I'm a mess

[Roger64]

It's almost one year from my surgery and I am a mess. I balance is still way off my mind is still swiss cheesed and migraine are just a daily thing now. Actual I am on 6 different medication to prevent the migraine and headaches. SSD and the ringing that still occur bugs me. The forgetfulness I am losing short block of time and finding it very hard to wake up in the morning.  Or doing thing around the house still taking lot of naps. I feel  like like crap 99% of the time.

[cin605]

I'm w/ ya Rog!

[Janet]

What medications are you on?

[nancyann]

Hi Roger:  I'm so sorry you get the migraines/headaches,  I can't imagine having to deal with this.  I do hope whatever meds you're on are helping you.   As far as balance, I found the more I moved the better it got.  I had tinnitus for at least 25 years before I knew I had an AN, so I guess I just got use to it.  It is still constant,  but I have learned to pretty much ignore/accept it & don't let it bother me - I know it's always going to be there (it is loud - like right now !, but like I said, I just go about my business).
Also, with the mind/memory, it helped me to just try & focus on 1 thing at a time, little by little it gets better.  When I 1st went back to work 2 months post op,
I remember crying because I couldn't keep up the pace like I did pre-op (+ dealing with the facial paralysis/eye issues).  But, again,  little by little it got better.  I'm  a little over 3 years post op.
Oh,  the fatigue is something, isn't it ?  Take walks,  even if you're feeling tired,  the more active you are,  the easier it gets.
This DOES take time, we're all different in recovery,  you have to be your own 'physical trainer' of sorts.
Hang in there,  Always good thoughts,  Nancy

[Roger64]

Med's
Topamax
Topiramate
Dichloralphen
Nsaid 500mg
Lyrica
Namenya

Personal trainer will not help when most of these med side effect are drowsiness.

[nancyann]

Roger:  Since I only had severe headaches daily for about 1 month post op, I'm not up on what others have tried - but look into posts on Headaches b/c I think there are some forumites who have written about new treatments for headaches.
Best wishes,  Nancy

[epc1970]

Hi Roger
I more than understand your stuggle: I am 14 months post op and for the first 6 to 9 months, I struggled with fatigue and headaches. I finally got so sick and tired of well, feeling sick and tired that I aggressivley sought out solutions. I decided that this was not going to beat me! Finally, through a combonation of cranial sacral therapy, OMT and medication (tramadol) when the pain was acute, I started to find some relief. The other key for me as Nancy suggested was to force myself to get moving and start exercising again. Even on days when I want to crawl in bed a take a nap, I force myself to a least take a walk. I usually end up feeling better: My head always feels clearer and I have more energy. I do always give myself one day a week to do nothing and recharge my batteries. I have noticed that as my body gets stronger from the exercise, I feel mentally stronger. I still have tough days but the good days far outnumber the tough ones now. Of course, everyone is different and I am sure you will find the things that work for you-Good Luck!

[Janet]

Hi Roger,

It sure is a battle to find the right relief from these horrible headaches!

I am a little confused with your medications.

Topamax and Topiramate are the same medication.  Could you be double dosing?

What are Dichloraphen and Namenya?  Is it Namenda?

[LisaP]

Hi Roger,

How about your diet? Are you eating ok, and the right food items? Is your primary care doctor helping you through this?  I have not had treatment yet, still W&W but do have daily symptoms.

Keep in touch and let us know how you are doing.  I feel terrible for you.  Where did you have your surgery and what kind?  Have you been in touch with them?

LisaP

[CHD63]

Roger .....

So sorry you are continuing to deal with horrible headaches!  Have you explored going to a pain clinic?  As you well know, severe pain affects every aspect of one's physical well-being.  As Lisa said, sometimes diet plays a very important role in pain management ..... which a good pain clinic should be able to evaluate as well.

I pray you will find the right combination of treatment to relieve these headaches.

Clarice

[Jim Scott]

Roger ~

I'm sorry to learn of your AN post-op travails.  Although I don't have anything substantive to add to the previous posts, I will keep you in prayer and offer the hope that you'll find a solution and a way to alleviate the headaches, dizziness and suffering you're now enduring.

Jim

[moe]

Roger,
So sorry to hear about everything. My heart aches for you I know how you feel in many regards.

The AN journey as we call  it can be trying, frustrating, depressing.
It's the new you and time to be proactive in your new "life."
Hope the other suggestions have helped.
Can't help with the headache bit but can understand some of the other issues.
I have ringing, SSD, facial issues, sometimes the foggy brain. I require at least 7-8 hours of sleep a night, with a nap in the day.
Other than that I just keep moving.....might be hard to do with the headaches for you.
I avoid loud situations the best I can and avoid people I don't like! Walking, balance exercises (WII fit yoga/balance is great) also help.
Hang in there, let us know what the doc says with all the meds. Are you working?
Maureen

[kma]

Roger:

I'm sorry you're having a hard time of it.  I understand and have been there myself.

I know it's hard but I really recommend massage therapy ~ I went to my local hospital and they had theraputic massage ~ the therapists there understood the surgery and it helped me in a huge way get rid of my daily headache.  I can't recommed that enough.  It was hugely important in my healing.  I also went for physical therapy and it covered my balance problems and other issues I was having after surgery.  Again ~ it was HUGE.  My doctore did NOT recommend it and I had to insist on it and made them write an Rx for it.  Made a huge difference for me. 

Keeping you in my thoughts.

Kathy

[yardtick]

Roger,

I'm a mess more times than not.  I suffer from brutal headaches and facial pain.  My left shoulder now is a problem.  I discovered through a physiotherapy assessment the left side of my body is weaker than the right.  I'm told it is because of the way I hold my body when I'm in pain.  I am very tense on the left and after three years of  H E L L  it has taken an over all toll on my body. 

I walk like a drunken solider, especially in the dark and the snow.  Wonky head most days and fatigue still plagues me.  I too take a lot of drugs and I can tell you I tried to wean myself off of them last year and it was disastrous.  I've been on disability for 16 months and now the insurance company is trying to rehabilitate me so I can return to work.  My benefits coordinator admits the likelihood of me returning to work full time is slim.  My physio therapist said he will be able to help me relax so I can cope more with my shoulder pain, but he doesn't think he will be able to do anything about my headaches or facial pain because that is an internal medical problem.  He will also help me strengthen my left side. 

There are quite a few of us on here who have had a rough time.  Without the support from this forum and the understanding of my family and friends I think I would be in the looney bin right now.  Hang in there my friend, because I do feel your pain.

Anne Marie