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Week 6 NO relief in sight (Read 1907 times)
22yearsufferer
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Week 6 NO relief in sight
Mar 22nd, 2018 at 12:46pm
 
I started week 6 on Sunday, March 18th. I have had 53 attacks since February 11th.  Some have been slight enough not to make me wanna beat my head off the wall, there have been some that have made me think "yep this is how I'm going out" Monday night was sever, enough so that it made me extremely strong, brave, manly husband cry, begging me to let him take me to the hospital.  Three hours of pacing, crying, rocking, pacing, moaning...you know the drill.  No sleep at all that night from attack after attack, not large ones, small 10, 15 minute attacks, painful enough to make me walk not lay. I did manage a few hours of broken up sleep before I poured myself into some clothes and went to work, husband begging me to stay home. What's the use? I'm miserable no matter where I am, might as well get paid for being miserable right? I lasted 6 hours at work until I couldn't keep my eyes open.
I know you all know what it's like, feeling like a burden, being depressed and miserable in your own body. I had up until Monday night stayed positive, fought depression and tried to find humor in it all, that is no longer possible after that monster of an attack.  I have tried the D3 vitamins regiment, I have tried water. I have really good days with one small attack then I have several bad days with several bad attacks. I'm really sick of myself.  Thank god I have an understanding boss who read the handout I gave him about clusters.  Thank god I have a husband who is amazing and a mom and sister that check on me at least 10 times a day each, yet having those people help me isn't enough during one that makes me think I am dying or a brain tumor. I go Monday to a neurologist. I am not hopeful though, I go in to the appointment with pessimism rather than optimism. When I'm not having an attack I'm thinking about having one, dreading it, wondering will it be at work, will people see me acting like a crazy person, will it be on my hour drive home from work or to work? Will it be in the store? How bad will it be? I have been through a lot in my life, some very tough things, this syndrome, disorder, whatever the hell it is, is about to break me! I am trying so hard not to take this out on the people around me, some days I do ok, some days I do not. I can't even have sympathy for my own kids when they tell me they have a headache (they both suffer from migraines, my son worse than my daughter) I feel awful I can't be sympathetic to them.
Ok I'm done being a cry baby, I must work. I'll be back in a few days to follow up my appointment, until I hope you all become pain free!!
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Racer1_NC
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"Well, let's go see."


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Re: Week 6 NO relief in sight
Reply #1 - Mar 22nd, 2018 at 6:58pm
 
I hope you try high flow O2......
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Racer1_NC  
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Week 6 NO relief in sight
Reply #2 - Mar 23rd, 2018 at 10:02pm
 
Did you PM Batch about the D3? He is the guru on it and really good at helping people fix up why it isn't working for them.

The current "recipe" - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

I'll second O2 as being amazing. Make sure you've a high flow rate regulate (25lpm or higher) and a non-rebreather mask. Plenty of info at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Have you tried imitrex injections / nasal spray?

Have you tried other preventives, like verapamil, lithium and topamax?

Tell us more and we may be able to suggest options. And hang in there, we know what it's like from very personal experience.
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Callico
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Re: Week 6 NO relief in sight
Reply #3 - Mar 27th, 2018 at 1:58pm
 
You will probably not get a script for 25 liter O2 as Mike suggested. Don't worry about that. Get a script for 15 lpm and get your own regulator. (You will actually use less O2 if you are like most of us.) Check the oxygen info button on the side of the screen for more info on use, and/or bug us. We'll help you. There is a sample script on the page you can take to your doctor and ask for the script to be written in that manner.

Hang in there. We know and understand where you are.

On nights you can't lie down to sleep, try sitting in a recliner, or even on a couch and sleep there. I spent most of three years sleeping in my recliner. It isn't the best, but it's better than not being able to sleep. Some times, for me just to lie down will bring on an attack when the cycle is breaking through Vit D and 5 MeO DALT like it has been for the past four weeks. (They are doing a good job of keeping it muted, but these have been the worst four weeks I've had in the past four years.)
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Jerry Callison  
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22yearsufferer
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Re: Week 6 NO relief in sight
Reply #4 - Apr 3rd, 2018 at 11:51am
 
Update, week 8! I got O2 it seems to be working as I have been able to get it on as soon as the slightest bit of pressure starts in my eye. If I wait to long it doesn't seem to help. They are getting shorter and less sever, I say that with caution though because the last time I said it, I was sadly mistaken. I am still fearful of laying down and going to bed, actually the thought of laying my head on anything chair, couch, bed gives me dread. My neck hurts to bad during an attack that moving my head is impossible, it's one sided of course.  I am hoping i am almost at the end of this damn cycle it has been by far the longest and worst I have had in 22 years! I have some pretty important events coming up that I WILL NOT MISS! My daughter is graduating college May 5, our best friends are getting married June 9 and I have a getaway with the husband planned in between! I wanna be a wife again!! I hope you all are having a pain free and that that pain free day turns in to many more! Thank you for this board and your posts, you're all getting me through this one!!
Much love!
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Callico
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Re: Week 6 NO relief in sight
Reply #5 - Apr 3rd, 2018 at 8:08pm
 
Good news! Glad you are seeing improvement.

Congrats to your daughter. My youngest is graduating college that day, too. The end of that road. Sad

Hope the beast leaves soon and allows you to resume life. Either way, live between the hits.

jlc
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
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