Author Topic: Started to get headaches about 4 months ago  (Read 4742 times)

cheza

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Started to get headaches about 4 months ago
« on: January 14, 2009, 02:59:47 pm »


.....and to be honest I thought it was just me, I used to suffer migraine when I was in my teens and suffered quite painful headaches in the couple of years that lead up to my diagnosis, so for me having a headache is fairly run of mill stuff, but there is a big difference with these I do have the niggling all day everyday headache, which, I have now just got used too, but then on some days the pain is just horrible it starts around my forehead on the left AN side and before I know it its right around the eye socket, all I want to do is close my eye (which I can't do because of the facial paralysis) lye in  a dark room and fall to sleep, it leaves me feeling very lethargic I don't want to do anything, I don't want to eat because it makes me feel sick, the last time It started it took 3 weeks to go and I can feel it coming on again.

Also I have noticed that I seem to be grinding my teeth and clenching my jaw which I have never ever done before.

I just wanted to know if anyone else’s symptoms are the same and what have you done about it, how your doctors have treated it.


Thanks Cheryl XxX   :-*
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

cheza

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Re: Started to get headaches about 4 months ago
« Reply #1 on: January 24, 2009, 11:26:18 am »

Update on last post,

The headache I had went a couple of days later and I felt great but it hasn't lasted long, I have spent the best part of today lay on the sofa with my head in my hands I've taken pain killers, but its still there, problem with the pain killers is that they are quite strong and I just feel spaced out so either way I'm no use to anyone.

I just want to feel normal again.

Please tell me I will, i want to cry but I won't let myself because it just makes my headache even worse.

Thanks for listening/reading

Cheryl XxX  :'(
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

chocolatetruffle

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Re: Started to get headaches about 4 months ago
« Reply #2 on: January 24, 2009, 05:14:36 pm »
hello cheryl
sorry to hear about your headaches, i was in the same situation as you - my migranes used to be unbearable and my head gets so tight that i just cant do any normal activities.  The pain would also move behind my eye socket. I used to have one each week! I dont take any medication, so the only way i dealt with it is sleeping it off, taking a hot shower with a therapeutic shower gel and using therapeutic heating pad around my neck/shoulders.  However, after my surgery, the headaches were gone, i am not sure if the tumor is causing it but it looks like it.  anyway, there are threads in this forum on how people deal with headaches - i think the famous homemade solution is the ice-bowl  :)
home based solutions are good, but if the pain is unbearable, talk to your doctors. It could be an underlying issue which you do not want to overlook. Hope this helps and hang in there!!!
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

JudyT

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Re: Started to get headaches about 4 months ago
« Reply #3 on: January 25, 2009, 09:02:19 am »
Hi Cheryl............you sound like me......I do relate to your dilema. You just find yourself in such pain where nothing seems to help. I get impatient.....snappy with my beloved grandchildren....no tolerance for much of anything that annoys me..(the list gets longer) and it's so unlike me. I hope you find relief soon as I hope for myself too.
Judy

Syl

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Re: Started to get headaches about 4 months ago
« Reply #4 on: February 14, 2009, 12:19:16 pm »
Cheryl:

My headaches seem to be a bit different than yours, but I understand your pain. I'm currently getting treatment for my chronic post-surgery headaches. My headaches can be debilitating, but usually Tylenol and a heating pad on the back of my neck help take care of them. I'm trying to get off Tylenol because sooner or later it's going to kill my liver and kidneys. Some of my headaches might be from what has turned into dependence on Tylenol.

I'm 3 weeks into my Palmelor treatment and am getting some relief. I'm supposed to increase the dosage each week until I get off Tylenol completely. This week I was afraid to up the Palmelor dose because last week it came with some very unpleasant side-effects. I'm taking 325-650mgs of Tylenol each day. That's down from 2000mg+.

Do you ever use a hot or ice pad?

Please see your dr about the headaches, especially if meds don't work for you. I can't imagine having pain all day long.

Hang in there, but please, please go see a dr.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

cheza

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Re: Started to get headaches about 4 months ago
« Reply #5 on: February 16, 2009, 09:26:02 am »



Hi and thank you for your response's,

Just to update you I went to see my doctor, he has prescribed me something called imigran, that probably won't help you because our meds are named differently to yours, but basically its stops migraine and you only need to take one each time you get the tell tale signs that you have a migraine starting and then you shouldn't need another until the next time you get the feeling again, (in my case once a week) I think these tablets must be quite expensive because the doctor can only prescribe 6 at any one time.

Well I'll give them a go, fingers crossed they'll work :)

I'll keep updating to let you know.

Thanks Cheryl XxX  :-*
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

Captain Deb

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Re: Started to get headaches about 4 months ago
« Reply #6 on: February 16, 2009, 06:03:42 pm »
Cheryl,
Sounds like you got Imitrex which is a triptan and works pretty good if you don't wait too late to take it.  The problem is people like us who have these a couple of times a week need to be on preventives like neurontin or topamax or others out there.I use both of these drugs in my battle with the Headache Monster.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

cheza

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Re: Started to get headaches about 4 months ago
« Reply #7 on: February 17, 2009, 10:07:33 am »


Hello Cpt Deb,

I know what you mean about the preventatives, unfortunately with our NHS system there is an awful lot of red tape and proccedures, so rather than going for what would seem the most logical solutiion isn't always possible, there is always a long line of different things to try first before you get to what you want.

When ever I mention things to the doctors that I have looked into on the internet (isn't google a wonderfull thing) the doctor always says "well we'll thhis first"  maybe he thinks I'm trying to tell him his job, this really isn't the case, I just know my body!

I do wish sometimes I could just walk in to the dcotors tell him what I want and for him to say "ok lets try your theory" although if that did ever happen I'd probably faint...lol

Thanks again to you all

Cheryl XxX  :-*
diagnosed 4th Oct 07 with a 3cm left acoustic neuroma,
surgery 9th Nov 07, age 30 at time of surgery,
total hearing loss to left ear, grade 6 facial palsay (getting better)
latest MRI shows regrowth on facial nerve.

Captain Deb

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Re: Started to get headaches about 4 months ago
« Reply #8 on: February 17, 2009, 04:19:51 pm »
I'll tell you Cheryl the only reason I got to "boss" my doc around and tell him what meds I wanted is thanks to the ANA. At the symposium in Pyladelphia I got to speak one on one with Dr Silberstien who is a world reknown headache specialist, regarding these post AN surgery headaches and he strongly recommended I try Topamax and told me how to take it with minimal side effects.  When I told my headache specialist I had met him, he knew exacly who Dr Silberstien was and knew of his excellent reputation so my doc was willing to do just about anything Dr S recommended to help me. Today I very rarely have to take a pain med and can do things that I thought were lost forever to me like going sailing or hiking.  Granted I'm a little limited yet in the exertion department something is better than nothing, right?

Dr Silberstiens headache workshop is available in CD for $10 from the ANA--click on the logo in the upper right of this page.  Maybe your doc would be willing to listen to it! I've always been of the mind that the squeaky wheel gets the grease so squeak LOUD!

Besides you can only take a triptan so many times per week safely.
Good luck

Capt Deb P)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW