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Topic: I feel like I found my long-lost family ;) HELLO (Read 3926 times) |
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #75 on: Oct 18th, 2007, 11:21pm » |
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Dennis!  Thank you! That was a lot of new info for mw. I'm not sure what size tanks they are delivering  I need to know more about the sizes. I do know though that the prescription is 15L/min, non-rebreather mask. I'll be back in the morning to absorb that info hehe and do a bit more reading. It's funny how you can just spiel stuff off the top of your head about oxygen therapy............ You can be my oxygen expert. This is stuff I basically had no CLUE about until about a week or so ago. Thanks <3
BBS
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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DennisM1045
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Re: I feel like I found my long-lost family ;) HEL
« Reply #76 on: Oct 18th, 2007, 11:34pm » |
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When you get up in the morning I want you to download and read through this document. It'll tell you everything that I know  My knowledge comes from the people on this board, OUCH documentation and my own experience using the equipment. You'll be an expert too in no time at all 
http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf
-Dennis-
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #77 on: Oct 19th, 2007, 4:13pm » |
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First, thanks Dennis, great info, explained things well.. I don't feel like such a dummy now haha
OK................
So................................ The oxygen came.
I have 2 M size tanks for $150.00... (Canadian).. is that standard? Bad? Good?
The woman was WONDERFUL.. spent an hour and a half at my house.
Now, on to the real news........
I just finished trying it for the first time. I tried it at 13L/min for about 15 mins, then put it up to 15 for almost another 10. Are you supposed to vibrate? My body started to vibrate after a little while, especially my lips..... lol..?? Is that weird?
..............................I'm still in pain. For a minute, I thought I was getting relief.... I'm trying not to cry. I tried to not get my hopes up, but it crossed my mind that MAYBE this would take away my pain temporarily.. how nice would that be.
What I'm wondering... is... maybe oxygen won't work for my constant pain (CH pain, "smaller"-ish attacks continually throughout the day between KIP 4 and 7)............... but will work for my massive CH hits.. my 8s - 10s. But I don't see why that would make sense. Just thinking.
For you other chronic people, what is your experience with oxygen?
Hm. Ok. It's ok. I'm going to go pop some taurine and whatever else I can find
I'd love to hear some wisdom. <3
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #78 on: Oct 19th, 2007, 6:12pm » |
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I took 1000 mg taurine, some magnesium, and 50 mg indomethacin. Still in pain, but not as severe. I'm ok. I feel alive again. This will all be ok.. just wish there were some magic answer for us all.
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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DennisM1045
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Re: I feel like I found my long-lost family ;) HEL
« Reply #79 on: Oct 19th, 2007, 7:36pm » |
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Hey Mikella,
Keep at it with the O2! It takes some practice to get the most out of it. The more the pain is entrenched the less effective the O2 will be. The trick is, don't wait. Get on it at the first sign of a hit! The longer you wait the less likely it'll work for you. Also, if you have no relief after 15 minutes, stay on it for half an hour. What do you have to loose other than the pain?
You want to use the higher flow rate early and reduce the flow as your respiration slows. You want to use enough so your not completely deflating the bag when you inhale and not so much that it's filled and overflowing while you exhale. There is a balance to it that takes some practice to find. You'll get it.
Is the mask making a good seal?
Does it have valve flaps on both sides?
No room air... only 100% O2 from the tank!
If you find room air is leaking in try using your fingers on either side of the mask to hold the valves in place while you inhale. Then release them while you exhale.
If you hyperventilate you may shake a bit. It's not a reaction I typically get but I have had slight tremors at times after a treatment. I never thought much of it though. I'm usually so grateful the pain is gone I don't care
O2 may or may not work for me on shadows. It always works on low Kip levels up to Kip 7 or so. If I wake up in the middle of the night to a Kip 8 or above I still try it, but haven't had more than a reduction in pain level. Then I'm on to an Imitrex injection ... that's my last resort.
Stick with it hon. I hope it works for ya.
-Dennis-
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #80 on: Oct 19th, 2007, 8:54pm » |
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Dennis, that was a reallyreallyreally helpful post. Thanks  I will stick with it and use your tips. For tonight I think I'll just ice it.. I'll be back around tomorrow. Hope you're doing ok <3<3<3
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #81 on: Oct 21st, 2007, 2:04pm » |
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For anyone who cares to read Or just me, which is ok too
Little update.. Yesterday was nothing short of horrific. I decided to try the oxygen, and the same thing happened as before pretty much.. I get relief when I'm on it, then near the end of using it, it starts to get more and more painful.. then by the time I stop, within minutes, I'm absolutely clobbered. I resorted to tylenol 3's last night, because I don't HAVE anything to help.......... I had no effect from them previously, but I have to admit it took the edge off.. it took an hour to work, then it helped a bit with the pain for one hour.. then that was that. Certainly didn't take the pain away, but made it a bit more bearable. My eyes look terrible..... I always feel like I look like a monster when I go through super bad periods.
I had to take gravol as well.. when I'm in severe severe pain, I tend to throw up. My other meds are hard on my stomach which doesn't help. Sorry to the one who asked me which anti-depressant I'm on, I now forget who..  I'm on sertraline (zoloft). Took me 5 tries to find the right antidepressant. Maybe it was 4, can't keep track anymore. They have had no effect on my headaches though.. this began faaaaaar too long ago (the headaches, 10+ years). I just started antidepressants within the last.. 6 months or so? But it was a thought! Thanks for the suggestion.
So anyways, the meds made me drowsy and I eventually fell asleep once things were taming down after the REALLY bad 4 hours.. I fell asleep for 2 hours (just like every other night of my life) then woke up with the beast messing around again. He wreaked havoc in my left eye that time. Now both eyes look awful. Anyways...... I was up until 3:30, then got some sleep.
I've been reading reading reading as much as I can here, and from what I can tell, it seems like I have POSSIBLY three things: CH, migraines, and chronic daily headaches. My types of pain are very distinct. I'm trying to learn as much as I can, and am actually looking forward to seeing the other neurologists (I'm set up to see two more.. one is a leading headache specialist around here). Once I have definite answers as to what ELSE is going on, then I can zero in on learning specific info.
Love to all, PF wishes, Talk soon. XO
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DennisM1045
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Re: I feel like I found my long-lost family ;) HEL
« Reply #82 on: Oct 21st, 2007, 2:38pm » |
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((((HUGS))))
Keep fighting Mikella! Answers are out there. Sounds like you are beginning to unravel the knot.
Is there any chance some of the daily HAs are caused by the meds? You are on a lot of stuff. Just something to think about and explore with your Drs.
-Dennis-
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Wayne
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Re: I feel like I found my long-lost family ;) HEL
« Reply #83 on: Oct 21st, 2007, 4:36pm » |
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Hi Kella
Are you still moving on the Topomax?? Have you ever tried migril (cafergot). Must admit I'm running out of ideas here. Somewhere is your silver bullet, just got to keep looking hey.
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A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #84 on: Oct 21st, 2007, 5:39pm » |
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hi dennis and wayne, many thanks once again.. can't type long, my jaw is tightening. i took tylenol 3 just in case it does help at all. i'm on 12.5 mg of the topamax, ramping up super slow.. 12.5 for 10 days, 25 for 10 days....... been at 12 since monday. bbs take care & thanks <3<3
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txbeck
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Re: I feel like I found my long-lost family ;) HEL
« Reply #85 on: Oct 22nd, 2007, 2:45pm » |
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Mikella, It may seem counterintuitive, but chances are very good that the codeine in Tylenol 3 is actually causing a great deal of your pain!
I just tell doctors that I am allergic to codeine. It's not quite accurate, but codeine is definitely a CH trigger. I can take Vicodin without a rebound effect...it won't help my CH, but it won't make it worse either. Codeine, however, commonly causes headache even in people who do not even know The Beast! Most Clusterheads seem to have a negative reaction to any narcotic pain med, though. CH just doesn't react like most pain to drugs, as you already know.
On the other hand, I take Soma (muscle relaxant) at the first sign of any CH symptoms, but neck pain and muscle spasm are my most common triggers. I seem to be able ward off some hits that way. I am 66 now, so I've had many years to figure out what helps and what hurts. It's only slightly easier to figure out what hurts (codeine, dental chairs, looking up, too long in one position, alcohol, etc) than what helps.
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Becky
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #86 on: Oct 22nd, 2007, 5:15pm » |
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Thanks Becky, I did nooooot know that about codeine! Really appreciate the heads up and info.
I ended up seeing a neurologist today  Interesting stuff. I'll update with that info when I can, I need a break for now.
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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Emily
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Re: I feel like I found my long-lost family ;) HEL
« Reply #87 on: Oct 23rd, 2007, 3:44pm » |
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Hi Kella,
Sorry to hear that you're still trying to find something to help. Codeine makes me feel SO much worse - it was the first peice of advice my doc gave me when I started getting these headaches.
I'll keep my fingers crossed that the topamax starts to kick in soon enough and you'll start feeling better.
In the meantime, keep reading and posting.
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Mikella
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Re: I feel like I found my long-lost family ;) HEL
« Reply #88 on: Oct 25th, 2007, 8:21am » |
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thanks emily <3<3<3
i'm off to the hospital.. things just aren't good. i can't function at all now. the pain hasn't broken at all in a month. do you think they will admit me? this is my only hope for some relief maybe.. and maybe they'll do an MRI. i'm starting to get scared, i need answers and pain relief. well, wish me luck, love & pf wishes to all, talk soon. <3<3<3
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"Know how sublime a thing it is.. to suffer and be strong" HWL
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DennisM1045
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Re: I feel like I found my long-lost family ;) HEL
« Reply #89 on: Oct 25th, 2007, 9:16am » |
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An MRI would be a good thing. Good luck Mikella. I hope you find the relief you need.
-Dennis-
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Emily
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Re: I feel like I found my long-lost family ;) HEL
« Reply #90 on: Oct 29th, 2007, 6:48pm » |
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Hello,
At least if they admit you, you can get all tests/meds you need on hand.
Let us know when you're back at home and hopefully you'll have some good news.
Sending you some positive, pain-free vibes.
Em
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aloneuk
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Re: I feel like I found my long-lost family ;) HEL
« Reply #91 on: Nov 1st, 2007, 2:00pm » |
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how was the mri?
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