I’m deep in the depths of vestibular migraine. I don’t know where to begin to get out, I’ve gone around in circles trying to get care but took some detective work on my part later confirmed by an ENT specialist that I have VM. I CAN’T EVEN REMEMBER if that was this year or last my brain is beaten up and I’m so short of sleep. I had to wait to see them again after delays for me to be told there is nothing wrong with my ear and there’s nothing they can do for me. Now I’m back to going to see a headache specialist who had cut me loose because headaches weren’t my main complaint, but I guess my family doctor twisted her arm. I’ll see her in September just like the song hahaha. I’m not sure what steps I can take on my own. I was going to go to an acupuncturist today but was too sick to go. I just started using my CPAP for reasons I won’t get into and I’m also struggling with using that, and my anxiety and insomnia. I’m so burnt out I couldn’t even remember just now what kind of forum I’m on even. I think I’m going to have to sacrifice the CPAP just to try and get enough sleep to get the migraine under control a bit. I’m rambling sorry, what kind of success do most people have with physiotherapy? I’m certainly willing to spend some of my savings if that might be truly helpful.
I have sleep apnea. It contributes greatly to my VM I’m sure.
Thanks for listening and good night
you likely need to get on a prophylaxis medication – have you tried anything like that? Nortriptyline amitriptyline and venlafaxine are common ones that are tried first and work for most people. Alternatively, more migraine-specific medications like propranolol and topamax are tried as well.
anything like that? chronic vm is not truly chronic in that its one long attack – its overlapping attacks where the next attack begins before the previous one ends. if you start to work on preventing the next one, your frequency will start to chop down and you will slowly get better.
it takes a long time – i was chronic and then recently transitioned to episodic but i still have around 15 attacks a month. However, this is a massive improvement for me and I can still work/do most of the things I need to do while feeling sh*tty.
It is a process, but the good thing is that it won’t kill you nor are you experiencing any actual structural brain damage. when your attacks get controlled, your cognition will improve as well.
also there are a battery of supplements that can be taken for migraine prophylaxis – these can significantly help and are worth trying while waiting to have your doctor try you on a medication. you have to take them seriously and consistently for a period of several months.
this disease is a laborious process – it makes you work for every single inch of your life you get back. but if you do follow the process and do what you need to do from a treatment perspective, you will in all likelihood start to significantly improve.
a lot of people on this forum improve significantly faster than me – many have gone from chronic to completely attack-less in as short as a few months
When I had BPPV (Benign paroxysmal positional vertigo (BPPV) - Symptoms and causes - Mayo Clinic), physical therapy was ideal b/c the “Epley” maneuver is a part of the healing process. After the BPPV cleared up, they had me do another month of balance/vestibular exercises which were very helpful b/c the problem itself was actually vestibular. However, VM is neurological – my balance, inner ear, etc are fine. It’s just my brain likes to go for a spin, sometimes briefly, sometimes for a couple of days. Sometimes I’ll run through the balance exercises just to feel like I’m doing something, but the biggest aids have been getting more consistent with exercise and sleep schedule, and slowing down when my brain rebels.
As @sheepdog_lord mentioned, supplements are a good first line of treatment that doesn’t require a prescription. I read the book “Victory over Vestibular Migraine” and followed his recommendations. Symptoms calmed down a lot just with supplements – still had many days of symptoms, but very few days where my ability to function was completely messed up. Supplements proved useful as a way of dealing with this as I waited for the various doctor’s appointments to get scheduled.
Now, I’m also taking duloxetine (Cymbalta) which is similar to venlaflaxine (Effexor – both are SNRIs). The addition to the supplements has eliminated truly non-functional days, reduced episodes to 1-3 days a week, and resurrected my brain (brain fog, memory lapses, etc.). I can now work again, though I’m still trying to rest as much as possible.
So, as many others have recommended in the non-pharmacological treatment section of this site, regular light exercise, a solid sleep schedule, and supplements are a great way to start. Sleep sounds like your biggest challenge – melatonin can help with that (and is a recommended supplement) and you could even try valerian (though research that a bit given your overall health). I take lunesta to help me sleep! It’s worth it, and I only take 1/2 tab of the lowest dose, just to push myself to fall asleep. Something else to consider.
a little off topic but i tried valerian and found that it really helped with my dizziness but for some reason gave me really uncomfortable chess tightness/pain so i had to stop taking it
Sorry you are feeling so down. I know what my initial experience with VM was like and it is life altering. Remember that the brain is stubborn but not completely unchanging. There is a way through this mess, but it feels more like a longgggg hike then a quick trek up to an overlook. Without a doctor, some helpful things you can do include diet modification, daily exercise, prioritizing sufficient levels of sleep, and last but not at all least focus on bringing your body peace and happiness. The obvious ones for diet modification are no caffeine or MSG (avoid eating out a ton and products that say “natural flavors” in the ingredients list). The list goes on, but I find the dizzy cook is a helpful resource for starting a migraine diet. Exercise for me started with a walk everyday and then a short run then a longer run. When runs felt too intense, I lifted weights. (Biking, yoga, swimming, etc are normally recommended for migraine). Lastly, cultivate your mental health. Your body is your friend, you are on the same team, stick with it and help it feel calm, tell it you’re listening to it and will prioritize its health. I find the app headspace is really useful for meditating and calming my body down (I can’t emphasize how foreign I was to these sorts of things beforehand like my friends would have laughed at me for going to yoga, but it doesn’t matter! It’s good for the brain). I know it feels really hard right now, but you really are going to progress through this. You’re already on here looking for help and that’s how the progress starts. Hang in there!
So sorry that you are dealing with this without having a doctor appointment for months. The first medication that worked for me was Verapamil. It is typically used for high blood pressure but may be worth asking about. My blood pressure was typically toward the higher end of normal and the Verapamil has me low normal and gave me my first clear headed days in months once I started on it. Since my initial no real pain vestibular episodes, I have also begun having pain migraines as well. Currently, I’m doing Botox every 3 months and taking Qulipta daily. I hate taking so much medication but I’m down to one or two episodes a month which is such a relief. Before I got to this point, I would take 4 ibuprofen and that sometimes helped clear a vestibular episode. Check Amazon for the book on vestibular migraine by Dr. Shin Beh, *Victory over Vestibular Migraine. He has lots of information and great advice. Since it sounds like your neurologist isn’t real familiar with VM, it would be good to go to your appointment with information and ideas of what you’d like to try. As to physio therapy, I tried it before being diagnosed and it honestly made me feel much worse. Sessions and home practice made me so nauseous and miserable that I quit going. Best wishes that you will feel better soon.
Sorry youre dealing with all this. Talk to your doctor about possibly medication. I personally take Propranlol (Beta blocker) and its helped me greatly. Been on it for over a year now. It has sedating effects which is great for sleep. I take it at night time. Its also helped with my dizziness and anxiety as well.
I currently go to a physical therapist as well for my neck pain/issues. This has also been a God-send. Physiotherapy would also be very beneficial. Hope you get the right help.
Welcome @harryno. Deep in the depths indeed. These conditions are completely trying and can literally drive you to despair.
Have faith you will get better though!!
Amitriptyline, Vitamin B2 and Magnesium Threonate, hyrdation, regular sleep and meals, have been my life savers… biggest difference has been the Amitriptyline…and I am someone who NEVER takes a drug, because I normally get horrendous side effects, but the only side effect I have had with the amitriptyline has been fantastic sleep and finding it hard to wake in the morning. I was bedridden with VM previous to taking the Ami, and the first morning after daring to take 5mg, 3 weeks ago, I managed to get out of bed for a couple of hours. and it has just got better and better. I am now up to 20mg and almost fully functioning. the dizziness does break through sometimes now, but doesn’t last long and I can then get in with my day. An anti sickness is useful, such as cinnazirine, to use for when you have to function. I tried propherazine maleate, as I was needing more and more cinnazirine to control the vertigo, but it (the propherazine) gave me horrific nightmares all night long, so I won’t be touching that again, and now I have upped my dose of Amitriptyline to 20mg, I have hardly needed the anti sickness. The Neurologist has suggested getting up to 30mg eventually. It has given me my life back, when I thought it was over…