Brainfog/Cognitive difficulties - anyone?

Symptoms 🌡
1

I’m curious who else on the board experiences cognitive difficulties when they have symptoms. I’ve had this condition for 5 years on and off. When I am symptomatic, along with my main symptoms these days (they have changed over time) extreme photophobia, lightheadedness, odd vision –strange depth perception, looking through glass sensation, surreal effect, I experience a kind of mental slowing and/or brain fog. I feel like I’m in a dream like state. I access information too slowly, so when reading, it feels like there’s a lag between reading a sentence and taking it in. My ability to be analytical is shot. It’s like mentally I can cope with simple conversation and thought, but as soon as I have to grapple with an idea or formulate opinions around something I can’t pull my thoughts together in the same way – my thinking is foggy and slowed.

This is, for me, by far the worst aspect of this illness. I’m keen to know how many other people get this. For me it can go on for weeks, 24/7, alongside the other symptoms. I read something on here about someone’s neurologist suggesting their brainfog IS the migraine for them. It certainly feels that way for me. I have worked out that I’m not just light sensitive but that daylight and sunlight are actually triggers for me. The more light, the worse the dizziness and the cognitive problems. With this current relapse, 10 weeks now, there have been periods where the cognitive difficulties are there when the other symptoms are almost absent.

I am never confused in the medical sense of the word. I know who and where I am, and can generally fake normalicy in conversation, although my ability to think is far from normal and it’s a big struggle. I am a freelance screenwriter and this has a huge impact on my ability to work. I am lucky in that propranonol afforded me a lot of relief for 18 months and I was back at work and almost 100%. However I stupidly allowed myself to have a panic attack about going on a plane as I hate flying. Fear is a huge trigger for me and pretty much always brings the condition back. The light sensitivity starts to creep back and things landslide from there. I took some time off over the summer and the relapse happened during the break. I need to go back to work soon but am avoiding taking a job as it’s punishing and almost impossible to do my job like this. I know, I’ve tried before.

I have upped my dose of propranonol, but unfortunately, this time, it doesn’t seem to be the magic bullet it’s been in the past. Well, not as yet anyway. Although I have experienced a slight lifting of the cognitive difficulties on the higher dose. The drug also comes with unfortunate tiredness and depression SE’s, but frankly I’ll take them over this horrible illness.

Anyway, I’m rambling. I really just wanted to connect with people who also experience cognitive difficulties as part of the condition. I am seen in a neurology and neurotology department. I have a MAV diagnosis, but I haven’t grilled a neuro about this aspect of things. The only explanation I got a while back was that migraine slows the brain. I would love to hear from anyone who may have discussed this cognitive aspect with a doctor and has any further info about it. I am seen on the NHS in England so have to wait an eternity between each appointment. I’d also just love to hear from anyone who can relate to what I’m going through.

1 Like
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Cognitive difficulties is a major part of my syndrome, although the dizziness/disequilibrium is the most painful and disabling to me. I have always had a very good, sharp mind but now I feel demented. I believe it is part of the migraine, although I have not discussed this with a doc. I have read many times that anybody with dizziness has difficulty thinking and concentrating - it’s expected.

Your description of the visual symptoms rings very true to me - I feel like i’m looking through the bottom of a pepsi bottle - very surreal. And everything is always in motion. I wonder if the world will ever seem real and solid to me again.

You also mention stress as a trigger. Although this illness has been sneaking up on me over the years, I suffered a very major trauma just before my symptoms became 24/7 and disabling - before that they were simply a discomfort i lived with. I do believe that I am PTSD and my migraine is the result.

Good luck to you in your treatment.

Julie

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I can also empathise with the brainfog/cloudy thinking. I do think it’s part of being dizzy cos people with Meniere’s complain of the same thing. Let’s face it, it’s very hard to concentrate on anything much when you’re struggling to stay upright. I also think the part of the brain which deals with balance has a cognitive function which is affected.

Julie - have you sought treatment for your ptsd? I just ask because there are some very quick, effective treatments available these days. I know because my husband successfully treats ptsd with something called EMDR (eye movement desensitization and reprocessing). It’s approved for use in the UK & the US I believe.

Best wishes
Christina

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Christina,

I had no idea there was such a treatment for PTSD. I will certainly look into it - thanks!

Julie

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Hi there,

Thanks for your replies. Apologies I would have replied sooner but kept on having difficulties getting in to the site, not sure why.

Julie, I was concerned about the effect that propranonol has on my memory. I did some research and found out it can impact on memory and in fact they are currently doing research that suggests it has an effect on PTSD, presumably by somehow blocking the effect of traumatic memory. As it’s also a migraine preventative it might be worth taking it if you haven’t already.

Restrospectively I also realise I had warning signs for years that this was on the way - and I experienced a period of stress and emotional upset prior to it suddenly erupting in to a 24/7 condition. I am pretty sure that was the trigger.

I’ve been aware people with VN or menieres experience cognitive problems. Although I’ve noticed that not all MAVErs experience them. It seems to be random who gets it and who doesn’t, which made me wonder what’s going on when the migraine impacts in that way. I’m hazarding a guess that no neurologist will be able to provide a definitive explanation. I get the impression that medically migraine isn’t fully understood.

I’m also curious that the nature of the cognitive problems has changed over time. Initially it was a pea soup fog in my head, these days it’s more of a dream like, slowing effect. Difficult to describe the difference but it’s definitely there. These days the best description I could give is like the effect of not having slept for days and days. My body feels ok but my brain feels like it’s been sleep deprived. It’s very mentally disabling and I loathe it.

Are you working when ill and if so does the cognitive aspect undermine your ability to do your job?

Are you both taking preventative medication?

H

6

I no longer work. I had to retire from my job as a nurse about 6 years ago, at the age of 44 because I couldn’t cope with being so dizzy and caring for others. I too had a prolonged period of stress before I started to become ill.

I don’t take any meds at all since my doctors have never been sure what it is I have & I’ve had many diagnoses over the years. I believe my symptoms fit the MAV picture but doctors in the Uk don’t know much about it (at least the ones I’ve seen don’t) so much of the information I have, I’ve found out by my own research.

Chris

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Hi Christina,

I’m also in the uk. Have you heard of the neurotology department at the national hospital of neurology and neurosurgery in Queens Square. I had a terrible time getting a diagnosis, until I was lucky enough to be put in touch with a man with vestibular neuritis who’d been seen there. I was seen under the same consultant as him, a lovely woman called Dr Rosalyn Davies. My GP sent me on the NHS after a little badgering as I was getting nowhere with the ENTs I’d seen.

If you go on the NHS you will very likely see registrars who work under her, they work on rotation, although some get to see her. I have seen both her and others and for the most part the registrars are very knowledgeable. Neurotology specialises exclusively in dizziness and vertigo disorders and they are fully conversant with MAV and frequently diagnose it. I am now seen both there and the neurology department in that hospitals. Once they suspected MAV they referred me on to neurology.

If you haven’t already been it is absolutly worth going. You simply won’t get the same non plussed response in neuro - otology as you get elsewhere

I’m so sorry you had to give up work competely. I didn’t work for about two years but then a migraine preventative afforded me enough relief to go back. Although as I said I still get relapses. A very good friend of mine I made on a healthboard is a children’s cardiac care nurse. She was also unable to work for a year but with a migraine preventative she has been back at work for 2 yrs. She recovered completely with the drugs, is off them and has never looked back.

best,

H

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I recently came across an article that explores the fact that dizziness causes cognitive issues. I also think the vestibular disorders association (VEDA) wrote about it:
Here’s the pubmed link
ncbi.nlm.nih.gov/sites/entre … s=17312336

Here’s the abstract:
1: J Vestib Res. 2006;16(3):75-91. Links
Cognitive-vestibular interactions: a review of patient difficulties and possible mechanisms.

Hanes DA, McCollum G.
Neuro-otology Department, Legacy Research Center, Portland, OR 97232, USA. douglas.hanes@gmail.com
Cognitive deficits such as poor concentration and short-term memory loss are known by clinicians to occur frequently among patients with vestibular abnormalities. Although direct scientific study of such deficits has been limited, several types of investigations do lend weight to the existence of vestibular-cognitive effects. In this article we review a wide range of studies indicating a vestibular influence on the ability to perform certain cognitive functions. In addition to tests of vestibular patient abilities, these studies include dual-task studies of cognitive and balance functions, studies of vestibular contribution to spatial perception and memory, and works demonstrating a vestibular influence on oculomotor and motor coordination abilities that are involved in the performance of everyday cognitive tasks. A growing literature on the physiology of the vestibular system has demonstrated the existence of projections from the vestibular nuclei to the cerebral cortex. The goals of this review are to both raise awareness of the cognitive effects of vestibular disease and to focus scientific attention on aspects of cognitive-vestibular interactions indicated by a wide range of results in the literature.
PMID: 17312336 [PubMed - indexed for MEDLINE]

Sort of unreadable, but the bottom line is that there is a link. It makes sense.
It’s good to hear stories about people who were able to resume their lives. (I like the one who never looked back…)
Kira

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Hannah - I am struck again by how well you describe your symptoms then i remembered you’re a screen-writer :slight_smile: You’re good!

Thanks for the tip on propranolol - my biggest fear with that drug is the depression/fatigue SE. I suffer with crushing fatigue and depression to begin with - if i had any more i’m not sure i could function at all. But, this horrid illness is so bad, and the experimental PTSD stuff is interesting, so i’ll research it - thanks.

I think I understand that you are saying there are two processes going on - the dizziness separate from the brain fog. I would agree. In fact, now that I think of it, i was dizzy for years before starting to feel “demented.” The brain fog hit rather suddenly and was very scarey at first. I’ve gotten used to it. It’s embarassing, but it doesn’t freak me out. I really thought I had suddenly developed severe dementia on top of everything else. I have felt both a feeling of paralysis of my ability to think and also a feeling of being sleep deprived and frazzled.

I am very lucky in that I own a business which I run out of my home. If my clients saw me they would all quit! My business also mostly runs itself. I have to check on it intermittently throughout the day, but i probably don’t spent more than a couple of hours total. Otherwise, I would be on disability, for sure. I’m house-bound and spent most of my time in bed. This is due to the crushing fatigue along with the violent dizziness the longer I’m up. That’s what I loathe most, and loathe is exactly the word for it.

I just got my diagnosis a month ago and my oto-neuro decided to put me on Zoloft for no other reason than it’s a favorite drug of his. He claims to have cured hundreds of people with this drug and i think he wants to add me to the list. This is fine, but if this doesn’t work he wants to jump right into Topamax. If it gets to that point, i’ll ask to be tried on something easier tolerated first. I’m med-sensitive, to i’m increasing my Zoloft dose very, very slowly. So far, so good regarding SE’s, and my dizziness has stabilized, at best, so wish me luck.

Christina - I’m so sorry you had to quit working. I’m sure, like me, you never imagined being this sick, especially at such a young age. I got alot of my initial information regarding this illness from the book “healing your headaches” by Buccholz from Johns Hopkins in the USA. It’s very informative and thought highly of by members of this board.

Good luck and stay in touch!

Julie

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Thanks Hannah for the information on the hospital in Queen’s Square. I have heard of it but I’ve not really considered asking for a referral there before.

I must admit, I’ve sort of given up on a diagnosis and over the years have just become frustrated and depressed at not finding an answer, so have decided to try to get on with life as best I can and not dwell on it all too much. I paid privately some years ago to see a specialist at the Leicester Balance Clinic - he wasn’t a MAV specialist & he didn’t suggest further investigations for MAV either. He just told me it wasn’t MD in his opinion and the tests there showed I definitely did have a problem with my balance.

I guess I also read other people’s posts especially from those who are on meds and I don’t feel terribly optimistic that the side effects of some drugs aren’t worse than the dizziness I live with on a daily basis. I have this idea (& Iguess it’s something to hang on to) that when I get through menopause I may feel a whole lot better. My symptoms are generally much worse around and during menstruation.

Julie - thanks for your support. I mourned the loss of my career for many years but I’m too unreliable to be able to hold down a job. Thankfully I have a very kind and supportive family, who’ve got me through all this.

Christina

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I know this thread has taken a different course, but I thought I would post on the original topic.

cognitive issues - brain fog?

Let’s see now, 2 + 2 = ???

Oh, I know that one, give me a moment or two.

4!

Now, why was I adding 2 + 2?

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Hello all,

Thanks so much for your replies.

Kira, thanks for the article, interesting stuff. Although it doesn’t explain why some people who are MAVers get the brain fog and some don’t. I guess there’s still a heck of a lot they don’t know. I know at least a couple of people who definitely have MAV who never experience it. All I know for sure is I wish I didn’t.

Julie, I’ve never tried zoloft, although I did do two months on topamax. The problem with trialing drugs is that one persons cure is another person’s nightmare. I had a bad time on topamax - nothing I couldn’t handle, it just didn’t fix me and made me worse. Although I’ve got to say - the weight loss on that drug is astonishing. My GP joked that some women kick up a fuss when the time comes to get off it as they look so sylph like on it.

Christina, I know how depressed and disheartened you can get in the search for a diagnosis and an understanding doctor. All I can say is that the neurotology department in Queens Square are fully aware of MAV. They would definitely try and help you and give you at least a working diagnosis. I now know many people who have gone there and none of them have been treated dismissively or stared at blankly. They know their stuff.

Brian, yes, that just about sums it up, lol.

H

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Hi Hannah, yes I’m the same, in fact at times ive even stuttered.
mixed words up, and slurred my words alot, my memory is shot, short and long term. my vision is symilar to what you’ve described. and my hand eye coordination is shocking. if I was to take note of my surroundings say to look at a brick wall or something with pattern it would appear to slowly swirl into itself ect.
a noisy room can set my nerves right on edge. so that I have to walk out . and at times even my own vioce can be to loud.
half the time at a dinner party or get togther I’m spend most of my time pretending to cope while inside i’m slowly fading away.
jen

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— Begin quote from “jennyd”

…half the time at a dinner party or get togther I’m spend most of my time pretending to cope while inside i’m slowly fading away.
jen

— End quote

Oh, I know that feeling all to well. :frowning:

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Absolutely! As a sufferer of chronic dizziness for over 2 years, “brain fog” has been the most distressing aspect. What a relief to know that I am not alone in this. I had severe “brain fog” for about a year in which I literally felt as though I was separated from the world by some invisible barrier. I was here but not here if you know what I mean (functioning on authomatic pilot). Fortunately, that feeling has abated to a tolerable level and I am now left to cope with a general dizziness sensation which never goes away.

Lena

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Hi Hannah,

I completely understand your brain fog symptoms. I experience exactly what you described. And it is the most disabling part of all of this for me. I think it is very difficult when your work requires sustained concentration or complex thinking.

I was just wondering whether you have noticed anything which triggers it other than light? I find that visual motion triggers it mostly, and that can include reading, computer screens, or especially trying to maintain eye contact with another person during conversation. Trying to maintain focus on something that is moving is very difficult for me. There are also days where I feel generally worse.

Currently I am taking Lyrica. It does seem to be helping but I am not getting my hopes up too much as often treatments end up being so disappointing.

Rob

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Hi Rob,

Not sure if I know what the other triggers are. Daylight and sunshine are definitely triggers, that is generally immediately apparent. I can literally think better and often feel better all round as soon as I hit the evening. Although if I am in a particularly bad phase of a relapse, things can sometimes crank up for no apparent reason. The light sensitivity becomes very extreme and it is almost impossible to think straight.

Other than that, interrupted or lack of sleep can also exacerbate things. Working at the computer can make things worse, but I think that again, that is the light coming off the computer screen. Although if I’m very symptomatic it can simply be the act of trying to concentrate. Stress can also be a factor, although not always, and busy environments with lots of visual information. Bookshops come to mind.

I have spent fairly long periods almost symptom free on propranonol. The biggest trigger by far to bring back all the symptoms is a panic attack. It is pretty much a given that if I feel fear on any grand scale I will have a big relapse. Obviously I try and avoid any panic at all and have had to learn suppress any major fear.

I am experiencing some relief now on a higher dose of propranonol. I still can’t think straight in the daylight and sunshine makes me fairly moronic. But I am much better a lot of the time indoors at the computer and in artificial light. I’m sure you will know what I mean when I say the joy of simply being able to think straight and to be analytical is huge. It’s just very unstable, and like you, sometimes it’s just worse for no apparent reason.

I think I am about to go up on my propranonol again, although I am losing hope that it’s going to work this time and think I may have to introduce a second drug or try a different one.

Have you experienced any relief on other drugs? Do you experience light sensitivity? What relief of symptoms has the lyrica afforded you so far?

best,

Hannah

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Hi Hannah,

I am not light sensitive in the way you describe, although I do think it adds to the total visual stimulation. I think there is a threshhold of visual stimulation for me above which things go haywire. It is literally like something in my brain goes into overload like a computer freezing or slowing when you have too many windows open at one time! Do you get brain freeze simply being in daylight or sunshine or does it only happen if you are watching something or doing some kind of activity? Like, would you get it if you were just sitting outside in the sun and not moving etc?

The Lyrica has helped significantly in preventing brain fog and I think it has raised the thresshold alot. So it takes alot more visual stimulation to make me dizzy. I have the same thing with supermarkets, book stores, busy places etc and the lyrica has definately helped with this. It seems to me also to have reduced any anxiety. There are very good studies out that show Lyrica is an effective treatment for generalised anxiety disorder. Maybe you should talk to your doctor about trying it.

I am curious about how your condition started. Was there a triggering incident or incidents? Also, do you have ear symptoms such as tinnitus, fullness, popping etc?

Rob

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I have also found that about Lyrica (and Neurontin) that it has completely wiped out any anxiety I have had. I eliminated it mostly by ditching caffeine, but then finished off the remainder with Neurontin. I have a long family history of anxiety disorders so I have been encouraging family members to try it as they are currently on rubbish old drugs like MAOI’s.

20

Just before it all started I had been through a period of huge stress and upset with work. I was just coming out of that and feeling better about everything when it hit.

You asked about ear symptoms – hard to answer this as they still don’t know and probably never will, if this started with viral lab which triggered an underlying migraine condition or if it has been migraine all along. My symptoms in the first 18 months or so were different from what they are now. Then I had every ear symptom in the book. My ears were full to bursting, I had ear pain on and off, stapedial muscle spasm, popping, crackling alongside pea soup brain fog 24/7, cronic dizziness, bouts of severe lightheadedness and an almost constant, when sitting or lying, sensation of movement. I was too ill to work.

Things changed as time went by - the full ears diminished, the dizziness became less profound, I was getting back in to work but then started to experience what seemed more like episodes - lasting weeks at a time - then stopping. It was at that time that the light sensitivity kicked in with a vengeance which was the big indicator that I was now dealing with migraine. That’s when I started the propanonol. Along with the other symptoms which I mentioned in my first post, I no longer experience the full ears but I do always get increased tinnitus - it doubles in volume during an episode.

Prior to the onset of this five yrs ago, there were what I didn’t know were warning signs. Sudden onset of tinnitus age eleven. A year of unremitting pain in my sinus area in my twenties which I now know was undiagnosed migraine. I also had minor dizzy spells for a few weeks at a subsequent point. My grandmother was also a migraine sufferer who experienced dizzy spells all her life.

Sunshine can trigger symptoms without anything else going on. Heat is also a big factor. That said, if I am not actually in an episode I can tolerate both. It seems once the migraine is active that’s when the sunlight/heat, other triggers kick in.

I will keep the lyrica in mind. The epilepsy drugs aren’t wildly attractive to me because of a rubbish experience with topamax. It didn’t shift any symptoms and made the cognitive problems twice as bad.

In terms of anxiety - the problem I have is that the type of anxiety that triggers my symptoms isn’t generalised, it’s very specific. There have been 3 huge relapses in the last two or so years, all of them caused by panic about a specific event… Once a job interview for some freelance work I really wanted, once an excruciatingly painful hospital test and once a fear of flying. It’s the kind of thing anyone without mav might panic about and be fine, but for me it’s disastrous. I am beginning to think that to never relapse again I would have to reach zen like levels of calm.

Were your symptoms triggered by something specific? How long have you had this?

best,

Hannah