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Topic: Lidocaine (Read 864 times) |
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Bond007
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My neuro prescribed nasal lidocaine for my ch. Has anyone tried this and had any success with it?
Oh, and he's increased my Topamax from 200 mg a day to 300 mg a day. YIKES! Then again, I really don't have any side effects from the drug once my body adjusts to it. I am a little dopey while I titrate up, but once I get there I'm usually alright. I'm crossing my fingers on this one, though!!! 
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| « Last Edit: Sep 15th, 2006, 10:14am by Bond007 » |
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FramCire
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Re: Lidocaine
« Reply #1 on: Sep 15th, 2006, 11:23am » |
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on Sep 15th, 2006, 10:13am, Bond007 wrote:My neuro prescribed nasal lidocaine for my ch. Has anyone tried this and had any success with it?
Oh, and he's increased my Topamax from 200 mg a day to 300 mg a day. YIKES! Then again, I really don't have any side effects from the drug once my body adjusts to it. I am a little dopey while I titrate up, but once I get there I'm usually alright. I'm crossing my fingers on this one, though!!! |
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I tried it for the first time yesterdasy with very little help but studies have shown it ot help. Are you going to use nasal spray or drops?
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Bond007
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Re: Lidocaine
« Reply #2 on: Sep 15th, 2006, 12:28pm » |
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We're shooting for the nasal spray as it's supposedly easier to administer.
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FramCire
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Re: Lidocaine
« Reply #3 on: Sep 15th, 2006, 12:56pm » |
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on Sep 15th, 2006, 12:28pm, Bond007 wrote:| We're shooting for the nasal spray as it's supposedly easier to administer. |
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Please post how it worked. I tried 4 shots up the nostril of side my headache is on of 4% and it worked just a little. Longterm, not much help but studies showed it to be like %60 effective.
Let me know how often you are told to take it and your success. I still have a mostly full bottle here.
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Squanto
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Re: Lidocaine
« Reply #4 on: Sep 15th, 2006, 1:23pm » |
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Yes, I've used the nasal lidocaine drops.
It was pretty effective for me. Sometimes the headache pain was nearly totally relieved. Othertimes, the pain was decreased but seemed to "move back" from my eye to the middle of my head. (If that make any sense.) But you have to remember, it's a "procedure." It's not going to be a simple as taking a pill. But it has almost no adverse effects and it is VERY inexpensive.
Since I got my oxygen rig set up I haven't used the lidocaine but a couple of times. For me the O2 seems quicker and consistently more effective.
IMHO about drops vs nasal spray:
Using the drops the first time is a learning process. After you've done it once - it's a piece of cake. If you do it right (and I can go into more detail if you want) the drops "pool" up at the top of the nasal cavity in close proximity to the trigeminal nerve plexis. That's what you are trying to anesthesize (numb up.) After using the lidocaine drops there's sort of numb feeling way in the back of the throat which really isn't that bad. The small amount of the drops that get into the back of the throat don't taste particularly good - but it's tolerable. I would think (based on using other types of nasal sprays) that when using the lidocaine as a spray the "numb" feeling would be a lot more extinsive, you'd get more of the bad taste and the max amount of medication wouldn't get to where it'll do the most good.
Squanto
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Bond007
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Re: Lidocaine
« Reply #5 on: Sep 15th, 2006, 1:24pm » |
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I'll let you know. I'm getting hit with Kip 2's-4's left and right all day so far. I'm heading up to the pharmacy here in a few minutes to get the script filled and then I'm heading home. My neuro was more than happy to fill out my FMLA paperwork for me covering my absences, and I just can't concentrate very well even these minor headaches hitting so frequently today. They're just killing me. What's worse, is that as the day progresses, they're getting more intense and I'd rather be at home if the big one hits me next.
Yeap, it's definitely time to go. Kip 5 is coming on strong. Damn this MFing beast!!!! 
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Bond007
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Re: Lidocaine
« Reply #6 on: Sep 15th, 2006, 1:26pm » |
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Thanks for the info, Squanto! I'll see what my pharmacy has.
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Squanto
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Re: Lidocaine
« Reply #7 on: Sep 15th, 2006, 2:09pm » |
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Addendum:
I forgot to mention, there's only one pharmacy here my town that "compounds" medications. i.e. makes them from the parts. You may have to ask your "usual" pharmacist where to get the lidocaine solution made up in the city where you live. If you get the drops, ask for a dropper bottle They should give you one for at no extra charge (at least they do here.)
?? Your headaches are both right AND left?!? or was that just your way of saying you are getting hit a lot. I don't think I've heard of cluster headaches being on both sides at the same time.
Good luck,
Squanto
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Guiseppi
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Re: Lidocaine
« Reply #8 on: Sep 15th, 2006, 3:09pm » |
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I tried it back in the 80's and didn't have any success at all. I might have a retarded nose though cuz the imitrex nose spray didn't help at all either, but the imitrex shots work like magic for me! I hope it helps you, I've seen a few success stories on the board with it.
Guiseppi
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SophiaK
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Re: Lidocaine
« Reply #9 on: Sep 15th, 2006, 4:00pm » |
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Took it recently, in a gel form. It seemed to aggravate the HA, but episode seemed shorter. However, the last time I used it, it burned my nose and forehead. Stopped at that point. Good luck.
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Bond007
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Re: Lidocaine
« Reply #10 on: Sep 15th, 2006, 4:38pm » |
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Only left-sided CH, Squanto. The other was a figure of speech only, meaning I was getting hit A LOT.
The pharmacy only had the 4% viscous solution, not the nasal spray. My pharmacist told me to go ahead and try this. If it doesn't work well for me, I should call him back and he'll order the spray and he could have it in on Monday and I can try that instead since my neuro wrote the script out for either or which covers my insurance as well. Technically, I can have both scripts active at the same time. Kinda cool, I suppose. And, he did give me a free dropper. This stuff is really thick!!!! YIKES! 
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Tara Ann
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Re: Lidocaine
« Reply #11 on: Sep 15th, 2006, 6:27pm » |
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I'm going to keep an eye on this thread if you all could keep up on the lidocaine updates. A few years ago doc and I were gonna try the lidocaine spray but then I moved out of state. I have a new nuero appt (gotta wait till NOV!) and I feel like I've tried about everything and I'm hoping to go into this appt. with a list of things to try that I haven't (so far topamax for a prevent and lidocaine as an abort are all I have on my to try list)
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Squanto
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Re: Lidocaine
« Reply #12 on: Sep 15th, 2006, 9:13pm » |
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I hate belabor this point - but you just know I'm going to anyway.
My recollection is that Dr Kidro's study used 4% lidocaine in saline SOLUTION applied with a dropper in such a way that the solution got into the uppermost reaches of the nostril. A spray is going to be dispersed on the in-sides and turbinates of the nostril before it gets to the spot the lidocaine should hit. If you try to use a gel you're going to have to stick a Q-tip waaaaaaay up into your nose - and I promise you that you are NOT going to want to do it more than once.
Most pharmacies are going to want to sell you spray or gel because that's what they have on their shelf. The 30cc bottle of 4% lidocaine saline solution that I use(d) cost about $10.00 (dropper bottle included.) I left the prescription at a compounding pharmacy in the morning and picked it up in the afternoon. No worries mate!
Her's how to apply the stuff:
~this takes longer to write or read than it does to do it! ~
1) draw up about 1/2 dropperful of the solution (about 4-5 cc)
2) lay down (on couch or bed - your choice) this is important. Sitting or standing won't cut it.
3) lie with the side of your head that's affected by the headache hanging slightly over the side of the bed (or couch)
4) turn your head sideways and "up" towards the top of your head, so that the nostril (that's the hole) is pointing a the ceiling.
5) put the dropper in the side of your nose (the ear side) and advance the tip of the dropper up in the nose just a little bit. (if you try to put the dropper on the "bottom" (mouth side) or middle-side of the nostril or shove it way up there - it'll be uncomfortable and you'll give up before you get started.)
6) slowly squeeze the bulb on the dropper, allowing the solution to run up (actually in the position you in - it'll be running down towards the floor. Gravity is at work here) into the top and back of your nose. Don't squirt. Let it trickle.
7) If the solution runs out of your nose or if it runs down into your throat - your head isn't far enough back , tilt you head back some more. What you are trying to do is catch the solution in a "pocket" (for lack of a better word) in the very upper part of you nasal cavity. If I could draw you a sketch of this it would be a lot easier to understand.
 once you've emptied the dropper - stay there a while. After you done this a time or two you'll learn to sorta move your head around to move the medication around in the little pocket. Sorta bathes the area of the trigeminal nerve. Think of the medicine as if it were in the palm of your hand when you cup it. If you move too vigourously you're going to spill the solution out of cup and it won't do any good. But if you do it gently, you can wet most of your palm with just a little bit of solution.
9) stay there a minute or two (I've never timed it) It seems tho' like the longer I stay there with my nose/face pointed at the ceiling, the better the effect and less solution runs out of my nose and into the back of my throat when I sit up. I'm not a very patient guy (my wife tells me) so it doesn't take very long.
10) After I'm upright, I wipe my nose but don't "blow it" for a little while after instilling the solution. I sometimes drink something to wash away any unpleasant taste from the back of my throat - but that's an optional step.
Again, after you've done this a couple of times you'll get the hang of it and it gets easier. Don't give up after only one or two tries. It's a sorta weird physical position you'll put your body into. Takes practice. I suppose you could have an assistant squeeze the dropper - but I find I'd rather to be in control of something stuck in my nose.
WOW! This was a LOT longer than I thought it was going to be. Sorry 'bout that.
Final point: on this board folks get blasted all the time because they complain that something doesn't work, then somebody berates them because they "didn't do it right." I'm not going to do that. If it's too much trouble, too big a hassle, too uncomfortable, takes too long, makes your nose run, stings your nose, or whatever - at least it didn't cost a couple of hundred bucks. But before you give it up as a bad deal - fiddle with it a little bit and see if you can come up with your own customized technique for putting the lidocaine where has a chance to help your pain. You've already paid for the stuff. Using it up in various attempts to make it work ain't gonna cause you any bad or lasting side effects. That has a better chance of relieving your pain than pouring it in the crapper.
If the Lidocaine SOLUTION just doesn't do any good for you, tell us - then we can tell you more than you ever wanted to know about high flow 100% oxygen for temporary relief (a.ka. abortive relief) of cluster headaches.
Here's hoping you have pain free days ahead.
Squanto
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| « Last Edit: Sep 15th, 2006, 9:24pm by Squanto » |
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Bond007
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Re: Lidocaine
« Reply #13 on: Sep 15th, 2006, 9:29pm » |
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Well, I'm not overly impressed with the Lidocaine thing, let me tell y'all. For starters, that shit tastes naa--ssty! YUCK! Then, it'll numb the shit out of my throat as well as my nose and trigeminal nerve. Anyway, here's an honest review:
CH Kip 5 struck @ 4:45 CDT and I administered 1ml of Lidocaine by laying down on my bed with torso slightly elevated so my head could get a 45 degree tilt to it. The Lidocaine was administered with a dropper bottle supplied by my pharmacist. At first, the medicine had a slight burning sensation, but rapidly numbed my nostril and effectively diffused the HA within seconds after administration.
Unfortunately, excess Lidocaine leaked into the roof of my mouth and proceeded to numb the back of my tongue, roof of my mouth, and upper part of my throat. The entire sensation was rather disconcerting. I had the panicky feeling that I was choking and couldn't swallow even though I knew I was just fine. It was just odd, that's all.
Anyway, the 1 ml Lidocaine continued to suppress the CH for exactly 1 hour and 15 minutes. At approximately 6:00 pm, either the Lidocaine had completely worn off or I was hit with a new and intensely stronger CH, kip level approximately 8. I tried redosing with 1 ml of Lidocaine and it only suppressed the CH for about 30 minutes. I don't know if the problem was with me or the med. I resorted to my trusty Stadol.
Tomorrow morning I'm calling my pharmacist and asking him to order the nasal spray form of Lidocaine for me to try. This is too difficult for me to try and deal with on a regular basis. I'll continue to try it over the weekend and report back here, though.
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Bond007
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Re: Lidocaine
« Reply #14 on: Sep 15th, 2006, 9:37pm » |
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Perfect Squanto! That's exactly what I needed to know!! Seriously. My pharmacist actually looked at me and said that he didn't even know this drug existed until he'd filled this script. UGH! So, I've got a bottle of molasses-like solution in my house. It's not fun to work with, but I'm willing to try anything right now. Thanks a lot, bro!
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BB
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Re: Lidocaine
« Reply #15 on: Sep 16th, 2006, 2:06am » |
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Hi James
If you have the gel like solution, try this trick: put it in the fridge then use a cotton bud to smear it deep into the back of the nose on the side of the cluster. May need 2,3 applications.
Daniel has tried it and it helps a little, it numbs the side of the cluster a little bit, good for the smaller attacks but totally useless for the higher KIP.
Good luck and painfree wishes to you
Annette
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Squanto
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Re: Lidocaine
« Reply #16 on: Sep 16th, 2006, 5:54am » |
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on Sep 15th, 2006, 9:37pm, Bond007 wrote:| My pharmacist actually looked at me and said that he didn't even know this drug existed until he'd filled this script. |
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I think you need to find an older pharmacist! At the very least you need one that has started to shave (or if a female - has entered memarche)
Squanto
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| « Last Edit: Sep 16th, 2006, 5:55am by Squanto » |
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Bond007
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Re: Lidocaine
« Reply #17 on: Sep 16th, 2006, 3:21pm » |
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ROFLMAO! I know that shouldn't be funny, though. UGH! Anyway, yeah, I've got the gel and I've not quite given up on it yet although I've discovered that it might only be good enough for low level and shorter CH attacks. I've finally figured out how to administer it without also anesthetizing my mouth and throat and just hitting the inside of my left nostril and the nerve endings. 3rd time's the charm, right?!
Would be about right that the Lidocaine would wear off after about an hour and fifteen minutes? I know mine did right in the middle of a Kip 8 when I was driving myself home of town this afternoon. I damn near wrecked the car trying to get home to Stadol. The HA just came out of nowhere it seemed and hit like a freight train. Scared the living daylights out of me. Anyway, I'm comfortably drugged right now because I didn't enough patience to let the Lidocaine do its work up my nose.
I'm going to call my pharmacist and ask him to order the nasal spray form and try that. I'm thinking it will be easier to administer in a pinch, but perhaps might not last as long as the gel will. I'm willing to try anything right now, though.
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Bond007
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Re: Lidocaine
« Reply #18 on: Sep 16th, 2006, 3:34pm » |
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on Sep 16th, 2006, 2:06am, BB wrote:Hi James
If you have the gel like solution, try this trick: put it in the fridge then use a cotton bud to smear it deep into the back of the nose on the side of the cluster. May need 2,3 applications.
Daniel has tried it and it helps a little, it numbs the side of the cluster a little bit, good for the smaller attacks but totally useless for the higher KIP.
Good luck and painfree wishes to you
Annette |
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Annette:
I'm doing ok with the dropper bottle -- I'm getting the hang of it. Is 1 ml enough of the solution, though? It just seems that the numbing effect only lasts for 1 hour, 15 minutes before it wears off. Now, for most of my CH's that's perfectly fine. Many of mine don't last more than 40-45 minutes. But, my more severe CH's, one's that hit Kips 6-9, tend to last considerably longer. The Lidocaine seems to be wearing off as these CH's are ramping up in the pain level and I'm not psychologically prepped and the whole takes me by surprise which adds to my wild-like reaction. I'm not a pretty sight when the Lidocaine wears off.........
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jon019
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on Sep 15th, 2006, 9:37pm, Bond007 wrote:| Perfect Squanto! That's exactly what I needed to know!! Seriously. My pharmacist actually looked at me and said that he didn't even know this drug existed until he'd filled this script. UGH! So, I've got a bottle of molasses-like solution in my house. It's not fun to work with, but I'm willing to try anything right now. Thanks a lot, bro! |
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Me too Squanto. Just given the script for lidocaine on last visit to neuro. Appreciate her knowledge and willingness to try new (to me) things however was really weak on how to use the stuff.
The pharmacists (hospital pharmacy) knew what lidocaine was but had NEVER heard of this use. All were very interested and quizzed me on clusters, treatments, my history, nearly begged me to report back how it worked. If I had not been so frazzled from this new cycle I would have been delighted at the attention and obvious interest in ch's. Too tough to concentrate at the time. Obviously they could not help with how to use.
Got 2 50ml bottles (4%) for a ridiculously low copay of $6.84 (and yes, they gave me a dropper bottle). So agree completely, what have I got to lose trying something new and for pennies?
Have tried multiple times (always sitting or standing) and wondered if I was nonreactive to lidocaine-NO NUMBING.( Even tried pouring into a spoon and snorting (har-har)). Now I know why.
If it would help with this s**t I would shove a broomstick up my nose. Now I got the straight skinny thanks to you. I'm waiting for the next hit to give it a proper try (and try, and try).
You ROCK, thank you!
Jon
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BB
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Re: Lidocaine
« Reply #20 on: Sep 16th, 2006, 5:20pm » |
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Hi James,
1ml is enough but you can use it again after 15 mins if it starting to wear off. Its quite safe to use twice , even 3 times.
If your attack lasts say 60 mins, you can use it 3 times , that would just about numb it the whole attack for you.
But beware that after say 5,6 days of using it every day, should give it a break of 2 days for the mucosal lining of the nose to recover or you may get nose bleed.
Take care and painfree wishes to you.
Annette
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Squanto
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Re: Lidocaine
« Reply #21 on: Sep 16th, 2006, 6:07pm » |
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Okay, for some reason I can't keep my mouth shut on this topic. Sorry.
Remember, Lidocaine is a TEMPORARY thing. It's NOT a preventive. If you are having cluster headaches this stuff is just going to ameliorate (that is, take the edge off) the pain for a short time, while you're waiting for a preventive medication to kick in.
If you are having cluster headaches, you REALLY should be taking something as a preventive. That is, something to stop the next headache from coming on. There's a longish list of things that are being used as preventives Including predinsone burst and taper, Verapamil, Topomax, Depakote, 'shrooms, morning glory seeds and the list goes on & on. Some of these relieve the headache you're having right now plus they work to prevent the next one. Others just work to prevent the next one.
As you will read here a lot, "Your milege may vary!" That means what works for John Doe (forgive me if John's a member here) may not work for you and vice versa. Read everything you can about whatever you're taking. You may find out that what you are doing is causing rebound headaches or withdrawal headaches. You may have a secondary problem on top of your basic problem.
There's been repeated discussions here about using analgesics (ibuprofen, stadol, vicodin, demerol, and God knows what else.) There's a lot of controversy about using these - my own opinion, which I admit you didn't ask for, is: if you are going to use something that is only going to give temporary help - don't use something that you can become habituated to/addicted to/ develop tolerance to that's nearly as bad as your headache but in a different way.
We all want these things to go away NOW! but nobody has found the magic bullet yet. We wouldn't be lurking and writing on this board if we weren't looking for one.
Thus endth the rant.
Squanto
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BB
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Re: Lidocaine
« Reply #22 on: Sep 16th, 2006, 6:23pm » |
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Thanks Squanto for very valid points, but you dont get addicted to Lidocaine, its a temporary LOCAL pain killer which acts on nerve endings and has no effect on your central nervous system, when applied properly. Only SYSTEMIC pain killers that act on your brain that causes tolerance and/or addiction.
And yes Lidocaine is only temporary pain relief, not to be used as abortive or preventive.
Regarding the need for preventives, it depends on how long the cycle is, how often and how bad are the attacks. Some people only have short cycle, says 2 weeks and they have few attacks which can be quickly and safely abort with oxygen only, and maybe an occasional triptan, then these people dont need preventives.
If the cycle is long and the sufferer gets many or bad attacks then yes, preventives are mandatory.
Annette
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Squanto
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Re: Lidocaine
« Reply #23 on: Sep 16th, 2006, 7:24pm » |
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on Sep 16th, 2006, 6:23pm, BB wrote:| ... but you dont get addicted to Lidocaine, its a temporary LOCAL pain killer which acts on nerve endings and has no effect on your central nervous system, when applied properly. Only SYSTEMIC pain killers that act on your brain that causes tolerance and/or addiction. |
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Yep, I agree!
Quote:| And yes Lidocaine is only temporary pain relief, not to be used as abortive or preventive. |
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In my long-winded way that's what I was trying to say. "If I'd taken more time - it would have been shorter!"
Squanto
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jon019
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Hi Annette and Squanto,
Hmmm, ok, semantics I guess. As far as I'm concerned stopping a hit in progress is an abortive. I don't consider it a cureall, just another bullet in the arsenal.
As a preventive I am currently using verapamil (it has been a good friend but not working now). Over the years have tried many, many, many...
O2 is the best friend, but it don't always work. The search goes on and lidocaine is next in cue...
Loved the short vs long comments. Reminds me of either T. Jefferson or Ben Franklin who said (to paraphrase). Your letter deserves a short answer, unfortunately I only had time to write a long one.
It's a joke, very much appreciate your comments.
Regards,
Jon
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