I am curious how many of you are still able to work with your condition.
I have been out of work since August and I am going to try and go back next week. This is something I am a bit nervous about as I do not know how that is going to effect my condition. I am better than I was but I know there are days when while at home I can take it easy so to speak when my condition gets worse.
I just wonder how you all cope with working and combating the disease. What are some of the things you do that help while working , etc. any input would be appreciated.
I continue to work full-time. It is tough some days, but I think it is the best thing for me to do. I find that if I push through and make myself get moving and go to work, most days I get by okay. Some days, I actually feel better once I get moving. Other days I wish I had stayed home. I often spend time on the weekend recuperating. Overall, I think continuing to work is the best decision for me. I find myself resting too much in my opinion when I am at home. Getting out into the workforce is very important to my sanity. However, I would prefer to work shorter hours or fewer days a week. I think I would feel better if I could strike a better balance between work and rest.
Here are some of the things I do to cope at work:
I had the fluorescent bulbs taken out of my workspace.
I wear lightly-shaded sunglasses to filter the other fluorescent lights in the building whenever they seem to be triggering my symptoms.
I sometimes take short naps in my car.
I keep myself fed with proteins and vegetables (low-glycemic index foods).
I keep myself hydrated with water - at least 64 oz. a day at work.
I try to rest my eyes by taking a break from the computer screen every so often.
I continue to work full-time. It is tough some days, but I think it is the best thing for me to do. I find that if I push through and make myself get moving and go to work, most days I get by okay. Some days, I actually feel better once I get moving. Other days I wish I had stayed home. I often spend time on the weekend recuperating. Overall, I think continuing to work is the best decision for me. I find myself resting too much in my opinion when I am at home. Getting out into the workforce is very important to my sanity. However, I would prefer to work shorter hours or fewer days a week. I think I would feel better if I could strike a better balance between work and rest.
Here are some of the things I do to cope at work:
I had the fluorescent bulbs taken out of my workspace.
I wear lightly-shaded sunglasses to filter the other fluorescent lights in the building whenever they seem to be triggering my symptoms.
I sometimes take short naps in my car.
I keep myself fed with proteins and vegetables (low-glycemic index foods).
I keep myself hydrated with water - at least 64 oz. a day at work.
I try to rest my eyes by taking a break from the computer screen every so often.
Good luck! I hope it goes well for you!
Marci
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Thank you Marci.
I know about the lights as I had them taken out before I was out of work, but the sunglasses are a great idea.
And I have learned about the food so that will be something I will need to do instead of snacking on sweets like I used to do at work, plus I now drink the water so I know the importance of that.
Do you wear the sunglasses while working at the computer and does it seem to work.
One of the main things I a concerned about are fragrances do they effect you and how is that handled.
The naps are a great idea might have to do that at lunch.
Do you wear the sunglasses while working at the computer and does it seem to work.
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I do wear them in front of the computer sometimes. It does help. I also have my monitor turned down about as low as it will go in terms of brightness and contrast. I can’t explain it, but putting the sunglasses on whenever I start to feel vertigo or other false sensations of motion coming seems to settle things down for me. I don’t know if it is the filtering of light, which is a trigger for me, or if seeing the sunglass frames helps my brain get some perspective and sort things out. It also could have something to do with the sunglasses keeping me from squinting all the time. Maybe the relaxation of my facial muscles helps. Who knows. These are all just guesses, but the sunglasses definitely help. I picked out a pair that allows others to see my eyes. That way, we can make eye contact, and I don’t feel like I am being disrespectful.
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One of the main things I a concerned about are fragrances do they effect you and how is that handled.
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Fortunately, the people who sit around me don’t wear fragrances. I’m not overly sensitive to them. Only certain strong scents bother me and even then it is not one of my major triggers. As long as I can get away from it and get some fresh air, I do okay. There is a gal in my office who has more traditional migraines. She sits next to a man who wears heavy cologne. She’s been struggling with how to ask him not to wear it. That’s a tough one that I’m glad I haven’t had to deal with myself.
I was diagnosed shortly after taking early retirement. I was ready to go back to work after 1 year of retirement despite not feeling that much better. However, I looked upon it as a challenge. I’m now manager of a health club. The worst of it was the anxiety in not knowing whether I would be able to push thru the MAV. Some days are difficult; on those occassions I wonder whether my sales presentations are even coherent. But employment did wonders for my self esteem. On most days I find a way to push thru the brain fog and headaches. Good luck to all.
Hi. My husband is the MAV sufferer. He is currently in the process of figuring out what meds will work to help him get back to a somewhat “normal” life. He has not worked since Dec 22nd. In the past, he has gone for 2 months without being able to work. Mostly, it is his commute to work that is the problem. The motion of the car ride sets off the unsteadiness. He used to be able to go several months between “attacks” but it seems to be recurring more frequently and lasting longer.
My husband is also the MAV sufferer. He has not worked since Aug of 07. We are trying to get him back to work, and he has been trying to volunteer at a place that he would like to work at when he feels well enough to do full-time again. At this point he feels like part-time is not an option because he can’t know that Monday Wed. and Friday will be days he will be symptom free, or at least bearable. We have a deadline now to renew or go off of his met-life disability…He’s going to his old Primary care doctor on the 13th, to ask for samples of Effexor, and possibly others you guys have mentioned. His migraines have been pretty frequent and pretty bad lately (course I found out that he hasn’t taken his Verapamil for a week and half, because he “forgot he had it”)
Which reminds me, I know it’s off topic, but has anyone else experienced really frequent short term memory loss since the onset of the symptoms??? Jason’s memory has always been pretty bad (slightly worse then most males I know), this is likely due to multiple childhood concussions LOL (jumping over double wide trailers on a dirt bike at 16, multiple other “good idea at the time” experiences lol) but after the onset of the symptoms in Jul '07 he forgets EVERYTHING. To the point that I can remind him at least 10 times to make a phone call to his doctor (multiple ref. in emails, texts, phonecalls and post-it notes in the most likely places…coffee pot, laptop, amplifier remote) in the day, get home, and find out he forgot to call the doctor, often within seconds of me hanging up after reminding him. Or he’ll be surprised to find out that we are meeting with someone that afternoon after I have continuously reminded him (for 2 weeks) we are going to someone’s house later in the week.
I expect most males to forget birthdays/anniversaries, even heard a couple ask “what’s the date for Valentine’s day this year” but Jason’s memory is sig. worse then before the symptoms, and it’s mostly short term, and sometimes as bad as “Why do I have the mop in my hand” or even several months ago was making coffee and suddenly couldn’t remember how to make it. Perfect example…he suddenly forgot the alarm code at the place he volunteers that he’s used for 4 months straight and never once forgotten it, and used it the day before. It was pretty funny though bc he set it off…I told him to just close his eyes and put it in out of physical memory …guess that was a bad idea LOL
Which reminds me, I know it’s off topic, but has anyone else experienced really frequent short term memory loss since the onset of the symptoms??? Jason’s memory has always been pretty bad (slightly worse then most males I know), this is likely due to multiple childhood concussions LOL (jumping over double wide trailers on a dirt bike at 16, multiple other “good idea at the time” experiences lol) but after the onset of the symptoms in Jul '07 he forgets EVERYTHING. To the point that I can remind him at least 10 times to make a phone call to his doctor (multiple ref. in emails, texts, phonecalls and post-it notes in the most likely places…coffee pot, laptop, amplifier remote) in the day, get home, and find out he forgot to call the doctor, often within seconds of me hanging up after reminding him. Or he’ll be surprised to find out that we are meeting with someone that afternoon after I have continuously reminded him (for 2 weeks) we are going to someone’s house later in the week.
I expect most males to forget birthdays/anniversaries, even heard a couple ask “what’s the date for Valentine’s day this year” but Jason’s memory is sig. worse then before the symptoms, and it’s mostly short term, and sometimes as bad as “Why do I have the mop in my hand” or even several months ago was making coffee and suddenly couldn’t remember how to make it. Perfect example…he suddenly forgot the alarm code at the place he volunteers that he’s used for 4 months straight and never once forgotten it, and used it the day before. It was pretty funny though bc he set it off…I told him to just close his eyes and put it in out of physical memory …guess that was a bad idea LOL
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Absolutely! Brain fog and short-term memory loss are very common, and I have suffered from both since this all started for me. I also find myself saying the wrong word or having difficulty finding words. I know when I am doing it, but I can’t seem to control it. I catch myself using the wrong words and missing words in emails too. This is something I rarely did before the migraine started. These cognitive symptoms were at least 10 times worse for me when I was on Topamax. Luckily, they improved back to level they were before the Topamax once I stopped taking it.
Well…guess we won’t be asking the doc about Topomax LOL…then again…guess you can be “disabled” for having severe amnesia, right? I’ve wondered how much the cognitive drugs can affect the memory loss but right now he’s not even taking the cymbalta anymore. I know several years ago when I was on Zoloft I had a much more muddled brain. more muddled emotions too…and ironically it made my anxiety worse…so I stopped taking it…actually I quit taking all my anti-depression/anxiety drugs cold turkey. Wouldn’t it advise it to anyone else…but after 2 weeks I seemed better. Now I think a mild anti-anxiety/depressant would do me wonders, but am nervous about taking any again, since they didn’t help a whole lot when my symptoms were severe. Going to Vegas in a couple days, we’ll see how Jason does with the long drive (he’s driving, to cut down on the possibility of a bad case) and how I do with the loads of people. Crowded places make me want to jump off a roof :roll:
Well…guess we won’t be asking the doc about Topomax LOL…then again…guess you can be “disabled” for having severe amnesia, right? I’ve wondered how much the cognitive drugs can affect the memory loss but right now he’s not even taking the cymbalta anymore. I know several years ago when I was on Zoloft I had a much more muddled brain. more muddled emotions too…and ironically it made my anxiety worse…so I stopped taking it…actually I quit taking all my anti-depression/anxiety drugs cold turkey. Wouldn’t it advise it to anyone else…but after 2 weeks I seemed better. Now I think a mild anti-anxiety/depressant would do me wonders, but am nervous about taking any again, since they didn’t help a whole lot when my symptoms were severe. Going to Vegas in a couple days, we’ll see how Jason does with the long drive (he’s driving, to cut down on the possibility of a bad case) and how I do with the loads of people. Crowded places make me want to jump off a roof :roll:
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I had the same experience with Zoloft years ago. It made my anxiety much worse, and I had trouble concentrating. After driving through my second red light while on it, I decided to quit taking it. I didn’t know any better, so I quit cold-turkey too. The experience of getting it out of my system was very similar to my MAV symptoms. I have had much better luck with Wellbutrin. I don’t have any added anxiety or other side effects from it. Of course, everyone is different, but you may want to check into it.
I tried wellbutrin for about 2 weeks, maybe longer can’t remember. I don’t remember it doing much but that could be due to the other drugs I was taking.