Severe Headaches...

[AshleeMUC]

Hi everyone.  My name is Ashlee and I am 21 years old.  I had AN surgery on March 30, 2004 my tumor was 2.5cm. I found out about the tumor when i went to the doctors for my mild headaches and hearing loss in my right ear.  My surgery was 12 hours long and i was in ICU for 2 days and the hospital for a little over a week.  I was not prepared for what was to come after the surgery.  I experienced dizziness, balance problems, facial paralysis, brain swelling, hearing loss and severe headaches. I have 3-4 severe headaches everyday! I have tried medication after medication, therapy, nerve blocks, stem..you name it...ive tried it! Nothing has helped me relieve my headaches except Advil...i take atleast 12 advil a day which is not very good. My headaches inable me from living a normal life.  I used to be an extremely active... I love working out, playing volleyball (Mount Union College)...but my headaches are so bad that i cant do these things anymore.  Ive tried many of times to go running and play volleyball but i cant. I get headaches no matter what i am doing...i can be watching tv, laying in my bed, reading, sitting in class and ill get a headache! I just want it to stop! If anyone has the same problem as i do...will you please let me know if you have found anything that has helped you! Thank you!
~Ashlee

[Russ]

Hi Ashlee
  Have you checked back with the NS or ENT? You may have a CSF, Cerebral Spinal Fluid, leak. Any nasal discharge, especially when bending over? Try the 'val salva' manuever, pinch nose, hold mouth shut, and attempt blowing while you do this. A seepage then might indicate a CSF leak.
  Do take care!   -Russ

[Static]

Ashlee,
I had my surgery in January of 2004 then a CSF leak repaired in May of 2004.  I am still getting headaches and have tried tons of things as well.  I am going for my 6 month MRI next week then to see the neurosurgeon in June and am going to ask him again about the headaches and tinnitus, which I think is part of my headache problem.  If I find out anything new, I'll let you know.  I have read somewhere about in a certain procedure which is used to remove the AN, if there is bone dust it can cause major headaches.  I think it may have been retrosigmoid.  Maybe you can ask your surgeon about that.  I did, but he told me it wasn't that 

[Goldineye]

Hi I also get bad headaches . I had my AN removed 1 year ago April 7 th. Some days are so bad and others are mild. I take something every day also. When I was in the hospital the gave me celabrex.  It was the best for the headaches. I took it every day and felt like a new person. But they pulled it off the shelves and I just take advil or tylenol. I take it as soon as I get the first sighn of a headache. As soon as you feel the tension or weirdness of a headache coming on take 2 advil or tylenol and a large cup of coffee. It seems to work for me. Also my sisterinlaw takes excedrin  headache and swears by it . We have been through so much and now we have to suffer with these headaches. Go figure.Another thing you  might want to try are relaxation tapes.They seem to help too. Good Luck and God Bless!       

[karen52]

Have you tried Fe-or-a-cet or fe-or-a-null?  My sister had brain surgery without Feoracet would have to be getting shots of demoral.  I took Feoracet for about 12 years for migraines.  Stay-dolll  is more extreme.  It is a nose spray.  I found it to be very hard to judge a good dose for me.  That stuff scared me..it's way up there with the barbs.

Feoracet has  barbiturate in it too but the dose is easier to regulate; I feel.  Feoranol has less  barbiturate and some codeine added.  Some people can't take codeine.  Actually Feoracet may be a tad better anyway.

 
I hate to see a young person take any "drugs" but if that is all you can do then so be it  Talk to your doctor and see what he thinks.

All the the drug names I used are phenetically spelled

I empathise.  My best best to you dear.

[karen52]

I forgot to say that the feoracet and feoranol have cafeine and tylenol in them.  I was told that the cafeine was to constrict the swollen  blood vessels, the tylenol to thin the blood and  the  barbiturate is to rid the pain from the swollen vessels.

It would be good to try caffeine 1st. I now take Vivrin (1//2 tab, it's caffeine only)  With the headaches I used to get, the vessels would swell so quickly that the brusing would have already occured before I could take any constricting med.

Like I said though, if nothing else works, talk to your doctor about the meds that I mentioned.

Again, my best to you

[Kathleen_Mc]

I believe the drugs that karen52 is referring to are Fiorinal (which comes in "plain", "1/4", and "1/2" depending on the amount of narcotic in the capsule and Percocet or Percodan depending on if it is based on acetaminophen or a.s.a. (I think). The problem with using these such drugs is the headaches you are having may be of a long term nature and eventually your tolerance will build and they will no longer be effective. You need to first confirm the cause ....if it is indeed the way it is to be for you now (no csf leak, tumor regrowth) other drugs that are helpful in preventing migraine headaches can be useful in our cases and you don't get a tolerance to them in the same sense (mostly certain antidepressants in very small doses are used.) Talk to you doctors about 1st cause and 2nd treatment. Over the past 14 years I have found the only truely helpful thing has been to try to sleep, stay in the dark but these solutions do not work for "life"....they have become less frequelently a problem but when I get them WOW they knock me for a loop. (I did find one of the antidepressants helpful but was unable to tolerate it done to having low blood pressure)> Take care, Kathleen

[steph]

I also get one really bad headache everyday starting around 3pm and going until whenever, sometimes an hour sometimes all night, has anyone ever had blurred vision from their headaches? I had this happen the other day for the first time, ct scan came out fine, they are thinking migraines. Has this happened to anyone? Also has anyone tried physical therapy as a resolution?

[karen52]

I called the pharmacy today to the spellings of the two headache meds so that I could paste info for you and so that interested folks can look up these meds themselves

Fiorcet is  a mixture of Butalbita (byoo-TAL-bi-tal), a  sedative and  a non-aspirin ( a-seat-a-MIN-oh-fen) , caffeine (KAF-een).  It is used to treat tension headachess .  Butalbital is a. barbiturate (bar-BI-tyoo-rates)that  acts in the central nervous system (CNS) to produce irs effects.

Fiorinal  is a mixture of  Butaltal, non-aspirin, and caffeine.  It  can be written with codeine added..

I take it that Butalbital  and Butaltal are basically same just a slighty different  barbiturate

Both of these are common migraine meds.  For migraine folks who have horrible vasccular brusing, it's great stuff.  Like I said, my headaches come on more slowly now and I can usually just take 25 to 50 mg of caffeine to constrict the vessels before they bruise too badly. 

Once one learns his bodies reaction to the med, he can work or drive as usual. unlike  percocet or percodan.  I was a full time university student during  a few of my migraine yeaarrrs.  I never had physical or emotional withdraws even after 120 a month for 12 years.  If taken as prescribed you ahould have not doppie feelings the caffeine perhaps off set she small amount of  barbiturat in the medication.

Kathie, my sister,  is being given Fiorcet post AN op..so it is used for headaches other than migrain..

 Whenever one needs more than 2 at a time every 4 to 6 hours, they use something very much stronger than fiorcet or fiornal.   Kathie told me tonight that the dr is still  giveing her 2 every 6 hour throut  a 24 hour period even with her leak. The medicine only takes the edge off somewha off.  He refuses to give her anything stronger.  PERHAPS HE DOESN'T WANT A STRONGER MED THAT MAY ADD TO HER BALANCE ISSUES  WHICH A STRONGER MED MAY CAUSE .

He intends that she keep this same doseage at home. I took those meds for 12 years - 120 month annd experienced  no withdraw cold turkey.  If Steph is prescribed this med, he will work closely with her and when the time comes, he nay have her reduce slowly.

Talk to the doc see what he finds.  Thsi med is just an option to consider. He may also say to try caffeine 1st, or who knows, he will probably know best.


luck, luck, to you

karen52

[steph]

thank you so much for the info, I will be seeing my surgeon soon and will discuss it with him.

[lthompson]

Hi, I have a girlfriend who has a brain aneurysm and suffers from severe headaches.   She was referred to a headache clinic in Philadelphia, PA and recently went through a new procedure their to releave her headaches.  I don't know where you live or how close you are to Philadelphia, but if you are interested let me know and I can get you the exact name and phone number of the facility. 

[LBM]

Hi Ashlee,
My name is Lauren and I am 30 years old and a resident in psychiatry. I had a 3 cm AN surgical removed on April 27th 2005 at Cornell Hospital in NYC. I felt badly for you when I read your story because I too know what it is like to have bad headaches. My only presenting symptom was headaches. I had them for years and over time they got worse and more frequent. I was seeing a neurologist for three years and he never ordered me an MRI. He had me on different medications and just thought I had migraines. I knew something wasn't right when they became daily. It was so hard to go to work every day and see patients when I had a headache every day. It was disrupting my life. So the end of March I decided to see a headache specialist at Cornell. She asked me when my last MRI was and I told her I never had one. She ordered one and then I got the surprise of my life. A 3 cm AN on the left. It needed to be operated on and it was pressing on my brainstem. I was so scared. The surgeons told me I would be in the hospital less than a week. Well I was in the ICU for 5 days and in the hospital for 22. I was there so long because I had SO much pain I thought I would die. I couldn't sit up, I couldn't do anything. The pain wouldn't stop and no medications they gave me worked. I was so afraid it would never go away. It got somewhat better and they sent me home. I stayed out of work until July 1st. The pain did get better and the only thing that helped was time. Every morning I wake up with a pretty bad headache and take some advil and use a heating pad and have to go back to sleep for it to go away. I am seeing a new neurologist now and he has me on some medications for pain.I don't think they are working well enough and am seeing him next week. It upsets me because for years before the surgery when I didn't even know I had an AN I suffered from daily headaches and now after the surgery I still have them. However, I am so grateful every single day that they go away and are no where near the degree they were in the hospital. I can't even compare them. But I understand what it is like to have so much pain in your head and I really hope you find relief somehow. I truly do! My surgeons were unable to remove the entire tumor. They got most of it but a small part is on the 7th nerve. I need another MRI in September to see if it grows. I did lose my hearing in my left ear and have tinnitus but every day I feel lucky to be alive. I hope you find relief and I just wanted you to know that there is someone out there that understands your pain. I wish you well.
Sincerely,
Lauren

[Kathleen_Mc]

Lauren: your story sounds so much like mine, I started with headaches that became massive over the 4 years I was misdiagnosed...the neurologist I had seen hadn't done a c.a.t. or m.r.i. (actually at that time I don't think that was around here in Canada yet) and unknown to me he dx psychosomatic in his note to me g.p. I was in nursing school....I guess that's supposed to make one nuts?  By the time I was finally dx. I was taking Fiorinal c1/2 and mogadon 10 Qhs and the Fiorinal Qam before work, as the intermittant facial numbness went from intermittant to permant I mentioned it to the g.p., got to see another neuro. who throught I had m.s. and ordered an m.r.i., a.n. was found I am unsure of measurements...surgery occured as soon as able....15 hours, translab, I lost the 7,8,9 and 10th nerves. As a doctor can you explain how a neurlogist could come to the conclusion someone presenting with headaches, insomnia, intermittant facial numbness was psychosomatic without doing a c.a.t. scan, tests done were eeg,evoke potentials? I've always wondered what a u.s. doctor would say, the non-neurologists I work with (doctors) all agree he was neglegent, my neurologists I'm seen since don't comment and those who have when I say "would you say that on the stand?" all shut up. I have no intention of suing the man, can't be bothered now and heck now he's 70, hopefully he'll be dead soon.....he actually lost his licience for a period of time for something else but now has it back. Anyway just wondered. Kathleen

[cookiesecond]

Lauren,
Where did your head hurt? I feel a lot of pressure on the back of my head. the neurologist said he thought I am having migraines( i don't think so) The neurotologist said it could be from the AN. I had an accident in September and the ortho doctor thinks it could be from my neck/back because it is out of line. I just wish I knew where they are coming from.
Lynn

[LBM]

Hi Kathleen,
Thanks so much for writing. I am so sorry you had to go through so much as we all did. I believe the neurologist I was seeing for three years did not take me seriously. He knew I was a resident in psychiatry and maybe heard what I was saying but not "listening" to me. I now know the difference between hearing someone and listening to them. I hope as a young doctor I will always listen to my patients. Anyway, I think he thought I had psychosomatic complaints. It is not fair. A lot of male doctors in my opionion do not take the complaints of women seriously, especially those that are not seen. He really did not believe I needed imaging studies as he insisted over and over again I had migraines based on nothing. I am angry with myself for trusting him for so long. He is a well respected neurologist at the hospital I am training at. I am not a neurologist and really put my faith in his abilities. He made a mistake. It is unfortunate but going through medical school and training I see it every day. I was lucky I found a neurologist who did listen to me and ordered an MRI. People have asked me why I stayed with him for so long, I should have know better but I do not think that is fair. I was the patient not the doctor. Multiple lawyers that I know think that this is a case of medical malpractice. He deviated from the standard of care. when a patient complains over three years of  worsening headaches that fail to respond to multiple medications, I believe a resonable neurologist would broaden the differential and order an MRI. You sound very brave and have had to overcome many obstacles and I say hats off to you.
Lauren