When is enough enough?

[Nickittynic]

I am 4 months post op and still having daily headaches, which over the last month have actually gotten worse instead of better.

I had headaches for most of the year before surgery (my only preop symptom - I thought they were just stress headaches until they landed me in the ER and they did a CT/MRI), and survived on tylenol and coke (caffiene). After surgery I had a prescription for oxycodone 5mg, and took it every 4 hours with 1000mg tylenol for the first month, until I weaned myself off it. I still had headaches, but they were manageable. When I *still* had constant headaches at 12 weeks post-op, and tylenol didn't help, my ENT prescribed Motrin 800mg around the clock. It didn't help. In the last month things have gotten worse, and tylenol and motrin don't work. I've given in and taken the oxycodone a few times if for no other reason than to try to sleep it off for awhile. I've seen two neurosurgeons and they both say it's normal since I have no symptoms of a CSF leak.

When are headaches no longer normal? This morning the vice-grip feeling on my head had me in tears. I'm supposed to be finally returning to work tomorrow night, and can't be sitting around crying or taking oxycodone to sleep. What can I do and who should I talk to since no doctor (neurosurgeon or GP) seems to care?

[pjb]

Hi, sorry to hear of your headaches and cannot offer much hopefully someone else has a better answer for you I to have suffered daily headaches it will be 7 months soon and the surgeon's do not consider it a problem. My GP put me on vicodin helps a little but it is still constant and the morning hours are the worst saw some posts with different types of medications have to ask your doctor to prescribe something different for you.

Hoping you can find some relief.

Pat

[stevecms]

Hi nicky,so sorry to hear about those horrid headaches.Is there any way you can delay returning back to work.Please get back on to the doctors and dont give in.Not much help i know but my thoughts are with you.

[Jim Scott]

Nikki ~

I'm sorry to learn that your headaches are unrelenting, the intensity is increasing and they seem to be untouched by drugs.  Obviously, I can't tell you the cause of these headaches but AN surgery patients that have the retrosigmoid approach occasionally have complaints of headaches similar to what you're experiencing.  Sometimes this is caused by microscopic bits of bone dust getting into the skull while it's being drilled and settling on hyper-sensitive nerves.  Operating techniques have improved drastically in recent years and although I underwent retrosigmoid AN surgery, I didn't suffer any post-op headaches.  I had asked my neurosurgeon about the possibility of post-op headaches and he explained that his AN patients "didn't have post-op headaches" because he used a form of 'sticky tape' around the incision that 'caught' flying bone dust as he drilled into the skull and he added that he was 'fanatic' about using suction during the surgery.  His assurances were valid and I did not develop headaches following the surgery.   Sometimes your positioning on the OR table during the long surgery can generate headaches, as has occured with some of our other members.

I wish I could offer you a quick and easy solution to your headache problem but, unfortunately, I can't.  Returning to work under these conditions (debilitating headaches) may simply not be feasible.  You may need to consult a pain management physician to seek relief.  However you find it, I hope it comes soon.   

Jim

[ombrerose4]

I wish I had answers for you, but unfortunately I don't. We had surgery at about the same time (9/24/09 for me) and we seem to be going through some of the same things. I am also suffering from terrible headaches-1-2x'x a day. I live on Motrin and Excedrin, that's my cocktail. I got my neurotologist to send me for a cervical mri because even after getting Botox injections from him (I had relief for 1-2 weeks), the headaches came back. Mri shows lots of cervical misalignment that can cause the muscles to spasm and create headaches.  My doctor suggested accupuncture, but I decided to try a chiropractor first.I went to my  husband's chiropractor, who gave me a complete evaluation and he feels he can help me. On my second visit he manipulated my neck and that day I only had 1 mild headache. So I will try to be optimistic and hope this helps and if not maybe accupuncture or a headache specialist. I hope that maybe there is someway for you to delay going back to work until your headaches are under control. I cannot imagine having to work right now,( although I do go to school part time for nursing). Maybe you can try a chiropractor or an accupuncturist and see if that can help you. I feel your pain!

[bell]

Hi Nicki,
Sorry to hear of your headaches and I wish I could tell you they get better.  I  like many others have suffered for long periods of time.  Read the post on headaches and my Neurologists can not say exactly why but....
Go to Neurologist headache specialists, try physical therapy from the neurologist office, with massage and exercises.  Different drugs work for everyone, tylenol and oxy worked for me alittle, but.. for only so long then they got worse.
My neurologist said the best is Depakote and Tizidadine at night then another migraine drug when headache starts (imitrez, topomax...) neither worked for me 13 months later and now have botox in 2 weeks.
I think your symptoms are still early and they may get better, take oxy right away when you feel the tingling?  How is your stomach?  I have been on Omeprazole for a year!
Good luck and hopefully you have supportive people to work with because these headaches are like no others!!!!!!!!!!!The best of hugs and luck in figuring it out.
Belll

[Nickittynic]

Thanks all for your kind thoughts and suggestions! I wish I could postpone my return to work but at this point it's already been postponed a few months and due to all those issues I've been without income for two months. Disability's a  !

Jim - I wish I had your surgeon. Mine said pre-op that I would have a "1 in 3 chance of chronic migraines" after surgery. Like it's just some normal thing that's "oh well, too bad".

Ombrerose4 - A chiro is a good idea. I have one that I haven't been to since my daughter was born (went when I was pregnant for better baby positioning). My mom's been suggesting acupuncture, too. Maybe I'll try that combo.

As for today, a percocet and a 3 hour nap got it back into the 'tolerable' range. Wish me luck for my first night shift tomorrow!

[ombrerose4]

Good luck! We will all be hoping you have a headache free shift.

[Syl]

Nicki:

I started getting headaches 2 wks post-op. Every single night or early in the mornings, I would wake up w/ pain. Sometimes it was mild & other times it was debilitating. Finally after 10 months I went to a neurosurgeon who put me on Pamelor, which got me off Tylenol. Pamelor did help a great deal. I wasn't getting headaches every day, but they were still hitting me 3 or 4 times per week. After almost 1 year of taking pamelor, I decided to get off of it because I hadn't noticed any improvement in some months. That was about 3 weeks ago & so far, the headaches have not worsened.

Have you tried applying heat or ice to the neck? I use a heating pad, which helps a great deal.

Let us know if you try chropractic & if it helps.

Syl

[moe]

Hi Nicki,
So sorry to hear of your pain, especially knowing that you have to return to work as a nurse which we know is no easy ride in the park (maybe night shift isn't so bad).
Headaches are  the ONE thing I DON"T suffer from, thank God- I got too much other stuff on my plate. You had a whopper of a tumor, so it will just take a longer time to get back on track.

As I've said before,it is a part to full time job just taking care of ourselves after surgery.

Advice for the headaches?? Just gotta keep trying different things until you find something that DOES help. I've heard Lyrica,(also helps with sleep), neurontin, even elavil which as you know is an antidepressant too. Excedrin gives you that punch of caffeine/aspirin/tylenol which helps many, but then you don't want to overdo the aspirin. There is also aspirin free excedrin. Maybe "pop" an excedrin at the beginning of your shift.

My acupuncturist cured a woman of her many year history of headaches. She referred to it as "face pain." Never got relief with meds. The acupuncturist did his pulse analysis and told her she is experiencing migraines, which come across as head pain. (trigeminal nerve). He was correct! Her headaches were gone in a couple of weeks with acupuncture and chinese herbs.

I'm fortunate to live near this guy who works wonders, and he is in a small city (Poulsbo) in WA. My face is slowly improving- it just takes a long time.

I would recommend acupuncture (traditional chinese type that also treats with herbs). Sounds like $$$$ is tight and you may not be able to afford it- hopefully your insurance will give you at least a couple of visits to see if it works.

Hang in there- there is so much on your plate. I feel for you- a mom/nurse/wife dealing with all this.
Let us know how things progress.
Maureen

[staypoz]

Good luck on your first day back.  A lot of us have tried any number of things -- you just have to keep experimenting until you find something that will take the edge off.  Most of us with headaches do see some improvement as time passes, but it's hard to notice the improvement in the moment.  Drs. Francis and Tamargo were my surgeons also.  Dr. Francis was very helpful to me post op.  You can pm me if you'd like. 

staypoz

[yardtick]

Nicki,

I literally feel your pain.  I am off work on disability because of of headaches and facial pain.  I was suppose to start a gradual return to work program a week today, but there is just no way I am able to.  You have to see your doctor.  Try meds, try massages, try physio.  I am speaking from experience.  I ended up in a terrible place after I returned to work following surgery.  Even though I was taking medication, when I came home from work I  would totally withdraw from my family.  This went on for 19 months.  My husband and sons were very fearful for me.  It was a very frightening for all of us.

Be your own advocate.  Capt Deb has posted some informative links, read them, print them off and visit your doctor. 

Anne Marie

[Larry]

Nicki,

Sorry for your afliction. I had middle fossa 9 years ago and have chronic headaches every day. Most of the time its manageable (iguess I have got used to it in some way) but about 25% of the time, I feel like kicking the fence down. (don't like sayiong kicking the cat coz I'm an animal lover but also don't have a cat! Anyway, back to helping you with youir issue.

As for drugs, tylenol is a very low level pain reliever. The next level are the anti-inflamatories - the names are different in Oz to the U.S but Ibuprofen is one. Its a very commonly used one but a warning, these anti inflamatory drugs will cause stomach problems, its a will cause not a may cause. Taken over a long period of time, they will burn the linimng of your Osophegus and may cause an ulcer. This effect can be offset by taking zantac or losec but youi will be on those drugs for the rest of your life to protect your linings. They are harmless as my wife has been on it for ages..

Then you have the more serious drugs like lyrica or neurontin. I'm on neurontin and it does help a little (takes a lot of the edge off the headache). No noticable side effects and i've been on it for about 7 years now.

You also have the option of botox and nerve blockers and also further surgery.

Read up the various comments in the headache section. there is a lot of useful info there.

laz

[Mei Mei]

Dear Nicki,
I'm so sorry to hear of your headaches.   Did you go to that UMD neurosurgeon for help with the disability?   

Somewhere on one of these posts on headaches, but I don't know where I talked about going to a Physiatrist...a MD specializing in Physical Medicine.   She gave me a prescription for Topamax that worked wonders for my headaches and my sleep.  See if you can get a RX for this and if it helps you.  It really helps me.  I've been taking it for five years. 

Since the AN surgery on Jan 12 I have had headaches that are managed by Tylenol Extra Strength and a terrible pinched nerve in my neck.  My Primary Care gave me several samples of a patch on prescription that has Flexeril in it and I slap that on my neck ... that helps along with
Asper Cream.

I was waiting for my post op visit to get a clearance to go to the Accupuncturist.   I have the name of a great on in Rockville.   Where in Maryland do you live?   Is Rockville convenient for you?

Sincerely,
Mei Mei

[pjb]

So sorry to hear of your headaches I too am suffering from them along with severe tinnitus like you the doctor's just don't seem to care or want to understand post-op complications that arise from this surgery.  Hoping you can get someone to prescribe something that will work for you alot of people are saying that Topomax works.

Best Wishes,

Pat