Looking hopeful, but the jury is still out!
Most of us who live with migraine are constantly on the lookout for new options to try and manage the disease, and so I was really excited to get my Nerivio device last month. Just to give you a little background: Nerivio is a neuromodulator by Theranica that was FDA approved in May 2019 but was only recently made available. Currently it is rolling out through doctors’ offices and being supplied by one pharmacy only, QuickCare. Hopefully in 2020 it will be available by prescription in local pharmacies also, but the good news is that most new patients are able to get their first device FREE from QuickCare!
Third Time’s A Charm
Not having had any success with other neuromodulators (Cefaly and GammaCore) I really wanted to make sure that I put some thought into how I would try the Nerivio out. In my mind, the third time is a charm and I am ever hopeful. The challenge is that migraine is so complex that sometimes it can be hard to know if something is actually going to be helpful or even IS being helpful. Our attacks vary, triggers vary, when we are able to start treatment varies, and just when we think we’ve got a handle on it all…. wham! It all changes yet again! In short, a migraine attack is a constantly moving target that isn’t easily put into a box! Bearing all that in mind, even though my first couple of uses with Nerivio were not successful, I didn’t want to give up too easily.
A Mixed Experience
Having tried Nerivio fairly regularly for the past month now, I have to say that I’ve had a mixed experience. That’s definitely better than a “fail” and, honestly, is not unlike my experience with other migraine treatment options also. Many of my attacks it does not help at all. That is especially true for the ones I wake up with. However, that’s not surprising because those early morning attacks have always gone well past the 30-60 min treatment window by the time I start treatment. Often, it’s all I can do at those times just to crawl out of bed, hands pressed against my exploding head, and work my way to the fridge to grab a Sprix spray.
But wait… it’s not all bad news! I’ve definitively stopped two attacks in the last month, and reduced the intensity of another; whether I’ll have to take medication for the third one is still up in the air since it’s an ongoing situation! Both successful treatments were attacks that started in the late afternoon. They began with nausea and a racing pulse, so were easily recognizable, and I was able to start treatment in less than 30 mins from when those symptoms started. Well before the pain ramped up! Also, with both successful treatments I was able to increase the intensity of the device to almost 30%, whereas in my unsuccessful treatments I struggled to get even to 20%.
The Personal Testing Continues!
All in all, I’m finding it interesting testing the Nerivio, and because I’m getting at least some relief my personal testing continues! Two stopped attacks in a month may not sound like a lot, but for me it’s huge. I don’t get a lot of individual migraine attacks each month, but in my case they almost always become intractable and last for days! So… stopping two attacks in a month is no small feat, and right now represents about a 30% success rate. I’ll take that for sure!
The challenge for me, as I’m sure for many others, is that this device like most others is not covered by insurance. Also, that situation is unlikely to change for a few years since the process for insurance coverage is long and exhausting. It always amazes me how an insurance company can deny a device like this that costs $99 a month, while covering abortive injections or pills that can cost the same amount PER TREATMENT, and sometimes more. In addition, wouldn’t they want to encourage patients to use a device which doesn’t have serious side effects and won’t cost them more in treatment of those side effects?! It’s a mystery to me and hopefully at some point things will change. In the meantime, if you are wanting to try the Nerivio, be prepared to pay out of pocket $99 per device which lasts for twelve 45-minute treatments. It’s a small price to pay if it works, but for many who are on disability or who are unable to work full-time any more, that’s a price they simply cannot afford.
Some Quick Tips
Bearing in mind the number of things we try that are unsuccessful or intolerable, it can be really easy to get discouraged! However, for anyone trying the Nerivio who doesn’t have success the first time or two, please don’t give up too quickly! Here are some thoughts and suggestions that may help:
- DON’T GIVE UP: Keep trying it, preferably for different types of attacks (if you have them) or attacks at different times of the day. That way you can see if the device is simply not going to work for you at all or will work for just some attacks.
- TREAT EARLY: Make sure you start treatment within 60 mins of an aura or symptoms of pending pain, and preferably within 30 minutes. For me the earliest symptoms are often nausea and racing pulse, with pain following shortly after, but each of us is different. So know your early symptoms and don’t wait!
- GET THE RIGHT INTENSITY: Make sure you have the device increased to as high an intensity percentage as you can tolerate it, BUT WITHOUT it being painful. Sometimes I have to go one higher than is comfortable so that I know it’s the max I can tolerate, and then I go back down one level. You can always change the intensity at any time during a treatment, so don’t worry about being stuck at a level that’s too high for you.
- WORK AROUND THE GLITCHES: The app that goes with the device is still being developed and improved, so have patience with any glitches. I find that the app disconnects from the device fairly regularly during a treatment, but it’s very easy to get it to reconnect. It doesn’t affect the treatment at all, and should not impact your experience.
- REMEMBER: You have 12 treatments on the device so it’s worth keeping trying:)
It’s a new year, with new hope, and new options becoming available. The Nerivio is just one more option that we can now add to our toolbox to try and manage migraine, and in my opinion, that’s a great thing! Hopefully you get a chance to try the Nerivio, and if you do, let me know what you think! Does it work for you? Does it help some attacks but not others? Are you having any problems with the app? Would you recommend this to other people to try out?!