Headaches and Taste - please help

[deboline]

It has been eight months since my AN Surgery and I am beginning to feel desperate for help. I can not find a doctor to help with my follow up care. I have been sent to so many and it is becoming a waste of time and energy.  Although I understand the headaches now, and realize that it may be something that I just have to get through - does anyone have any suggestions of how to cope. I am at the point of several headaches a day and anywhere from 2-5 a week that are unbearable.  The pain is unbearable and I come to a total shut down. The time to recover once the headache goes away is hours, I am exhausted.
Also, I am still experiencing a terrible metallic taste (almost like a dishsoap taste) in the back of my mouth. I have excessive drainage that nauseates me at night when I try to sleep. I have lost over 50lbs to date since the surgery and I am sick feeling all the time. I find it odd that there is not a medication that can help with this. One doctor had me taking Benedryl every four hours to try and dry my mouth out - I had to stop in a matter of days, I couldn't keep my eyes open and did not notice much of a difference.
Any suggestions are appreciated, I am at my breaking point.

[russ]

Hi
  Have you been in contact with the ENT/Neurosurgeon who did your surgery? This doesn't sound good to me or really very normal for recovery.
  You may have a CSF, Cerebral Spinal Fluid , leak. Those can cause nasty headaches and fluid discharge; Esp. from the nose. I believe it is a salty taste. They do make a test strip for this.
  I trust the weight loss is from not eating?
  Whatever; it seems to me this belongs to the original surgeon, SOON!!
  Best not let this go on, okay?
  Russ

[deboline]

Thanks for the reply, I have spoken to all of my doctors more than several time. It took the Neurosurgeon three months to even acknolege that I am having headaches. I was referred to a pain management center. I have been checked for a fluid leak, nothing found. I also have had several mri''s - post op. Nothing medically wrong, just the rare post op side affects of severe acoustic headaches. I am told by the ENT that the taste is a sign of the facial nerve trying to heal and the only option is to cut the nerve if I can not put up with the taste and drainage. Yes, the weight loss is from eating habits - however, the drainage makes me sick to my stomach, especailly at night, so I try not to eat after lunchtime or so. This also has lead to dental and GI concerns. I currently use the protein shakes to help with nutrition.
My main concern is I am beginning to wonder if there will be any relief. I am looking to anyone for help.
Thanks again.

[heyyouconnie]

Well, I am no expert, but I know from watching TV there is a migrane medicine out there. It sounds like you have migranes. I know that Vitamin E or Fish Oil taken in tablet form can help relieve migranes. For the dripping in the throat, I use to use Claritin D at night before my surgery. I don't have dripping anymore. For my allergies my doc gave me Rhino Cort which is a nasal spray I use every night and I don't have any dripping or allergies anymore.

I would definatly demand that my surgerical doc saw me if nothing else. They should be happy to help with recovery and follow ups. If you don't get good responce I would notify some board of something and one: report that doc and two: to find someone who will help.

I have to say that my surgery was on Mar 1 and I really don't have headaches or the taste you experience. I do have a running nose after I get done doing something physical, like vacuuming or cleaning the house. I have an appt to see my doc for that. I have the droopy face too. I hate that. But pain, I don't experience any real pain. I am very sorry you do and can't find the best doc to help you out with that.

[sonshine]

debonline,

After reading your letter I have some advice to try, it may be a long shot but I hope it may help!

Doctors do not seem to know just how bad these hedaches are, but I do know first hand and it is terrible!  Most people think that when AN patient's have headaches, it is your tipical headaches all people get.  AN headaches are in a class of their own!  I wish now I would have described my headaches as HEAD PAIN!  Because people don't really seem to understand just how bad the pain is, not even the doctors!

So here is something I do still after 3 years when my head starts in.  Go to your local health food store and buy yourself a bottle of pure peppermint oil, it cost about $5 to $6. a bottle.  Take a Q-tip and drip peppermint oil on it real well.  Then dap your head where your head aches really well.  Don't get it near your eyes.  In a short while you should notice you headache gradually improving.  And a kind of cooling feeling, it feels good.  It is not a cure all but it takes dealing with the pain a whole lot better.  Of course you will smell like a candy cane  but who care sif it helps!   A lot better than the expensive drugs and what they do to your stomach.

Another thing that I would want to know is if you scar very badly after being cut or after any surgery?  I had asked my doctor this before surgery, because I do.  I was afraid it may cause me problems inside my head.  He said he had never had problems before.  Well .....he has now!  He went back in and found a real mess with scar tissue from removing, my tumor.  He said he had never seen anything like it before out of 2000 patients.  He spent a lot of time removing it and even put teflon around the nerve to protect it from happening again.  I still had the AN headaches all over again for about a year, they are much better now, occassionally if I do too much, they come back but nothing like they used to be.

As far as the draining down the back of your throat, I would advise you to sleep sitting up.  I know it is better to sleep lying flat but I have slept this way for 3 years just because of the headaches.  Went and bought a nice comfortable leather recliner, I believe sleeping this way willl help you.

As far as the unsual taste in your mouth, many, after AN surgery have this.  Some longer than others, mine was for about 6 months.  Be patient, I don't think it will be for a life time, but it will be what it will be, and it could be years, but I believe eventually it will go away on its own.  Unfortunately time is not always our friend, just take it one day at a time.  It should improve someday.  Hope this helps.  Been there, done that!

[jan pentecost]

The last time I saw my doctor, I told him of my headaces...told him what didn't work. He asked me if I would try...Elavil...usually given for depression, anxiety, etc. But it has been found to help headaches. I tried it and it works....for me. I usually get my headaches at night....but sometimes during the day. I am almot 8 weeks post-op. During the day, the Elavil doesn't make me sleepy....and that may not be the case for others. I am not taking it as much as my headaches seem to be subsiding....for now.
Just a FYI...
jan

[jeannie]

I am nine months out of surgery and I am just this week starting to have headaches that feel just like they did pre-surgery. I am going to see my otolarnyngologist tomorrow, will see what he says.
Also, has anyone heard of a temporary weight that is glued to the eyelid (or taped)?

[jan pentecost]

It is a narrow gold bar that they actually insert into your upper eyelid to give it some weight to facilitate closing of the upper eyelid. I am going to have this procedure in the next couple months.
Opps, the boss just told me to get off the puter and go home.....he is also my significant other.
I'll write more later....
jan

[Goldineye]

Regarding the Gold weight for the eye, I have one. It is a 24kt gold weight that is sized and put into the eye lid to help the eye close. I was left totally paralyzed from my surgery 1 year ago in April. I was in the hospital for 2 weeks and the day before going home the put that in my eyelid and they also lifted the under part of the eye so when my face started drooping the eye would be somewhat protected. I do get eye infections still and have to see an opthamologest. At one point they were so bad I was in the office every other day to see how the eye was. So yes the weight does help especially for appearance reasons. My eye was left wide open I looked horrable, scarry to say the least. My face drooped so bad I couldn't see my top left side of my lip. I looked like a strokevictom.I have come a long way . My face has some tone looks pretty good at rest. But still paralyzed . If you need any more info on gold weight let me know. Good Luck   Goldineye  ...Now you know how I came up with my sc name  lol

[Goldineye]

Regarding the Gold weight for the eye, I have one. It is a 24kt gold weight that is sized and put into the eye lid to help the eye close. I was left totally paralyzed from my surgery 1 year ago in April. I was in the hospital for 2 weeks and the day before going home the put that in my eyelid and they also lifted the under part of the eye so when my face started drooping the eye would be somewhat protected. I do get eye infections still and have to see an opthamologest. At one point they were so bad I was in the office every other day to see how the eye was. So yes the weight does help especially for appearance reasons. My eye was left wide open I looked horrable, scarry to say the least. My face drooped so bad I couldn't see my top left side of my lip. I looked like a strokevictom.I have come a long way . My face has some tone looks pretty good at rest. But still paralyzed . If you need any more info on gold weight let me know. Good Luck   Goldineye  ...Now you know how I came up with my sc name  lol

[steph]

I just wanted to say thanks to sonshine, I tried the peppermint oil and it really helps!! I put it on the back of my neck where I get the pain and I can't believe what a diffence it makes, n ot a cure all but a huge difference. thanks for your suggestions!

[sonshine]

Hi All,

First of all Steph, You made my day, I am so glad that you had good luck with the peppermint!  I would like to add that when my headaches were really bad and I felt like I needed an extra kick to help with the peppermint, I would take about two to three tylenol at the same time, and that seemed to be an extra help!  For me anyway, hopefully this may help others!  Remember to sleep with your head up, that is very important too, for headaches!  Good Luck All!

God Bless!

sonshine

P.S.  I always have an extra bottle peppermint with me in case of a flareup (headache)  I keep it in my purse or in my car and extra q-tips.  When using the peppermint I really dab it on heavy where my pain is.

[steph]

Hi sonshine, what a great name for you have helped bring some sunshine back into my life. Given my success with the peppermint i have been following your suggestions closely, the peppermint is in my purse and the tylenol and it really has helped. i recently started acupuncture as well, I feel like myself again. if anyone else is reading this please try it, it works. thanks again.

[Goldineye]

Hi Sunshine, I also would like to try the pepperment for my headaches. But exactly how much do you put on your forehead? And is that the only placce you put it or if the head hurts in the back of the head , do you put it there?. Also do you dab it on or drop it on? Thanks. Goldineye

[steph]

hi goldeneye, I put it on all the way up the back of my neck to where the skull meets, this is where my headaches are the worst, and it helps there, I just put a few drops on my finger and rub it in, it burns a little like an icy hot, but it feels great!