Two questions. I love to exercise but I am suspicious that any kind of intense exercise makes my TN1 worse. I used to do boot camp style interval workouts a lot. It seems like my first bout of TN started when I had been doing these kinds of workout for about 6 months. I have stopped the really intense workouts for various reasons including the meds I have to take for this disorder (that make me dizzy and tired). I did a relatively short interval style workout last week because dammit I just want to get back to normal, and am having a bit of a resurgence of symptoms after a couple weeks of relative stability. I do have a blood vessel close to my nerve that could be causing this so I guess it would make sense that this type of exercise could be bad. It is just so frustrating! Anyone with experience? Walking is just not cutting it for me.
Second question is if anyone has tried doing a ketogenic type diet to control symptoms. I’ve heard this is a huge commitment but that it might help. I am desperate and feeling depressed. I hate the meds. I hate how I feel. I hate the shocks and pain. I will try anything. Anyone had any success with a keto or anti-inflammation type diet? I’m definitely going to eliminate sugar over the next week (and reduce overall carbs) and increase healthy fats as a start but hoping for some positive feedback to motivate this big lifestyle change.
I wonder if you could get away with things like bicycling or swimming–really good exercise, but nothing that increases pressure in the head. I don’t seem to notice any increase in symptoms with intense exercise (my job can be very physically demanding), but then I have ATN or TN2 or whatever you want to call it, rather than TN.
I eat a pretty healthy diet. I’ve been applying some of the principles of The Wahl’s Protocol, basically using food as medicine, and following Paleo/Primal guidelines. It makes sense on so many levels and I generally feel healthier. I think things are moving in a positive direction, but it is a slow process, and it seems like two steps forward, one and a half back. Today I’m having a bad mouth day, it is very frustrating (possibly from extra stress).
My diet is not ketogenic, but it is lower carb ( I would say about 60-80 grams a day now). I eat very little sugar, no artificial stuff, and emphasize organic, pastured, wild caught, and non-processed food. For instance breakfast is typically 2 eggs that are beautiful dark orange pastured ones with uncured bacon. Lunch a large dark green salad with homemade dressing and soup, and dinner pastured meats and veggies, some gluten free bread or tortillas. Unless I’m bad and have pizza like tonight!
Really, you have nothing to lose by improving your diet! Give it a shot. The only “side effects” I have are hair and nails that grow so fast it is annoying. And comments that I must have “good genes” because my skin looks so good. I’d be curious to see how it works out if you do go ketogenic–I can’t handle that low a carb level, it begins to affect my sleep too much.
I also noticed that intense physical workouts worsened my TN. For me, the intense workouts seemed to move my upper cervical alignment out of place, which worsened the pressure on the nerve, increasing both frequency and intensity of the shocks.
If you haven’t tried upper cervical chiropractic, I had success with that, and would recommend. Also, check some of my other posts for the Olive Leaf treatment to get rid of viral infections in the nervous system which I believe is the root cause of the demyelination of the nerves that causes them to become sensitive. I’ve been completely pain free, able to exercise as much as I want. No drugs, no surgery.
Thank you for your response! I have suspected that intense exercise may have contributed to this from the beginning 4 years ago. I started doing intense HIIT style workouts back then and had my first shocks about 6 months after starting that routine. It went away after osteopathic treatment but came back a year and a half later. Went Away again for 9 months and now I’ve been fighting this since October. I actually see both a PT and and osteopath and am seeing my PT today (who has osteopathic training) and will see what she says about my cervical alignment. My osteopath was able to help make my TN go away before when it was mild. Now that it’s gotten worse it hasn’t been as effective. Sigh. Been really struggling this week. Big time. Trying to avoid Tegretol but that may be next step if things don’t calm down. I will look into the Olive virus treatment and am also going to stop and talk to the pharmacist at a local compounding pharmacy about a capsaicin gel. Willing to try just about anything. The meds suck. I am a busy mom and I don’t have time/energy for this stupid ailment! And it’s really hard to parent when you are stoned out of your mind on meds and having shocks all the time. Hate it. It’s bullshit. Thanks again for reaching out.
Also thanks to ziggy for diet suggestions. I am trying to wean off carbs and increase my healthy fats. I have the Abascal Way book and got some Paleo cookbooks yesterday. Now if I could wean off coffee…not so easy. But I’ve done it before. I think that would help, too. Thanks for advice!!! Very helpful. I am not a fan of meds and really want to get over this so am up for anything.
My TN started after a spinning session and everytime i tried to train i would get attacks. The neurovascular conflict is the root cause of a majority of TN … The more you pump blood, the more you compress the nerve i feel. That is why i am scheduled to an MVD soon ! hoping to be able to hop on my new spinner afterwards … My story herewith.
Thank you for this reply! I just fell off a cliff again after attempting to run one day and do a light HIIT style workout the next day. Two weeks later and between that and a bad cold I was in deep misery. I just went on Tegretol which is working at the moment (and I had a good response literally overnight). I used to do super intense boot camp style workouts and started getting TN about 9 months after starting those. Ive basically decided I need to give that up until I figure this out. It’s so frustrating! I’m 42. Otherwise very healthy adult. I just want to get back to normal but I can’t yet. I may have to go the MVD route as mine just seems to be getting worse. Right now I’m just enjoying the break from shocks that Tegretol seems to be providing me and will enjoy that as long as I can. Keppra/Gabapentin only worked for about 2-3 weeks before things got bad again so I’m not holding my breath. Anyway, I appreciate your input on exercise. I’ll be questioning my neurologist a lot about this at my next checkup! I need exercise in my life!
Also want to add that I hope all goes well with your surgery! Please update and keep us posted. I’m very interested and will be following your blog posts.