_{feeling down with the constant pain}

Ive had a headache for 21 days now and it is really getting to me. this monday i am being referred to London hospital of neurology for a 2nd opinion. since i was diagnosed back in july with my first lumbar i have had a second LP in august and was on Diamox for 4 months with no improvement of symptoms.also the side effects where very bad for me i was happy to come off the diamox. My neurologist took me off the tablets which i had been off 4 nearly 4 months and i have roughly 14 days of headaches each month since April last year. this month i have had 21 and i feel so low and shattered i just don't want to get out of bed let alone be at work. I love work and once im there i find it helps take my mind of the pain a bit. i cancelled my 3rd LP which was due before xmas as my back pain is very bad from the previous. i really dont know what can be done next but just hope there is something that can relief this pain and my visual problems.

colleen

Colleen,
I am so sorry you are having a rough go of it. I can totally empathize with you as I have had Mr. Headache as a constant companion daily for nearly 3 and a half years. Chronic pain and illness can definitely get you down. I have tried for years to combat depression on my own. Last May I finally talked to my doctor about something that would help. I am now taking citalopram (generic for Celexa) and it has made a world of difference. I still get down once in a while, but the meds help be from getting too down. I use to have periods where I would cry for days, for no other reason than a show on tv made me sad. I t really does help to talk to someone about what is going on with you. have you considered talking to a counselor?

I hope that you can get the pain under control as well as get away from the blues. Please know that we are all thinking about you and praying for relief. Keep us posted.

Colleen I know how difficult it is , I myself take fluoxetine and have for many years, it is understandable that you would feel very low with the contant pain. I hope that soon you will be given adequate pain control and hopefully the Neurologist in Londo will be the answer to your prayers. We're all here for you.

Thank you both for your kind and supportive messages it means alot. I went to london for a second opinion and the neurologist is going try me on beta blockers. I don't know much about these but i am going to see my GP this week to find out what type and start taking them. he agreed it was good to avoid the 3rd lumbar puncture for now just whilst we try and calm the headaches other ways. i am trying to stay positive but often get upset and this week at work was not good as i have a new manager and had to tell him about what i have to deal with day to day it made me upset but i feel better now he knows and is supportive. thanks again

Colleen I'm so glad that your treatment is moving forward, and hopefully the beta blockers will help. I'm also pleased that your Manager is being supportive, which will be a big help and will also help your confidence. I know it us upsetting talking about IIH, but in time you will be able to do this with confidence, because it is only a part of you and not who you are. It can feel like a black cloud over you at work, but you can still do your job as well as always, you just have to tweak it here and there and do it a little differently, and that will come with time.

You know you are more than capable, and remind yourself you ARE still you, and that despite this condition you are able to function in the work place, just take a few deep breaths when you feel agitated, or less confident, if you can take a few minutes away from your work area to do that, and then go back and start over. This helped me when I was working, and it gave me time to clear my head, and go back with a fresh outlook on how I was going to do whatever it was I had to do.

We're always here for you, so don't hesistate when you need us or if you just want to vent .

Colleen, I know what a difference an understanding manager makes. They are usually willing to make the small changes needed to make the job easier, as well as allowing you to step back and take a few minutes to re focus yourself. Sometimes when things have been a little crazy and/or I'm in a lot of pain I take what I call my "minute in the meadow", I'm not sure if this is a memory of somewhere I've actually been or a creation of my mind, but taking a deep breath and imagining myself in this meadow surrounded by wildflowers. It's just a bit of peace that I can carry with me where ever I go. This is a meditation technique taught to me by my therapist. It really helps to talk with a professional as well as the great people here.

Hang in there and I hope treatments for pain start working soon!