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Topic: Finally...saw the neuro (Read 379 times) |
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Renee
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Finally...saw the neuro
« on: Dec 9th, 2003, 9:55pm » |
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Friends,
I finally saw the neuro today, Dr. Watts at Dallas Headache. She got to see me in the midst of a kip 8.
She diagnosed me with CH and CPH and I am scheduled for an MRI and an EEG next Friday.
She wrote me rx for oxygen, which I've already used twice, and for Indocin. Wants to start me on Verapamil after one week on Indocin. Didn't want to start both at same time in case of bad side effects or very good results as she said then we wouldn't know which was the culprit or benefactor.
We discussed DHE IV inpatient and Trex injections for abortives but she wants to add only one med at a time, for reasons above.
she also said I was having some paralysis of left side of face on top of droopy eyelid, etc.
is this normal?
The oxygen does not rid the HA but sure does lessen the pain and open my eye/nostril somewhat. I even got a traveling bottle of o2 for hockey games, etc.
I hope i'm on the right path now. How often do y'all use the oxygen? She told me to use 6-8 L for about 15 minutes but didn't tell me how many times per day if HA is already started.??
thanks for your support and please let me know your o2 use, etc.
pf vibes to all and unfortunately i'm now "OFFICIALLY" one of the members of this family,
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Renee
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Re: Finally...saw the neuro
« Reply #1 on: Dec 9th, 2003, 10:48pm » |
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couple of more questions:
1. what happens if I fall asleep with the o2 turned on, as the relief is very relaxing to me and thus I'm afraid this could occur?
2. I smoke! How long after o2 treatment until it is safe to light up in the same room, once valve is shut off.
looking for a lil' input from some CH veterans, please!
renee
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Miklos
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Re: Finally...saw the neuro
« Reply #2 on: Dec 9th, 2003, 10:59pm » |
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Sounds like a good start with a practical approach to the medications.
Oxygen flow seems a bit low, but it might work if you have the non-rebreather mask. I usually start at 10. The oxygen will work better if you can start as soon as your headache precursors start. If you recognize them. I get tinnitus. Go read the oxygen info tab a little more carefully; N4H has summarized it very well.
If the headache has already kicked in, the oxygen will probably only ameliorate the episode.
Don't sleep with the oxygen flowing no matter how comforting it might feel. Not good for the lungs, and you waste money.
If you are sure the oxygen is turned off, there is probably no reason why you cannot smoke in the same room. However, I prefer to go someplace else such as the backyard or garage, just in case. Love them smokes when the hit is gone.
You're on your way to some management of the pain. I hope you get quick relief.
With affection.
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Kevin_
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Re: Finally...saw the neuro
« Reply #3 on: Dec 9th, 2003, 11:13pm » |
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Renee,
You have come to the right place to get the answers to your questions. The people here are experienced and more than willing to help. I would discourage you from smoking in bed after using oxygen. The oxygen saturates everything around you (bedding, pillow). I wouldn't even recommend smoking in the same room for a while afterwards. The oxygen thing I think is a personal preference. I use my oxygen (non-rebreather at 10-15 liters) if I feel one coming on. Problem is 95-98% come after I go to sleep. When I wake up, it is an ice pack, imitrex spray then the O2. That combination works for me, but you will see that everyone's beast is a little different. Take care, Kevin
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Jimi
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Re: Finally...saw the neuro
« Reply #4 on: Dec 9th, 2003, 11:17pm » |
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Yeah, what Miklos said. LPM at least 10. CPH does not respond to 02 as well as CH does, or at least that is what has been reported on here. Hit the 02 as SOON as you feel the twinges of a HA. Mine usually completely disappears in 10-12 minutes. Glad the nuero got to see you having one. made the diagnosis pretty easy I would assume.
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Prense
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Re: Finally...saw the neuro
« Reply #5 on: Dec 9th, 2003, 11:23pm » |
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on Dec 9th, 2003, 9:55pm, Renee wrote:she also said I was having some paralysis of left side of face on top of droopy eyelid, etc.
is this normal?
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IMO...no...the droopy eyelid, absolutely...but not numbness or anything like that though.
Use a simple cooking timer...keep it set at 15 minutes to wake you in case you fall asleep while on O2. The digital ones are like $5 at wally world. Wait about 15 minutes before smoking for the O2 saturation to die down. Even if you go into another room, your clothes are still saturated. Remember, O2 itself is not flammable...it just makes flammable items much easier to ignite. You will probably find that you are only wasting O2 with a flow rate at less than 10 lpm...hopefully you have a reg that goes higher than that.
Let us know how it works out!
Chris
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Charlie
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Re: Finally...saw the neuro
« Reply #6 on: Dec 9th, 2003, 11:31pm » |
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Good and bad I guess. Others can help with drugs and 02. I can offer only my technique. Works great between doses.
http://www.netsync.net/users/charlies/
Good luck,
Charlie
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TxBasslady
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Re: Finally...saw the neuro
« Reply #7 on: Dec 10th, 2003, 12:17am » |
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Renee,
I am so glad you FINALLY got the help you needed.
Sounds like the doc gave you the right stuff.....especially the 02.
Hope this helps you. Let me know.........
Jean
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Rick_K
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Re: Finally...saw the neuro
« Reply #8 on: Dec 10th, 2003, 1:30pm » |
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on Dec 9th, 2003, 9:55pm, Renee wrote:
How often do y'all use the oxygen? She told me to use 6-8 L for about 15 minutes but didn't tell me how many times per day if HA is already started.??
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I use a minimum of 10 L up to 15 L...6-8 is just not enough. Try it at 10 I think you will see better results. If it is not helping go to 15 L. If you don't fell relief in about 15 min. it most likley will not work on that headache but don't give up on O2 just try to catch it earlier. At 6-8 L I get no relief. Don't fall asleep with it on and don't use the strap to hold the mask on, you do not want to fall asleep with the mask on. I have fallen asleep before holding the mask on only to wake up to an empty tank with the mask in my lap, small price to pay for some good rest. You don't want to fall asleep with the mask on and run out of air, could be a real bad thing. I will use O2 at the start of a CH, no set schedule.
Where is Dr. Watts' office located and are you happy with her?
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Rick_K
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Re: Finally...saw the neuro
« Reply #9 on: Dec 10th, 2003, 1:55pm » |
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on Dec 9th, 2003, 10:48pm, Renee wrote:
I smoke! How long after o2 treatment until it is safe to light up in the same room, once valve is shut off. |
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I smoke also, not while using O2 (can't get the cig into the mask) but after I'm done I'll light one up with the tank less than 5 feet away (and off). Have not blown the house up yet !
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LasVegas
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Re: Finally...saw the neuro
« Reply #10 on: Dec 12th, 2003, 1:24am » |
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The o2 tab on the right side of this screen will help you understand alot about oxygen use for Ckuster Headaches. Take the strap off the mask in case you do fall asleep, so that if you run out of o2 you won't suffocate yourself. Smoke outside the house, certainly not in the same room as the tank, that's just taking an unnecessary risk. Let us know how it goes with your meds and IF your insurance approves the MRI. My insurance declined my MRI and MRA, even after an appeal. Good luck.
Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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