headache help...botox/lidocaine? need relief

[k2]

HI-
I am new to the forum and this is my first time posting.   I had my surgery just over a year ago. 

I have been suffering daily from horrible headaches and the doctors can not find a medication to help me.  Currently, I take either Ibuprofen or Tylenol every 4 hours (which I know is not good for me).  I have tried over 7 different medications to calm the nerve endings down (most anti-seizure meds) but nothing has worked.  I have also tried a nerve blocks which didn't help. 
 I can't sleep more than 4-5hours either because I wake up with these headaches as well. 

When I have called my surgeon they tell me that they never have had a patient like me and I went to one of the most well known doctors in my city. 

I have tried physical therapy, massage therapy, acupuncture, and trigger point therapy.

I saw my doctor this week and he wants to try Botox (if I can get approved).  Has anyone tried this?

I have also heard of trigger point injections with lidocaine.... has anyone tried this???

Any thoughts or help would be appreciated. 

Thanks!

[Jim Scott]

K2 ~

Hello and welcome.  As you can see from the other threads/posts in this section you are not alone with your headache issues.  I haven't had to deal with post-op headaches and cannot offer you any credible advice - but I'm sure our other members who are headache 'veterans' will.  I just wanted to acknowledge your post and let you know that, as our forums get back up to speed following a 3-day server 'crash' that took the ANA website offline, our members will be happy to try and help you in whatever way they can - because that's what we do here. 

Jim

[staypoz]

K2: 

As Jim said, this section is full of all sorts of help.  Have you seen a headache specialist or pain doctor yet?  I would highly recommend seeing one as your next step, if you haven't seen one already.  I would go into any appointment armed with a copy of the ANA booklet on headaches, and the article on headaches from a recent newsletter (I can't remember which one exactly), which excerpts information from the latest ANA symposium on headaches.  Most doctors aren't familiar with the kind of head pain that most of us suffer from and these publications can be useful to them.

Most of us have tried singly or together, several of the therapies you have already tried.  Each person responds differently, and it may take you some time to find something (or a couple of things) that help you. 

I also want to tell you that the headaches do change over time.  They decrease in intensity and frequency.  I am six and a half years out from my surgery, and although I still suffer from headaches, they are not as bad as they used to be.

Hang in there.  Be persistent.  There is relief to be found and a host of folks on this forum to offer support. 

staypoz     

[Captain Deb]

Unless your nerve block was done with a floroscope, they may have missed the nerve.  I suggest you try a pain clinic--they are more injection oriented.  In my experience headache clinics are more medication oriented.  Meds never worked for my particular headaches.  Do you get a lot of neck pain with them?  That's a big clue that you may have occipital neuralgia, which you can google to find out more.

Trigger point injections are very short term and are generally used diagnostically to pinpoint which nerves are firing and causing pain.

I have been doing Botox myself, which has been approved by the FDA for headache treatment so it will probably be covered by insurance, but you have to jump through lots of hoops to get approved.

My next step is an occipital nerve ablation--just waiting for the Botox to wear off and my headaches to come back so they know where to fry the nerves.

I've been dealing with this for 8 yrs--I had to get disability to get decent medical coverage.  If you can afford it, the Cleveland Clinic has an excellent pain management program.  I found a pretty good one only a 2 1/2 drive away.

There is a lot that can be done for these suckers, you just have to be pro-active.

Hugs,

Capt Deb

[k2]

thank you for the input.

I thought I saw some other replies a few days ago but didn't have time to respond.  Then my computer was down and then it looks like the ANA server was down.  I'm not sure what happened to those replies.  do they go away?

Most of my headaches start at where they went in for the surgery (retrosigmoid on left) and radiate up or over --in the occipital region(both sides). I now also have jaw pain too.  The DR said it is secondary bc all the muscles are continuing to tighten up.

I have seen a few neurologist and have gone to one pain clinic.  He did not use a fluoroscope though.  Just shot the needle up in whatever direction. 

My headaches have been changing but it seems like for the worse.  The muscles just seem to get tighter and tighter.

Most of the neurologists I have seen just keep giving me medications.  I did try bringing in an article one time and they didn't even look at it.  It was pretty frustrating. 

What do you guys do for sleeping?  I can't sleep...  I sleep for about 3-4hours wake up with a headache-sometimes a migraine and then try to fall back asleep.  This happens throughout the night.  Can't imagine living like this forever.

k2

[Captain Deb]

I take ambien every night and am also on Klonopin and Zoloft and I manage to get some sleep after all three of those before I go to bed.  Find another pain clinic--one that uses a floroscope.
Also Botox really may work for you--has your doc suggested it?  I had a whopping 18 hr migraine last night so I'm really up for the dorsal rizotomy or nerve ablation (basically the same thing)

Capt Deb

[Mei Mei]

My doctor this morning refused to use a flluroscope.

Mei  Mei       

[cin605]

I do not sleep well either...llorazepam does very little to help.....i have amnitryptline and i sleep like a baby w/ it but in the mourn it looks like i have been punched in both eyes...for some odd reason it swells under my eyes.
I do recomend the nerve ablation...its been a month or about 5 weeks and pain is gone from occiptal area...gone from side of neck..no bowling ball head....but if i get tired my head still feels shaky.
Its a long road but i am glad we are all walking hand in hand!

[Mei Mei]

Yes, we are walking hand in hand.   I like how you put that, Cindy.

Whatever you do, stay away from any medications.   If a doctor wants to start you on meds, skip that step.  They just really don't help.
At least that was my experience.

Mei Mei