Relivion or other neuromodulation device - what’s your experience?

Hello @boltz7555. It is understandable that you'd like to hear from someone about their experience with a neuromodulation device before moving forward.

Members such as @jakedduck1 @elizabej @sueinmn and @lisette43 have all previously commented on neuromodulation devices, albeit in other discussions, however may be able to come in and share what experience or knowledge they have with you.

What have you most recently tried prior to this being shared as an option with you? What concerns you most?

Unfortunately I don't have any experience with suche devices, but I did find this comparative review: https://www.everydayhealth.com/migraine/guide/treatment/nerve-stimulation-devices/

As you can see, the device needs to be targeted to your personal type of migraine. Do you have a specific diagnosis?

Sue

@amandajro
Hi Amanda -
Thanks for the reply! I have tried different migraine medications such as topomax and propranolol with no benefit (although I still take propranolol for POTS). I’ve also tried Emgality and Botox injections with no migraine relief. I have a headache to some degree 24/7. My neurologist shared info with me on Relivion and it sounds worth trying. My only “concern” is cost as it is not covered by insurance. It’s $200 up front and $75 per month. I can think of many frivolous things I can stop spending on to make up for the cost of this and if it works, it’s absolutely worth it. I went ahead and got the prescription today and hope to give it a try soon. I don’t have the device yet, waiting to hear back from Relivion.
Thanks again!
Robyn

@sueinmn
Hi Sue -
Thank you for the response and article. I am not sure what type of migraine I have other than “acute chronic migraine”. As I mentioned in my reply to Amanda, I have a headache 24/7. They are just a part of me. The article you linked was very helpful, thank you! Sounds like I’m a fit for the Relivion device. Very hopeful, as so far, I have failed all other treatments. Oral drugs as well as injections have been unsuccessful.

Correction, I think it’s just “chronic headache” not acute. Couldn’t edit the post. Either way, generic label, nothing specific.

Hi Robyn, I'd like to hear about your experience with Relivion. Thank you ! 😃

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Hi Robyn! I have been on Emgality/Botox for a year now and still having pretty bad headaches. What was it like for you when you discontinued them? Did you do it simultaneously or one at a time? Relivion looks very interesting. Do you have it yet?

@aniuchkana Hi. I did not end up trying Relivion but a couple similar therapies. The one that works best for me is the photon PEMF InfraMat Pro from HealthyLine: https://healthyline.com/product/taj-mat-7224-pp-pemf-inframat-pro/

It’s a pricey investment and I was skeptical but it is helpful. However, I also have small fiber neuropathy and POTS/autonomic dysfunction and I find it most helpful with symptoms associated with those conditions and in turn, also helps with my headaches. Hope this helps and that you find relief from headaches!

@mellies Hi. I did not stay on Emgality very long (maybe 3 rounds) and switched to botox after Emgality failed to provide relief, so I was not on both at the same time. I’m still doing the botox. I haven’t noticed a significant improvement by any means and have considered quitting. I’m worried headaches will come on stronger if I quit the botox however I have big flares for the first 2-4 days after the injections. My doctor is surprised by this but I can count on it happening every time. So I think discontinuing the botox is in my best interest. My next round isn’t until March so I have a little time to think about it.

I did not try Relivion. I just replied to another message about that, you can see that post here https://connect.mayoclinic.org/comment/800738/

Let me know what you decide and how it goes! Good luck, I hope you find relief soon!

Hi Everyone,
I was curious if anyone had any feedback on Relivion yet. I'm looking into this route for my sister, who has already done an insane amount of procedures... still struggling with optical neuralgia, POTS, daily migraines, EDS, etc.