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To Push or Not to Push?


#1

The last three years have been incredibly challenging. I am dealing with symptoms daily with sensitivity to everything and anything and I find myself setting goals in order to push myself forward on a regular basis. For example, I have set a goal for daily steps and pat myself on the back on those days when I can meet my “step” goal.

The weather today is cloudy with rain but decided to walk anyway despite feeling horrible. And I am left wondering if not resting when we are feeling our worst only ingrains the neural pathways that cause our symptoms. Because when I push I feel like I am only setting myself up for more short term and long-term pain. You have to live but has anyone had success by “resting extensively”? Perhaps, I need to rent a floatation tank and float for a few days and see if my brain can heal.

This is a question that I am sure many are struggling with. We all have lives and obligations. I am looking for some algorithm/formula to improve my health.


#2

Mike, absolutely push! It’s the only way to get mentally sane … but must ask you, are you on any meds? Have you tried a few options to help you reduce symptoms? You have been diagnosed with MAV?


#3

push is my answer (even though today I feel mentally drained,tired of being ill and want to scream from the rooftops)


#4

Yes, I have been diagnosed. with MAV. My ability to navigate motion is so challenging, constantly dropping things and bumping into things. I compare my brain fog with a family member with dementia. I have tried all sorts of medications with no luck as of yet. Had some success with a calcium channel blocker but had daily arrythmias so had to discontinue.

The anxiety that I have (comorbidity) is magnified with the constant dizzies and is likely a big driver “feedback loop” and have tried meds to work it from that angle but have not found any that improve my condition.

I do think taking 100mg of CoQ10 3 times a day and some magnesium glycinate powder helps to some degree that Liz85 recommended.

I may try CBD oil soon. Thanks for your response.

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#5

Yes anxiety is a big exacerbator. Brain fog is definitely a nasty migraine symptom.

Definitely ensure you are seeing a good oto-neurologist and trying all the MAV med types that are appropriate for you. See Dr. Hains flowchart:

http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html


#6

I’m with you trying to live a normal and active life. Have no idea why I came down with MAV but think it was my very stressful job, rough commute, and city life that finally got to me. One morning woke up feeling “drunk” about a year ago and have been on gabapentin since last July. Was always a walker and hiker and active but pushing myself now can bring on a real attack of dizziness and nausea. Can’t say i’m dizzy 24/7 but maybe that’s because my body is used to the symptoms? Triggers are stress, too much caffeine, too much exercise, and some foods. My plan is to see another neurologist for a second opinion and see if vestibular therapy can help cure this thing.


#7

The brain’s a wonderful thing and can cope with a lot.

I’ve written about this a lot on here, but I don’t believe Migraine is the cause of MAV. I believe that feed any normal healthy brain a lot of erroneous sensory signals that don’t correlate to what it expects for long enough and it might enter a migraine state. Migraine is just one of the outcomes of MAV. Dizziness is another, vertigo another.

The medical dogma going on here makes me mad!

MAV is defined by a set of symptoms, that’s it. In no way does it explain how a migraine could make you feel dizzy for very long periods of time or have a vertigo attack.

A real, spinning, vertigo attack must have a cause in the ear, imho. It’s obvious to me that you feel a sensation of spinning when fluid passes fairly quickly past one or more of your motion senses in your labyrinth - for that to happen there must be some kind of physical cause. A caloric test is one way to make it happen. Turning your head quickly is another, but you can only turn it so far!

If you read Dr. Hains web pages you will see that many ear conditions (BPPV, PLF, Menieres) can give you migraines, so I don’t think MAV is any more special.

My bet is that a lot of MAV cases are actually secondary hydrops - a problem with the pressure regulation in the ear - very similar to Menieres but with less or no impact on hearing. I hypothesise that in most ears, when pressure gets high enough, the fluid breaches one of the inner ear windows to the middle ear and flows out - this flow gives you the vertigo sensation. The breach (a fistula) then heals and at the same time the ear pumps out more fluid in order to equalise the pressure again. Unfortunately I bet that this ends up in hysteresis - it surpasses the healthy steady state and ends up over pressurised again leading to an inevitable vertigo attack. At all times when the pressure is too high or too low you feel dizzy (unless on meds that mask the symptoms) because the behaviour of your motion sense is compromised in that ear and not balanced with the other one. Over pressure might also have an impact on the neurons too.

I’m wondering if air gets in with each vertigo attack and this can also exacerbate the pressure regulation issue - maybe there are cells in the inner ear which check if they are sufficiently bathed in fluid and if not generate fluid themselves. This might go some way to explain the hysteresis.

It makes sense to me that in most ears high pressure would cause a leak in the window which is probably the best outcome rather than damaging an internal part of the ear - I’m betting they evolved this behaviour… That’s why I believe when MAV sufferers get a vertigo attack they don’t have increased tinnitus - because its not harming the hearing part of the ear. Menieres patients will give you a completely different story. The eustachian tube then makes double sense - a way of regulating air pressure AND a way of draining fluid! Breaches of the oval window are documented to cause tinnitus and hyperacusis - I have both and it fluctuates.

Secondary hydrops is known to come on between 6months to 10 years after an injury or pathogen insult to the ear. For me that explains why my MAV came on 5 months after minor trauma to my ear.

I have no proof of this but I believe my model explains all the symptoms I’ve experienced since this came on and imho doesn’t incorporate any fanciful idea of a migraine causing you to hallucinate any of these symptoms.

All this being said, there is definitely a huge cognitive impact of this issue and neurological medications can help loads in relieving symptoms. They don’t address the hydrops though and that’s why this thing ends up going on for months or years. I think it may eventually settle down but its probably best to take the meds so your quality of life is optimised in the meantime.

Stress probably exacerbates the pressure in the ear AND exacerbates cognitive reaction. Exercise of certain types might cause the vertigo attack to come on sooner (bending down is often said to be uncomfortable for MAV sufferers) - I know that I get most of mine in the morning when horizontal (I’m far from alone on this - do a search on ‘night spins’), and i’m sure there’s a physical reason for that - I doubt you are under most migraine stress in the morning after having had a good sleep!

However, I think moderate exercise is a must to help you cope and will help the brain learn to deal with the more noisy signals than it is used to getting, so please continue your hiking and walking - thats got to be good for you anyway!

I’ll get off my soapbox now! :smiley:


#8

I would just like to add that walking is great but don’t over do it. By that I don’t mean the distance, I walk at least 6 miles every day with my dog, but the speed. I used to do Nordic walking and was fine at the time but then really unwell for two days afterwards because I had exhausted my reserves. So I am all for exercise but not for pushing yourself to the limits of your endurance because we use a lot of our reserves trying to stay balanced so have to keep some in reserve for this. That works for me anyway, keeps me fit and able to be out and about.


#9

I would say do a bit less than you think you can do, and then you are less likely to overdo it.

i find it hard to practice what i preach though - i’m likely to keep going until i have overdone it!


#10

Hi Margaret. 6 Miles a day?? I am not sure I’ve ever walked 6 miles on the same day. Are you still feeling as well as you were due to the addition of Topiramate? It sounds like it! I do agree walking is good and especially with what you said about speed too. I used to be able to do things I can’t do now, (like go to the gym and do exercise classes) but walking at a sensible pace is something I enjoy now and I usually feel better for having made the effort. It isn’t usually very far though. I bet your dog is glad you discovered Topiramate!! :slight_smile:


#11

Hello Sarah. Yes I still walk at least 6 miles, sometimes 10 cos we keep getting lost!!! My poor dog. She is very glad I have discovered topiramate though as you say. I am so happy you are feeling better too, that is brilliant. I love your posts, you have retained your fighting spirit and full throttle ahead brilliant brain, woohoo, love it!:grinning:


#12

I just checked and I’ve been frequently walking 11km in a single day. Might have to get a dog eventually!


#13

Now is a good time for a dog James!!!


#14

@Revolving[quote=“Revolving, post:11, topic:13773”]
Yes I still walk at least 6 miles, sometimes 10 cos we keep getting lost!!! My poor dog
[/quote]

Ha ha. You will have to put a satnav on your dog, so you can find your way home. [quote=“Revolving, post:11, topic:13773”]
I am so happy you are feeling better too, that is brilliant. I love your posts, you have retained your fighting spirit and full throttle ahead brilliant brain, woohoo, love it!:grinning:
[/quote]

Thanks, actually I have had quite a bad time recently, and I haven’t been right. Either restless or abnormally sleepy, and then I got something that could have been viral Gastroenteritis :frowning: . BUT … I finally feel like I am coming through the other side. I am about to change meds so I am a little apprehensive but there is no point in sticking to something just because you can tolerate it if it isn’t actually helping (I am talking about citalopram).

I don’t seem to be able to get the topiramate above 12.5mg a day without getting sore ears, so I am coming off that as well (temporarily) and going onto duloxetine. If I can tolerate that and it helps, then I will start the low does topiramate again alongside it if needed as an extra boost against the dizziness. If I can’t tolerate duloxetine my GP has agreed to let me try lamotrigine.

He is far more open to listening to my ideas than the neurologist.

It was nice to come back here and start talking to people here again. That post from NewbieChris about the DWP prompted me to want to offer support, I hate injustice.

Anyway, glad to hear you are still doing well. The topiramate may not be affecting your appetite but I bet all that walking is tipping the scales favourably :slight_smile:


#15

I am so old fashioned that I had to check on my phone what that converts into i.e. miles. I had no idea. Almost 7. You don’t need a dog if you walk that much anyway :slight_smile:


#16

I love dogs but admit I’m not sure Id want all the mess that that would entail and my flat is no place to keep a dog. Completely understand the joy they bring though.