ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: mk on August 23, 2008, 05:56:51 pm
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Yesterday I woke up with the worst headache I had experienced in my life. Normally I would be really scared, thinking that it was due to the AN. However, my daugher has been experiencing the same symptoms, i.e. she had been complaining about bad headaches and she also had a fever. This is obviously some viral infection that I caught as well.
Just wanted to drop this note, because this made me realize that not everything we experience is AN related, as we often tend to think (at least I do!) and there are often other causes for our symptoms.
By the way, does anyone know if having a fever (for unrelated reasons) affects adversely the way the AN responds?
Marianna
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Marianna,
My life since the discovery and surgery of my facial neuroma has been one big headache! Yesterday, day was the first day all week that I was headache free, mind you by about 10:00pm last night the headache was back. Today has been terrible. The weather really effects my head. Another nasty storm rolled in again around 1:00 pm.
I have battled migraines since I was 12 or 13 years old, but this is much worse. My face down along my jaw line aches, my neck hurts and the killer is the stabbing pain that shoots behind my eye. I've been on different types of meds but nothing really seems to help me. If I do get relief than I have side effects from the meds.
For me battling the headaches has been the worse thing about my journey. I'm in the watch and wait group and that also just adds to my stress. I wish the headache fairy would work her magic on all of us who suffer. I feel your pain.
I wish you the best and if you find siomething that helps please let me know.
Anne Marie
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Iv`e been getting headaches myself lately. They come on with an Aura first then a mild dull headache and stiffness. I was wondering if the AN has had anything to do with its cause? Could it be allergy related? I only wish I had the answer. Any opinions would be appreciated. Thanks Mickey P.S. I did meet someone at a AN meeting who said his headaches went away after surgery.
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They come on with an Aura first then a mild dull headache and stiffness.
Mickey, that is a classic symptom of migraine. I get the visual effect, but luckily no headache afterward. Taking headache pills at the first sign of the visual effect is supposed to help, I believe.
Steve
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Mickey~
I had HORRIBLE headaches most of my life and then when I had my AN removed - wha-la, they went away. I was 25 and that was almost 13 years ago. I didn't get on this forum until January or February of this year & was VERY shocked to find out that was not the case for everyone with an AN. I just thought that was what was causing the headaches (which it was) and since it was gone, so were the headaches!
I'm so sorry you have to deal with them.
K
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Thaks for responses! With all the symptoms and discomforts I`m constantly weighing my options. I`ve had symptoms so long I am kinda use to them. Basicly with hearing good and tinitus manageable was trying to determin if headaches are in the same mix. When you put it all together my main determination is if after operation will I be better off? Tumor still relitively small 12mmX06 with my 3rd MRI coming up in 15 days. So far last one stable. If I knew that I could get rid of them all I wouldn`t hesitate to operate! Thanks Mickey
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Wikipedia search "Trigeminal neuralgia", need to read up on this, I think it is assosicatated with most migraine's suffer's. the 5th crainal nerve is responsible for ALL facial sensors including the teeth, when it fires you feel it down in you teeth. I have the same headache pattern. unbearable pain behind my right eye and goes down into my jaw and teeth and then across my forhead. there's post on the second page if you don't want to search it. You be suprised what you find out. I was.
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I have battled migraines since I was 12 or 13 years old, but this is much worse. My face down along my jaw line aches, my neck hurts and the killer is the stabbing pain that shoots behind my eye. I've been on different types of meds but nothing really seems to help me. If I do get relief than I have side effects from the meds.
For me battling the headaches has been the worse thing about my journey. I'm in the watch and wait group and that also just adds to my stress. I wish the headache fairy would work her magic on all of us who suffer. I feel your pain.
Anne Marie
Anne Marie,
This is probably posted somewhere, but why did you decide to wait and watch?
Kate
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Hi Kate,
I have a facial neuroma and it was debulked two years ago. I will need a nerve graft. My last MRI was on Father's Day. It was difficult to read because the mastoid cells were fluid filled, so they weren't able to get an accurate measurement of the tumour. You know there are no guarantees with a nerve graft, so I decided to watch and wait. I'm not a candidate for radiation.
I think this is interesting. I've been off work since April and today I had lunch with a co-worker. She could visually see the left side my face is swollen, droopier and my left eye is more buggier. She was the only one at work that had any compassion when I'd have to go home because of headaches or facial pain.
Anne Marie
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Don't know if this means anything, but I have a history of migraines that have pretty much been under control for many years. In the past week I have had two bad migraines. Perhaps not related to AN, but they are nasty things. Last night I thought I might have to go to the ER with this one. I have only been once to the ER in the past 12 years with a migraine. I don't feel great today, but I am waiting it out. In my case, I think it is stress probably related to worrying about my AN. For what it's worth....Nancy
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I too am suffering through yet another severe headache. After 5-6 days of feeling great and productive, yesterday it hit. Pain meds....no help. The fulness....jaw pain....balance almost non-existant....body/joint pain causes me great frustration. I've tried yoga....sitting by the fire...quietly & still....laying down....no reading/TV....definitly not driving or undue moving about the house and more. Meditation/relaxation helpful but not alleviating pressure/pain..........what's a gal to do????? Anybody got ideas to help???
Judy
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I had been a headache sufferer for years but didn't know they were migraines till I went to my PCP for them and that "stuffy ear" and found out I had an AN. Unfortunately my headaches didn't go away after surgery but kicked into overdrive. Or super overdrive. I was basically bedridden for 2 1/2 years until I found injectable Imitrex, and a double dose of preventives--Neurontin and Topamax. And both of those leave me dumb as a box of rocks. So don't think for a minute that surgery will be an automatic migraine "fix" for everyone with AN related headaches. Research your options with radiosurgery,too. I sure wish hindsight was an option now but it ain't!! Just being honest!!
Capt Deb
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I had CK 4 years ago and my strong issues other than vertigo/balance/hearing loss (6 months after) didn't appear until about a year and a half ago. This headache/pressure thing is really annoying and makes my usually positive attitude.....GONE! Whenever I try to make a list of my issues it gets sooooooo long I delete it. When family....friends....Dr's don't get it..........I get nuts! Do they think I just make up all this??? I have always been very active.....positive.....grateful heart and so on. Having to pass this way is more than I can take sometimes. Without this site and all the understanding I would surely perish. It's so helpful and encouraging...........Thanks everybody.....I am truly grateful for your help and honesty.
Judy
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I just want to give you headache sufferers a great huge hug.
((((((((((((((((((((((((((headache sufferers))))))))))))))))))))))))))))
I too belong to the Headache Sufferers Club. I don't know if mine are migraines. They can be debilitating, accompanied by nausea and vomiting, but they rarely last more than an hour. After the headache has gone, I'm left feeling really drained. They usually hit me in the morining and make for slow starting days. Luckily I work in the evening. However, that's going to change soon. As of April 1, I will be working days. I hope my punctuality isn't affected by these headaches.
Syl
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I HATE HEADACHES!!!!!!! (JUST HAD A FOUR DAY HEADACHE LAST WEEK) >:(
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This is my third day :'( :'( :'( this week ???
Anne Marie
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Iam on day 4 of massive headach.got so bad went to primary care on Thurs.MY booldpressure went up my temp down & i was sweating really bad.Not driven in a week balance & vision far off,My incision is swollen.arghh.
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Hi,
Many years ago I also had migraines, but I'm convinced that it went away because I started to take fish oil pills. I take three a day at breakfast and my migraines haven't showed up since then. It probably took about 2-3 months until I noticed that the migraines showed up more and more seldom. Under a period of time I thought that the fish oil pills were too expensive to buy so I stopped, but after a few months the migraines returned and now I never think about stopping taking my pills.
Maybe this could be worth trying. The fish oil pills can't harm you anyway! :)
Good luck!
Helene in Sweden
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I hate headache too. I get then daily still and I am on 2 migraine headaches med and two others headache med just to function on a daily bases. I am truly sick of it. >:( I thank God everyday thou for my wife and kids and another day to spend with them.
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Roger,
Could you share with us what headache meds you are on, the doses and how often you take them? Were they prescribed by you surgeon, GP or what? Just like to keep track of what others take for headaches.
Capt Deb
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Hi Deb,
Sure I'll share;
Frova 2.5mg for Migraine
Namenda 10mg
New one: Lyrica 75mg - for scare tissue pain
Dichloral Phen/Isomethep/APAP for Migraine as well. I take this one if I don't catch the onset of the migriane early.
Topiramate 25mg
I cannot seem to get the under control yet. I keep hoping soon they will be.
Roger
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I have been battling with a nasty headache since Friday evening. Last night and early this morning was unbearable. I couldn't sleep. My face is also hurting pretty badly. Oh well I see the neurologist April 7. I hope she can help me :'(
Anne Marie
PS Roger thanks for sharing your drug regiment.
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I have two day headache free! Yeah!! ;D But, Ive been very tired and take two to three naps a day wheather I want too or not. :(
I am not sure anymore whats the AN or the meds. Does, anyone else have this problem?
Also, I would like to ask how you deal with the headaches and work?
Roger
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Hi Roger,
I live in Canada so our employment laws are a little bit different. I have been off work on long term disability (LTD) for almost a year. I did work for a good 18 months after surgery and it was very difficult. The retired GM was very understanding, my fellow employees gave me a hard time. I would go to work and everyone knew how much I was suffering. Than the GM retired and along came this young buck in his mid 30's who had absolutely no compassion at all. I almost had a nervous break down this time last year. I went to my family doctor a complete mess, and he wrote me a note. He had a lot of insurance papers to fill out, and I qualified for LTD. My next step is to apply for Canada Pension Disability 6 months prior to my LTD runs out.
Anne Marie
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Hi, I'm Ada, living in Florida. Had my surgery in NY 5 years ago. Very lucky...Just lost all hearing in right ear. Last year had BAHA implant with excellent results. Highly recommed it.
I am very frustrated as most of us are. Tired of complaining. Some days I am great but others I wake up with this terrible pressure on my right temple shooting into my right eye. The fatigue sets in and I must sleep with a heating pad for atleast 2 hours. ii can manage my vertigo most days. But I continually have pressure from my cheek bone to the top on my head everyday. I can only explain it to the doctors as the right side of my face and eye don't belong to me. It is a strange feeling. I have tried everything. The last 2 months my right eye has started tearing. A new MRI shows nothing, the Eye specialist sees nothing. Today they sent me for a Caroted artery test and an echo cardiogram. They don't know what to do. They are reaching.
Does anyone have similar symtoms. I am tired on feeling this way. I just want to start feeling better. I think people are thinking I am making this up. Thank goodness my Husband and children believe me.
HELP!
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I missed my medicine schedule up and now I have a killer headache. It all just so madding!
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This has been a terrible week for me also. All of the fast moving weather systems has played havoc on my head. Tuesday I woke up not feeling well at all, my head was pounding. I lasted until 4:00 in the afternoon and I had to go to bed. I got up around 9:00 pm ate some scrambled eggs and was back to bed at 11:00 pm. Slept through the night, thankfully. Yesterday my head, felt like the novocaine was wearing off and aching dully. Today my face is aching, from my cheek bone up behind my eye. I've been experiencing really sharp stabs of intense pain above my ear and shooting into my brain.
Everyone out there experiencing headaches and facial pain, tomorrow is another day!
Anne Marie
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Ann Marie I've been pouring over the board for info and you definitely stand out. You have a great attitude despite a very difficult situation. I made up my mind no matter how bad it got there was going to be no pity parties or despair. Once you let that in you are in trouble. I don't know where you get the strength. Most mere mortals would have lost their mind by now. I hope someday you'll get to the bottom of this and life will be normal for you. I'm praying for you and others on the board.
This has been a tremendous resource for me. I thank all the people that have opened their lives up to us newbies so we can gain the info needed to treat our condition. I've been in the bushes reading & taking notes. I feel like I've come to know some of you and find myself pulling for you all. The stories detailing the symptoms, treatment options and drugs has been invaluable. I especially admire those who have gotten their challenges under control and continue to monitor and post replies for people who need help. I hope to do the same in return someday. I don't expect my surgeon to know it all. I'm going in Monday loaded for Bear w/treatment options drug options etc.
Knowledge reduces anxiety. Once I get the answers I need I'll feel much better about my journey. I know what you're going thru is tough. I'm pulling/praying for you. I know this board is an outlet and resource for you and others, thank God for the internet. I hope someday you'll figure all this out. Keep up the attitude you are an inspiration. Joe
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Joe,
You have me blushing ::)......I am a "mere mortal" my husband will attest to that! Oh Joe I do have my pity parties, than I pick myself up and brush myself off. I'm a lousy poker player, you can see every emotion on my face. My husband can always tell when the storm is coming. Louie has very broad shoulder for me to cry on and he has strong wonderful arms to hold and give me strength. I have a good support system with Louie, our sons, friends and a few family members. The forum has been amazing amout of strength for me.
I thank you for your kind words. I will be thinking of you on Monday.
Anne Marie
PS You know Joe, my attitude has gotten me into a lot of trouble over the years. Now my attitude is an inspiration!! LOL.......I'd love for a certain gentleman GM to read your kind words ;) Thank you OX
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My not so silent partner who has a controlling 51% interest in our company has cut me no slack. I was told I would not be paid until I returned to work which was 5 weeks part time and then full time in six. God bless him he was bluffing he paid me anyway. But.....we grew at a paltry 1% last year after 40% the year before and you'd think his world was crumbling around us.
I went thru an ugly divorce the good year which spilled over into last year. I had a one month reprieve and then I got the diagnosis in April 30 days after my last court date w/the ex. Everyone around me was saying hey you're at rock bottom its only up from here after the divorce. Well no........ it can get worse.......... much worse and boy did it. So the point is, my not so silent partner is pissing and moaning about 1% growth while I'm going through all this. In his eyes there was no excuse. Bottom line, business is motivated by self interest. There is no sympathy whatsoever. If you're dragging down the ship you're history. Survival of the fittest. My attitude was so my numbers slipped but I'm the one who got you here in the first place. That didn't matter one bit. There was no long term vision no goodwill accumulated only............. what have you done for me lately. I was shocked at the indifference. There were no warm fuzzies coming my way and I was totally taken aback.
Well I'm back in the saddle and ramping up those long hours and building it like my life/job depended on it. Yet I get an earful that Jan and Feb's numbers were way down. Da we're in a recession hello!!! Well we made up for a lot of it in March so I hope we are trending upward once again but we shall see.
Anyway the only ones who really care are your family and friends. Business is a cold hearted dog eat dog culture. I guess its all about the bottom line which was hard to swallow. I thought hey these are my friends certainly they'll cut me some slack? The only slack I'm getting is in the rope they're giving me to hang myself. My outlook has totally changed and maybe it did need a wake up call. I'm working hard because I'm feeling well enough to. If I felt like you do I'd be gone in a NY minute. That’s the harsh reality.....it sucks.
You are entitled to pity parties with what you are going through.... we all have them. I'm glad you have a great support system so do I. My friends and family have been unbelievable. One of the things I did was reach out and ask for help which made a huge difference. Most want to help but don't know what to do. I clarified it for them and they came thru when I needed the most. Hang in there I’ll pray you find some peace.
You are an inspiration whether you know it or not to us and I'm sure the people around you. We have an idea of what you are going through and you are a trooper. Joe