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Changes in the pain (Read 3960 times)
Emzie
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If you don't start somewhere,
you gonna go nowhere


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Montreal, Canada.
Gender: female
Changes in the pain
Sep 4th, 2013 at 7:01am
 
The last few days, the headaches were lesser than before. Yesterday I almost went all day without the bad pain, just a faint background pain/tingle. I actually dared think that maybe the cycle was over, or that the regimen was beginning to work. then, BAM, at bedtime, Oh my Gawd. No such luck..
it kept me up pretty much all night.
Are there notable signs -usually- before a cycle ends?
My appointment with the specialist is in a month. My CT Scan came back clean, so my Gen. Doctor is sending my referral for the neuro.. finally.
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metrolamar
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This will get better


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Georgia
Gender: male
Re: Changes in the pain
Reply #1 - Sep 4th, 2013 at 10:38am
 
For me and this might be different for everybody.  I have been through many cycles.  I know the end of the cycle has come when I sleep all night.  I am in a cycle now...Getting hit every hour that I try to sleep.  But I wait for the one night that I lay down and actually sleep all night.  These headaches start out of the blue it seems and end the same way.
I know this is not much help but it is my experience with these terrible headaches.  I have been taking the D3 reg that Batch has put out there and I have high hopes that a night sleep is right around the corner.
Good luck and Hope you feel better soon
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Emzie
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Montreal, Canada.
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Re: Changes in the pain
Reply #2 - Sep 4th, 2013 at 4:43pm
 
Thanks metrolamar,
Today has been bad. Getting dizzy, losing my balance. How do I keep calm when condescending co-workers gripe at me for silly stuff? Ugh. I feel like shaking them and saying "You have NO clue!!"
I feel like this will never end...........
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metrolamar
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This will get better


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Georgia
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Re: Changes in the pain
Reply #3 - Sep 5th, 2013 at 1:46pm
 
Hang in there you will get past it.  As for your co-workers they could not even start to know what this is like.  All you can do is....Keep your oxygen close by and struggle through the cycle one day at a time.

Sorry to hear your having a hard time.
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Emzie
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If you don't start somewhere,
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Posts: 20
Montreal, Canada.
Gender: female
Re: Changes in the pain
Reply #4 - Sep 5th, 2013 at 6:59pm
 
I don't have any oxygen. No idea how to get it, probably prescription, I'll ask my doctor when she calls me. The only thing I can do is go for walks outside, I discovered today that the college in front has a nice green area, away from the hobos & traffic of the downtown core. Le*Sigh*
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metrolamar
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This will get better


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Georgia
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Re: Changes in the pain
Reply #5 - Sep 5th, 2013 at 7:47pm
 
you must get oxygen,  it truly is a lifesaver.  It will change your whole outlook about this terrible time. 
Read the section to the left about oxygen,  Batch (very helpful guy on this board) even taught me some tips that I didn't know after all these years about how to use oxygen and get the most out of it.  All that info is under Oxygen Info to the left here.  Batch emailed me a PDF file describing exactly how to breathe when using the O2,  very helpful...I mean very very helpful.  Make sure you get O2 in a tank not the concentrator.  And get more than one tank (get as many as they will give you) because once you discover how it helps you will not want to be without it. Ask questions...people on here will help.  Feel better
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« Last Edit: Sep 6th, 2013 at 8:50am by metrolamar »  
 
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FrankF
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Simi Valley, CA, USA
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Re: Changes in the pain
Reply #6 - Sep 6th, 2013 at 9:47pm
 
Emzie wrote on Sep 5th, 2013 at 6:59pm:
I don't have any oxygen. No idea how to get it, probably prescription, I'll ask my doctor when she calls me.


I think it is by prescription in Canada, the same as in the US. It is considered by insurances as home health or durable medical equipment that is delivered to where you live, rather than picking it up at a pharmacy... so the doctor calls or FAXes the prescription to the oxygen provider.

Now a few potential roadblocks...

My present neurologist was clueless about how to write the prescription, so I told him it should say "Oxygen, 12-15 liters per minute used with a non-rebreather mask, as required, for cluster headaches".

This is open ended as it doesn't specify a quantity or number of refills; but my experience is the provider will deliver what is needed for as long as it is needed.

Once you have a prescription, then you have to deal with the sometimes clueless oxygen provider to be sure they deliver what is needed:

Enough oxygen to get you through one attack per day (or how many) for a week, at 15 liters per minute, for 15 minutes per attack. That amounts to 3 "E" tanks for a week if one attack per day. Or more if you need more or they don't want to deliver as often, but Apria is good about delivering what is needed.

You need to check that any oxygen regulators provided actually go up to 15 liters per minute. I have forgotten to check, and ended up calling the provider the next day when I found the regulator only goes up to 4 liters per minute that won't even work with a non-rebreather mask.

If the provider furnishes a mask, it needs to be a non-rebreather type as described in the "Oxygen Info" section of this website, or you will need to buy one. Nasal canullas (looks like two small tubes that go up your nose) don't work at all. A re-breather mask that doesn't have a bag or reservoir for oxygen is also not effective, expecially if it has vent holes on the sides; but is better than nothing (the "Oxygen Info" section of this website also describes how to work around these).

Dealing with the potential pitfalls I described may seem daunting, but when worked out getting oxygen is well worth the effort.

You mentioned getting hit at work too is a problem. I am not sure how to recommmend dealing with that. Me, I am an electronics engineer... I design computers and other electronic equipment. I have attempted to educate my boss and a few co-workers about cluster headaches, and they seem to be OK with it as long as I put in my 8 hours (except I had one boss who called 911 when he found me screaming in pain in an empty office). What do you do for work, so we may have suggestions how to deal with work?








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« Last Edit: Sep 6th, 2013 at 9:59pm by FrankF »  
 
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
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Re: Changes in the pain
Reply #7 - Sep 6th, 2013 at 11:18pm
 
FrankF wrote on Sep 6th, 2013 at 9:47pm:
they seem to be OK with it as long as I put in my 8 hours (except I had one boss who called 911 when he found me screaming in pain in an empty office).


One good reason to educate the people you work with before a CH hits!
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