Can anyone give insight to working out with TN? I was very active before I was diagnosed with this 6 months ago, I ran 1/2 marathons, I was at the gym all the time and was always hiking or biking or doing some type of activity but now I’ve found aside from having no energy at all, that anything that gets my blood rushing or makes me strain causes terrible pain and attacks. With spring coming I was hopeful I would be able to get back to my outdoor activities, are those days long gone for me? Has anyone else experienced this? I’m pretty young to have this and it is just so discouraging to think about the life it’s sucking out of me and all the things it’s preventing me from doing. Nonetheless, if anyone has an answer or ideas to working out or good activities that don’t cause pain, or how to overcome that - please advise!!
Hi Gina!
I understand! I exercise so I can eat 
Seriously, I’m 50 and have had MS for 20 years and exercise is so important to keep my muscles strong and the spasms at bay. When I developed TN a year ago, I had to modify. Now understand, I certainly wasn’t running, but here are a few things that I did.
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I started using a elliptical. On the elliptical my head is rather still and I am careful not to jerk around ~~ I use as smooth of motion as possible. I also put a big ol’ fan in front of the elliptical to keep me cool. Biking probably would be better for you than running, but you will realistically have to modify it so you don’t strain too much.
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Lifting weights was OUT of the question so my darling hubby got me a Pilates machine for Christmas! It works for me because my head is stationary, on a slight incline. I can work my core, legs, arms, etc.
Do not give up… experiment, modify and quite frankly, you may have to really lighten up on your workouts. But, keep trying to figure out what works for you. For me, the most still I can keep my head, the better I am. (I had MVD surgery on the 15th of March so hopefully my TN problems will be behind me). I will always need to modify my workouts because of my MS, though.
Hang in there!
Melodye
Thanks for that insight. I hope that your TN is behind you too and that the MVD was successful in curing the pain!
I have found that the ellyptical allows me to get some exercise in, I guess I just like to push the limits and don’t like to accept that this monster keeps me from my old lifestyle. I wasn’t sure if it was my head bouncing around or my blood pressure or what triggering my pain though. From your experience it sounds like if I can keep my head still, I might be ok. I guess mountain biking is out of the question!
Have you, or has anyone tried swimming?
Pilates is a good idea too. I was hopeful with yoga initially but this whole mess has caused me to cause so much weight, I went to yoga class and was in so much pain rolling around on my mat because my spine was crunching into the floor. Maybe I need to get an extra thick pad!
swimming is out for me cause of the preasure changes in the ear! major pain!
i love to just walk, no running to impact on head moving around in all.
i also love to dance, zumba i like but i do have to be careful with quick head movements and also the music, to loud affects me alot. dance is my love so if i need to modifly it so be it cause i can’t cut it out! but any form of latin music basically just involves your core so you can just lessen the head movements to your ability.
crunches are out, anything that put stress on my neck i can’t do.
hope this helps alittle 
Gina Berg said:
Thanks for that insight. I hope that your TN is behind you too and that the MVD was successful in curing the pain!
I have found that the ellyptical allows me to get some exercise in, I guess I just like to push the limits and don’t like to accept that this monster keeps me from my old lifestyle. I wasn’t sure if it was my head bouncing around or my blood pressure or what triggering my pain though. From your experience it sounds like if I can keep my head still, I might be ok. I guess mountain biking is out of the question!
Have you, or has anyone tried swimming?
Pilates is a good idea too. I was hopeful with yoga initially but this whole mess has caused me to cause so much weight, I went to yoga class and was in so much pain rolling around on my mat because my spine was crunching into the floor. Maybe I need to get an extra thick pad!
Gina,
I don’t really exercise other than walk. But I find that when my TN is worse, then any sudden movements make it worse. My pain center doctor said that activity makes this type of pain worse. He said that activity may help other types of pain, but activity worsens TN.
Liz
Thanks for everyone’s great insight. I was gearing up for all sorts of spring fun, but I guess I will save myself the misery. I thought it was more the straining that caused my pain and not really head moving around but it makes sense. I will try to be more aware of that. I’ve only had this for a few months and I’m already considering MVD after a year of suffering. I’m only 26 and I refuse to live the rest of my life in this kind of hell. I’m just trying to make the best of it while I’m here and have all the respect in the world for everyone who has had it (or any kind of chronic pain) for years and chooses not to try surgery.
Liz K. said:
Gina,
I don’t really exercise other than walk. But I find that when my TN is worse, then any sudden movements make it worse. My pain center doctor said that activity makes this type of pain worse. He said that activity may help other types of pain, but activity worsens TN.
Liz
Gina
similar to you I was extremely active and a big runner before I got sick four years ago. Since then, I have been unable to workout at all but gained a huge amount of weight from a new med recently and now have to lose the weight to keep the rest of my body healthy. I have started back to the gym and am in a lot of pain going but have felt that getting out of the house and exercising, although not running or hardcore exercise. I have found that the bike and eliptical are easiest to handle and things like situps are very uncomfortable because of the strain on your neck. Hope this helps…let me know how it goes!!
Hey Micheala,
What meds are you on? I lost a scary amount of weight when I first got this because we couldn’t find a medicine that would work for me. I just started Trileptal about a month ago and it seems to be working and I’ve been able to start eating a little better. I will try to incorporate everyones advice and let you all know how it goes. I wish there were better resources out there on this. My doctor is more the “trial and error” type. If it hurts, don’t do it. It really makes me want to go to med school so I could be more empathetic and understanding towards patients going through this. Too bad I almost failed bio in college.
Michaela said:
Gina
similar to you I was extremely active and a big runner before I got sick four years ago. Since then, I have been unable to workout at all but gained a huge amount of weight from a new med recently and now have to lose the weight to keep the rest of my body healthy. I have started back to the gym and am in a lot of pain going but have felt that getting out of the house and exercising, although not running or hardcore exercise. I have found that the bike and eliptical are easiest to handle and things like situps are very uncomfortable because of the strain on your neck. Hope this helps…let me know how it goes!!
I have struggled to convince people that physical activity and strain increases my TN pain. I am certain people think I’m fat and lazy. Truly, I have gained a lot of weight and trying to do anything physical, to try and tone or lose a few lbs is virtually impossible unless I want severe pain. I have yet to find anything that I can do comfortably. I was really hoping swimming would be good, as I used to enjoy swimming a lot.
I completely understand the post about having a fan on you when exercising!!! I try so hard to keep cool but struggle in shops and stores that have heating systems so pushing my body temperature up during exercise is just the same, if not worse. I totally relate to those who advise not giving up, but sadly I have because I cannot find anything that works.
Please advise if anyone has more suggestions because I don’t want to give up!!!
Gina, I hear you! I am 38 and have run 1/2 marathons, hiked, rowed, etc. But now TN has me afraid to do anything. And today–I am in the midst of a flare up–I can’t eat or I get the jabs in my face.
I just discovered via MRI that I have a blood vessel sitting on my nerve. I can actually see the nerve is indented a bit where the vessel meets it. If you have a similar situation, it seems clear that pumping blood would really push on the nerve. I suppose MVD is in my future, but I’m afraid of surgery. Still, I don’t know what choice I have right now. The pain is too intense to do nothing.
Paul
Hi Gina,
I am the same way. I used to be very active but now if my blood pressure rises I ended up spending the next day in bed.
We started doing Geocaches. You can pick the difficulty level of the ones you find. It gets me out of the house and taking hikes again. Most phones now have a app. for it .
Hope this helps
spyder
Hi - I am new to the forum, but am finding it very helpful so far. I have had severe facial bilateral facial pain for about a year now. I have not had an exact diagnosis yet, but have been told atypical facial pain or atypical trigeminal neuralgia. I am wondering if you could tell me how you feel. Is your pain constant and bilateral and what do you do for pain management? I am currently on gabapentin, which helps, but not totally. Are there any other options out there?
James Curley said:
Hello Gina,
I have had Atypical TN with pain 24/7, only varying in intensity for 20 years. I do believe that physical exercise regulary does help. I have read that with TN it’s probably not a good idea to do strenuous physical exercise. Personally I swim 4 to 5 days a week-sometimes every day. I am a good swimmer but I swim moderately at an easy pace. I think that being in the water also is a good idea-at least for me. I also walk regularly. There are days when I feel quite drained from the combo of med side effects and my pain but even on those days some moderate exercise does usually help. Normally I would relax/rest for a while before exercising when I do feel drained.
James
This is a great conversation, I’m really thankful for everyone’s posts. It’s so strange that different things trigger pain for everyone. I guess that is what makes TN and ATN so difficult to treat. For me, moving my head around doesn’t bother me too much, it’s just the blood pressure thing but my doctor just put me on meds to lower my already low blood pressure. Still doesn’t help but I try to get out and enjoy the day - just can’t push myself too much and have to limit my activities. I try to keep a good attitude and instead of living in fear and staying in the house all the time, I’ll try anything once and if it hurts, I stop and grin and bear it through the pain… most the time while looking like a crazy person to the rest of the world. It hurts like crazy but a positive attitude helps (it’s hard to remember that when it feels like someone is skinning your face off and you did it to yourself because you went out and went for a bike ride and you knew you would probably get an attack if you did that) but at least you got to enjoy 15 minutes or so of the outdoors right?? Just my theory.