Greetings From a Newbie

New here, let me introduce myself 🤝
1

Hi there,

My name is Paul. I have been diagnosed with MAV and Fibromyalgia.

The Fibro is old, 5 years, but the MAV is new in the last 3 months.

My primary care doctor that we love, has ordered no driving. I have been on medical leave for almost 3 months and my FMLA is running out. It ends on the 15th.

I don’t know if I will be able to return to work. I LOVE my job! However, it is 54 miles away. It can take between 1-3 hours to get home on these damn California freeways.

Are most people with MAV working? On Disability?

I run my own business on the side and am wondering if I should just stick to that?

Any thoughts or suggestions would be appreciated!

2

Hi Paul, I’m working, had 5 weeks off at the very start 14 months ago but have just battled on most days since
Driving eases my symptons (dont ask me why???) so I dont have that issue

…anyway, who loves their job? I detest every second of mine :wink:
What is it you do please tell?

Chris

3

Welcome to mvertigo Paul but sorry it’s because of this nightmare.

What started happening to you that signalled the onslaught of MAV? I take it you never had dizziness previously? I’m asking all of this because lately I’ve been reading just how much these two illnesses overlap. Apparently they now think fibro can also be associated with dizziness as well. Or maybe it’s MAV and they have it confused. I need to find the papers on this research. I guess at the end of the day the dx doesn’t matter so much because the treatment is so similar for both.

I work and just roll with the punches. Some days are quite nasty and others are easy. Right now on holidays I’m getting trashed from jet lag and sleep disruption. Blah, blah … life with MAV or whatever this is.

Scott :shock:

4

I can work. I had to take a week off when it was really bad. That was the week I did research and realized I had MAV, did the dietary eliminations, slept more etc…I am 90% most days now. I drive around all day for work. I do home visits as a social worker. I too, feel better when I am driving sometimes. My mom has fibro. Some of the thinking is that depression and PTSD can lead to fibro; that it is the body’s way of dealing with the stress from these conditions. I am hoping that one is not hereditary like the migraine is. Best of luck to you, be in good health.

5

Hi Paul

Initially when this all started for me 6 yrs ago I lost 3 months of work but since then have worked fulltime, maybe missing a couple days. I am very lucky I work from home and can usually work thru it. I am relatively new to the board as well and must say the board is a wealth of knowledge, and just flat out helpful when you just need to vent. I wish you the best and hope you feel better soon.

Cecilia

6

Well, I’ve had migraines for years. The dizziness is a recent development.

And yes, I have dealt with depression and PTSD for many years.

From what my doctor has told me is that most medications do overlap the MAV/Fibro conditions so that is a plus for me.

I have been out of work for the last 3 months. I haven’t been allowed to drive and being in this house is driving me batty. I started getting dizzy in the mornings. Back in May I started getting bad spells on my way to work or once I got there. I assumed it was the getting up at 4 a.m. to beat L.A. traffic to be to work by 6 a.m. But as time went on the dizziness and tinnitus has been non stop.

Tuesday my doctor put me on Maxalt and so far I have seen quite an improvement. So I am hoping I can get back to work on the 15th as scheduled.

And Chris, my job, I am a photography business consultant. I talk on the phone all day with photographers from around the world. I am a successful photographer myself and have been able to use my business and marketing knowledge with all kinds of people; from brand new photographers that just got their first camera to photographers that are charging between $10,000 to $25,000 for their wedding photography. Why they call me…I have no clue. But it works. I work with a company that basically does all the back end work for photographers. Once an event is shot, they upload the images to us, we host the images on our 7,000 terabyte server, we handle all consumer transactions, print order fulfillment, album design, album binding and many other services that keep a photographer focused on improving their craft and getting more business.

So, to be of such assistance to some of the nicest, humble and not so humble photographers, makes this job a perfect fit for me! I wouldn’t want to be anywhere else.

And on the weekends I shoot my own weddings and have a blast working with some of the most awesome clients a person could meet.

If you’d like to see a sample, you can look at my Facebook Business page. (Our main website is on the fritz again and I’m looking for a new host) It is publicly available so you don’t need to sign in or even have an account.

I recently had a bride that wanted to do something other thanj ust box away her wedding dress. She asked me to do a “Trash the Dress” session. I think they came out pretty well.

facebook.com/album.php?aid=1 … 832&ref=mf

Any other advice, suggestions or comments are welcome. I really am going to have to learn how to work around this!

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Brilliant! what a great idea - lovely, lovely photos

As for me a bit like scott and celia I just bosh on through the bad days with peppermint and lavender oil for the nausea (peppermint oil has been a lifesaver on hte nausea front), and if desperate pop a stematil, which takes the edge of nausea and the spins. I work for myself from home mostly so I can flex my schedule to fit in with how I’m feeling for the most part. And also most of my work is for people in a totally different time zone so when I’m awake they are asleep- giving me more flexibility so I’m pretty lucky that way. I’m not working (for money) full time, but we do grow most of our own food etc so gardening and preserving fills up the rest of the time. I go to the gym 5-6 days a week to try and get some endorphins happening to help as well - At least MAV is helping me get fit :lol: .

I didn’t lose too much work when it all first started - mostly because it all started 4 days before I was due to have a month long holiday - you can imagine how great that holiday was with no meds and no diagnosis!!! :evil:

I’m fine with driving - in fact sometimes it’s the best relief, as for many others here

8

Interesting, I expected to not drive again for months, the way my doctor talks about it. I’ll see him next week to be released back to work.

There is one question I do have, how the hell are we supposed to go a whole month with 9 migraine pills? The new stuff says, 1 pill, if headache is gone take a second pill, but no more than 6 in a 24 hour period, and no more than 9 a month?

I just don’t get that.

9

HI!
It’s interesting how MAV affects us all differently. I feel my very best when I am outside and/pr in the car! I do work, but was bed bound for 3 months last year when this all developed. Luckily for me it hit me a month before the end of the school year (I teach). I used all my sick days, took some days with no pay and stayed in bed most of the summer.

Last year when I returned to work I REALLY didn’t think I was going to make it through the school year. Fortunately enough, I found a medication that gives me some relief and I am able to continue working. For me it was not an option to not work. I wouldn’t qualify for disability and there was no way I could go without insurance.

Photography used to be a hobby of mine before this illness took over. I aspire to pick up my camera again soon!

Sarah

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Well, unfortunately, this month has been the worst. I don’t know if I’ll be able to go back. I was just put off work for another 3 weeks. I am past my FMLA leave so my company is no longer obligated to keep me. We’ll see how that goes.

Fortunately, I do qualify for disability and insurance is through my spouse, so no worries there.

I plan on saving my medication for days I have to shoot weddings. That will bring in a little.

11

Welcome Paul
As I’ve said in another discussion thread, I have MAV, fibro and cfs. I was off work and couldn’t drive for a year. I thought I would never do either again, however with perseverence I now work 3 days per week 9-5 (I’m a community nurse) and drive short distances, usually up to 10 miles then I need a break and can do the return journey. The key to my recovery apart from the right medication, exercise and diet has been to pace myself and not get frustrated because I can’t do what I used to. I’ve just had to accept the “new” me. Fortunately my manager was undestanding and made adjustments to my job to enable me to return to work in a graduated way and my family were supportive and allowed me to live with them. Otherwise I reckon I’d be out of a job and on disability benefit!
Scott- I’ve had migraines with aura since 13 (I’m now 45) which involved visual changes, face and limb numbness, problems speaking followed by headache and vomiting. They “transformed” gradually 10 years ago to include vertigo, nausea, light headedness, photo, phono and osmophobia, etc etc etc. I was finally diagnosed 2 and half years ago following a “virus” when the whole room did a 360 degree flip and I thought I was going to pass out. I could barely stand, let alone walk and rarely left the house for the next 12 months. This was when the fibro and cfs were diagnosed as well. Before that I was an active person who hardly ever had a sick day! Personally I think that perimenoapuse is involved too.

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Hi Paul - I just saw your post. I’ve been diagnosed with MAV and had symptoms since last October. I wanted to reach out to a photographer … I’m transitioning to retirement and I thought that I would finally have the time to fulfill my desire to work p/t as a photographer. I am not able to use a desktop for 20 minutes without triggering symptoms. I stopped using my desktop for three months thinking I could settle my symptons. I’ve been back on the computer off and on - mostly off - for a few months.

Are your symptoms triggered by computer use? Post processing… and if so, how do you handle it? Thanks!! Karen

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Looks like this thread is quite old, so we’ll have to see if the original participants return.

In any case, Karen, I had the same problem. Amitriptyline @20mg nocte fixed that for me. Was then able to use the computer all day. YMMV. All the best!

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Thanks!!