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Looking for fellow Occipital Neuralgia suffers.

felicia2686
felicia2686 Posts: 5 Member
edited November 2024 in Motivation and Support
Looking for fellow Occipital Neuralgia suffers to try and connect with. These days, I am needing a little extra motivation and support from some people who know what it is like to try and work out with this crap; what works, what doesn't, etcetera.

Currently, I am only able to get to the gym about 2 days a week, when I am feeling okay, or willing to risk a flare up. I work out with my husband, who is a fitness fanatic and goes about 5 days a week. We use free weights mostly and go slow when I am with him. I am still able to get my heart rate up, but nothing about our work out is fast-paced; can't risk going too fast, losing form and paying for it later with an attack. I have swam in the past and done yoga. I really would like to get back to both of those, but I am afraid of pushing the limits and suffering the consequences.

As far as food, I try and eat foods with high anti-inflammatory properties, but I have good weeks and bad. Staying away from artificial sugars has helped with the spasms along the occipital nerves, for sure. Mind you the relief is little, but I can tell when I have ingested too much because the spasms return and are more severe.

If there is anyone on here who would like to connect, let me know!

Thanks.

Replies

  • wilkinsonlk
    wilkinsonlk Posts: 9 Member
    Hello, there is a facebook page as well for occipital Neuralgia that is awesome. Lots of good information. I was just diagnosed with ON and have been taking Nortriptyline foe a month now and it sems to be working OK. I can get the pain to a steady 2 or 3 for the most part. I have been dieting for the last month since finding out I had ON because I think that is a big part of the reason I have it. I haven't gotten to the serious work out phase yet but have been walking with my dog. I aways have to take an aleve afterward so I am afraid to do anyrhing too intense yet. I think I will ask the Facebook ON group if they have any pointers. I will keep you posted. Good luck!
  • felicia2686
    felicia2686 Posts: 5 Member
    Yeah, I am in one of the fb groups and they have been tremendously helpful. I was just reaching out on a different social media.

    I was dx with ON about three years ago but I have been suffering for little more than a decade. I've received nerve blocks and Botox, and tried topamax and a muscle relaxers. But I have never liked the way the meds made me feel, so I try my damnedest to stay away from them. I take excedrine sparingly when I think it'll help or sumatriptan on the bad ones, but some times that doesn't come close.

    I don't think my weight is the cause of mine. In high school I played a lot of contact sports, so I believe the was the cause for mine. But if losing weight will even slightly help lessen pain, then I am game!

    :)
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