MAV and Working Full time

Specific Illnesses & Conditions VM/MAV
1

Hi everyone,

How many people out there are able to keep a full-time job with MAV? I work 8-10 hours a day, 5X a week and am exhausted when I come home after a long day at work. Are a lot of folks out on permanent or temporary disability?

I have been able to get temporary disability when my symptoms have been particularly bad, but the Short Term Disability company would never pay for the time off. Just curious how other folks are coping with working a full time job while having this debilitating condition.

Hope everyone is doing well!
Liz

1 Like
2

Hi Liz,

I’m working full time with this and it’s not easy that’s for sure. I spend a lot of time “faking” it. Most mornings when I wake I just want to lie there and not move. There are days when I’ve been so dizzy or headachy that I have slipped off to the board room, turned off the lights and lied flat on my back for 30 minutes to rest. On other days, valium saves the day.

Good on you for sticking it out and soldiering on regardless. For some with MAV, this is just not possible unfortunately.

Best … Scott

3

I worked full time for a few months after I had my first issues then when I had my crash in 2008 I was only able to work two weeks and then took off again.

I was on short term disability until fall and then long term disability until January …I was trying to return but just could not so I basically lost my job of almost twenty five years due to this condition.

I can not imagine trying to work full time right now. I would love to be able to go back to work but my symptoms just do not make that possible right now.

It was really a tough place to be in when i had to make that decision. My husband who had been retired for almost seven years has now gone back to work since I am unable to do so at this time.

I wish you the best and applaud you for being able to still work so many of us here cannot do so at this time. Yet there are other who still hold down a full time job.

4

Scott - I totally hear you on that one. I do the same thing - quiet time & Valium save the day!

Timeless - Sorry to hear you are having such a hard time. I hope things turn around for you soon!

Without meds and severe diet restrictions (no sugar, wheat, dairy, tomatoes, sesame seeds) I wouldn’t be in the position I am in now. Some days are better than others, thanks for your thoughts. It is nice to know we’re not alone with this.

Take care,
Liz

5

I work full time and some days I feel so motion sick that it is very difficult to get throught the day. There are so many things at my job that exacberate my problems - flickering lights, bright lights, pictures that are hanging crooked on the walls, perfume odors. loud voices, my wobbly chair, people who move their hands and/or sway when talking.

I’d love to get a new job closer to home but there is virtually nothing around me. Also, bad as things are right now, they could be worse - It’s not like I can ask a lot of questions at the interview and still expect them to hire me when I am finished - such as do people wear perfume? Do they rock back and forth when they talk? What kind of cleaner do you use? How loud do people talk? How close is the bathroom to my desk? Will I be need to be a passenger in a car at any time? Can I see the computer monitor I will be using? Can I try the chair out before I take the job? What windows does the sun shine in? Is there anyone here who will purposely spin themselves around to annoy me - yes, I used to work with someone who did that.

Financially I don’t think I could get by on disability, hopefully I won’t have to go that route though some days are so bad I am afraid I will.

6

Book I hope you do not have to go that route either. It is a long and lonely journey when your financial stability is compromised on top of your health concerns…

7

Dear Liz and Timeless,
I am applying for disability this week as I, too lost my job of 25 years in January 2010(teaching) because of MAV. I thank God each and every day for blessing me with a husband who is still healthy enough to work full time and is not bitter or resentful of my situation…we have only been married a year and a half. I am slowly coming to terms with the fact that I may never be able to return to work full-time…I cannot teach because the school district requires a doctor’s note guarenteeing that I will not be absent more than one day per month and no doctor can give me that. I have continuous nausea/dizziness/neck pain and daily headaches…am not taking any medication yet because have not been seen by neurologist yet. I have an appointment this Thursday afternoon at the University of Pennsylvania with a neuro named Dr. Fred Weinblatt. Have you seen him or heard about him? I am praying he will give me something to relieve at least one of my symptoms…good grief.
Susan

8

Hi Susan,

I am sorry you’re having to go out on disability but am so happy you have a spouse that understands and supports your decisions through this. I hope that the doctor finds something to help you relieve your symptoms.

I live in Washington state so am not that familiar with NE doctors, but I hope the doctor you’re going to see will take the time to listen to your issues and work through medical options with you. Speaking personally, it took about 4 different rounds of medicine to find something that worked for me, strict changes in my diet, and exercising regularly before I started to see improvement. Some days are better than others, but overall I am doing much better. I know exercising is hard given half the time we can’t stand up straight as it is, but I’ve found walking and regular yoga are doing wonders for my balance.

Good luck!
Liz

9

I think the other answer here is how bad are your symptoms, how fast are you able to get a good doctor/diagnosis, and how quickly do the meds work for you? I was lucky to have positive results in all three: my symptoms were never as bad as most of the people here on the board, I found a great doctor who knew about MAV and what to do pretty fast, and the meds I have tried seem to be helping. Oh and having a place to vent and discuss these things doesn’t hurt either! :wink: So I am able to work full time with my condition in its current form because of these things, but also with my own lifestyle changes and alterations at work (lights, etc) and knowledge that there are just going to be days that will be difficult.

10

When struck by the bout that led me down the path to this diagnosis, just over a year ago, I couldn’t do squat for a month. Since then I’ve tried to work what are for me full days, which hasn’t worked out all that well thus far. “Full” means up to 8-odd mental-manual plus a few at the computer, or the full amount at the computer.

The stress of work pressure, particularly deadline pressure, didn’t stop me, but I screwed up a whole lot. Exhaustion, overload, you know the drill. When I screw up, I do what it takes to make good, but it runs into time and mess, especially when I’m exhausted as I try to straighten things out.

I kept some very loyal customers; they appreciated my doing my best for them, and they value my dedication and special expertise. However, there are limits, and even I think it reached these limits even for those who wanted to stick it out with me, except when they needed a quick consult, inspection or repair. I dasn’t schedule any for a full day’s work any more, because my effectiveness diminishes so much after 3-5 hours.

That’s my electrical customers. My writing still holds up, though I haven’t felt the energy to propose new columns, features or books. A lot of computer crashes, corrupted files, etc., but so far haven’t been wiped out. I have no problem meeting deadlines with a monthly column, and am back up to speed with my regular volunteer responsibilities; and I’m doing reasonably well with current book deadlines. Hell, I expect to be able to catch up enough to put my bathroom back together soon.

For the past few weeks I have had no,zip,zero electrical customers scheduled, which is not a terrible thing. If not for medical bills and time incapacitated, I might not even have had to eke out my income the past couple of years from my savings, which quite a few people in the building trades have had to do (and worse).

What this adds up to is a lot of motivation to stick closely to whatever diet etc. prescriptions the doc thinks are worth trying, at least for long enough to see whether I can abate some of this limitation. It sounds really frustrating to be where some of you are, having done all you can and still being pretty limited.

11

Knowing how MAV has affected me, I fully understand how some on here have had to leave their jobs. I have been fortunate to have a gov’t desk job, which does have its stresses…but nothing like the profit-motivated private sector. When my head is in full “fog” mode, I can just drift at my desk, or sit in a meeting - maybe catching every other word. My co-workers feel sorry for me, and I’m allowed to wear sunglasses. Of late I’ve been feeling better, but at this time I’ve dipped back down again as I adjust to the Effexor…which has actually worked for me to a large extent.

12

Hello Liz

I’m new to the forum here and saw your post. You’re the only other person in Washington state that I have heard of with MAV. For me it started in 1996 and over the years each episode became worse and longer and the time between episodes shorter. In March of 2008 I finally had to take a medical leave of absence from my job at Microsoft and haven’t been able to return to work since. The MAV is now cronic and bilateral and I haven’t responded to treatment. Either the medications don’t do anything or I have such strong side effects that it actually makes things much worse. Since March of 2008 I’ve been batteling Socical Security Disability and my privated long-term disability through Prudential. As if having this condition isn’t enough but to go through all of that stuff too…not pretty…all because it doesn’t show up on an x-ray!!! :slight_smile:

Would you mind sending me a PM with the names of the Drs you have seen in WA? I’d like to have my neurologist talk with them and look for other options he hasn’t thought of yet.

And Susan you are lucky to have have a spouse that understands. It is difficult living alone with this and even more difficult (sometimes) getting people to understand what it is all about!

Cheers!

Paul

— Begin quote from “dizzyboo”

Hi Susan,

I am sorry you’re having to go out on disability but am so happy you have a spouse that understands and supports your decisions through this. I hope that the doctor finds something to help you relieve your symptoms.

I live in Washington state so am not that familiar with NE doctors, but I hope the doctor you’re going to see will take the time to listen to your issues and work through medical options with you. Speaking personally, it took about 4 different rounds of medicine to find something that worked for me, strict changes in my diet, and exercising regularly before I started to see improvement. Some days are better than others, but overall I am doing much better. I know exercising is hard given half the time we can’t stand up straight as it is, but I’ve found walking and regular yoga are doing wonders for my balance.

Good luck!
Liz

— End quote

13

Hi Paul,

Good to hear from you. So sorry you’re out on disability. I’m still struggling with work every day and not having much luck. I’m happy to know at least you’re at home resting during this time rather than spending 8-10 hours in front of your PC at Microsoft. Blech!

So far I’ve seen Dr. Fosmire in Bellevue, he’s awesome and with Overlake. He’s terribly hard to get into (6 month wait time) but well worth it. He started me on a combo of meds that worked for the past 4 years but have recently stopped working as well.

I’ve also seen Dr. Sheena Aurora at the Headache clinic in Seattle. I wasn’t impressed with her at all. I think Dr. Fosmire has a better grasp of the MAV condition, he has a number of patients that he works with where as she only treated a handful of MAV cases. Her physicians assistant was awesome though! I don’t recall her name.

I’ve also see Dr. Lawrence Murphy also with Swedish. He recommended Botox to help with the MAV as he’s seen it work before but I never followed up. I just wasn’t wild about botox.

I’ve also see. John Nowicki, Naturapathic physician. He’s been really helpful treating the migraines through food allergies. When I am on my super restrictive diet (no wheat, dairy, eggs, tomatoes, sugar, etc) I feel much better and have less MAV. I go off of it from time to time and always pay the price. I recently went back to see him as my diet didn’t seem to be working any longer so we redid the food allergy blood work to see if I’ve developed a new intolerance. He’s a migraine sufferer as well and has successfully treated his own migraines through food avoidance.

Good luck with everything! Let me know if you’d be interested in meeting for a tea sometime. It would be nice to meet another person and talk about treatment options. My sister also suffers from MAV.

Liz