Myoclonus and Diet

[AnnaW]

Hello
Amongst all the other kinds of T I have developed myoclonus. Its triggered by my left (deaf) ear starting with a fullness and a roar and then the myoclonus occurs on the right ear. IT hapenns between 1 and 6 times in 24 hours. Night or day, sleep or awake. I am finding it difficult.

I have been reading the myoclonus (not if middle ear but in other muscles) is associated with epilepsy and I feel mine seems to be kick started by the brain. So I'm thinking about ketogenic diet to help with it.

Has anyone ever tried a ketogenic diet for myoclonus?

I am nervous of trying it in case the menieres and other ailments I seem to be collecting become worse in doing so. But I am getting desperate enough to try.

 

[AnnaW]

I have now managed to go grain and dairy free and none of it has made any difference to the tinnitus or menieres. I haven't tried ketosis yet.

'Paleo and Meniere's'
It was interesting to note that going wheat and dairy free meant a reduction in my sodium intake (these are really my only sources of sodium) and as a result I had a meniere's attack. I had a really salty hot drink and within an hour the vertigo had diminished.
I have now had to add salt to my meals for the first time in a long time which feels very strange.
I don't think I am going to stick with being grain and dairy free because it has offered no benefit and only inconvenience.
It is clear that the sodium and probably other electrolytes are very important in staving off meniere's attacks.

I wish there was a link with the tinnitus and the diet but I just cannot find one. Yet.

I have also tried low salicylate which had no effect either. In fact my Dad swears by aspirin to help with his meniere's attacks.

Anyway there it is. Perhaps when I have energy to persevere Ill try ketosis.

 

[steinamo]

I'll respond by saying that I attempted ketosis a few weeks ago, and it really seemed to be working. But then I had a setback (don't know exactly why) and so I kind of said "fuck it" and just started eating/drinking whatever again. Over the last weekend I ate a lot of pizza and drank a lot of beer and on Sunday my T was almost the worst it had ever been. I got back home (I had been traveling) and I've stopped drinking and gone back to eating the way I was when I went keto. I'm only two days in and I already feel infinitely better. My T is way, way down. I'm hoping by week's end I have it back under complete control. I don't know if it's causal or not, but there's definitely a correlation and if the results continue going forward I think I'm going to adopt this lifestyle long term.

 

[markoana]

I am trying for a months to find any relationship between food and t.
Sometimes it seems that healthy food, lot of water (no juice) makes t better.

But many member here do not accept that as valid, because food can not go to
through blood brain barrier and affect t...so. I do not know what to think....

 

[steinamo]

I thought it had something to do with your body producing ketones. In this thread, member Sound Wave posted an article:

https://www.tinnitustalk.com/threads/diets-effect-on-tinnitus.552/page-5

"It says, "Ketogenic diets seem to favor glutamate becoming GABA rather than aspartate." As we know, GABA is an inhibitory neurotransmitter and asparate an excitatory and low GABA levels can increase tinnitus. "

I don't know if this is what's happening in my case, but I can definitely say that today is my best day in over two weeks.

 

[steinamo]

I just want to share that I've severely limited my carbohydrate intake since Sunday, and right now I'm at 0 - 0.5 T. I'm truly astounded. It's almost pure silence right now.

 

[RaZaH]

What is a Ketogenic diet ? I will stop eating alltogether if that helps.

 

[steinamo]

I'd suggest going to www.reddit.com/r/keto for more information on ketogenics. I'm not an expert.

 

[AnnaW]

Hi
Thanks for replying.

I am also beginning to think that ketones and short and medium chain fatty acids (S/MCFA) are beneficial. But I need to give it more time.

I have been eating a low carb high fat diet (HFLC) with loads of coconut milk as according to wikipedia (I don't have time to verify if its accurate so I'm just going with it) you can have a slightly higher carb ratio with the S/MCFAs that are in coconut as they can be used 'more easily' by the brain for energy and thus contributing to a more 'ketogenic state'.

Sorry I feel I have written over simplified stuff resulting in being unscientific but I'm short of time and so so so sleep deprived. (Why won't my child sleep!?!?!?!?).

Anyway. After doing this I seem to have had (and I don't want to jinx it) no myoclonus. No spasms of whatever muscle it is in my ears and no 'raging' of my deaf ear tinnitus. I mean my T is a background level with various fluctuations still but I'm in what I would describe as a good spell right now.

So I will try a higher carb period at some point and see what happens. For information, my diet was typical food pyramid style previously, but low in sugar. Interstingly my Dad has menieres (cause of my T also) and he also found benefit in his vertigo from a HFLC diet, and continues to use coconut fat and milk in his diet. Also, he has borderline diabetes and high cholesterol and his blood tests for these improved on this diet.

https://en.wikipedia.org/wiki/Ketogenic_diet
Above is the wiki link if you skip down to 'Variants' section you see the bit about MCT in coconut

 

[AnnaW]

What is a Ketogenic diet ? I will stop eating alltogether if that helps.

It is where you obtain most of your energy from fat as oppose to carbs. So you have low to moderate protein, very low carbs and lots of fat. It can be used in childrena nd adults to help with epilepsy where medication has failed. It is also popular in paleo food communities and in self treatment of autoimmune conditions like MS. It is also popular for weight loss becuase it dulls the appetite, however it is easy to overconsume calories imho becuase you are eating calorie dense food. Or maybe thats just my experience of it

 

[AnnaW]

Well after doing a test of eating more and more carbs gradually over a few days the tinnitus is heavier louder and the myoclonus began again. So I'm going to go back to keto/high fat low carb diet and will see how long (and if at all) it can help with the myoclonus and tinnitus. Both of these seem to have 'phases' of being 'dreadful' and 'less dreadful than usual' that I won't be usre until I've done a few months on this diet without the myoclonus coming back. So we'll see.

 

[Jon B]

I'm experimenting with a ketosis diet as well, mostly because I gained a lot of weight when I got my T. Stuffing my face with food and not caring about appearances for almost a year tends to do that to you heh.

My main problem with a low carb diet is that my mood gets really bad when I go without carbs. That, along with my T is not a great situation. Anyone else have that problem?

 

[steinamo]

Just wanna chime in and say that I broke my diet last weekend (and also went to a concert). My T has been varying degrees of shitty all week. I'm currently in a living situation where strictly controlling my diet is pretty difficult. Next week I move into my own place where I'll have more room and freedom to start preparing my meals for the week and be able to more strictly control my diet. I don't know if ketogenics was helping or not, though I definitely had correlations between quieter T and carb-restriction. For right now though, there is ringing and unfortunately not much I can do about it. I'll report back in a couple weeks when I get settled into my new place and can more scientifically approach this particular treatment. All other things I've tried thus far have not had any demonstrable results.

 

[steinamo]

I'm experimenting with a ketosis diet as well, mostly because I gained a lot of weight when I got my T. Stuffing my face with food and not caring about appearances for almost a year tends to do that to you heh.

My main problem with a low carb diet is that my mood gets really bad when I go without carbs. That, along with my T is not a great situation. Anyone else have that problem?

Honestly I didn't notice it having any effect on my mood. If anything I was actually probably a little more upbeat since I was/am losing weight as a byproduct of the diet which is pretty awesome!

 

[AnnaW]

well it'sbeen about 4 days of low carb high fat with plentiful coconut milk. but I'm sad to say my tinnitus and myoclonus has been absolutely awful.
on positive note I have loads of energy despite the usual sleep deprivation.
on goes the search.
why does . it seem to go through these phases???
I realise that 4 days is not long to try the diets effects but it's just disappointing. I guess.

 

[U001]

 

[valeri]

@AnnaW
@steinamo

Any further improvement on keto diet?

 

[AnnaW]

hi
i havent attempted keto since the above post. the myoclonus is really bad at times. i spoke with ent last week and he said if it wernt for the fact i am single sided deaf they would just go in and the muscles, but as i have only one functioning ear the risk is too high.
on another note, he mentioned ramsay-hunt syndrome re my left ear, and interestingly since the the myoclonus has been bad, i have had singles 3 times in 7 months. I am now searching for ways to combat shingles recurrence as the varicella virus seems to have a large relationship with damage to inner ear. i asked the ent about long term antivirals but he said they were a poison like most drugs and not intended for l/t use.
i am not sure whether keto diet is good or bad for fighting shingles, there is much pseudo sceince out there with paleo diet blogging. i could really do with a good chat with an immunologist!!

hows things with you?

 

[steinamo]

I haven't done the keto diet in some time. I'm thinking now that my T might be more related to muscular stress than anything. I want to go to a doctor, but I feel like I have symptoms of Thoracic Outlet Syndrome.