Head and neck transplant!

[Captain Deb]

Now this is just peeing me off! I bother to spend the money to go to Philly to talk to Dr Stephen Silberstein to gather information from the best in the world on these danng headaches and what meds are the best to use to fight them. I bother to share this information with other patients who are bothering to log on to this site to get help. They take this info to their docs. Are their docs bothering to do this research? Are they talking to Dr Silberstein about how best to treat these AN post-op headaches that he sees alot of? Or at least bothering to read his published material.  Apparently not! Topamax is the first med he tries! I feel more informed about this very specific condition than some of the professionals I've talked to. I'm not saying that everyone that has post-op headaches should be on Topamax, but as a preventative it should at least be considered. My rant!

Capt Deb

[ppearl214]

*hands Capt'n mug o' grog, pats on shoulder*... It'll be ok, dear... there, there.....

[OMG16]

I guess I don't understand either.  When my son had the headaches post op nobody told us about the topamax either we just happened to receive it because he was hospitalized due to a seizure and he was having to many side affects from the first meds he tried.  We were thrilled that after 1 year of these headaches he started the topamax and within 1 month they were gone completely!  Maybe it was because he was a pediatric patient still.  Maybe it was because of all the brain damage done due to the stroke.  Maybe it was because his brain was so swollen.  He has aged out of childrens hospital so I can not ask them.  I guess I will never know.  All they could offer him was heavy duty pain medication which did not work as well as the topamax and caused problems with him being able to function in his rehab activities.  He could not take anti-inflamatoris or imitrex due to the blockage in his middle cerebral artery.  I was helpless in trying to find a medicine to help him.  I wish I had read more on this site back then.  Captain Deb all that I know now about headaches I have learned from you.  So keep posting you are helping me more than you will ever know!  Here I go singing again.........Tell me more, tell me more thanks to grease and Olivia Newton John.  16

[Captain Deb]

I just don't want Dani to go through the three years of hell I went through before I found the kind of help I needed. Even though I'm convinced that my headaches partially went away on their own at three years, had I known at 6 months what I know now, I know I would have benefitted from seeking help from the headache specialist I work with now (who would have put me on Topamax from the get go--the reason he didn't is because I had tried it before and couldn't tolerate the side effects--thank you Dr S for teaching me how to take it)

Pain clinics are great at dispensing narcotics--headache clinics don't do that--they focus on preventatives. At least that has been my experience.

Dani--ask your doc to refer you to a headache clinic, please! I travel 3 hrs to mine and it is worth it.

Capt Deb

[Captain Deb]

Dani!
I saw you had your surgery in Houston and look what I googled up!
http://www.houstonheadacheclinic.com/
Can your doc give you a referral there? Or do you even need one? Sounds like a state of the art place to me! Give them a call!

Capt Deb

[Larry]

Good on ya Deb,

Danni,

Sack your quack and don't ask him for advice, tell him what you want done. I have had too much quackery applied to me to be "totally in their hands". And for my cynical side, too many of them after after the $ first. Like a neuro i saw, he said, we have a number of options and try this fiirst. i asked him what the other options were and he said, lets see how the first one goes and then we'll discuss the others - yeah and $380 per visit later. No thx. $$$$$$ hungry.

Laz

[trhoads]

Dani,

I have not been on line much with the holidays, but I really understand what you are saying about the head and neck pain.  I had my surgery back on May 1st, and my surgeons still keep telling me to "give it time."  I can make it through work, but that is it!!  It takes everything I have just to recover to make it back to work--I'm unable to get anything done around the house.  So, I went to my family doctor, and complained about the neck and head pain and instead of getting information on a headache clinic, I was referred to a spine clinic.  But I think I will take the advice of others and push for a referral to a headache clinic (hopefully one that knows about headaches after AN surgery). 

I, too, worry about the effects of taking Motrin (usually about 400-600 mg 3-4 times daily), and that does not count when I also use Midrin and/or Excedrin Migraine.  I am worried that I will be like Captain Deb and go through years of this horrible pain. 

Good luck with your headaches!!

Tonya

[Static]

I am not going to the headache clinic I fought so hard to get an appointment for because of the $$$ issue as well.  Bottom line is..... the neuropsychologist I can't get around seeing first requires a payment of $425 up front and doesn't accept any insurances.  My personal choice has an out of network $300 deductible then pays 50% of anything over the 300 which means I put out 425 then get back 62.50, and each time they tell me I need to see him again, I have to find a way to come up with the $$ up front then get reimbursed half.  What part of, my income is limited because of my situation which is why I'm seeking treatment, don't they get?  Besides which I've been on the topamax for about a year now and I haven't really found any complete relief from these headaches.  I'm extremely glad for those people it is helping, but I need to look for another approach or just go on dealing with them like I have for the past 30 years because I am really just plain sick and tired of doctors at this point in my life!  Just like Laz says, try this first and come back in X days and pay me $$ and if that doesn't work we'll discuss the other options at that point.  No wonder so many people are addicted to pain meds.  It's really just easier! 
~Karen

[Captain Deb]

Tonya-
Be very careful with that motrin--it is ibuprophen, right? Advil is another name for it. I was taking it in large quantities for about a year  and ended up with a permanent stomach injury--a thickening of my stomach lining which has sent me to the ER with gastritis a few times and to the gastroenterologist many times. I can no longer even take 1 ibuprophen or other NSAID without severe stomach contractions and cramps and have to take an expensive med called Protonix when I get a flare up. I can't eat anything spicy, can't eat large quantites (a shame, cuz I love to pig out.) I thought I was being careful--not taking it on an empty stomach. It can also cause rebound headaches.

Get to the headache clinic first is my suggestion--the first thing they will do is get you off the motrin.

Capt Deb

[OMG16]

I did the same thing as Captain Deb with the motrin so you do have to be careful.  Is that the only medication that you were given?  I guess at this point all you can do is suffer?  That just sucks and all I can give you is kisses to your forehead.   :-*16

[trhoads]

Well, in addition to the Motrin (if the pain gets really bad), I also take Midrin (if I can nap) or Excedrin Migraine (if I need to stay awake.)  The doctors also gave me Percocet  and Valium for the neck spasms (which I cannot take when I work).  Luckily, I only work 3 nights/week.  Unfortunately they are 13 hour nights, so I spend 1 1/2 to 2 out of my 4 days off recovering from work.

Well, I went to the spine clinic yesterday, and got a referral to a headache/pain specialist.  So that appointment is Valentine's Day.  So hopefully I will get my meds changed around and start feeling better!!

Thanks everyone!!

Tonya

[OMG16]

Tonya what did the spine Dr say?  I will be waiting to hear back from you after Valentines day to see how that appt went.  Take care until then.  Kisses to your forehead.  16

[OMG16]

Has anyone heard from Dani?  I was just wondering if she is ok.  Thanks 16

[danijake]

I am so sorry!! I don't have internet at home. I went back to my house when I got Jacob back from my mom. I only get online once in awhile now. It was the Neurologist saying all this stuff. He also told me not to believe everything I read on "those online discussion forums". Kiss my...DOC!!! I think I will call my ins. co. and ask if I need a referral or if they even cover a headache clinic. Thanks for the link Deb. It sounds pretty good to me. I've been taking 4 Ibuprofen every 4-6 hours for 4 months. Okay, time to stop, I know. I'm on Neurontin every 8 hrs and Max-Alt when I have to go to work and I have a bad headache. Ibuprofen just really helps tone down the pounding. Thanks for all the huggles and kisses on the forehead! I'm okay, just "out of pocket". Gotta go. I just jumped on my babysitter's computer when I got off work. Got to take the kid home and feed him.

[OMG16]

Dani I am sorry that you have such an uncaring Neurologist.  I guess it is to much for him or her to say I don't know but let me find out for you.  I think they should stop and listen to their patients especially when so many of them have the same symptoms they can not and should not discount these headaches.  I am getting angrier by the minutes what arrogance.  I do not think I would go back there.  Your Neurologist feels the need to attack us so to speak that is just sad and maybe you can recommend sensitivity training if you ever see him or her.  Please let us know when you can what is happening.  !6