ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: Captain Deb on November 12, 2009, 10:53:42 am
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I just got off the phone with my neuro's receptionist--Medicare will pay for all but about $200 for Botox injections for my headaches!!!!!! Of course I have to wait till Jan 19 because of all the hoops they have to jump through to get pre-authorization and the doc only does Botox once a month, but I have an appointment. Jan 19th is two days past my 7th ANniversary. They can't be any worse than the nerve blocks I have had right into the occipital nerve--those about make me pass out. I really hope that this is the first step in a journey towards a cure. Janet you are my inspiration!! I am glad to be another guinea pig for the rest of the AN Achers!!!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)
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Captain Deb,
Good luck!!! I really hope this works out and you get some relief from your headaches. I think it is so neat that they've found all of these fantastic uses for Botox. I have never heard of it being used for headaches before. Too cool!
Lyn
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Captain Deb ~
I'm pleased to learn that you're going to be able to receive Botox® injections to help alleviate your headaches. The two-month wait is unfortunate but at least you have something to really look forward to. Hopes and prayers that the injections will deliver the relief you need.
Jim
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Wow - botox for headaches, very cool. I may be right behind you in the botox line, as am considering for the muscle spasms in my cheek and neck. Which certainly are not anywhere near as serious as your ongoing headache issues (but, still, I'll love to get rid of the tight, achy face and neck.) Never thought I'd ever be in line for botox. Too bad we can't get a group discount...
Curious - what kind of doctor will you see to administer the injections? Neurologist? Plastics surgeon?
Debbi
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Deb .....
This sounds very interesting ..... and hopeful from what I can find in the literature. Sure hope and pray it works for you! You have been through entirely too much in the headache department.
Thoughts and prayers.
Clarice
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Curious - what kind of doctor will you see to administer the injections? Neurologist? Plastics surgeon?
Debbi
He's my local neurologist. He suggested this to me years ago, but my then insurance, BCBS of NC, wouldn't cover any of it and it is really expensive--can be up around $800-900. If it will last 3 months that would be great--the nerve blocks were only lasting me around 3-4 weeks and you can only have so many of them. The big thing is that if this works I could be a candidate for microdecompression surgery.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)
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Best wishes to you Captn Deb! I hope this is going to give you some relief and hope for future cure... I'd be really interested in hearing if the Botox are more/less painful than the nerve blocks! Let's hope for WAY less!!!
Karen
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Good luck, Captain!
Don't forget to tell us all about it after your appointment.
Jan
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Don't forget to tell us all about it after your appointment.
Ditto
:-*
We are a weird bunch when get all excited about needle injections to our heads... ;) aren't we? :D
I could not believe what the Botox did for my face pain... 10 days after injections I had almost normalcy. Mine does not seem to last the full 3 months ... but hey it works well on the releasing my muscles that are so tight they ache and cause pain... such nice to have relief. I hope you get this relief too.
Once the Botox kicks in be sure to do lots of stretching of the muscles in the neck (not by touch but by moving- you do not want to press where the botox was injected) ... and to limber up tight shoulders that all could have developed from tightening as you coped with headaches- and tensed up that area. Basically if this works and you feel good- get out there and be as active as you can during the window-of-time Botox provides you. I am finding after each Botox round (sadly it wears off) I have managed to keep things limbered "if" I do lots of stretching and therapy when the Botox is active and still working. If you tie this in with some physio I think it will sustain more between injections.
See if there is some head and neck stretching exercise you can get.
Here are some random videos I looked at... I am sure someone might pipe in with something better ... in the mean time have a boo...
http://www.wonderhowto.com/how-to/video/how-to-do-a-seated-head-stretch-254658/
http://www.youtube.com/watch?v=TC1DipAXv0sa
Good luck Captain!
DHM
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Thanks, as always, for the wealth of info, DHM. A petty question for you - do the injections hurt? (I know, I can't believe I am even asking that question after having brain surgery!!) :D
Debbi
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Dumb question. . . . what is microdecompression?? What does it help with? I still have so much to learn, even after being almost a one year postie.
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Deb can probably correct me if I am wrong ..... or add pertinent information. Simply stated microdecompression surgery is relieving the pressure on a nerve using a microscope because the area (and nerve) is so tiny. I am assuming in the case of headaches, a nerve is being pinched in the cervical spine area and that is where they would relieve the pressure. In the spinal case, I believe it is usually a piece of bone or cartilage that is impinging the nerve so not quite sure what is done to relieve the pressure.
I had microvascular decompression surgery 15 years for trigeminal neuralgia. In my case an artery and two veins were pressing on the 5th cranial nerve at the brainstem. The neurosurgeon went in via a retrosigmoid approach (same as my AN surgery 2 years ago, but on the other side) and made a bridge with a teflon pad to hold the artery off the trigeminal nerve and clipped the two expendable veins. It was major surgery but I have never had a return of the horrible trigeminal neuralgia since then.
..... by the way, there are no dumb questions here! :) Ask away ..... that is how we learn!
Clarice
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Thanks Clarice, that makes sense. I really feel for anyone dealing with headaches. I get a few but nothing that a couple of OTC pills won't cure. I hope this helps all those who deal with them.
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Good to hear from you Cap'n Deb and congratulations on your botox appointment!
Hoping this helps lots.
Maureen
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Dumb question. . . . what is microdecompression?? What does it help with? I still have so much to learn, even after being almost a one year postie.
Here's a link to a little more about the surgery:
http://www.cnn.com/2009/HEALTH/08/04/migraine.surgery/index.html (http://www.cnn.com/2009/HEALTH/08/04/migraine.surgery/index.html)
Capt Deb
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Thanks, Deb .....
That link was very helpful in explaining the connection between relief with Botox and being a surgery candidate. Also, explained what is done to relieve the pressure.
Clarice
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Here's an article written by the Chief of Neurology at Wake Forest School of Medicine on Botox--it is very informative!
http://www.imigraine.net/newrx/botox.html (http://www.imigraine.net/newrx/botox.html)
Capt Deb
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Another Botox article:
http://www.associatedcontent.com/article/405418/alternative_treatment_for_cervical.html?cat=68 (http://www.associatedcontent.com/article/405418/alternative_treatment_for_cervical.html?cat=68)
Capt Deb
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Another excellent Botox article--says doctors are making patients waait for months while they petition Medicare to pay some of the costs--that's me!
http://www.ehow.com/how_5447311_safe-botox-treatment-migraine-headaches.html (http://www.ehow.com/how_5447311_safe-botox-treatment-migraine-headaches.html)
Capt Deb
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Hi Deb!
I hope the Botox works well for your headaches. I've been getting Botox for a few years (cosmetic reasons) and love it. My plastic surgeon uses a topical cream to numb the area but I can easily go without it. It lasts about 4-5 months for me now. I had an unintentional eyelid droop one time when I first started getting the injections. Wish he could intentionally does this now. ;)
FYI - The manufacturer (distributor?) offers discounts ($50-$150) frequently which my dr passes along to his patients.
Cyndi
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This Botox stuff sure sounds magical. I just saw my neurotologist today about my severe 2x a day headaches. We decided on one more bout of antibiotics and steroids and a CAT scan of my sinuses. If the headaches persist he suggested my next option would be Botox. He said it would cost $500 for the bottle of which none would be covered by insurance, but it seemed to me (but I didn't clarify it), that the bottle was good for a few injections. At this point I don't really care, just want those headaches to end. Looking forward to hearing how your Botox appt goes. Good luck and good riddance to those headaches! :)
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Ombrerose,
Since the FDA has cleared Botox for theraputic uses, you may want to call your insurance company and harrass them a bit. You may get it cleared for them to pay. Medicare now pays for it, and they are stingy about paying for anything!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/yohohoho-1.jpg)
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Another good Botox article:
http://nyheadache.com/index.php?option=com_content&task=view&id=103&Itemid=124 (http://nyheadache.com/index.php?option=com_content&task=view&id=103&Itemid=124)
Capt Deb
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Well, I had my Botox shots. He injected my forehead, above my left ear, neck, upper shoulder, and a point in my upper back becomes inflamed before and during a migraine. A total of maybe 15 injections. He had 3 full syringes. It was done by my neurologist and he says it would be about 3-4 weeks before I start seeing results, although my forehead looks a little relaxed already. Apparently Botox for migraine takes a little longer to kick in than Botox for cosmetic purposes. I made the mistake of massaging my forehead after the proceedure because it hurt a little. My doc said nothing about not doing that and I found out by reading online that this is a no-no.. I hope I didn't screw things up!
I have my next injections in 3 months and he said that it works rather cumulatively and that if I don't get great results with this first round, I should go ahead and have a second round anyway. He can also increase the # of injections and sites then, too. I have rather deep forehead furrows--my dad had them and I've had them since I was a kid. I think I see a little lessening of the depth of them and my eyebrows have changed shape a little. (Am I getting 2 for the price of 1 here?) I look like I'm sorta mad! Or sultry! I've also got a little eyelid droop, which the literature says should go away.
Today I am having a little stiffness and pain in the neck and shoulder sites and I have a heat pack on. This could be from sitting in a 3D movie for 3 1/2 hours yesterday.
Here is an article on Botox for migraine:
http://www.headache-migraine-release.com/botox-for-migraine-prevention.html (http://www.headache-migraine-release.com/botox-for-migraine-prevention.html)
I am really hopeful that this will give me some relief. If not, I'm off to a neck specialist. I'll keep posting on my progress. I am also weaning off the Neurontin. This Botox treatment was not the diagnostic one that they do in order to see if you are a candidate for surgery. I think that those are administered in very specific sites by the docs planning the surgery.
I'll keep you all posted on my progress. BTW medicare picked up their full share (80%) of the bill, and if medicare does this, I am confident that many insurance companies will soon follow suit. As of 2 years ago when I had Blue Cross, they wouldn't pay for any of it. Things may have changed since then.
Brainwrecks Begone!!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)
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Deb - thanks so much for the update! I have been thinking about you and wondering how it went. It sounds promising - I guess we'll keep fingers crossed and hope it does the trick.
Yay for you!!
Debbi
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Cap'n Deb,
Thanks for the informative and entertaining pics and info on Botox.
Finger's crossed, (prayers too :)) for decrease in your headaches.
Maureen
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OK now, I am really starting to look a little strange. I kind of look like a Vulcan, now. I don't know if that is just the way I'm going to look, or if that will change. It's not that noticeable to other people, but when you look at yourself you are more familiar with your own face. I just seem to have a more pronounced arch to my eyebrows.
I've had a little bit of a stiff neck and some pain in my trapezius muscles, but I have NOT had an occipital headache much less a migraine, in a few days. My migraines had decreased in frequency and intensity between year 3 and now, coming on about once a week, but that occipital headache was quite frequent and nearly daily. Yay!!! I am hopeful that the Botox will continue to progress in lessening the neck pain.
I'll keep you posted!
Live long and prosper,
Capt Deb of the Starship Enterprise
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Listen here Commander Spok, aka captain parrot.
If ya gunna change from a pirate to an avatar to a vulcan, and then rename the goode ship Princess Batty Wench to the Starship Enterprise, your going to have to give the crew a whole buncha lycra outfits. let me tell ya - lycra and me don't get on at all well!!!
Hope the botox works eveb though it seems you were a punching bag for them. i remember when I got cortizone injected into my head - I had 21 injections - what a waste of time and space and pain - didn't work at all.
laz
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Hi y'all!
Well, the Botox has had 6 weeks or so to kick in and so far so good! I have had a few bouts of occipital pain, but so far it has not once progressed up to the front of my head and temple and lodged behind one eye, which, for me, are the worst of the worst headaches. I am even back to doing a little exercise. Before, just a few minutes on the treadmill would trigger severe pain. I am keeping my fingers crossed on this one, folks. I plan on going back in another 6 weeks and getting another round of injections. BTW, the Vulcan-like eyebrow droop went away. ( I know Laz would want to know this as he luuuuurves Vulcans!)
Capt Deb
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Drats, the Vulcan look gone! - I kinda reckon Jolene Blalock (Te Pol in Enterprise) is rather spunky. I thought that look might suit ya me dear capitain.
Glad they seem to be helping ya - I might venture into that territory myself.
mmm, wonder if it can restore hair colour????
laz
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Seriously Laz, dear, you have got to talk to your doc about the Botox. I don't know if you can get it paid for in the Landownunder, though. Do you guys have cheap drugs like in Canada? Where are most of your headaches located? (I know, in your head, smartass.) I mean, this stuff has totally eliminated any pain in my temple or forehead. I think it has helped tame down the occipital ones, too, although not completely. My next round should get even better results and the doc said he could increase the dose in the upper neck.
Hugglez and Kissies,
Capt Deb
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Yea!
So glad to hear that the botox is working! Fingers crossed for continued low headache days!
Maureen :)
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Howdy doody Deb,
So pleased that the botox has worked for you. My headaches are mostly centred around the incision area, they then move to the back of the head, to the other side and then to the forehead/behind the eyes. Well, something like that.
I don't know if it is covered but I'll check with my quack on saturday - need to get a referral for blood test and some other stuff (re mad cows).
Just on the drugs, not sure what you mean by cheap but for neurontin, i now get the script to be 2X300mg packets. The cost of getting a twin pack of 100 is virtually the same as getting a single pack (go figure) I pay $100 for a twin pack - thats 200 tabs of 300mg. I get $50 back from my health fund so for $50, I get about 6 weeks worth of treatment
cheers
laz
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Them's cheap drugs, Laz! Here, once your insurance co pays out $2400, the coverage stops and you are on your own. When I was on neurontin, my coverage stopped in April, but I was on a few other pricey ones, too.
Got the bill for my Botox:
Office visit $85
Injections in 2 areas $400
Botox $595
Medicare picked up most of it and my total bill was $153--waaaay cheaper than 3 months worth of meds.
Laz, I sure hope you can try this--you can be a Vulcan, too!
Live long and prosper,
Capt Deb
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Hi Deb,
I am so so happy that you are getting some relief. Hopefully the rest of us will get relief with the help of all of your suggestions.
Stay headache free ,
Bell
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I've been likened more to a Klingon than a Vulcan.
they are scarier - with a forehead that looks like its undergone surgery!
Laz
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8 weeks post-Botox and STILL no behind the eye/surgical site (mid-fossa)headache! He injected my surgical site twice. Going to see my neuro next week to give him the good news.
Capt Deb
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Great news, the "no headaches" continue! Are you pinching yourself?
Maureen
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That is so great to hear. I'm happy that you are having headache free days!
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I'm not having exactly "headache- free" days, but the ones that crawl up from the back of my head and lodge behind my eye are just staying in the back of my head. I went to the doc on Thurs and he said next time (April) they will do a few more occipital injections to see if they can dampen down the back of the head ones. Botox is a little cumulative as well, so I'm hoping for the best. Still using Imitrex which works if I can get it down in time--problem is that some of these headaches go away if I lay down for a few minutes and some get worse and I can never tell what is going to happen. All I can say is I'm doing far better with Botox than without it. Now if I can just get my durn back healed up I'll be good to go!
Capt Deb
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Getting yopur back healed up - thats a simple fix - Stop diving of the chandellier!!!!!!!!!!!!! ;D ;D ;D ;D ;D ;D ;D
Seriously, I'm glad the botox is helping.
laz
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Hi y'all--your favorite pinhead here!
This past week I had another series of Botox--three big syringes full and about 15 injections. He concentrated on the lower occipital region this time since that was the place that most of the headaches remained. I can feel that occipital nerve firing up when I'm getting a headache right at the back of my head about mid ear level. He said he could not inject that area as it is mostly bone there, but he did inject the base of that particular muscle which is probably entrapping the nerve. So far so good!
I also finally got to a spine specialist who diagnosed me with sacroilliitus and sent me to his specialty clinic just around the corner from where my stepson and daughter-in-law live--very convenient if I have to go back. They did 2 floroscope-guided injections into my scaroilliac joint. I thought I was going to jump off the table, even with the local anesthetic! Yikes!! Then I had to get in the car and drive 3 hrs home. Was in major pain mode all last night but it's much better now and should help me get back on my feet and into the gym.
Good Luck to , all of you precious ones out there dealing with post-op headaches--they do get better with time but don't hesitate to find a headache specialist if you feel you aren't having luck with your surgeon--remember, their specialty is evicting the brainboogers and not necissarily dealing with the after-effects.
Hugs,
Capt Deb (http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate_flag_black_fl_md_wht.gif)
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Good Luck to , all of you precious ones out there dealing with post-op headaches--they do get better with time but don't hesitate to find a headache specialist if you feel you aren't having luck with your surgeon--remember, their specialty is evicting the brainboogers and not necissarily dealing with the after-effects.
Thanks for that good advice to headache sufferers, Deb. It's great to learn that your doing so well, too. Congratulations! :)
Jim
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Capt Deb you are the best and I really appreciate all your posts, I've got to be your biggest fan. Are fans allowed? Oh no...anyway I can relate to you and the headaches...I am now on the Botox route after the occipital blocks worked for the neck and back of the head pain as well as most of the positional type (ie morning headaches), but like you I have the behind the eye pain and on the side of the head and down the surgical site. Supposedly the insurance I have will cover it as long as my Dr submits a letter of medical necessity. Thanks to Pattycakes I found out that the particular Dr I am going to will fight to get the Botox covered, which is so exciting. And like you said only we look forward to being stuck with needles :D
ha ha...and Happy Birthday to you!!!!!!
Liz
PS Ever been to Antigua, we love it there and they have a fantastic sailing week! good times...
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I have been to Antigua quite a few times during my boat bum days and have done ASW as well. Got to sail on some incredible boats including 73 foot "Escapade" legendary Rhodes with Captain Gill. http://www.syescapade.com/ (http://www.syescapade.com/) Did 2 legs as helmsman--WOW!!! Was there on a really cool 78 foot yawl built in 1925 in England. Loooooove Antigua, especially during sailing week.
Capt Deb (http://i235.photobucket.com/albums/ee60/Captdeb_photos/woman_sailor_at_helm_lg_clr.gif)
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I figured as much...sailing week IS AMAZING! We really love it there. They actually have resorts where they teach people how to sail, really cool place and the people are great too. Thanks for sharing!
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That should give some relief for the headaches. Go girl...
Mei Mei
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Headache relief...............
I just received 13 Botox injections on WEd. Injections were on both sides of temples, eye brows, furrow(between eyes), behind ear (jaw muscle), upper neck and 2 in incision areas. Weird feeling and some really stung.
I am staying on the RX Depakote and Tizanidine. If I feel good in two weeks I can go off of Tizanidine, then I see my neorologists in 6 weks.
Results: First night no headache, 2nd pounding and headache but I toughed it out. Third night I had to take 1/2 Alleve ponding was too much to take and I had to work. This is fourth and I think I will be ok, so far no tingling and sensations with mild pulsing. I hope botox works!!!!!!!!!
I have also upped my B vitamins and taking Xangosteen juice. Take Care to everyone,
Bell
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My neurologist said it takes 3-4 weeks to get the full effects of the Botox, so hang in there, bell! Also, Botox is rather cumulative, so the second round of injections should give you even more results. I haven't had a bad headache since my second round. I am having some strange movement effects, however. I cannot put dishes away in the cupboard over the sink! He injected some of the muscles in my trapezius area and now they don't work. My brain tells the muscle to work and it refuses! I just can't lift my arm above my head. Maybe it will refuse to become inflamed and send pain signals to my brain as well. It's worth the trade-off since I can coax Dr Love into putting the dishes away most of the time.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-3.gif)
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Just wanted to chime in on my Botox experience so far. It is definitely worth giving it a shot, especially if meds are not doing the trick for you or are giving you difficult side effects. I am not talking about Botox once or twice, but at least three to 4 times of at least a dozen to 16 injections. I had my third round, three months apart-- about a month ago and I have not been this headache-free since I woke up from surgery 7 1/2 years ago. I seem to even have less headaches than I did BEFORE surgery. Not to say that I am entirely headache-free. I still get an occasional occipital headache which I can stop in a few hours with 2 Fioricet, an ice pack, and rest. I cannot take NSAIDS like ibuprophen or aleve at all any more due to tummy issues, hence the Fioricet, which is Tylenol with a mild dose of valium-like stuff in it. Nothing like the rolling-around-crying-holding-my-head-and-wanting-to-DIE ones I was getting before, and I had about a hundred or so of those in the past 7 1/2 years. I spent thousands of $ on expensive meds--injectable Imitrex, Topamax, Depakote, even with insurance.
The funny thing is that Botox is what my neurologist mentioned to me on my second visit to him, but my insurance co refused to pay for it. It was off label use at the time, but nowdays Allergan markets two different Botoxes--Botox Cosmetic and Botox for theraputic uses. It was $1200 a visit. But that was almost 8 years ago and with new information and studies some insurance cos. may have changed their tune. When I got approved for disability, I got Medicare with it and as soon as I found out that Medicare would pay for it, I scheduled the injections. Since my last round of injections I have not once woke up in the middle of the night or in the morning with a headache, which were the absolute worst of the worst.
Happy International Talk Like a Pirate Day to you wicked Wenches and swashbucklin' scallywags!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/skull_swords_cross_display_md_clr.gif)
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Good update Deb, and glad its helping
I'm thinking about it.
laz
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Deb ~
Slightly belated congratulations on your success with Botox injections. We all know that you've been suffering far too long with disabling headaches are we're delighted to learn that you've finally found some lasting relief.
Jim
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;) :D
Captain,
Oh gee I should have listened to you and bought stocks in Botox
http://www.reuters.com/article/idUSTRE69H2TY20101018
I think not just Reuters but Forbes have been lurking our site here ;) :D ;D
Here is the Forbes report on Botox
http://www.youtube.com/watch?v=xkiXSntwRrE
I am sorry but this is really making me giggle. I tell you Captain we could have been rich... RICH I say...and sailed to the Caribean if we had bought and sold... Rich matey... Rich I tell yer...
Hand me some grog.... ;)
DHM
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That's great news. Now I have to find someone to give them to me. The first anesthesiologist that I went to says they are too expensive when I asked for them. I contacted another who does do botox and after reading my file, wouldn't accept me as a patient and that I should continue to see my neurologist. My neurologist said they won't help me. I really want to try, but just can't find someone willing to try with me.
In frustration,
Mei Mei
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You know, one doesn't know if Botox works until you TRY it! Now that the FDA has approved Botox for theraputic treatment of headaches (Yay!!!!) it should be less difficult to find someone to help you. Keep calling those docs, Mei mei!
Capt Deb