Bad one's lately

[OMG16]

Dani I just wanted to let you know I am thinking of you and wish you well.  I hope you headaches do get better and soon.  I to ruined my stomach with all the advil I took for the facial infection and can only take a little bit like one pill a week without having problems.  So I have to agree with Capt Deb on this one and do get something for your stomach and be very very careful.  Have you found anything that works to take care of your headaches at all?  I feel very badly for you.  Kisses to your forehead.  16

[danijake]

Wow, I totally flaked out for a few days and forgot about this thread. Thank you 16. And everyone else for the suggestions. I did go see my Dr and he is going to find a pain clinic that takes my ins.---Hopefully it will cover this.

I'm having some issues with the tinnitus the last two days. It's very loud and making my head hurt worse. The neurologist said it's probably my nerves regenerating from the surgeries

My scar goes all the way to my jawbone. I think my "chunk" was way in there! They had to cut muscle in my neck to get to it. OOOOWWWW.

I guess I'll try to sleep now. Have a big day ahead of me---as always.

Dani

[cecile k]

Hi danijake: I don't sign in here often, but thought to check. Noticed your post about terrible headaches. I've had such horrible headaches as well after my suboccipital procedure to remove the AN...prior to that I didn't really know what a headache was.  My surgery was Nov. 2001 and it took about three years before I noticed substantial improvement. I'm 6+ years post op now and truly can say that I feel so much better.... I tried the chiro route and think that this may have helped, but I stopped this now. I also went to a physiotherapist who specialized in headaches and she did wonders for me as well. I also tried acupuncture but this didn't help me - you could give that a try. I had also been at the point of getting a referral to a pain clinic. 

I remember being in the midst of those horrible headaches wondering if and when it would ever end - people in general just didn't understand but I had a very supportive hubby and extended family that helped me through this time.  My boys (I have five - then ages 4 - 14) didn't really understand my headache situation and kept on with their life and making noise! That is one thing that I found the most frustrating, actually. I truly hope that you have good support because you need it! With time, hopefully things will also improve for you. One thing that I do find helps me now is to get outside and go for a good walk - actually some headaches have disappeared when I walked.

Hang in there and hugs!

[danijake]

Thank you Cecile.

I was hoping the headaches were starting to go away. Since I've been going to the chiro they've been fewer and actually a few days I didn't have one for a while. Then the Tinnitus started getting louder and my headaches returned without mercy. I'm still seeing the chiro for my neck and back, but the tinnitus is getting in the way. He even suggested accupuncture. I don't have any money and i don't think Medicaid will pay for it.

Wow, you had 5 boys?! I had one(9 yrs) and it's like he turned into ten boys in the last year. He's been through a lot. I'm his life's blood. He'd be lost without me.

I will try the walking thing. But, I can't when it's bad. Every step feels like my head is gonna fall off.

Thanks for the post.

Dani

[cecile k]

Hi Dani:

I also deal with tinnitus....drove me absolutely crazy the first couple of years after surgery. Crowds and music (bands) are something I try stay away from even now. Now my tinnitus is just as it was after surgery but somehow I have been able to tune it out most times. Having to deal with those nasty headaches just makes everything else seem horrible too.

Just curious - when did your headaches start? I had absolutely NO headaches until three weeks after surgery - so strange!

As for my five boys - I did stay with my parents for about six weeks after coming from hospital. So I was away from home for two months. There is NO way I would have been able to handle the noise. I had enough trouble relearning to walk (balance). It was only when I could do stairs half decently that I came home. And even then, a good friend of ours took a couple of boys for two months during the times my hubby was working.

I only tell you this to encourage you - it WILL get better with time.

Cecile

[danijake]

Cecile,

We have something in common: my headaches started three weeks after surgery, too. And my mom kept my son for 4 months.

I had a "live in caretaker" for two weeks and after that person left, I started falling a lot. I fell once and cut my head opened, bled all over the place and don't remember it. I woke up in my bed with a sore spot on my head, blood on my pillow and by the front door. So, I had to stay with another friend for a couple of months until I could get my balance back to half-normal!

The tinnitus is very loud tonight. I can't sleep. I have a sound machine that may just come in handy. I'll go try it when I go to bed.

I believe it'll get better, but I am a big "weenie" when it comes to pain!
 

[cecile k]

I just found that so odd - headaches starting three weeks after surgery! How is your balance now? I just feel so much for you....hang in there! It's so easy to become discouraged - don't be afraid to ask your family/friends for help if you need it. I found that many people just don't understand - they seem to think one should just get over it and on with life... It would help to print off some responses from this site and hand it to family and friends.  Hugs.

[danijake]

My balance is okay until dusk. Then I look like a drunk.

My family doesn't understand, and I can see why...they haven't experienced this. And my printer is messed up!! Go figure

My sister thought I was on something the other day. That upset me like you wouldn't believe. I keep trying to explain it to her, but I guess she's so dingy that she forgets!!

Dani

[leapyrtwins]

My balance is okay until dusk. Then I look like a drunk.

Dani -

maybe I'm stating the obvious here, but it sounds like your balance issues are related to fatigue.  I haven't had balance issues on a regular basis since a few weeks post op, but I find that when I'm tired I have them big time.

Jan