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Topic: Lidocaine Success Anyone? (Read 1291 times) |
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Connie2
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Lidocaine Success Anyone?
« on: Jan 17th, 2007, 2:14pm » |
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Hi folks,
I was diagnosed in 2002 with Chronic Cluster and Hemicrania Continua With and Without Rebound.
Dr. Stephen Silberstein (my neuro for 3 yrs) is treating patients with Lidocaine. He has suggested that I do a 2 week stint at the Philadelphia Headache Center to see if this works. I'm open to this however I do want to know if anyone else has tried IV Lidocaine and if so, what were the results, side effects and long term use suggestions.
Does anyone know anything about the use of this medication for us?
Hugs & PF Wishes,
Connie
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| « Last Edit: Jan 17th, 2007, 2:19pm by Connie2 » |
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Guiseppi
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Re: Lidocaine Success Anyone?
« Reply #1 on: Jan 17th, 2007, 2:33pm » |
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In the mid 80's I was prescibed a 4% lidocaine solution which I applied as drops into my nose, on the affected side. It was done with my head hanging backwards off a bed so it went in the right area.
It would reduce a bad headache by 2 to 3 clicks, a 9 down to a 6 etc. It always made me barf afterwards so I gave up on it and have since found treatments more effective for me. I never tried the IV route, hoping it provides you some relief.
Guiseppi
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roy21302
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Re: Lidocaine Success Anyone?
« Reply #2 on: Jan 17th, 2007, 2:41pm » |
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Connie,
Sorry you have had to find your way here, but welcome. I had Lidocaine prescribe for me and used in the same way as Guiseppi described, it was difficult to use and like him I had to give up with it. I don't know if this is the same way they are offering to treat you, you mention IV, I have never come across that method. Good luck if you try it hope your PF soon.
Cheers Roy 
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Brew
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Re: Lidocaine Success Anyone?
« Reply #3 on: Jan 17th, 2007, 2:47pm » |
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Mattrf, paging Mattrf. Please come to the information desk.
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vietvet2tours
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Re: Lidocaine Success Anyone?
« Reply #4 on: Jan 17th, 2007, 2:52pm » |
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on Jan 17th, 2007, 2:14pm, Connie2 wrote:Hi folks,
I was diagnosed in 2002 with Chronic Cluster and Hemicrania Continua With and Without Rebound.
Dr. Stephen Silberstein (my neuro for 3 yrs) is treating patients with Lidocaine. He has suggested that I do a 2 week stint at the Philadelphia Headache Center to see if this works. I'm open to this however I do want to know if anyone else has tried IV Lidocaine and if so, what were the results, side effects and long term use suggestions.
Does anyone know anything about the use of this medication for us?
Hugs & PF Wishes,
Connie |
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Until you try oxygen I would hesitate on the lidocaine thing.
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Connie2
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Re: Lidocaine Success Anyone?
« Reply #5 on: Jan 17th, 2007, 3:00pm » |
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So far, I've spent 5 wks in the hospital and have tried most of the meds discussed on this site. The only successful med that I have is the abortive Toradol injection. However Toradol has limited success due to it's use limitations.
I've also tried O2 with the correct mask however that has not proved to be successful for me. I also drink tons of water.
I'm simply reaching out in hopes to find anyone who has information about this.
Thanks again,
Connie
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| « Last Edit: Jan 17th, 2007, 3:04pm by Connie2 » |
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StressFree
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Re: Lidocaine Success Anyone?
« Reply #6 on: Jan 17th, 2007, 3:15pm » |
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The lidocaine syrup placed into nose either diluted or with q-tip was an effective abortive for me some time ago. The problem was that I would always get a rebound that was guaranteed to be KIP10 and the lidocaine wouldn't work a second time. Never heard of lidocaine in the IV. Sounds dangerous, but they must know what they are doing. Pehaps very small amounts over time will prevent rebound and fix you up. Best of luck and prayers for you, Rich
P.S. I was just thinking, it's more likely an injection to nerves/muscles. This may also be similar to a "nerve block". I've read it's effective for some. May or may not have lasting effect.
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| « Last Edit: Jan 17th, 2007, 3:18pm by StressFree » |
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Connie2
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Re: Lidocaine Success Anyone?
« Reply #8 on: Jan 17th, 2007, 3:36pm » |
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Thank you for all of your responses  Yes, I am afraid of the dangers of this as with all drugs.. We've tried more risky things I suppose. I'll give it a shot pun intended and after my 2 wk stay, I will post and let you know the results.
I don't have the exact date that I will be going into the hospital and of course have to wait on insurance approval.
Many thanks and please keep the responses/experiences coming...
Connie
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SophiaK
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Re: Lidocaine Success Anyone?
« Reply #9 on: Jan 20th, 2007, 12:31pm » |
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I tried it, it aggravated the HA, in 2 days my nose was extremely sore. I believe that's also what the doctor injected into my head, that didn't work either. Eveybody is different, it might work for you.
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Samiam
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Re: Lidocaine Success Anyone?
« Reply #10 on: Mar 6th, 2007, 3:07pm » |
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Connie,
Please be very careful with Dr. Silverstein. I was a past patient of his and landed in the hospital under his care for 8 days. I was never so sick. I think he is filled with himself and think he has the only answers. He use to be with Germantown hospital but has since moved up. When I became pregnant he dropped me cold and refused to help my OB take me to term. That is when I left him. I think he dose a long of experiments on his patients and when ever you ask him a question he gets annoyed. He has a God complex. Another time he put me on daily injections of DHE 45 to abort the cluster is worked but when they wanted to switch me to Imitrex when it just came out you had to have an EKG and when mine came back abnormal he had his nurse call me and refuse me any meds or help until I saw a cardo. It took 2 weeks to get in so he left me out to dry without anything to help me with the pain. This is my My opinion but I wanted to share with you. I was 25 when I went to him because I worked at Germantown hospital. I left him when I was 27. I beleive he is with Jeffereson now.
Sami
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Re: Lidocaine Success Anyone?
« Reply #11 on: Mar 6th, 2007, 6:44pm » |
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It didn't work for me either. (Neither did the Cocaine drops). You did say "IV Lidocaine" .... I've never heard of anyone doing this drug intravenously.
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| « Last Edit: Mar 6th, 2007, 6:49pm by unsolved1 » |
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chrisw
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Re: Lidocaine Success Anyone?
« Reply #12 on: Mar 7th, 2007, 2:50pm » |
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I ahd a lidocaine treatment a few years back by some pain managemnt doc. he stuck 100 ft of gauze up my nose and soaked it with lidocaine. it had no effect whatsoever on my ch. maybe injecting it straight into the head will work better. please post your outcome. I tried to get into the jefferson headache center so many times but the waiting list is so long that by the time my appt would come around my headcahes would be gone. I go to the headache center in kennedy hosp in stratford.
goood luck with your treatment,
chrisw
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Lizzie2
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Re: Lidocaine Success Anyone?
« Reply #13 on: Mar 7th, 2007, 7:51pm » |
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Hey Connie - sorry you are hurting. I'm in a place right now where if I had a backup of money saved, I would be doing the hospital thing right now too. My headaches have been so bad lately that it's unbelievable. First off...the new daily persistent headache has been the worst, but the clusters are still coming 5-6 times a day... It sucks so much.
But the reason I'm posting is because I was actually the 2nd person that Jefferson tried on the continuous IV lidocaine. The first time, it took 10 days to try it. That was with Dr. Charles Siow. Then he moved back to Singapore and my first hosp stay with Dr. Young, he said that 10 days was way too long and wouldn't try it for me. But then I think they started to see it taking longer and longer, so by the next time I was admitted, I was on the lidocaine for 12 days. I did okay on it, and I'm now on mexiletine - which is kinda like the pill form of lidocaine. However the mexiletine is making me so nauseous that I have been unable to increase on the dose. I think I've mentioned before that I was admitted to Jefferson about 7 times for headache, but the last time was in December 2004 to January 2005. Since then, the only hospital admissions I've had were for various surgeries, and the only reason I haven't been admitted for headache is because of work and the inability to miss.
The last time I did the lidocaine, however - even by the 12th day, I was still getting clusters at least twice a day - granted it had decreased to that much, but was still getting them. That was actually the 17th day of my hospital stay since I did 5 days of the usual stuff. So then one of the docs covering for Dr. Young, who was out of town, said maybe they should try the depacon again - but I said that I'd had enough. I needed to get back to school and my part-time job, and I didn't think they'd be able to get it to improve any more than it was.
Hospital stays have given me a bit of a break from pain, but the thing is - my pain usually gets pretty bad again within a few days to a couple weeks after I get out. My mom used to say that this means I shouldn't bother, but then we realized that the times I go to the hospital - it's because I have lost the ability to cope with the severity of the pain and school/work/life are severely suffering. So just by having that time of feeling a little better with the meds they give me, that's at least enough break to be able to carry on with the fight again.
Anyhow...I wish you luck. Sorry you're hurting so much.....
Hugz,
Carrie
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Connie2
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Re: Lidocaine Success Anyone?
« Reply #14 on: Mar 8th, 2007, 2:05pm » |
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Hello all,
Thank you for your responses. Yes, I do feel that Dr. Silberstein does get annoyed with questions. I've been seeing him for three years. I've gotten to know him and do believe that even though his tough exterior is a bit abrasive that he truly does want to help people. Yes, I get a sense of God mode also. I had attempted to see a few local Neurologists because the drive can be a bit rough ~ They all see that I'm his patient they say that they can't do anything more than he will be able to do for me as he has the most cutting edge treatments. They have all refused to treat me. Yes, this is all very frustrating.
I will be admitted on Tuesday March the 13th for the continuous IV lidocaine treatment. After speaking with Dr. Silberstein on March the 1st he does claim an 80% success rate. I am unsure as to how that is measured as we all know that numbers can be a bit of a game. Hell, it's worth a try.
I had spoken face to face with three people that have had the treatment and all three have said that the side effect of it mainly being pukin your guts out... has prevented them from being able to say that this is an effective treatment. Most of what I've heard is that while there is pain relief after about 2 hrs that the pain does return which leads me to wonder how often would a person have to take this med and what are the long term effects that it may have on your body. I suppose there is not much news out there as this is a fairly new experiment or trial.
I do know that I will be hooked up to a heart monitor the entire time and will be in the cardiac ward for the duration of this treatment at the Jefferson Hospital. This also makes me a bit gun shy. If it weren't risky, why the need for the cardiac team standing by... I've read of the possibility of seizure etc.
All we can do is keep on trying,
I will post my results and experience with this when I return.
PFW to all,
Connie
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Lizzie2
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Re: Lidocaine Success Anyone?
« Reply #15 on: Mar 8th, 2007, 9:58pm » |
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Connie -
Because lidocaine is a cardiac drug - a sodium channel blocker (type IB i think) - that's the need for cardiac monitoring. It's an antiarrythmic, but the thing about drugs that fight against bad heart rhythms is that they can all also cause bad heart rhythms. I had a little bit of bizarre numbness and tingling and some dizziness while on the lido. The worst for me was that I started having super ventricular tachycardia (SVT) where my heart rate was over 200 - it would only last for a minute or two (no need to cardioevert with shocking), but it kept coming back over and over. We weren't sure if this was from the lidocaine or thorazine - Dr. Young thought it was from the thorazine. They also test levels of the lidocaine - I know at one point, they couldn't go up on my dose because my level was at the high end of therapeutic range.
I work Thursday of next week (8pavilion at Jeff) and have a neuro appt with the NP on Tuesday I think. If you want - I'll come visit you. PM me if interested, and I'll give you my phone numbers so that you can call and let me know what room you are in.
Hang in there......I'll say a prayer for you.
Hugz,
Carrie
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Connie2
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Re: Lidocaine Success Anyone?
« Reply #16 on: Apr 3rd, 2007, 5:06pm » |
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Back from cont iv lidocaine treatment. Without a long rendition of my experience there I will simply say that unfortunately for me it didn't work... How frustrating.............
Oh well, moving on and will continue to try..
Hugs n pf wishes to all
Connie
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Samiam
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Re: Lidocaine Success Anyone?
« Reply #17 on: Apr 3rd, 2007, 7:25pm » |
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Here's your first hug and Lord knows when we have these we need them.... 
If I were you and I am not. Many will not touch Dr. Silberstein's patients because in the medical field which I use to work in he is know as a reagade and a bit off the wall. Not that he's so respected just that he pushes the envelope.
There is a Dr. in Lankaneau Hospital that use to be his partner and he is so much more (from what I am hearing) grounded and is more about trying to find what works for you and not just making you into a human ginipig. Which many have claimed that is what Dr. Silberstein is doing.
Please know we are all here pulling for you. I'm still in cycle also and it's been hard. I'm so hoping that my cycle will end soon.
Sami
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pieface_49
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Re: Lidocaine Success Anyone?
« Reply #18 on: Apr 6th, 2007, 10:36am » |
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Hello Connie and thank you for the post. There is a lot to learn from this post. There is even more to learn from the medical view of lidocaine.
http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Mon ographs/CPS-%20(General%20Monographs-%20X)/XYLOCARD.html
This URL will have to be cut and pasted into a browser. It was the first item that came up while searching Google for "lidocaine IV". I don't know the html code to fix it.
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| « Last Edit: Apr 6th, 2007, 10:39am by pieface_49 » |
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chrisw
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Re: Lidocaine Success Anyone?
« Reply #19 on: Apr 7th, 2007, 4:17pm » |
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Connie,
soo sorry the treatment didnt work for you. It really sucks to get your hopes up like that only to get nothing out of it.
I hop e the prociedure wasnt too painful, and that maybe there is something elso out there to help ease your pain.
I see Dr. Mueller, at the headache center at Kennedy hosp. in Stratford NJ. She and her collegues seem pretty good, I guess (hard to tell, when your still Having headaches) That isnt far from phila at all.
Hey, us Del valley girls should get together for a gripe fest.
chrisw
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Lizzie2
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Re: Lidocaine Success Anyone?
« Reply #20 on: Apr 8th, 2007, 1:11am » |
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Connie...
I'm so sorry that it didn't help...  For me, the last time, I was on it for 12 days (after 5 days of the traditional shtuff), and my migraine dropped to less than a 5, but I was still getting clusters like twice a day...and the clusters would aggravate the migraine - it got complicated. Then Dr. Ashkenazi was covering while Dr. Young was out of town, and he wanted to try depacon again, but at that point I'd had enough - I figured that if we hadn't kicked it by day 17 in the hospital, then it just wasn't meant to be, and I left. I was better than when I'd gone in, but still was getting CH's - and I know now that I will probably never be pain free from the constant migraine. This was the visit I referred to from December 2004 to Jan 2005.
I'm so sorry I never visited - I didn't get your email until way late because I don't use my yahoo email account!!! I felt really badly but I figured it was too late by the time I got it.... If I update my email address through the board, I worry that it will somehow screw with my account as I've heard of that happening to others, but if you ever want to reach me, please email me at lizzpiano (at) gmail (dot) com. I'm so sorry that I didn't come visit you. I seriously would have, but just didn't get the email until very recently!!! It wasn't that I didn't care though....!!!!
I just did 3 days of the outpatient infusions this week - Tuesday, Wednesday, Thursday. I posted about it on the general board - there were 2 other cluster headache sufferers there, too! I haven't had a CH now since Wednesdsay morning (knocking on wood...), although my migraine is fluctuating from a 4-6 or so for me... on my migraine scale of things. I still think it was of some benefit as I was having a hard time functioning AT ALL prior to the infusions. I missed one day of work on Wednesday, but not such a big deal. The worst was that I stopped by my unit on Thursday morning to turn in my mandatory yearly eval, but I filled part of it out on one of the nights after the infusions, and I have a tendency to have some delusional/confused thoughts on some of those meds. I had to email my boss to ask her if I can have the eval back to review just due to turning it in while on the meds and not remember what I put on it! I'm pissed that I put myself in that position, but honestly I didn't know any better - I do/say things that I later don't remember while on those meds for infusion/inpatient sometimes!! Frustrating...
At any rate, I'm so sorry it didn't help for you. I know the feeling when nothing works...I truly do, and it is awful. I agree with Chris - I think us delval girls should get together for some support....sounds like we could all use it!!!
PM me here or email me at the address I posted above and we can chat....
Hugz and continued PF wishes...
Carrie
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Connie2
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Re: Lidocaine Success Anyone?
« Reply #21 on: Apr 18th, 2007, 1:53pm » |
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Please don't judge my spelling, or punctuation today... just having a real a bad day guy's
Thank you all for posting and I wish pain free days for all of you too. This just plain sucks! I've not logged on because well I just didn't have anything informative or positive to say. I'm frustrated, a bit angry and hurting...
I went back to my follow up appointment after the very frustrating and painful stay in the hospital. Lidocaine is very hard on the veins. I was stuck daily, lost iv sites daily with the exception of 3 days and they couldn't install a picc line due to lack of manpower. They were talking about placing and iv site in my foot and I said um noo. Soo I proceeded to threaten to contact the media after taking pictures with my cell phone of my totally f'd up arms. After that the picc was installed the following day. *sighs* I was released two days after that due to the trial not working. Hellova lotta good that did... *sighs again*
Oh, and while I was out of it.. which is most of the time.. a nurse came in and game me someone else's meds... it was DHE and I was fine (i thank god it was dhe could have been anything) but damn.. anyway moving on...
I went back for my follow up appointment and I am being asked to participate in the ONS trial yet again.. 4th time now. I was told by 3 Neurology surgeons that I would not be a good candidate for that trial due to the location of my headaches (migraines) keep in mind that I'm chronic with both daily migraines and CH. I know that ONS even when done on someone who is a good candidate for it has it's complications and for the most part in the long run it destroys your nerves and causes other complications such as electro pads moving, infection, possible drooping face and not to mention the fact that it may not be effective.
How frustrating.. I feel like I'm being pushed. Liz no worries for not getting back to me.. It's OK. I was out if it in the hospital anyway. I didn't know that hallucinating was a side effect of this treatment. I was just plain scared, in pain, and hallucinating they were doing nothing but inflicting more pain. Needless to say, I did not have a good experience.
Thank you for all of your support and your comments. I don't post often but do read often. I don't know what to do and I know that the doctor's don't either.
Hugs,
Connie
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ClusterChuck
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Re: Lidocaine Success Anyone?
« Reply #22 on: Apr 18th, 2007, 6:08pm » |
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I have never tried the IV lidocane, but I was on the pill (NO, not THAT pill ... SHEESH!!) for a while, and it never did anything for me.
Good luck!!
Chuck
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vietvet2tours
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Re: Lidocaine Success Anyone?
« Reply #23 on: Apr 19th, 2007, 3:43pm » |
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You still haven't mentioned O2
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Connie2
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Re: Lidocaine Success Anyone?
« Reply #24 on: Apr 20th, 2007, 1:57am » |
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yes, i've tried o2 with the correct mask both in and outside of the hospital.. unfortunately it doesn't work for me...
i'll quit wining now.. thank you all for allowing me to vent. just a very rough time right now.
connie
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