Am I crazy for wanting to try keto? Food struggles and need guidance

I’ve been feeling extremely confused about what to do recently. I feel like there’s so much information coming from different angles. I was on Effexor for about 2 years and stopped it November 2022. I went up to 75mgs. Helped anxiety but didn’t seem to help the swaying that much. Had also briefly tried the migraine diet but it didn’t help. Started feeling really bad about symptoms again in June so started Amitriptyline. Had a racing heart as a side effect so had to stop. I also started the migraine diet again and cut out gluten (I’m not sure why I cut out gluten no one told me to do that). At some point late October and November I was feeling much better. I wasn’t sure if it was because I was distracted with work and classes but I was suspecting that it was maybe the diet or maybe cutting out gluten. I then started feeling bad again about a month ago and am wondering if my diet is even doing anything??I’ve also been very confused about the next step I should take. Right now I’m in between trying keto or going back on Effexor and getting to 150mg (my Dr told me that that is the dose where migraines tend to improve, though ofc it can happen at lower doses too). I talked to two of my neurologists briefly about keto/ low-carb. Dr. Rauch told me they don’t know about any relation between low carb and vestibular migraine and my other neurologist told me that although there are various diets that may help migraine there is no specific one that will help and that keto is more known to help epilepsy. I feel like Drs will be less likely to recommend a diet vs a drug due to there being less data, however it makes me wonder if I should even try keto or go the classical route and just take the medicine and shut up about it :joy:. I don’t know I just feel so lost and confused and need some guidance.

I feel like I’m just really struggling with knowing what I should and shouldn’t eat and every time I eat something I dont know if maybe it’s making me feel worse, this is of course giving me a bad relationship with food. For example, if I try keto I will now be worried to eat nuts even though nuts are a big staple of keto. Or now I, by my own volition, cut out gluten and thought that it was making me feel better in November but now nothing really changed and I feel worse again and now I’m scared to introduce it back again. Oh why do I have to make things more complicated for myself :joy::joy::joy:.

How frustrating! For what it’s worth, I’ve diligently tried different diets over the many years I’ve been dealing with VM and none of them made a bit of difference. Eliminating alcohol completely is the only thing I can confidently say has reduced my symptoms on a day-to-day basis. Other than that I’ve never identified any triggers – one minute/day/week/month I’m doing great and then I’m not. Now I focus on eating a reasonably healthy diet and maintaining a healthy lifestyle including exercise and a regular schedule. And despite my best efforts I still take meds every day and have bad flare-ups. It stinks.

You can certainly try different diets but don’t beat yourself up if you don’t see results – there is no magic bullet. If you’re not already doing so, it might help to keep a migraine diary where you track the onset of your symptoms, dietary changes, meds, etc. and look for patterns.

I’m not a medical professional but it’s seems unlikely to me that something you’re eating is causing this condition, it’s way more complex than that. It’s not your fault you’re sick, Annae, you have a crappy neurological condition. Like I said, it stinks. :slightly_frowning_face:

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Keto is a very drastic metabolic shift for the body to have to undergo. If you want to go on it/try it, you should do so with your Dr’s blessing in addition to be supervised by an RD…people treat Keto like its weight watchers or something these days and I think it undermines just how dramatic of a shift it is for our bodies to have to experience when it comes to metabolism

I don’t know too much about the Keto diet, but have tried many diets over the years, (both for ‘head health’ and slimming) and truly, although some make me feel better in myself, I have never found anything that I eat really influences my Menieres’/MAV/whatever else …except, as sfnative say, to cut out alcohol! Red wine was my tipple of choice, and for some reason my body became intolerant to the degree that it’s just not worth it for me any more. I truly think that every one of us are different, and unless you can actually pinpoint something that does’nt agree with you - after trying the offending food a couple of times for confirmation - it might be better to go with makes you happiest. You don’t need to deal with a bad relationship with food as well as all the garbage that comes with your primary condition. Just to mention that I’m not a medic, just sharing from personal experience.

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Dr. Rauch is one of my docs too and he told me in my very firsy visit that he doesnt think diet plays much of a role. There’s lots of info about tryamine out there (nuts, avocados, etc.) that affects migraine sufferers so I’m sure some people are affected. I can get weird temporary symptoms from too much salt occasionally (french fries or such) and no one ever talks about that. It’s going to be whatever your body says it is.

I do keto and i find it helps me immensely. It makes sense because sugar is hugely inflammatory and bad for your health in lots of ways. When i go off keto, i have a few days of symptoms and then it kind of settles down. But never as good as when I’m on keto - healthy keto, not bacon cheeseburgers and chuffles :grinning:

This whole thing is trial and error. You could be triggered by almost anything it seems to me - there are just lists of things more often to do it. So we all start with those.

I also see Dr. Priesol in Dr. Rauch’s office (though that’s not usual) and he suggested some supplements like Riboflavin and Magnesium. Lots of people have tried and found success on Migralief which has a combination of supplements against migraines in them.

Good luck!

Do you do keto at the same time as other meds?

Yes. Amitriptyline 20mg and klonopin .25mg before bed.

I concur that a specific diet didn’t seem to help … except I now have suspicion that one kind of diet might!:

I’m personally working on fasting. I’m having a late lunch and then call it a day and I then don’t eat until breakfast.

It could be just coincidence but this leads me to have much less tinnitus, especially obvious in the morning.

I note that @MNEK18 has also been having some luck with it

You may have noticed that GERD pops up quite a lot on the forum and I wonder if there’s a connection with that and the Eustachian Tube … irritation that swells the tube so when closed it applies pressure to the inner ear …?

… the problem seems to me that a lot of research seems to happen in silos and there doesn’t seem to be much if any functional research that combines gut health, physical ear health and neurology … but happy to be corrected!

My otoneurologist said that a specific diet most often doesn’t help, although they didn’t really explicitly include fasting as a “specific kind of diet”, they were referring to specific food types.

As @mazzy points out: your mileage may vary … but if you are desperate, give it a try for a couple of weeks, it’s likely only to be beneficial it’s also a fantastic way of controlling weight.

OTOH, skipping meals often triggers migraine for me so fasting isn’t an option – I need to eat regularly or risk taking a rapid dive. When I do have migraine, eating a full meal (snacks don’t seem to help) often lessens my symptoms. So bottom line, it’s all trial and error for each of us. Unfortunately.

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your amitriptyline and klonopin are probably doing a lot more of the lifting than the keto is…just saying. keto is fine (and its actually medically sanctioned for migraine/epilepsy) but are you on that because the doctor told you to or are you just trying it?

I’ve been on keto for many years and it helps me eat as healthy as possible. Sugar is not my friend. I never suggested that keto helps more than the meds. I’m just saying it helps ME. I also said that everyone has to find their own triggers.

and you’ve actually been in full blown ketosis for many years? Do you get regular labwork or anything that looks at this?

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No, I’ve been in and out of ketosis for probably 5 years. I can tell when I’m in it - my breath smells a certain way, and my body feels differently. I don’t get the ups and downs of sugar intake, which makes me so tired. I have so much energy and actually have a bit more insomnia than usual. It just feels cleaner. I get normal lab work every year - my good cholesterol is basically the same as my bad cholesterol - btwn 80-90. Keto doesn’t really seem to affect it that much, except make it better. When I’m off keto I’m a bit of a sugar addict so I eat somewhat poorly and feel like snacking all the time. On keto, I’m just not thinking about food that much. It’s a relief.

I certainly believe that there is a link between ear/brain and gut. When I was still firmly in the Meniere’s camp, I often found that a ‘run of episodes’ was preceded by a one day bout of tummy upset…usually only made the connection AFTER the episodes started! :roll_eyes:
Again, I must agree with sfnative that I NEED to eat small meals regularly, and often feel better afterwards. I cannot even consider taking my early morning trip to town without something in my tummy - even though it’s only about 3 Tbs of oats/nuts/fruit. And yes, snacks don’t help.
As always - to each his own - sadly there is no universal solution, and usually we have to find our own way

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Yeah I’m a huge fan of breakfast!

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This is what happens to me as well – on good days, I can skip meals with no consequences. But when symptoms flair, I am constantly hungry and only a belly full of food makes me feel good again. It’s meant a small weight gain but I’ll take that over cognitive dysfunction.

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Keto screwed me all up. My estrogen levels went through the roof. Not sure if this is what caused my Lupus or if it was a result of my condition that I had such a hard time. The amount of protein was too hard on my body. I was only able to lose 50 lbs., which I quickly gained back and then some, I guess due to the extreme inflammation in my body. I was under a Dr.'s care. Proceed with caution.

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Yes; keto is an extreme metabolic shift that the body goes under when its primary energy source (glucose) is deprived. It is primarily a survival response – that being said, the diet has shown efficacy for treating various neurological disorders (epilepsy, very prominently) and has shown some evidence for migraine.

Whats clear though, and contrary to what diet influences would have you believe is that you dont just “go on keto” – it should be doctor sanctioned and you should ideally have an RD managing your diet. Also the idea of going in and out of ketosis doesn’t seem to be productive nor particularly safe – its hard to imagine the whiplash between these two metabolic states is anything other than stressful to the body.

That is all to say, Keto isnt a BAD thing per se, but its a serious thing. You’re fundamentally changing the way your organs are receiving energy and shifting your metabolism towards a mechanism that is akin to a ‘back up plan’ for when you don’t have glucose available.

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I’m on keto most of the time (not too hard core about it - still drink wine, though don’t eat any sugar, don’t count macros, etc.) It helps me in every way: energy is even, not up and down; food choices 300% better; weight down so BP down; mood better. The whole ship is more stable. It is a bit tough in the beginning - insomnia, keto flu, etc., but those can be mitigated by going up slowly.