Vestibular migraine never ends
I've had constant debilitating vestibular migraine for over 2 years. I've tried diet, lifestyle cganges, 4 preventative meds and nothing has helped. Meds only made the migraine worse. I can't live like this and am scared the dizziness will never get better. I am being considered for botox by a headache specialist.
I'm fed up of reading success stories that all involve pills, diet and vestibular therapy, as none of it has worked for me. Am I doomed to be stuck like this? How do you treat chronic daily migraine when meds, diet, lifestyle etc don't work? There's no answer.
I'm so sorry to hear what you are going through. It's hard not to get discouraged when your therapies are not working and you hear other people's are working. That's the hard part about living with migraine. Migraine attacks and symptoms are different for everyone. There are so many combinations that can occur during an attack. I'm glad you are seeing a headache specialist. I hope they can provide you with a form of treatment that will be effective for you. Make sure to write what you want to cover at the visit and bring it with you so you and the doctor can make the most of your appointment. I am currently on Botox and Ajovy(CGRP) with some improvement. It took me a few years of failed therapy to get to this point so I feel your frustration. Hang in there and know you have a great community here at migraine.com to support you!
@tom picerno thank you for the message of support, I really appreciate it. Can I ask how long you had botox for before noticing improvement? And how long have you been having it?
I saw some relief after the second treatment, but the relief lasted about 2 weeks. I have found that with the third treatment combined with Ajovy the improvement is lasting longer, but I can't give all the credit to either therapy. I think they are both doing some good.
Almost none of the meds work for me either and I had a really bad experience when I tried Ajovy for 2 months, it made the migraines much worse. I had to go to ER twice. I'm taking Zonegran for prevention and pain, muscle relaxer and vertigo meds along with using nausea med in cream form to get through episodes. I feel like I'm just limping along on these meds, don't know what I will do when they stop working.
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I truly feel your pain. I have vestibular migraine too and it’s been very difficult. Are you going to a specialist on balance and vestibular disorders? I went to so many ENT’s that had no idea what was going through. It was so discouraging.Finally I was referred to a dizziness specialist and he ran me through a battery of tests and then diagnosed me with vestibular migraine. But I also found out I had nerve damage in one year, causing hearing loss and an asymmetrical balance system causing dizziness. The damage is permanent.
If you aren’t getting the answers you need now, I am attaching a link to VeDA’s website. It is the best source of information on all things vestibular. ~ Peggy (Migraine.com Team)
I have had a constant headache for over 10 years, exhausted all sorts of treatment methods and had given up to just living with it. I recently discovered a talk by Dr Stasha Gominak on youtube and she through her neurology practice over the years found link between not enough REM sleep and daily headache. I looked at my past sleep studies and it all matched, so I have just signed up for her RightSleep Program. I encourage others to find her talks on this and see if it fits you.
Thank you so much for sharing this resource with our community. Many studies show the tie between proper sleep hygiene and migraine. It is easier said than done, of course, as sleep can be impacted by pain and the medications we take to manage migraine. Still, many migraine specialists will focus on prioritizing sleep help before anything else as addressing that part of our lives can often do a lot to address the frequency or severity of the condition. Drilling down further to explore the REM part of our sleep cycle is interesting and well worth thinking about. It sounds like this is what the resource you found is focused on. Thanks again for sharing and please do let us know what you find as you learn more about this resource. Warmly - Holly (team member)
