Brain Fog and Fatigue

[MarciM]

Has anyone found anything that helps with the fatigue and brain fog (confusion, forgetfulness, lack of concentration) that comes with MAV? My job, which I hope to keep, requires a great deal of concentration. I am desperate to find something that helps with these symptoms. I have found some relief from other symptoms with my current meds. I am on Verapamil, which has helped the vertigo but not the other motion sensations. I am also on a low dose of Topamax, which as helped the headaches but not much else. The brain fog, fatigue, visual auras, phonophobia and tinnitus are making it very difficult for me to do my job well. Any ideas?

Thanks,

Marci

[dizzzyupthegirl]

I hate, hate, hated topamax. Made me feel like my IQ had dropped a few dozen points. I’m on klonopin and although many people say it sedates them, it has really helped me by improving my balance hence allowing me to have more energy and mental clarity.

[Hannah]

Hi Marci,

THe only thing that helped my brainfog was time - it got better as the illness progressed and finding a drug that helped me - I take propranolol which has by no means put all my symptoms to rest but does help.

The one thing that made the brainfog worse for me was tompamax. Everyone is different and some people do really well on it, but if it is only helping headaches and not the dizziness, I might try to find another headache preventative. I didn’t realise how badly it was impacting on my thought processes when I was on it as I was foggy anyway when I started taking it. Then I came off it and realised it was making the fog five times worse. It has the nick name dopamax.

best,

Hannah

[Dizzyblonde]

Hi Hannah

Off topic a bit hear, but see you joined the forum in December 2004. As a ‘long-timer’ I noticed you mention that time was a healer for you too.

Can you tell us how you are doin’ these days, have you any good news stories for yourself and how ‘functional’ are you now (if you don’t mind)

regards
Judy

[Hannah]

Hello Judy,

My illness has changed as time has gone on. I will have been ill with this for 6 yrs in August. So many factors are at play it’s difficult to be specific about what’s helped etc… I do not know and probably will never know if this whole thing started as vestibular neuritis and then I developed a migraine problem which complicated everything. Alternatively I may simply have had MAV all along.

I was very, very ill for the first 19 months or so - disabling symptoms - unable to work. My symptoms were constant and unremitting and the brainfog was severe. I got progressively better and was back at work at about 2 and a half years in. However that was when it started to become clear migraine was at the root of my lack of recovery. I started having relapses that were different in nature to the symptoms I had initially experienced, obviously with some similarities. I now experience very, very severe photophobia along with exteme lightheadedness, increased tinnitus, visual weirdness (for want of a better word - looking through glass sensation, combined with a sensation that things are too near and too far at the same time - odd, I know) and some vertigo. These relapses last for weeks at a time. I started propranolol approx 2 and half years ago - which initially was a life saver. I was at about 95% for about a year. Then I had another relapse and it stopped working as well, I upped the dose but it never worked as well again although I am still on it. I have tried a whole gamut of drugs but only the propranolol has helped me at all.

Now I am in a weird position where if I stay out of the sunlight (almost impossible to live like that) avoid certain foods, get enough sleep, and most importantly never, ever have a panic attack of any kind, I am ok. My brain is mostly clear (ish) I can work - I work from home which makes this easier - and can function fairly normally. However I am currently always walking on thin ice and as soon as I go in the sunlight I devolve into extreme lightheadedness and intensely cloudy thought. I also know that if I ever stress out majorly over anything I can relapse for weeks and weeks.

That said, apart from a 12 week relapse last summer, when I was extemely ill, it has never been as horrific as the first 19 months.

I am really looking for a drug that might allow me to live a normal (ish) life - not looking for any miracles - without constantly fearing relapse and most importantly that allows me to tolerate sunlight.

How long have you been ill and have you seen improvements?

best,

H

[Dizzyblonde]

Hi Hannah,
your description of your experience in the first 19 months of your condition mirrors mine. Prior to the onset of my MAV, I had never as much as suffered from a headache I feel a bit embarrassed to say, having seen such a long history of suffering from many of our board members.

Every symptom I had was chronic; extreme motion intollerance (couldn’t even turn my head), vertigo, dizziness, nausea, photophobia, phonophobia, ear aches, blocked/fullness in ears, brain fog, which lead or was triggered by MAV - to anxiety and depression. They were all ‘off the chart’, hospitals & then housebound, I thought as though the bottom had fallen out of my world. Crying myself to sleep was not unusual.

Thankfully, diagnosed with MAV very soon after BIG CRASH (approx 3mths) and taking various migraine meds ever since. Trial and error really, am now improved to approx 60-70% at best and feel positive most days. Last week’s neuro’s visit went well, he was pleased to increase my 4mthly appointments to 6mths, so I was very pleased too. Funny you should mention the evolving part of your condition, because my photophobia became worse particularly during the day only a few months ago. I have often wondered how this condition might evolve, I’ve had most of the symptoms on this MAV board, but not all of them and have wondered whether this was just luck or just time, who knows really

I’ve also found that my key triggers are anxiety/stress so I’ve just started taking a tricyclic antidepressant Dothep to suppress those symptoms as well as Klonopin (which I’ve increased recently with very good effects). Sleep is also an important issue, I don’t go out at night any more because I’ve found it too much, it’s amazing just how you slowly without noticing too much, change your lifestyle to reflect your new limitations and then somehow that then becomes the ‘norm’. I don’t have a realistic comparison of how well I’m doing because I no longer work as I think it might make me too sick and my lifestyle is changed dramatically.

I haven’t had any ‘relapses’ as such in the past 6 months but had quite a few last year which could last for 6-8 weeks at a time. So I’m hoping that the meds are doing their job. I think I’m going to be on some form of med for the forseeable future, but have absolutely no problem with that one, because the alternative is not worth thinking about.

I’m sorry to hear that you’ve been suffering once again, what a bummer about the propranolol not acting as effectively as before, I hope you have a great neuro who can help you through the tough times.

— Begin quote from “Hannah”

I am really looking for a drug that might allow me to live a normal (ish) life - not looking for any miracles - without constantly fearing relapse and most importantly that allows me to tolerate sunlight.

H

— End quote

You’re spot on about that one Hannah, that’s why I’m now on benzo’s and anti-depressants, just don’t know what med can help with the sunlight situation.

Thanks for telling your story, wishing you better health
regards
judy

[joseph0952]

Hi Marci,

The brainfog, forgetfullness, and lack of concentration were all big issues for me at the beginning of this dizzy nightmare mess! I still have some of these problems but to a somewhat lesser degree. Less stressful job, working only part-time, getting 7.5-8 hours of sleep and diet have certainly played a role…plus after 15 years my body has a way of healing to some extent. Some of the medications that i was on in the beginning of this dizzy condition…particularly anti-depressants (SSRI’s) was really giving me lots of brain fog plus my concentration was very bad. Plus…i was on a stronger dosage of Xanex which would make me feel drousy. Currently i’m only on one tab of Xanex per day which is hardly anything.Also…the Verapamil helps with the Tension build-up in my head. Concentration can still be an aggravation…so i have to keep my life simple and low stress.

Joe

[MarciM]

— Begin quote from “joseph0952”

Concentration can still be an aggravation…so i have to keep my life simple and low stress.

— End quote

Maybe that is the key and the one thing that will be the most difficult thing for me to give up - chaos and stress. I have a tendency to overdo things. I am a perfectionist and beat myself up when things aren’t perfect. So right now, I am trying to keep up with my stressful job and my personal life with a husband, two teenage daughters, two dogs, two cats, two turtles (just think Noah’s Ark), and a mother-in-law we’re trying to get moved into assisted living. When I can’t handle all of this because of feeling lousy, I sit around feeling guilty and worrying about it. I don’t know how to slow down and just accept that not everything will get done but that it will be okay anyway. Figuring that out may be the most important and most difficult key to my recovery, or management, of this condition. People count on me and respect me at work and at home and I hate the thought of that changing…

[system]

— Begin quote from “MarciM”

— Begin quote from “joseph0952”

Concentration can still be an aggravation…so i have to keep my life simple and low stress.

— End quote

Maybe that is the key and the one thing that will be the most difficult thing for me to give up - chaos and stress. … Figuring that out may be the most important and most difficult key to my recovery, or management, of this condition. People count on me and respect me at work and at home and I hate the thought of that changing…

— End quote

Marci, I was just writing to somebody last night about all this, kind of free-associating about it. I was writing about what had happened to me and why. “Why did this happen to me? What is the lesson in this?”

When I used to have migraines as a young adult, the strangest thing about the entire cycle was in the beginning of the predrome i would become calm and be glad to see the aura and think to myself “good, I can slow down, let everything go, go to bed and be accountable to nobody” I would also think to myself “and I have got to start doing things differently, because this is what happens when I don’t - I am going to be in excruciating pain followed by an incredible hangover.”

But I would get over it and go on with life. Well, not this time. My life has become much simpler, much calmer, I have much better boundaries with people and their demands, etc. I don’t need as many things, I don’t want as many things. As I’m improving I’m taking quiet walks, doing quiet gardening, telling people i’m still not ready for company, over and over again “I’ll let YOU know when I’m ready.” and of course they keep asking, but making sure I let them know how much they mean to me.

Sometimes I find my old self start rushing around and I think, why am i moving so fast? I have ALL day to get this done. It’s my new practice. It’s about time. Your post just reminded me of it. Not a bad lesson to learn, not an easy one to follow.

Julie

[system]

And about the brain fog, every med I took helped with the brain fog, starting with Zoloft. A few days after taking it I woke up and said to my husband “i haven’t felt this clear in a few years.” Each med I added, added a little more clarity, including Neurontin, Klonopin and now Topamax.

Hannah, that light sensitivity is something Heather is also suffering with real badly, I’ll PM her, make sure she sees this thread.

Julie

[Heather]

Have baseball hat will travel. I can’t imagine being in a grocery store without a hat on.

Heather

[Hannah]

Hey Heather,

Just saw Julie mention your light sensitivity. Do you have it 24/7? Really interested to know if there’s someone else out there who has the same as me - mainly for solidarity’s sake. It’s driven me half round the bend.

best,

H

[Heather]

It used to be so bad I couldn’t open the refrigerator door without putting my hand up but I have gotten much better.
I still can’t stand it when someone puts on the overhead kitchen lights. I run out or turn them off. Lol.
I find I am constantly squinting, but as I said, wearing a baseball hat helps immensely. You should try it!
In my bathroom I never turn on the flo lights, I put two little lamps on the counter that emit low light.
The funny part was when I went to see the “head” of a headache clinic. I’m the ONLY one pulling my hat down
over my face because of the overhead flo lights, and I remember sitting there thinking: "How much you wanna bet all these a-holes
get DX’d with migraine and I won’t, yet I’m the one with the hypersensitive nervous system ;-).

I was right.
The idiot DX’d me with NPDH–Newly persistent daily headache. Actually NPDH stands for newly persistent d*ck head. (refferring to the doc) :mrgreen:

The other day, the sunlight hit the key in my car ignition and I nearly went nuts from the reflection. Too weird!

Also, this is off-topic but, is anyone else out there typing words with letters backwards? sheesh.

Heather

[MarciM]

Heather,

I relate to both the typing the letters backwards (new thing) and the light sensitivity. The reflection off of those chrome license plate holders has zapped me numerous times. I had the fluorescent bulbs taken out of my cubicle at work, but they are everywhere else in the building. I’ve been wearing sunglasses indoors at work sometimes. I hadn’t thought about trying a baseball cap (I doubt that is in the dress code). I will definitely try it at the grocery store. I’ve discovered the grocery store is the worst place for me these days. Even if I’m having a decent day, as soon as I walk in there I get this heavy feeling along with vertigo and nausea. I think it may be a combination of the flo lights, the movement of the cart, and walking through the aisles (tunnels) that gets me. The sun has always made me cheerful in the past, but now I’m afraid of it. My neuro told me to wear polarized sunglasses every time I go outside even if it is overcast. I sure hope this symptom passes - it’s depressing!

See you on the dark side.

Marci

[joseph0952]

Marci,

I use to be a Perfectionist…but now that i’m in middle age plus with a complicated health issue…i have lowered my standards and you know what??? It actually feels ok.

Joe

[system]

— Begin quote from “joseph0952”

Marci,

I use to be a Perfectionist…but now that i’m in middle age plus with a complicated health issue…i have lowered my standards and you know what??? It actually feels ok.

Joe

— End quote

Exactly!

Julie

[system]

About the typing thing - it’s not exactly typing things backwards, it’s typing the wrong letters, typing the wrong words, leaving words out. And I used to be able to type just fine without any conscious processing between brain and fingers. Now I’m correcting constantly and then going back and proofing - i can’t believe the mistakes I’m finding. This has definitely gotten much worse since the Topamax. But when I was real sick a year ago, i got a new keyboard and was blaming the keyboard - i would be IMing someone and claim to them, “I never hit that key!” As I started to improve, so did my typing. Now with the Top, i’m having trouble again.

[Brian_B]

— Begin quote from “Julie”

And about the brain fog, every med I took helped with the brain fog, starting with Zoloft. A few days after taking it I woke up and said to my husband “i haven’t felt this clear in a few years.” Each med I added, added a little more clarity, including Neurontin, Klonopin and now Topamax.

Julie

— End quote

The same goes for me. From what I have researched, brainfog is part of the 24/7 symptoms caused by migraine varients such as what MAV’ers experience. If you are still experiencing it, you might want to talk to your doc about trying different meds, or increasing your dosage.

[MarciM]

— Begin quote from “Brian B”

— Begin quote from “Julie”

And about the brain fog, every med I took helped with the brain fog, starting with Zoloft. A few days after taking it I woke up and said to my husband “i haven’t felt this clear in a few years.” Each med I added, added a little more clarity, including Neurontin, Klonopin and now Topamax.

Julie

— End quote

The same goes for me. From what I have researched, brainfog is part of the 24/7 symptoms caused by migraine varients such as what MAV’ers experience. If you are still experiencing it, you might want to talk to your doc about trying different meds, or increasing your dosage.

— End quote

I have a July appointment scheduled with my GP and an August appointment with my neuro. I just tried to make an earlier appointment, but they are both booked. I really don’t know want to do about the meds at this point. I’ve been on Topamax for three weeks and I think it is helping with headaches but making the brain fog worse. I can’t function well at work. I’m only taking 25 mg. at night. I don’t know whether to give up on it or hang in. According to my neuro’s instructions, I am supposed to by at 50 mg. twice a day by now. When I tried 50 mg. once a day last week, I was a mess. I don’t know how much of that was the med and how much was hormones. Ugh! The confusion is driving me crazy. :? I’m also taking 120 mg of Verapamil, which helps with the vertigo but makes my headaches worse. Maybe I should ask for Zoloft? I just don’t know…

[system]

how long ago did you decrease your topamax? and the brain fog is the same since the decrease, right?

With permission from the website I copied this from, here’s something interesting:

*How Long Topamax Takes to Work: Like all anticonvulsants Topamax (topiramate) will start to work best once you reach the proper dosage, although you’ll start to feel something once you reach a steady state. Topamax (topiramate) is especially tricky about being at the proper dosage, as getting too much **or too little **can really hose things for you.

Half-Life & Average Time to Clear Out of Your System: Topamax’s half-life is 21 hours, it’s out of your system in four to five days. *

Bolds are mine - you can feel SEs at too small a dose, or at too high a dose. Topa reaches steady state in four days and is out of your system in 4-5 days.