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jenny134
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Help
Dec 11th, 2010 at 7:41am
 
Hello,
I'm hoping for a little help here?
My story is a bit long so I'm going to give you the short version... Some of you have read what I have put up before and given great advise, so please do so again..

I've had a Headache pretty much daily since sept 24th,sometimes 2...And I've had a few short breaks were I'll skip a day. Wish I thank my lucky stars for!!!

SO... Last sat. night went to bed a little later than usual, and was woken with what I would call,the worst one yet at about 3 am. I did my normal routine ,got to my oxygen,and had my injection ready to go..It was hard to stay still wanted to get up and pace and rock back and forth...With luck and the blessing of god it was over in about 20 min. I stayed on the couch, didn't want to wake my sleeping husband. And then It repeated it self at about 4 and then again at close to 5...this time I stayed on the oxygen a bit longer almost 45 minutes. I of course could not go back to sleep, just simply because I was afraid that it may come back.

I then went on with my daily routine. I was standing in front of my sink doing my dishes at about 8 am, And it was back! This time the pain really was awful. From what I remember I put the oxygen on and began to beg for relief. The next thing I did is close to un-mentionable. (so I won't) At 9 am my husband found me pacing back and forth looking for my mother, whom I was convinced was at our home and taking me to a place to get help.. My Husband said I was not making a whole lot of sense, said i was more or less out of my mind. And when he told me that my mother was not at the house, I started looking for her opening closet doors,etc... So the point to the story is I apparently was hallucinating the entire event???(this is the mild version)!

My doctor was called after I somewhat came out of it. And He told me this is normal?!?!?! For someone whom has this much pain. I also have never had so ch's in a short period of time! He said that your body or mind does this as a coping mechanism?

I don't remember everything from that morning ,but I do remember some. And to put as frankly as I can , I am scared shitless. I have tried to stay as positive as i can thru this living hell. I've read everything I can get my hands on, researched as much as I can, and spoken to and visited numerous doctors.

What I'm going thru just doesn't seem to have an expiration date! I don't want to feel like I'm crazy! I just don't believe that this is a normal reaction..So please anyone with any advise? Help me please!

   Jenny
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wimsey1
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Re: Help
Reply #1 - Dec 11th, 2010 at 8:00am
 
My goodness, Jenny, you're getting the short end of it, aren't you? I guess there are several things I want to say, but first and foremost, go see your neurologist about this incident, or a different dr than the one who said this was normal. There are so many potential causes for what you experienced...but pain by itself I don't think is one of them. The begging and pleading and praying and pacing...yes...hallucinations?

I do understand the routine. It is similar to my experience. I'd get hit at 11pm, 1am, and 4am. There were times I didn't let myself fall asleep again after the 1am hit just to catch the 4am hit before it took hold. It is "crazy making" and can lead to some "unmentionable" type reactions. And depressing.

You don't mention what you are using for abortives besides O2. Many of us have found energy drinks help O2 abort the pain. Try one. And talk about your depression. An antidepressant may be in order and is not a defeat. It's just another tool in the kit.

You have to hang in there and fight this thing. You will. You do need some more weapons in your arsenal, though. Make a list of everything you haven't yet tried, and try them one at a time. Just having such a list can be a big help. And perhaps its time to reevaluate either your dosage or kind of preventative and try another...under drs care, of course.

Do know we are here and you're only a shout away. PM me if you'd like. You are not alone. God bless. lance
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bejeeber
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Re: Help
Reply #2 - Dec 11th, 2010 at 12:42pm
 
My gut reaction about this (I have no expertise) is that you were basically driven out of your mind by the unbearable pain for awhile.

So you have your imitrex injection ready to go in case the O2 doesn't work, but you haven't been using it?

I know that routine, as I use O2 as a primary abortive, imitrex 1/2 dose injections as a backup. During high cycle I too can be hit every hour at night when aborting with O2, and during my last episode I gave in and just started using the imitrex for the wake up hits because it would give me more like 3 - 4 hours relief. (Here's the tip on how to extend doses in case you're not familiar:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register)

People with the most severe cases have been turning more and more to busting their cycles (successfully) with mushrooms etc., but I would stop short of actually recommending that to you since you had that scary experience with the confusion and all, and I don't know if busting could be risky for worsening those kind of symptoms.

There's a "Batch PH" recipe around here somewhere for optimizing your PH that may help your O2 work better/longer. Hopefully someone can pipe in and recite it or provide a link.

Hang in there - sounds like you're at the peak of an incredibly hellacious high cycle - I figure (and hope) there could be a good chance that it may peak out soon and go back to being more controllable.
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« Last Edit: Dec 11th, 2010 at 6:04pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Layla328
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Re: Help
Reply #3 - Dec 11th, 2010 at 2:50pm
 
Hi Jenny,

I was getting CHs that often at night at the beginning of my cycle (even if I stayed up they would still come) and it will drive you crazy fast.  I decided I could no longer be an oxygen warrior with that pattern of headaches and went on verpamil, and continued taking melatonin and benadryl (or dramamine).  And I am doing much better now (knock on wood).  Do you have a preventative medication?  I so understand how you feel.  Also, I remember when I got really bad hits last cycle that broke through the oxygen, I would keep opening doors, going into different rooms, as if I was looking for something or some place to hide but then would just keep going into different rooms.  I think it is the crazy making nature of these headaches.
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JustNotRight
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Re: Help
Reply #4 - Dec 11th, 2010 at 5:11pm
 
Hi Jenny and welcome!

I can understand where you are coming from, I've lost my mind a few times over the years dealing with CH (still not sure if I've got it back).  Grin

I usually lose the ability to speak well and have on occasion been accused or asked if I was drunk or if I was having a stroke or something.  Neither was the case obviously.  Thinking clearly or speaking what you mean to say when in that much pain is nearly impossible so don't let it scare you too much.  Just try to make sure you are in a safe/understanding environment and you'll be ok, at least after the beast leaves, even if temporarily.   Smiley
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bejeeber
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Re: Help
Reply #5 - Dec 11th, 2010 at 6:03pm
 
I think Stralight brings up a good point about the melatonin, since some people are reporting it knocks out their night hits.

I tried 9 mg before bed and it did nothing for me, but lately people are reporting going as high as 25 mg (!) before it becomes effective for them.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Layla328
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Re: Help
Reply #6 - Dec 11th, 2010 at 6:24pm
 
With melatonin I am on 12 mg a night combined with other meds b/c it wasn't having any effect this
cycle Sad  Last cycle though, what happened was, it was helping but unfortunately after 2 nights my body would "get used to" the dose and headaches would then break through full force.  So what I was doing was raising the dose by 3 mg about every third night--ended up going as high as 33 mg.  (not recommending this--only saying what I did.)  I don't know if I am just weird like that but my headaches would "get used to" the dose.  It seems to work well for some others though who do use more of a consistent steady dose.
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« Last Edit: Dec 11th, 2010 at 6:25pm by Layla328 »  
 
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