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ThatHurtsMyHead

Not doing so good

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hi my friends,

Knew I was up for my regular preventative dose, recently but didn't have the sitter or situation to dose.  Had a bit of an emotional train hit me Wed last week.  And my CH came back overnight.  Been getting less and less sleep each night.  I've never tried melatonin so bought some 3 days ago (at 3am walgreens).  Stuff doesn't work at all for me.  I'm taking 20mg a night and getting hit maybe a few minutes to 30 minutes after falling asleep.  Can't dose as I'm far from the right mindset, setting, nor sitter...  one and a half 'sorta' hours of sleep tonight.  Two two three the night before, and the night before. Can't eat.  Lost 12 pounds since Wed already.  O2 is keeping the kips from spiking, but taking a long time to work for some reason (1 hour or so) kinna crashing. jeff

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Oh Jeff,

That really sucks. Sorry the Melatonin doesn't help.  :'(

Really rough place to be and I hate it for you!!!! Wonder what is up with the O2??

Not being able to eat seems to magnify the stress in my experience. When having a PF moment in cycle, all I want is sleep, not food. Then, ya get drug down and it all gets worse. >:(

Trying to say that I empathize. I also wonder at the number of folks going thru minor to major hell at this particular time. What is going on out there????

I really wish I could send a magical beam to Tampa to improve your situation.

spiny

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Sorry to hear your Battling...Stress does have its way of pulling us in deeper.

You may have meet my Dear Wife at the conference, she may have handed you the id tag. With our oldest Daughter going through cancer, which you never though would touch the Family...that level, stress throws in some heavy endorphins. She has taught me to say "Let Go Let GOD.

You Folks living in the southern point of the US had to feel some severe barometric swings from Sandy. Checking in on the noaa site just before writing in here, the satellite shows a good sandwich of weather still hitting you.

Know your are in our Prayers 

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Thanks everyone,

This is the second time I allowed life to stop my regular preventative dose.  The event that I had on Wed may well have still triggered my CH.  I'll never miss my regular dose again.  I was trying to stretch the doses out.  It's been nearly 3 months since my last preventative dose.  So I know not to go one minute longer than 2 months between doses again. EVER... Again...

One good item is I went to the VA today for my CH.  It's been 15 years since I went (not good experiences my prior visits, so I never wanted to go back).  They don't have an opening to see the neurologist for a week.  Due to lack of sleep etc. etc. etc. they sent me to the shrink... :o  Good news.  She actually was very familiar with CH because her husband has it (WOW, moment).  He was in a 6 year remision and started a new cycle just last week.  About the same time mine started.  She went through the entire list of drugs we all know very well.  She named two I've not taken before (I REALLY dont't want to take them, but might be the best option for me at the moment).  Due to being fuzzy I don't remember the names.  I'm going back this afternoon to pickup the one she recommended.  I'll post a different thread for feedback when I get the name.  It's supposed to treat CH, sleep issues and depression.

If it works great! but I only plan on taking it long enough to be able to bust again.  I asked what the side effects were.  Needless to say they're Looooong...  They sounded typical for an SSRI (Don't know if it's an SSRI though).  I have to do my homework before I take the first one.

Another good note, is I should be able to start getting my O2 from the VA from now on.  The doctor prepared me that it's going to be difficult to get it though.  He said neurology was unable to write scripts for O2 (at all) that O2 could only be written from cardiology, but I'm perfectly healthy heart wise.  Anyway he prepared me that it's not going to be easy to get the O2, but they'll eventually be able to get through the gov red tape.

Thanks for the kind thoughts and support from everyone. :)

PFW,

Jeff

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My friends,

So I have some more great news!!!  Apparently seeing the VA shrink was the best thing I could have done.  I took about 6mg (little over half a pill) of Amitriptyline HCL.  They're really small so was hard to break it in half.  I only had 2 hits last night and slept about 5 hours total.  Really felt great this morning compared to the last 5 days or so!!!  (I'm checking my breast size tomorrow though, can't take any chances)...  Hmm it even looks like I'm getting that "Jeff" sense of humor back a little already... :)

Oh,  And I did a bit of an out of the box thing last night.  Took a yoga class.  (I was the only guy there ROFL)....  I'm thinking being relaxed from the yoga on top of the Amitriptyline HCL, was the combo that really helped last night.

Bonus #2 today.  The VA called and guess what?  The Shrink somehow got my O2 script not only processed, but expedited!!!!  The O2 delivery company is bringing 6 E tanks tomorrow...

I've been huffing welding O2 the last few days.  I can definitely tell a slight taste with it over the medical O2.  BUT...  Given a choice of O2 or no O2...  I'll suck on that metallic tasting stuff any day...  It's likely just the difference between Steel and Aluminum tanks.  (Or who knows someone might have farted in my welding tank before they filled it).. :)  yep my sense of humor is 10X better with a slight bump in sleep... :)

PFW my friends,

Jeff

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Oh yea, about forgot... I freakin pigged out today....

3 scrambled eggs, a stick of cheese and glass of milk...  (hmm, all day)..  That's a pig out from what I've eaten the last 5 days anyway... :)  Water and coffee has been fine so been drinking plenty.

PFW my friends,

Jeff

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JUST AWESOME...So Happy your getting your groove back!!

Thinking on a yoga class myself, helps with depth breathing. I catch myself shallow breathing quite often, & I believe it may teach my subconscious to draw in. Plus its suppose to help the cookie line.

What ever you do don't lite a match...you may blow nuclear

Blessings & many more pain free days..... 

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Ugh that's a genuinely rotten hand you were dealt punched with there Jeff.  :(

I'm just now getting to this thread and it's roller coaster ride. I hope these latest improvements snowball in to some genuinely PF days'n nights for ya, and toot sweet!! (as opposed to the toot metallic of your welder O2 tank).

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My Friends,

Thanks for the continued support.  It's much appreciated.  I quit taking the Amitriptyline HCL.  (only had 2 half 10mg doses).  The long list of side effects were scaring the heck out of me.  Not to mention the dose was so low, I doubt it was going to do anything positive anyay. 

I'm still having a hard time eating.  Just not hungry.  Looking at food sorta makes me feel sick to my stomach.  Having to force myself right now.  Lost 19 pounds in the last 9 days.  My clusters have gotten much better the last two days.  I want to be back to where I was physically, mentally and emotionally a few weeks ago.  It was a much better world then.

Take care my friends,

Jeff

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Jeff,

So bummed to read your first post and see that you are suffering again.  But I am glad that things are starting to look up for you.  Hopefully you can get back to busting and end this cycle soon!

I think you are probably right that the emotional hit caused your cycle to start.  I've had that experience myself.  Keep your head up.  Good for you for trying something out of your norm to relax.  I've been doing yoga a few times a week for the last few months and it really helps to push out the negative thoughts and center your mind a bit.  Keep reaching out and don't let yourself get sucked in to the negative thoughts.  I know how hard that can be.  I've been through some emotional hell before but even with things going relatively good in my life right now, these last 4 months of fighting the beast have pushed me to my limit a few times. 

When all else fails, watch a stupid funny movie.  What About Bob, Better Off Dead, Christmas Vacation. :)  Life goes on.  Buck up little camper!

-Suz

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Jeff,

I have much the same problem with food. >:( The best thing that I have found is to go out to eat. You don't have to smell it cooking and feel you stomach being turned over!!

Normally I do not eat out at all, but when fighting the weight thing I try to eat something special several days a week for lunch. Lack of food makes me a space cadet! ::) And eating lunch out is much cheaper than dinner.

The other thing is to load up on protein. Snack on nuts, peanut butter, etc. Keeps the ole brain working better. 8-) a few bites is much easier to handle than a meal.

Hope this helps.Your weight loss is pretty severe!!!!

spiny

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My Friends,

Thanks everyone for your continued support.  It does help...  I know you know that, It really does. :)

I'm almost back to eating normally.  Lost 20 pounds.  Getting a nightly visit from the monster.  No day hits right now, which is a huge relief....  Oxygen is taking a VERY long time to help though.  It's sorta scaring me that it might quit working.  It's taking over an hour to get each attack to stop.  Good news is the Kipps are only getting up to around 5 or 6.  I'm finding at an hour what's helping is hammering the ole energy drink down.  Within about 5 to 10 minutes of that and the O2 together the attack goes away.

O2 alone for some reason is loosing it's effectiveness.  (That really does scare the $hit out of me)

I need a sitter. :(  Mega dose this thing into the dirt and get my life back.  I've been sending the boys to the ex most days / nights.  Can't let them see me getting hit... 

I always get the crazy dreams the week or so before my cycle starts.  Well the dreams just started the last few days.  I have no idea if my cycle is about to deepen. 

Jeff

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I sure wish you could jump on a plane and head to Abilene. I found a willing and enthusiastic sitter...haha

He makes it fun. Seat belts are not optional :o

Jeff, do your attacks seem to start in your neck?...at the base of the scull?

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Dan,

If I didn't think a plane ride would be complete hell, I'd fly over in a second my friend :)  Seems like finding a sitter would be easier than this.

My attacks have been starting lately in the back of my head.  More of a shadow that then moves to the cluster eye / temple.  O2 seems to only work now if I hammer an energy drink.  O2 alone is just keeping the kips from rising, but doesn't terminate the attack at all.

12:35am every night and 5am sharp.  Once the 5am one comes, there's no more sleep.

Jeff

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O2 alone is just keeping the kips from rising, but doesn't terminate the attack at all.

UGH. :( Been there, done that with high cycle hits. :-? I suppose you've tried the D3 to see if it helps the O2 work better?

Since the attacks have been starting in the back of the head I suspect 'ol DanBerry McHipShot may be thinking a facet injection could possibly bring some CH relief since it did for him.....?

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You are right on Matt.

I actually had my occipital facet nerves burned Monday, nearly two weeks ago.

The facet nerve block takes my attacks away for 10 days or so. My pain doc said burning should last much longer.

I haven't had a hint of a headache since I had the last procedure.

It may be worth a try Jeff. I wouldn't shitcha :)

Dan

If you want particulars, just let me know.

I wish a few people would try it. It is temporary, but seems like everything is...

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