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Topic: ONSI Trial -- 1/28 Update (Read 1454 times) |
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Lizzie2
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ONSI Trial -- 1/28 Update
« on: Jan 24th, 2008, 8:15pm » |
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This is me from the first day that I had the stimulator implanted:
Things are going well so far. The biggest problem has been post-op soreness from them putting it in. Today, however, I had off from work and didn't have anything else to do, so I finally got the chance to just rest and sleep all day. That was nice, and I didn't take any pain medication for the post-op pain until tonight. I worked yesterday for a 12 hour day, and that was rough because I really didn't feel that great!
So when the rep from the company set up the stimulator, he set it up so that certain leads are positive and certain are negative, and I have to say that almost my entire head feels stimulated when it is on! That is a cool feeling - feels like someone is massaging my head. I like the lower frequency settings versus the high frequency settings, and the lower frequency feels more like a light vibration versus tingling.
Today I had 2 CH hits for the first time since I got the stimulator put in. I was able to tolerate them without treatment by turning the stimulator up "louder" than the pain. Normally I have the stimulator set at level 2 or 3 of amount of stimulation, but when the attacks hit (as soon as I felt the pain), I turned the stimulation up to level 7 or 8. (I can go up to 20.) It seemed to then overpower the pain so that the sensation I was feeling most was the stimulation, and the pain was duller.
Tomorrow I'm going back to the pain center, and I'm supposed to get the stimulator out tomorrow. However, we're going to ask if I can keep it through Monday afternoon so that I have a better chance to evaluate it. The first few days, the post-op pain was getting in the way of me fully evaluating my normal headache level. Just today was the first time I felt it had a truly fair chance for me to see how it was working. I really do think it is helping, but I would like a few more days to really test it out.
So that's that! Lots more I could say about it, but I wanted to just give an overview. I have 5 different stimulation programs that I can play with, but I've spent most of my time on the 4th of those programs, as that one seems to feel the best! If anyone would like to know more or has any questions about it, please let me know. I'm also keeping a daily diary as to how it is helping, as per requirements for the company/pain center, so I have evidence of how it is working for me!
Thanks again for all the support and PMs!
Hugz,
Carrie 
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| « Last Edit: Jan 28th, 2008, 5:02pm by Lizzie2 » |
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Sean_C
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Re: ONSI Trial Update w/Pic
« Reply #1 on: Jan 24th, 2008, 8:20pm » |
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Definately keep us posted on your results Carrie.
Glad to see your smiling 
Cheers 
Sean....................................
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Gator
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Re: ONSI Trial Update w/Pic
« Reply #2 on: Jan 24th, 2008, 9:00pm » |
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Thanks for the update, Carrie! I hope they let you keep it in few more days so you can get a more complete picture of how it will work for you.
Keep us posted. It will be interesting to follow the progress from trial to final implant if that is the way you decide to go.
Got my fingers crossed for you.
Mike
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E-Double
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Re: ONSI Trial Update w/Pic
« Reply #3 on: Jan 24th, 2008, 9:00pm » |
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luv ya!
Hope ya get what ya need
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Grandma_Sweet_Boy
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Re: ONSI Trial Update w/Pic
« Reply #4 on: Jan 24th, 2008, 9:07pm » |
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Carrie - I sure hope this works for you. You need a break and maybe this will be it.
As the others have said, please keep us posted.
Carol
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Mr. Happy
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Re: ONSI Trial Update w/Pic
« Reply #5 on: Jan 24th, 2008, 9:17pm » |
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on Jan 24th, 2008, 8:15pm, Lizzie2 wrote:| I have 5 different stimulation programs that I can play with, but I've spent most of my time on the 4th of those programs, as that one seems to feel the best! |
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Sweet Madre de Haysoos.
RJ
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May those who don't want any
Have memories of never getting any.
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Sean_C
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Re: ONSI Trial Update w/Pic
« Reply #6 on: Jan 24th, 2008, 9:59pm » |
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on Jan 24th, 2008, 9:17pm, Mr. Happy wrote:
Sweet Madre de Haysoos.
RJ
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LMAO you took that out of context 
Go catch a fish or sumtin
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Gator
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Re: ONSI Trial Update w/Pic
« Reply #7 on: Jan 24th, 2008, 10:26pm » |
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on Jan 24th, 2008, 9:17pm, Mr. Happy wrote:
Sweet Madre de Haysoos.
RJ
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ROFLMAO 
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Mr. Happy
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Re: ONSI Trial Update w/Pic
« Reply #8 on: Jan 24th, 2008, 10:30pm » |
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on Jan 24th, 2008, 9:59pm, Sean_C wrote:LMAO you took that out of context
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Horsehockey.
Liz is a Tart, and that's that.
YOU should be so lucky.
RJ
PS Liz..... you look great in gauze and duct tape. Er....Baby.
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| « Last Edit: Jan 24th, 2008, 10:34pm by Mr. Happy » |
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Lizzie2
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Re: ONSI Trial Update w/Pic
« Reply #9 on: Jan 24th, 2008, 10:48pm » |
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LOL Randy you are a perv....
To the rest of you - thanks for the messages!
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Melissa
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Re: ONSI Trial Update w/Pic
« Reply #10 on: Jan 24th, 2008, 10:49pm » |
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Wow.
I have no words really other than I don't think I would be able to try such a thing.
Thanks for letting us know how this is all going for you Carrie!
hugs,
mel
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cash5542
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Re: ONSI Trial Update w/Pic
« Reply #11 on: Jan 24th, 2008, 11:00pm » |
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How is it impacting your migraines? It sounds like so far things are going well. Keep in touch. Take it easy with work too!! You are so brave.
Charlotte
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Lizzie2
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Re: ONSI Trial Update w/Pic
« Reply #12 on: Jan 24th, 2008, 11:28pm » |
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For the migraines - same as with the CH - if I turn the stimulator up so that the intensity is higher than the severity of the migraine, it seems that the stimulator is mostly what I feel. The migraine is still there, but seems to move to the background. This is part of the reason I want to keep the stimulator longer, however. Ultracet really knocks my migraine down to a low level....like a 3 or so, and I've been taking the ultracet for the post-op pain, so my migraines have been better than usual. I would like to evaluate the stimulator without the addition of the ultracet to really examine how it is working. Today I had the chance to do that for the first time until the evening when I finally took the dose because I just couldn't hold off anymore.
So what it comes down to is that I have to turn the stimulator up "louder" than whatever pain I'm feeling, and then it seems to work....regardless of whether or not I'm having migraine or CH pain. Very cool.
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Lizzie2
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Re: ONSI Trial Update w/Pic
« Reply #13 on: Jan 24th, 2008, 11:30pm » |
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Oh and with the CH hits, however, I still had the autonomic symptoms of stuffy/runny nose and watery eye on the right side (which is my CH side), so that was weird since the pain was actually much less!
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Ray
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Re: ONSI Trial Update w/Pic
« Reply #14 on: Jan 25th, 2008, 12:05am » |
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Carrie:
Thank you for the updates and I'm still hoping for the best for you! It's hard to pull off the tape and gauze look, but you are actually quite fetching that way.
Love ya hun,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
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Ghost
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Re: ONSI Trial Update w/Pic
« Reply #15 on: Jan 25th, 2008, 9:38am » |
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Ok ill ask , does that thing tivo? 
Great to see you up and around and please keep that smile going.
Mike
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George_J
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Re: ONSI Trial Update w/Pic
« Reply #16 on: Jan 25th, 2008, 9:55am » |
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Sure hope this procedure gives you what you need, Carrie. Good luck.
All the best,
George
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The pain they inspire
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Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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sandie99
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Re: ONSI Trial Update w/Pic
« Reply #17 on: Jan 25th, 2008, 10:19am » |
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Thanks for the update, Carrie!
I hope it helps you.
Lots of hugs,
Sanna
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barry_sword
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Re: ONSI Trial Update w/Pic
« Reply #18 on: Jan 25th, 2008, 12:44pm » |
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Carrie, good to hear you are getting some relief from this procedure. Thanks for the updates and keep us up to speed on this. You are a true trooper!!!
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Lizzie2
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Re: ONSI Trial Update w/Pic
« Reply #19 on: Jan 25th, 2008, 4:26pm » |
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Hi Everyone - Thanks so much for the messages here and the continued PMs - they really all mean so much to me! I've felt like you guys are with me every step of the way with this, and that really makes a difference knowing that you've got people pulling for you! I know it has helped things go as well as they are going - clusterville's good thoughts/vibes/prayers are working once again, as I have nothing but good things to say about the stimulator!
I just got home from the Pain Center for my follow up appointment there. I am keeping the stimulator now until Monday at 3:30, when I'll go see my doctor after I get off work and have the stimulator removed. This will give me a little bit extra time to evaluate it since I felt that yesterday was the first really good day that I had to evaluate it. My doctor took the bandage off today to look at the sites of insertion for the electrodes, and he said everything looks great. (No redness, no swelling, no signs of infection, etc.) He then put the bandage back on, but it's not as tight as before, and I actually have less pain in the back of my head now! That's very helpful. I hadn't taken any ultracet yet today, but I had been thinking that the back right side of my head was really starting to ache a lot, but now that it's been rewrapped, it feels much better!
Once again, everyone was so extremely nice at the pain center! I really have had nothing but good things to say about everyone who has helped us. They have all been so friendly, understanding, and nonjudgmental. Plus they are informed about my conditions, and that is a huge plus! I worked with a new fellow today who was very good, and then my attending physician came in as well.
I found out that they try to use the same stimulator company for both the trial and permanent stimulator. The reason this is important is that the rep from the company specially programmed my stimulator so that there are certain positive/negative relationships between the electrodes as I said in my first post. This was actually a new set-up, and my doctor had never done it that way for anyone before. Because this seems to be causing almost my entire head to be stimulated, I want to make sure that if I get the permanent stimulator, they can "wire" it the same way, giving me the same relief. I asked today if it could be replicated with the permanent stimulator, and they said that it should be able to be repeated. They said sometimes with the biology, it just isn't possible to repeat it exactly the same way, but that the plan is to try to replicate the experience and setup as much as possible. I was concerned that if we switched to a new company for the permanent stim, then the same rep wouldn't be involved who did such a nice job on the trial setup. Apparently though, they will try to use the same company, so the rep should be involved with the permanent stimulator as well, if I decide to get that one.
So all this is very positive! I'm thinking that if I had to decide today on the spot, I would go ahead with the permanent stimulator. However, I am glad that I'll have a few extra days to really test it out through the weekend and Monday before having to have the trial removed and moving on from there.
The doctor said that the other guy who had one put in the same time as me ended up not liking it. He said the stimulation bothered him and that he felt it was stimulating his eye, even. It's a shame because it sounded like that guy was having a lot of problems with both CH and migraine, too. I feel very lucky that this has felt so good for me and helped so much, even in just the trial phase. I didn't know what to expect, but I didn't think I would see so much benefit from the trial! Very excited!
I'll keep you guys posted on what else happens with all this! Thanks again so much for all the support. I can't even begin to say how much it has meant to me to have this family beside me every step of the way with this. I feel very blessed to have such a wonderful bunch of friends.
Hugz,
Carrie
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Jonny
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Re: ONSI Trial Update w/Pic - Update 1/25
« Reply #20 on: Jan 25th, 2008, 5:12pm » |
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GO ROBO-KID!....LOL 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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BlueMeanie
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Glad to hRe: ONSI Trial Update w/Pic - Update 1/25
« Reply #21 on: Jan 25th, 2008, 5:47pm » |
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Glad to hear the stimulator seems to be helping. Vibes that the permanent one works for you Carrie.
ps.. you got me confused. I thought your name was Carrie then saw Lizzie as your screen name. Had to take a double take.
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Lizzie2
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Re: Glad to hRe: ONSI Trial Update w/Pic - Update
« Reply #22 on: Jan 25th, 2008, 6:05pm » |
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on Jan 25th, 2008, 5:47pm, BlueMeanie wrote:Glad to hear the stimulator seems to be helping. Vibes that the permanent one works for you Carrie.
ps.. you got me confused. I thought your name was Carrie then saw Lizzie as your screen name. Had to take a double take. |
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Oh dear, don't make me go through the story! hehe When I first joined the chat room and ch.com, I was going by my middle name, Lizzie, which is a nickname that my dad and several people close to me have always called me by. However, there was already a Lizzie here (ASB), so I became Lizzie2. Then a couple of people found out that my first name is actually Carrie, so they started calling me that. And now that basically most people know my first name is Carrie, I go by that with most people here, but I never changed the screenname permanently because I like Lizzie2 as my screenname! Sorry that it is confusing though!! Thanks so much for your comment and support!!
Jonny, some of my friends are starting to call me the bionic woman!
And to answer a question from Mike (ghost) above, no, it doesn't do Tivo! Wouldn't that be cool?? hehe
Hugz,
Carrie/Lizzie/L2
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Charlie
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Re: ONSI Trial Update w/Pic - Update 1/25
« Reply #23 on: Jan 26th, 2008, 2:21am » |
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Good luck Ms. Bionic. 
All this new-fangled stuff.....kids. Damn. I gotta look at my new Sears catalog....don't wanna be left behind.
Great stuff Liz and keep posting.
Charlie
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Re: ONSI Trial Update w/Pic - Update 1/25
« Reply #24 on: Jan 26th, 2008, 4:19am » |
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Carrie, great to hear things are going well. The stimulator sensation is quite pleasant isn't it. After a few weeks you won't even notice it. You also mentioned that you had no redness around where they have inserted the wires, that's really good. Don't forget it can take some time before you reach maximum relief. Over here in the UK the won't use Antibiotics until you get an infection, however I understand that in The States they run concurrently, is that what they have done for you?
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