I had a fabulous career in dialysis and traveled the country for two yrs before i settled down and now i have been out of work for 2 yrs. My boss did not even beleive me that i was sick even when my neurologist called the job and.told her that i need to get to the hospital immediatly. I can barley get out of bed some days so i dont even know how i can even work period. Thank god i had long term disability with my job because i have been getting paid since i have been out. I have been trying to get SSD because of my Back injury, this and other conditions but this is harsh i know

I lost my job a year and a half ago. I have been getting unemployment. I am trying to get a job. The facts are no one wants to hire a 54 year old women. I wish I could find out if I could work now or not. I can not work a job that I have to stand up I know that but I do know computers. I was a licensed insurance agent for 15 years. In the last year I let my License expire big mistake. So please if you have a job and are getting older do anything you can to keep it.

Not now. It's been 6 mos on, 3-4 mos off for 4 yrs now - but I was dealing with shunt issues, not a DX of IH. Getting worse. My org is very supportive & I'm beyond lucky. They put a couch in my office so I could lie down. But it's the 24/7 cognitive, vomiting, fatigue + HAs that are killing me. I, too, was on the road a lot; that plus in-office = 70-75 hours/week. I'm lucky if I can get in 10 hrs/week telecommuting now. I'm not eligible for Short-Term until 6/1, and then LTD 9/1. Am negotiating May as we speak.

When I was still in the office/working usual, I'd find 15 minutes at a time & ID places where I could lie down. I'd map out "vomit" locations, and blame my "spaciness" on seasonal allergy meds. It's horrible to try and fake it. I am so sorry that you've got a demon boss. I think the anxiety of job retention is a HORRIBLE part of chronic illness. Not to mention having a chronic that's nearly impossible to explain to the "lay" people.

Do you have STD/LTD available? And, do you know if your shunt is patent if HAs getting worse? Sending good thoughts.

Yes, my shunt is adjustable and I am planning to make an appointment with NS. I'm just afraid if I get it turned down and then it is too far, then damage might be done, then where am I. My company does have short and long term disability but if I go out of work again, I'm sure they will find a reason not to let me come back. I'm 55 so getting another job at my level would be impossible.

I've been really sad about this the last week. I made the decision to give up my job and go on disability for at least awhile longer. I can't afford it, but I think it's the way it has to be for now. Between the headaches which would make my attendance horrible, the weird brain stuff (seizures, hallucinations, and lately memory issues, confusion, etc., etc., etc.) I'd get fired within a week.

CGO: YES, always in fear of the HR vendetta re disability leave. I'm 51 and also empathize with the age bias dynamic, & increasing "unhireable" label. This just blows. One thing I've started to do is prospect clients that I might be able to fold into a contract-based income stream. Doesn't help with benefits, but might keep foot in door if I can manage some work down the road.

Good luck w/ NS appt; I'm found regular adjustments to be just "part of it" every few weeks. Can you easily get CTs to follow adjustments to get idea of vent size? I'm very much over-scanned, but find it stupid-simple way to get faster re-calibrations.

I'm still working full-time right now, but for how long, who knows. May need to use some FMLA as needed. They won't be happy about it, that I can guarantee. But I work for the Federal gov't, and am a union member, so I know what to do if it gets really bad...

I don't have long-term or short-term disability and have already had to use a lot of leave in the past couple of months dealing with this. I can't take too much more leave without pay and still be able to keep my family afloat. So I plan to struggle through until hopefully I'm able to get my LP shunt replaced...

I own a small business (15 years now) that has employees that depend on me to sell projects and keep work rolling in. If I stop, everything I've worked for these years is gone and I just can't let that happen. Some days are easier than others, but I don't know how long I'll be able to do it.

Yes I work full time plus some extra PRN hours at the hospital. But before the shunt I could only manage 20-30 hours a week.

I am new to the disease and I am working full time. I love my job and will do pretty much anything to keep it, so I hope things don't get so bad that I have to consider giving it up. I am working on lightening my evening workload a bit to make things less stressful for me.

When I was diagnosed, I was a state employee (in MO), after my second surgery, I was informed by their HR department that I had a deadline to be back at work or they would accept my lack of return as a "resignation in good standing". So , I lost my job. I was unemployed from March 2009--September 2009. I found a different job and was only employed with them for two months when I suffered a shunt malfunction and lost my job again.

I was well for nearly a full year when I accepted my current position. My boss is super understanding, and I am currently planning on adjusting my work schedule to accommodate doctor's appointments, etc. I do work 40 hours as a substance abuse counselor and love my job. I have quite a bit of flexibility and so far it is working with my difficulties.

I was diagnossed 7 months ago and have worked full time since. Don't see any reason on why I can't. My headaches dont get that bad and can be taken care of with tylenol when I do get them.

I was diagnosed in June 2009 an lost my job a few weeks later because I missed to much time being in the hospital not know what was wrong with me. I do not have a shunt. I am not working I have a hard time just doing things around the house. I cant do much before I get in to much pain an then I cant see much. I am on disability. I have been on Since July 2010. It took a year for my to get on it though at first. its not much but I live at home with my mom an my brother an grandmom live here also so they bring in income aswell.

I work full time right now. A lot of days are brutal as I work in retail and I have to engage people all the time. That's really difficult when the HAs are really bad. I don't have anything to combat them as only narcotics have worked so far on curbing the bad ones. I still end up with my regular daily HAs though that I have to fight off everyday. Its hard but I don't have any choice.

I have continued to work full time since diagnosis. I'm a marketing executive and have a pretty stressful job at times. Luckily, the diamox manages my symptoms really well. However, I do definitely feel worse when I am tired and stressed out. When I'm starting to feel bad, I have to recognize it and try to take care of myself. I've noticed, for me personally that lack of sleep and stress are the biggest contributors to me having a "flare-up".

I've also realized (again for me personally) that I feel worse when I am not an active person. Sometimes when I'm feeling bad, the worse thing for me to do is lay around. It makes me feel ten times worse and I also tend to spiral down into depression. (BTW, I'm not saying that if you don't work that means you lay around all the time.)