time of year
Reply #7 - Sep 17^th, 2013 at 9:47pm

Hi Mike ... so sorry for your pain. I too am battling the beast again after being cycle free for 3 years ... just knew I had the damn thing beat! Came on me two weeks ago (about the same time the weather started changing here in the E TN mountains) with a vengeance. Obviously, everything I had as an abortive was either gone or outdated. Made it to Dr. today (he's been on vacation) and got all meds up to date and refilled.

I know that Verap seems to be the prevent of choice around here, I've personally never used it yet. However, my Neuro started me on Depakote - 500mg x 2 times/day. Killed that cycle within days. Stayed at that level for probably 6 weeks, then tapered off to nothing. The next cycle, after knocking it out I stayed on the Depakote at a lower dosage - 125mg x 2 times/day. As stated, this is my first cycle in 3 years. I've had a hit ever so often (months in between), but I think we'll always deal with that. If you haven't tried it, might be worth looking into.

I did Topo years ago ... made me totally stupid! I'm currently on the Oxygen, D3, Depakote and have Trex injections and pills as a backup abortive (when I can't be around my tank).

Hope this helps. Blessings to you my friend. Keep us posted.

Red

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Mike Bernardo

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Re: Must be that time of year
Reply #8 - Sep 18^th, 2013 at 11:41am

Thanks. I tried Depakote once, but it didn't work. I should qualify that by saying I don't remember the dosage. My old doctor was giving me much lower dosage than my current one. For example, when he tried me on Verap, it was only 80mg, which did nothing. 320 worked, but it practically stopped my heart, haha. I keep flip-flopping between wanting to deal with the pain vs. wanting to deal with the side-effects. I hate both, but depending on mood that is what I contend with. The worst is when you have both side effects and pain. The Sumavel shots are generally effective, but on a high deductible plan, I pay about $95 a shot, which sucks.

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Emjay

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Re: Must be that time of year
Reply #9 - Sep 19^th, 2013 at 5:39pm

I am sorry that you are suffering. I usually get hit this time of year, too. In fact, I usually only get the summer and December, off! I started the D3 regimen in June and so far, no hits. I have had a shimmering shadow but it went away on its own. I can't use the Verapamil (blood pressure issues) and the other meds had unacceptable side effects, including not preventing anything. So, I take the D3 15K with the other recommended supplements (my D3 levels are not quite at the sweet spot or else my other "issues" require a higher maintenance dose). It has been a boon to my overall health and especially the fact that I am not in cycle and I usually am. For abortives, I use Rock Star but any energy drink with Taurine would do. I also have O2 and the non-rebreather mask. Imitrix injections which my neuro has me collect year round (hoarding). I hope this finds you pain free!

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Mike Bernardo

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Re: Must be that time of year
Reply #10 - Oct 7^th, 2013 at 1:35pm

Thanks. My d3 levels are high, and I'm still on 10,000IUs daily. The pain has been emanating from my occipital nerve, and I'd say 75% right side, with the newer phenomenon (last 6-9 months) of 25% left side. I get pains in my eyebrow, in my eye, and of course, that crackling feeling like the top of your head is actually splitting open. the weather has been a factor, but yet these do not feel like the "migraines" I have had in the past (yes, I get those on occasion too). Light and sound definitely bother me, but no nausea and I get very agitated and crazy, talk like I'm on speed, then get absolutely exhausted by late afternoon. I'm getting regular ON blocks (every 6 weeks or so) and they do work. I hate O2, and prefer to run, but gout has affected my knees, and will be back to running soon, as I just finished PT and got my diet in good control. Oddly enough, low purine is called for gout, similar to what I've read by some who claim it helps CH (I also have celiac, and can't eat gluten, yet being GF for the last 14 years hasn't helped!!).
Thanks for the input all.

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