Jaime Sanders is a patient advocate who has lived with migraine her entire life. She is the author of the award-winning blog The Migraine Diva and was the Migraine Patient Advocacy Coordinator with Global Healthy Living Foundation. Jaime partners with the American Migraine Foundation and Shades for Migraine. She is a stakeholder with the Coalition for Headache and Migraine Patients and the Headache and Migraine Policy Forum. Through her advocacy work and blog, Jaime’s mission is to make a very invisible disease visible to the rest of the world and validate the real pain of millions. You may reach her on Facebook, Twitter, Instagram, and RU-vid.
This was an incredibly brave video. Thank you so much. I also have suffered with depression and anxiety and much of what u explained was and is how I feel. I find that some days I physically need a lot more sleep and that is OK and my family are learning when these times are. Also I have learnt that it is good go recognise small things I achieve each day, like having a shower, often tiny things and this helps me stay positive. Thank you so much for your thoughts and feelings. I wish u so many positive vibes and hugs. Stay safe and stay well you are worth it
How did the world around looked through these tinted glasses , how was the image, did they help with the migraine, can u take a video through ur glass so we can see how does it look like ?
It seems like your life mirrors mine. I'm so sorry. Have you ever had a spinal tap done to test for IIH? That's Idiopathic Intracranial Hypertension. A fancy way of saying you have too much spinal fluid, and it's pressing on your brain, causing all kinds of trouble, mainly migraines. Please speak to your neuro about it. If he won't listen, speak to someone else. Keep making noise until someone takes you seriously. My GP was the one who kept urging me to have the lumbar puncture, but u was afraid. Three neuros that I saw never even mentioned it. Finally, after a particularly horrendous stay in the hospital, my GP said it was time. I agreed, and within an hour, it was done. My pressure was 58. The norm is 10-15, depending on who you ask. My migraines were gone almost instantly, and for a little over 8 months. The fluid does build back up, so I've had 3 more LPs done when the migraines got too bad to bear. Twice the pressure was in the high 20s, and last week I had one, and it was 48. I was thrilled, because the migraines were brutal, and almost daily, for months. I take Dilaudid and Phenergan for them, but it just take the edge off, and makes me sleepy. Since this last LP, my head feels great... Like a helium balloon. No pain at all. I have my life back for a while. If you haven't been treated, and these miserable migraines are ruining your life, please go and have a lumbar puncture done. It's the only definitive way to get a diagnosis, but it's so worth it. Wishing you pain-free days....
Hello, this is great that you share your story of being a fellow person that suffers from migraines. I think I read at one point they were giving you dilaudid. Did that help you or was it bad for you? I have tried everything and fiorecet has been the only thing that has helped me. Is it a bad one for you to take? It has helped me to live a more normal life! ❤️❤️
I’m so sorry you are going through this. I have been dealing with chronic migraines for 8 months now 24/7. It’s hard being a woman dealing with this because we are are expected to care for everyone but we can’t. I would love to connect for support.
Yes, it’s extremely hard being ill constantly but have to care for others as well. It’s been the story of my life. I’m more than happy to connect. Feel free to email me at jaime@themigrainediva.com. 💜
Thank you so much for the detailed explanation on the Occipital Nerve Stimulator. I am having the trial next Friday and feel much better after listening to you explain what you went through and how the stimulator works. I have had constant pain on the back right side of my head For the past seven years and like you have tried everything. You did a fantastic job with the video.
you should try kratom my wife used to take alot of pills mostly ibuprofen and perscription for her migrains but it barely helps and effects your health both mental and physical expecially when taking large amounts. but kratom seems to reduce the pain significantly, and its natural so you dont have many of the same health problems. it even puts you in a good mood and for some people helps them have a clearer sharper mind
Thank you for sharing this, it helped me so much today. I found your blog about migraines, but I'm also struggling with depression. What you say resonates with me in ways that many can't understand, and you articulate the feeling so well. Sending you virtual hugs, and know that you aren't alone.
+Shelley P I'm so glad my video helped you. I found that being transparent in how depression and anxiety affects me not only helps others but also helps myself get through it. Thanks for the hugs, today isn't a great day so I truly appreciate them. 💜💜
Have you ever considered Lyme bacteria for your fibromyalgia? Many people with fibromyalgia have been known to have Lyme and/or co-infections as an underlying component.
Yes, I have been tested for Lyme several times and all tests came back negative. I was able to put my fibromyalgia into remission with the help of my naturopath about two years ago.
Your video is so informative and well explained. I have had migraines for over a decade, and they recently became daily chronic migraines. I am very interested in getting this device. Are you comfortable talking about the name of the doctor you used, so I could contact him and find out if I am the right person to get this stimulator? Thanks for your help. What a relief this device must have been for you, I'm happy it is working for you.
Jaime, how I wish you and I lived closer to one another! You too, Kelly. I am no longer on Facebook, but I am on Instagram. How I treasure you ladies who support me from afar.
Same here Lori! I'm grateful for all of the strong and inspirational people I've met on this journey. And I'm happy to be a source of support for those who need it.
hi is the stimulator still helping you? would you still reccomend it? would you still do it today? my neurosurgeon mentioned it for my trigeminal neuralgia which is a painful facial nerve disease. hope to hear back . thank you
+dean muir I have one for TN which I got in 2009 and it has reduced my pain by 80%. I highly suggest you join the FB group about occipital nerve stimulation if you are interested. facebook.com/groups/232392623486874/
Your video was excellent. You were able to explain in a calm and competent manner how the system was implanted, how the various components interacted with each other and how they would be charged. I am going for a trial and have been terrified. Your video put a lot of my fears to rest. Thank you so much for all the good information. I hope you are still living a relatively pain free life.
+Living in Pain 24/7 Hello. Neurostimulation is commonly used to treat chronic back pain. There are spinal cord stimulators on the market. I am not sure if it has been used with spinal cord injuries. I suggest asking a neurosurgeon about whether or not this is an option.
Hello Ms. Jaime: How did u get the surgery approved? Dr's tell me since not FDA approved, need to pay out of pocket or go through a trial to have it paid for. Thank you for your information, and time invested to help others.
+J D Checo Doctors who do these a lot have learned how to jump through the insurance hoops. Some patients have also won coverage through an appeal. There is tons of info and people to help you in the FB group on this topic if you're interested. facebook.com/groups/232392623486874/
Jamie, I can't thank you enough for this video. You give so many details--things we'd all want to know. I'm in the process of trying to pass the psychological evaluation required prior to implant. I have been skeptical about whether or not this would address my constant headpain, but I continue to pursue any and all avenues for help. I have to get back to work. I have to get a semblance of life back. I really hope that you continue to feel relief 3 years later!!! Thank you again!!
Hi Natalie! I'm glad that the video was helpful for you! I know exactly what you mean by pursuing all avenues for help. Since my implant, many things have changed for me. I don't use my system as much any more since I've started seeing a naturopath in late 2012. I wish you lots of luck with your progress and I hope it helps bring you relief and a sense of normalcy again. Take care!
***** Things have gotten better for me thanks to changing my approach to healing and my stimulator works much better now that I'm no longer on medications. Thanks for asking!
Thank you Jamie for doing these videos. I live in Ontario Canada and had my trial in May of this year. The trial was supposed to be three weeks but on my 2nd week visit with the surgeon, it was removed as it was very successful with me. I get my permanent unit this coming Wed sep 3rd. Its been a long wait and over 6 years of severe pain and passing out. I lost my life, my job, a fiance and i cant wait to regain a bit of normalcy again. I will be having only bilateral occipital nerve stimulation and will have the battery in my flank, upper buttock. I look forward to watching further videos of yours. God bless
Thank you for watching my video. I am happy to hear how successful your trial was and I hope that the permanent unit will continue to help relieve your pain so that you can regain some normalcy in your life again.
Thank you. I still have the same amount of migraines, however, with the neurostimulator, the level of pain is better controlled. I do not use a daily preventative medication and use less pain medication. The severe migraines still break through but most of the time I can bring the pain level down to a tolerable level. I don't have it on every day and usually only keep it on during a migraine that is at a pain level of between a 5 and 8. I have several programs that I can cycle through too.
Hi Susan. Thank you for taking the time to watch my video. I'm glad that it has helped you. Good luck with your trial period. I truly hope that it brings you significant pain relief for your back and that you will begin to get your life back. Take care!
Jaime: Thank you so much for sharing. I really appreciate the trouble you went through to help others. I am trying tomorrow for the first time (trial version). I am really scared. It is for my back, not my head - but yours has been the most encouraging. Again, thank you so much.
AUK1970, my moms 72 and has bad back and hip pain. She has tried many fixes to help or remove the pain. Not to many things have woorked. She is now looking into the Neurostimulator. You say your very happy with your system. Do you have any cons to your system? The Doctors are very persuasive with their opinions.
Hi Kelly. I'm so sorry to hear about your pain struggles. It truly breaks my heart to read what you've gone through. I am also very allergic to triptans. My throat closes up and I have a hard time breathing. Do you have a PFO? I've read that having that closed has helped many with their migraines. I have a list of groups and resources on my blog. I hope you join some of the groups. I'm a member and/or administrator for all of them. I used to take Lyrica for migraines but made depression worse.
