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Long Time!!!!! (Read 1917 times)
sparky66
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Long Time!!!!!
Mar 6th, 2017 at 3:51pm
 
Well it's been many years since I have visited this site.  Not even sure what email I had associated with my last account so had to create a new one.  I suffered CH from the ages of 16-38.  My cycles were normally 3-4 months with 4-5 daily.  Remission typically would last 4-6 months.  I suffered from 16-22 without diagnosis.  Once Diagnosed the doctors tried numerous preventatives of which none worked.  Finally when that remarkable drug Imitrex became available I was in Heaven.  I found this site toward my late 30's and at that time tried all the cool tricks but still Imitrex pill was the only thing I found to reliably divert an attack of the beast.  The nasal and injection had minimal results on me.  At the age of 38 for some reason the beast left and hasn't visited since.  I talked to my doctors and they explained that remission wasn't uncommon for someone my age but there was a good change they would return in my late 50's.  Wow.  Thankful they were gone but there's something to dread about the golden years right?  Well here we are 12 years later at the ripe old age of 50.  8 days ago I went to bed with that feeling in the back of my neck and my stomach that brought back so many memories of days gone by.  I Hoped it was just my imagination but I knew what was going on.  10:30 I sat straight up in bed and started squeezing my temples and pounding on my head.  I slipped on my sweats and stumbled down the hall and started searching my wifes migrane stash for some imitrex.  Found one!  Seriously, A knife or Scissors required to open, Are you freaking kidding me?  I am in no condition to be handling sharp objects as I am just likely to stab it in my skull.  By this time I'm at a 7 on the Kip.  I finally fumble the pill from it's package and manage to get it down followed by a half glass of water.  Now it's off to the yard and my lawn chair so I don't wake everyone in the house if this goes south.  I make it to the chair and sit down with my elbows on my knees, my hands on my temples squeezing as tight as I can as I rock back and forth like an 80 year old grandmaw crocheting he aphgan.  Now I'm a 9 and I'm stomping my feet, walking circles around the chair, beating my head with the my fist.  20 minutes later and it broke and started to ease.  Within 10 minutes I was back at a 2-3.  Now I am starting to get that chill and the queazy feeling that always follows, my eyes heavy, my body drained of all energy.  I slip back in the house and down the hall, stop in the bathroom and wash my face with a cold washcloth.  Back in the bed and colapse praying this was a one time thing.  Here I am on day 8.  He has visited me each night between 10-11pm with the exception of saturday when he decided to show up at 7pm.  Luckily I got my hands on a couple of boxes of 100mg imitrex.  Normally 25-50 mg is all I need so I'm set for a few weeks if he continues to shine. 

Now for a few questions.  Has anyone else experineced a remission of that long and what was  your experince on round 2?  I have to leave for SLC to work tomorrow morning so a doctors visit for new preventatives to try is out of the question this week.  What are the new happening home remedies that I can try over the next week.  I have tried the H20 in the past and saw some success.  I have not tried oxygen and like I said getting a perscription this week is not an option.  Any other ideas on things for me to try? 

I wish I could tell everyone I'm glad to be back but "and I say this with all the love I can muster", I was sure hoping I would never have to see any of you guys again.
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Emjay
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Re: Long Time!!!!!
Reply #1 - Mar 6th, 2017 at 7:13pm
 
Welcome back?  I, too, have enjoyed a remission, although not as long as yours.  Mine is due to the D3 anti-inflammatory regimen developed by Batch.  Worth checking out.

Without O2 or yet the D3, in addition to Imitrix (call your doctor to call in a Rx), I've had some success with energy drinks as long as they contained 1000 units of Taurine.  No taurine/no caffeine means no relief.  Red Bull in spite of how disgusting it tastes.

Good luck! Sad

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Skyhawk5
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Re: Long Time!!!!!
Reply #2 - Mar 7th, 2017 at 12:28am
 
People on this site have reported 25 yr remissions. That's ugly...
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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sparky66
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Re: Long Time!!!!!
Reply #3 - Mar 30th, 2017 at 11:20am
 
Well the beast stuck with me for a month this time.  luckily the first two weeks consisted of only one episode per day then the last two weeks just for kicks he started showing up around 6pm and again an hour after I went to bed.  I am 2 day's pain free from his grip.  Hoping he stays hidden for another 12 years but just in case I will be carrying my Imitrex everywhere for quite some time.
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UMASS
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Re: Long Time!!!!!
Reply #4 - Jun 21st, 2017 at 10:39pm
 
Sparky: I feel for you. Your story is very close to mine. Here's a copy & paste that I posted a few weeks back on Cluster Buster forum. Please see below.

Hi All: I guess my subject line says it all. My name is Alex & I'm 51. I've been free of CH for about 13+ years. I'm was so very grateful for not having the pain anymore. Pure joy. Mine started for me when I was 17 or 18. The worse time in terms of the pain was from my mid- 20's to mid 30's, then the frequency started to taper down as the years progressed. By my late 30's they simply never came back. About 4 weeks ago...I felt the warning pain coming on (about 10-15 minutes for me), then I was back in the world of pain again.

I've been taking Verapamil (240MG twice a day) for over 25 years. It seems to help, but when the CH decides to get completely unruly, it doesn't work. I remember years ago my doctor put me on the Amazing drug called Sansert/Deseril. It was the ONLY drug to would stop a CH dead in it's tracks. Come to find out the drug has been discontinued because of the possible fibrosis issue.

I have an appointment tomorrow (Thursday 6/1) to see a neurologist. Two things I'm hoping for. A drug that out there to prevent them or (the best scenario) is the CH pack-up again & go away. As I get older my constitution isn't as strong as it was 20 years ago & it effects me even more now. Has anyone else had a serious hiatus (years) from CH & they came back?

Thanks for listening everyone!

Alex
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shooky
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Re: Long Time!!!!!
Reply #5 - Jun 23rd, 2017 at 7:26pm
 
Hope your appointment with the doctor went well, UMASS.

Many mourn Methysergide...

240mg is a common starting dose for Verapamil, and many respond only to 480mg or more. Also, Verapamil is a little less effective for CCH compared to ECH, and Lithium seems to do a better job.

With Lithium there are other problems, of course, so I think it worth giving the D3 regimen a try. Also, I think it's possible to use Verapamil with Amitryptaline (Elavil), Melatonin or long half-life triptan such as Naramig (naratriptan). All of them help at least some people.

And finally - in 2018 the first CGRP inhibitors will hit the market. In theory, they're supposed to be much better in migraine and CH prophylaxis.
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