Aim,

I was right there with you just a couple days ago. Day after day of feeling like crud can really weigh you down emotionally.

You probably should slow down a lot. If you cant afford to quit, then cut back on your hours and focus on you. Celebrate the little victories...like I woke up this morning feeling decent. Only lasted a few hours, but it was something.

The way Im looking at having to deal with this disease: if they can figure out how to prevent/fix this thing, through "practice" on me, then maybe my kids & grandkids won't have to deal with it someday. It keeps me going.

Hang in there.

Blessings,
Nina

Thank you Nina, the headache has quieted to mild gnawing. I was in tears when I wrote this and I am sorry that I broke down. You are correct my hubby and I talked and I am going to try to full fill my commitment that I have made and then it will be time to let it go for now. I have a shift tomorrow scheduled, and two shifts next week; then one in August. 12 hours on my feet with no way to have a break if it gets busy is no way to work. It's one thing to go 6 to 8 hours without a break but 12 is too long.

I appreciate you helping me and writing back. It really did help. Thank you and blessings, Aim

No apologies necessary...my pleasure.

Nina

hey Aim,

dont apologize for venting, it is a healthy thing to do! if you keep everything bottled up then one day you will explode, far better to let everything out here where we all understand and know exactly where you are coming from and are happy to listen and help if we can!

I do think 12 hrs is too long for a healthy person let alone for a person struggling with difficult conditions, so i am glad you are looking at it. can they let you do reduced hours to help with the finances rather then just dropping shifts entirely? sometimes things dont seem likely but you never know until you ask.

I know what a rollercoaster IIH is. i know the frustration. hoping this will work, hoping that will work, the bitter disappointment when it doesnt and you are still in pain. it took me 7 months after diagnosis to find my equilibrium (that doesnt include the year of pain before diagnosis!). and many people take longer. i only say that to let you know that the road is often long but together we can get there. I know its hard and that you feel terrible, but keep working forward, and looking to the next solution, you will get there.

Best of luck for your sleep study!

Keren

thank you :) I am off to work and I will be talking to someone about the two shifts next week. They are both night shifts back to back and there is no way after doing one this week and having such horrible symptoms that I could do 2. Blessings, Aim

Aim: Thinking about you and sending all good luck. Hope you can get those 2 shifts reduced/moved around to better accommodate. Am just so sorry that you're hit so hard right now and that the "no steroid" plan hasn't helped yet.

Is there any way you could try for an Intermittent FMLA arrangement with your work? Maybe that would "buy" you enough time to have the sleep study and get better treatment plan that would allow you to work at a reduced scale but not jeopardize your job? Just wondering out loud.

Am sending all the positive, healing thoughts I can muster your way dear. Please let us know how you're doing and know that you've got a bunch of friends here. Take good care! :)

Aim,

I understand and I'm so sorry for where life has tossed you right now. Day after day it wears away at you until it feels like all there is left is pain. Know it's always okay to vent about how you feel and how life is affecting you. It's one of the reasons we're in here together. It just might make you feel better.

I agree about pursuing FMLA (Family Medical Leave Act) time, if you qualify. Some time off to get your health figured out would be great. Here's a website with the rules and benefits:
http://www.dol.gov/whd/fmla/

It's so important to not let things get so bad before you back off on activities. If you notice your symptoms are escalating, that's the time to stop and go to bed, if you can. At least for me, sometimes it doesn't get as bad that way.

Be wise taking the painkillers. All of my doctors say that painkillers of any kind, Tylenol to Oxycodone, taken more than 2 days a week can cause rebound headaches. Rebound headaches can be worse than the original headaches themselves. Ask your neuro about it and see what his opinion is. It half kills me to stick to the 2 days a week rule, but so far I'm doing it.

so you heard that 2 day a week rule to Sea?

my new Neuro just came out with it and i thought she was crazy - none of my other doctors have ever done anything that strict before. lucky that my head isnt as bad as it used or be or i would have laughed in her face.

I have been off pain killers for a month now (cause my neuro made me go cold turkey claiming i probably had rebound headaches as my IIH was "cured") and i havent noticed any difference in my headaches (but lucky i am mostly stable, bar increased blood pressure headaches, periods and storms) - i guess its the long game we are thinking about with that rule but i would really like to see some of them try IIH on 2 painkiller days a week.

Sorry Aim to interrupt your thread!

Thank you ladies :) I am in the medical field and work in the hospital. Where I work I am the only respiratory therapist on for the whole 12 hour shift. I work what is PRN status. I just cover vacations....which totally shocks people where I work that I don't have a full time job. I used to work full time days when I lived in Indiana but I had friends and support there to help with my children....here I don't so working that much would not work for our family. My husband travels for his job also which makes things tricky. (FMLA not an option)

As for pain killers I come from the philosophy that you have pain for a reason and masking it is not a good thing. So the most I have ever done is 400 mg of ibuprofen and the last dose was in May....so no problems there. I have been using ice packs, dark rooms, rest and staying hydrated....but I did call and get zofran yesterday to help with the nausea which is by far the next worse symptom right now. The tingling of the hands, feet, legs, face and neck are in the back seat for now.

Tuesday is the night of my sleep study....I can't wait. I was also able to have someone cover me for one of the night shifts. So I am working now just one night instead of two. Which I hope will help me out.

blessings to all and thank you for responding....I am hoping today will be a great day :D Aim

Sorry it's tough right now, but so glad to read that you are working on a plan for cutting back. 12 hour night shifts is demanding far more than your body has to give right now. I won't restate all the wisdom everyone already shared, but hope getting a different plan for work will help you lots!

My doctor called me at home today and we talked for about 20 minutes. He thinks that I am having migraines on top of the IIH (even though the paps has resolved?) So I am now on 625mg of Diamox twice a day with (the dreaded) topamax at 25mg at night....and a muscle relaxer if I need it. His office has called me everyday this week and then having him call me today....all I can say is wow. Wonderful group of people I have on my side plus all of you. I am very grateful. I am hoping this will help fix the headaches....blessings, Aim

we all react differently to meds but most people dont get the bad reactions to topamax until much higher doses - around 200g and it goes up to 400g per day. i am on 100g per day and i dont notice any cognitive problems... see how you go. remember it also reduces CSF so it should help the IIH too.

as for migraines, just be careful - they could well be a factor, but they are a very convenient explanation for any headache symptom that the doctor cant immediately explain easily so i am always a little weary that a migraine Dx stops them chasing the 'real' problem. but i am biased from the misdiagnosis i had at the start of my IIH journey. i spent a long time trying to get rid of the 'migraine' Dx to get my IIH treated properly.

Anyway i am happy on my diamox topamax combo so see how you get on with it. good luck :)