Update – New Treatment Plan – New Devices

I can’t believe it’s been a MONTH since I posted! The last time I posted I was having a very hard night, thank you all for supporting me and caring, it means the world, really.

I saw my neurologist/headache specialist a few weeks ago and we came up with a new treatment plan for my migraines. First I went in and had an occipital block on both sides, unfortunately it didn’t help. I was very hopeful it would since I had an occipital block on the right side in December and it seemed to help. That was disappointing.

I’ve tried one the new migraine medications for acute attacks, Ubrevly, and it helped as long as I took it early, if the pain is too far gone it didn’t help. So now I’m waiting on insurance approval to get a prescription for it.

Almost every rescue medication for the treatment of an acute migraine only works well if you take it within the first 30 minutes of an attack. When you have a status migraine, it doesn’t go away, so there is no way to catch it in the first 30 minutes. The only thing I can do is use it when the pain starts to increases when having a lower pain day, unfortunately that doesn’t always work.

After I get insurance approval I will be starting Vyepti, it is a CGRP blocker given by IV. Unlike the CGRP drugs that you take by shot every month (Aimovig, Anjovy, and Emgality) you may see a difference within the first week or so, instead of the months it takes with the aforementioned medications. I would get the IV treatment every 3 months, instead of giving myself a shot every month. I’m really hoping this will be a good preventative for me, but I’m afraid it won’t work since neither Emgality nor Aimovig worked.

I have been using the Nerivio device and it does help some, but it is another treatment that must be used in the first 30 minutes of an attack, so I’m only getting partial relief. From the Nerivio website: “Nerivio is a wireless non-invasive remote electrical stimulation wearable applied to the upper arm at the onset of migraine headache or aura. Nerivio induces an inherent pain inhibition brain mechanism, resulting in clinically significant pain relief. Nerivio is safe and well-tolerated.” (I plan to write a review of the Nerivio soon, I’ll give more information at that time. If you’d like to learn more about it check out their website here.

Just yesterday I received the Cefaly device. As described on their site, “Cefaly is an External Trigeminal Nerve Stimulation device (e-TNS) for migraine treatment. A self-adhesive electrode is placed on the forehead and the Cefaly device is magnetically connected to this electrode.” I’ve only used it twice so far and it helped. I’m actually feeling better today than I have in a long time. There are 3 different Cefaly devices, one is for the treatment of Acute Migraines, one is for prevention, and one is dual, it does both. I have the Dual Cefaly device. I’ve only used it in the Accute mode so far, hopefully I will be able to use it as a preventative once this status migraine is gone. I will also do a review on the Cefaly after I use it for a while so I can give more information. You can read more about the Cefaly device on their website.

I was so surprised and pleased when I wrote to my doctor and told her that the occipital blocks hadn’t worked and she wrote me back and said she was sorry she didn’t know how to help break this cycle. She is normally very abrasive to me when I contact her outside or an appointment. It’s like she has been two different people, one in the office, and one in the portal. She surprised me, in a good way. I do think she cares, I just think she has too many patients, and doesn’t know how to deal with patients when they are not responding to treatment. Stuart contacted another migraine specialist here, but she isn’t taking new patients for the next 6 months because a colleague is out and she is covering for both of them. I’ll make that decision as time goes on.

I’m so tried of being in pain and having severe light sensitivity. Which reminds me, I also got the Allay lamp. This light helps with light sensitivity. I’ll be reviewing this lamp soon, in the meantime you can read more about it here.

All of the devices mentioned here have some pros and cons, I’ll address those more in my follow-up posts reviewing them. I’m so lucky that I can try these devices, thanks to my wonderful father-in-law’s birthday gift. Since Stuart was laid off I wouldn’t have felt comfortable getting these devices if Dad hadn’t given me that money.

What’s the cost of these devices? The Nerivio is $99 per month for 12 uses, you get a new one each time you refill. The Ceflay is a one time cost for the device, it varies depending on which device you get, but the electrodes do need to be replaced regularly. The Allay lamp is a one time cost of $149 at the time of this blog post.

I purchased all of these devices with my own money, I am not an affiliate and have not been asked to review these items, nor have I received anything from the manufacturers.