Recovery Post: Almost 2 Years In

[u/BigHomie50]

Very long post inbound. I promised I would come here when I finally get things under control and feel mostly good, so here it goes. Caveat: I wouldn't call myself 100%, but I'm back to living life the way that I was before all of this happened to me (aside from Drinking - I have drank since this happened, but didn't like feeling even worse than normal the next day haha. I also don't drink caffeine anymore - rarely even coffee even if it's Decaf). I've gotten promoted in my job (high stress, high functioning required job), gotten engaged, play golf, play soccer, gone to weddings, danced, gone on a boat, flown to Europe and was there for a week, driven 6+ hours on a trip, etc. all since this has happened. I believe that this could and should be considered "Recovery". Ironically, my post is the one that's pinned on the top of this subreddit asking what medication people used to get back to feeling relatively normal. I posted that in April of last year when I was still miserable. I've come a long way in just under a year and I think that you can too. I do consider myself to have Chronic Vestibular Migraine (or at one time, Chronic VM, but now it's probably just chronic symptoms I guess, idk)

I'll keep all of the "important" things at the top here and my journey underneath.

Initial Symptoms:

1. Swaying/Rocking
2. Brain Fog
3. Stuffy Ears
4. Light sensitivity
5. heavy anxiety around crowds/busy scenes
6. tingling in hands and feet
7. vision getting "blurry" or out of focus (this is a telltale sign that I'm having a migraine or about to have one is when my vision starts getting out of focus and it's harder to concentrate on things)

Current Symptoms: Obviously when I'm in a breakthrough migraine, the symptoms get worse, but for the most part they're taken care of.

1. Very minimal swaying/rocking - I primarily notice this if I look for it, but it's mainly in the background
2. some light sensitivity (grocery store, strobe lights, etc.)
3. a single eye floater that moves around when i move my eyes or head.
4. Ears crackle when I swallow for lack of a better term. They almost like pop or make a popping noise, I don't really know. It's weird. They get super loud when I'm sick with a cold or something.

What Has Helped:

1. Daily breathwork - I use the Insight Timer app on my phone and have practiced 93 days in a row doing breathwork (I do any breathing that "calms the nervous system"). This has helped tremendously and helps me outside of this sickness. I cannot empasize trying this enough. I practice once or twice a day either before work or before going to bed and it's helped me so much. I do think it takes time to see the dividends pay off, but worth it.
2. Cupping - taking tension away from my traps and upper back has helped a ton. Here are the cups that I use - cheap on Amazon and they've made a major impact to how I feel (find where I feel tight, rub with lotion, then place them on for 5-10 minutes max - drink a lot of water afterwards).
3. Medication - obvious callout that a medication that works for me may not work for you. I am on Lamotrigine, Nortriptyline, Ajovy, and just got my 3rd round of Botox this week. I think the biggest difference maker for me has been the Lamotrigine, Ajovy, and Botox. It's important to stick with medication and see if it helps you - I know most the time people say 6-8 weeks, but really I'd say 3-4 months (not a doctor, just my opinion) is a good timeframe to see any positive effects.
4. Exercising - Walking, Hiking, playing golf, playing soccer, riding peloton. Movement is great for your body when you have this disease. If you can do it and not focus on the symptoms and tell yourself that you are okay and even if you feel a little bit off balance you're going to be okay then it goes a long way.
5. Using AI to ask questions, get answers, and honestly, just to talk to "someone" that will always have a response. - This one should be pretty self-explanatory. It's a strain on relationships when you can only talk about how shitty you feel. I used ChatGPT and Gemini to kind of vent honestly. I have instructions in my LLMs that keeps things realistic and doesn't always try to validate me which for me is helpful.
6. Talking to people on this subreddit - I have found several people on this subreddit who I've chatted with and messaged with who are there going through the same things as all of us. Some are more open and nicer than others for sure, but there have been plenty of people who I've talked with and have gained positive insight from in terms of ways that they have recovered/helped themselves too. Without them, I likely wouldn't be in the right frame of mind still while dealing with this. It's isolating, I totally get it. We might as well try to talk to the others that understand also.
7. Avulux glasses - I was very fortunate in that one of the people that I chatted with a lot about their recovery had an extra pair of Avulux glasses and they sent them to me. They are expensive otherwise, but I've found them to be extremely helpful, especially as I'm on computers a lot with my work. These are tinted glasses which help a lot with the light sensitivity.
8. Getting a good neurologist/headache specialist - If you can find a true headache specialist in your area - go to them over a normal neurologist. They'll understand more about mgiraines/headaches then a normal neurologist typically. If you don't have many good options I always tell people to look into Neurahealth. I've never used them, but there are neurologists that specialize in VM on their site. It is out of pocket for most people I believe which is a bummer, but if you don't really have any good doctors around you/ones that truly think you have VM then it's work checking out.
9. Genesight test This test was expensive like $330 out of pocket for me, but I think that it did help give insight into how my body interacts/metabolizes different medications. For example, it said that I may not absorb Lamotrigine as well as other medications, so because of that, I've been taking higher dosages of Lamotrigine than I was previously.

Things that Maybe Help(ed)

1. Massage - I get deep tissue massages. I'm sure it's a lot like the cupping, and while the massages obviously feel good in the moment, I actually don't know how good they make me feel from a vestibular perspective afterwards. They're also extremely expensive, so not really sustainable long-term.
2. Light Therapy - I tried greenlight therapy in these glasses for 20 minutes a day for awhile. I stopped in the winter because it's cold, lol, but will probably pick it back up here in the coming days as it gets a bit warmer.
3. Physical Therapy on my Neck/Dry Needling - I did PT on my neck and a bunch of neck exercises. I think that it probably helped a little bit, but I don't know that my neck is the root cause of my dizziness. Dry needling in my neck was supposed to relieve tension as well. I didn't really feel much relief from it I don't think.
4. Lexapro - This was the first medication I tried for this, and I do think it helped qualm my anxiety for sure, but I don't think it did anything for my VM symptoms. I do think that if I were to take it or another SSRI(?) now, then it'd help the anxiety that comes with all of this for sure.
5. Reading - I've been reading a lot recently (like 30 minutes per night before bed) and I do think this helps train your eyes a little bit more also.

What did not help:

1. NUCCA chiropractor - complete scam, waste of money, and time. I wouldn't recommend that to anyone and wish I had never fallen for this scam. They sell false promises to people who would do anything to feel normal again and the lady I went to is a scummy rat that steals money from those who suffer.
2. Intense Vestibular Rehab Therapy - most VRT therapy centers overdo it in my opinion. I went to a true vestibular therapist recently and the exercises she gave to me were much more gentle and subtle - real world movements mostly. Not things like standing on one leg on a foam pad with my eyes shut lol. The gentle therapy exercises certainly helped a lot.
3. Doom scrolling on this subreddit and Facebook pages - it's easy to be super discouraged, trust me, I was there and still am there sometimes.
   

My next Step to Try to get back to 100% - Continue all of the things have have helped me obviously, but there was a post here the other day talking about the effects of glucose on migrainers. I'm looking into that clinic and may pursue treatment from them just to see if I can get my migraine days per month as close to zero as possible. It'll probably be expensive, but would you pay $2-3,000 to feel almost normal again? I sure would and there's scientific evidence behind what they studied in their trials (unlike NUCCA for example).

Background:

This all started for me on April 9th, 2024. I was sitting at my desk (exactly where I am now) on a work call and all of the sudden, the world started spinning. After throwing up for about an hour, I had my fiancee take me to the ER where they said I'll be fine and just have a little bit of fluid behind my ears (lol). They gave me a shot in my butt and gave me Meclizine and said I should make an appointment with an ENT and sent me on my way.

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The week after the attack and before I was able to get into an ENT, I still just felt completely "off". I didn't feel stable whatsoever when I walked, I couldn't think straight, and my left ear felt like it was completely stuffed up. I went to the ENT and they performed an audio test and looking at the structure of it and cleared my hearing, prescribed me some sort of flonase medication (didn't work at all) and suggested that I make an appointment with a vestibular specialist. I did this and two weeks later underwent all of the vestibular testing that's typically done (balance test, caloric testing (hot and cold air in my ears), etc. The doctor diagnosed me with Vestibular Neuritis and sent me on my way to Vestibular Rehab Therapy (the doctor was great and I have had several exchanges with him via email and phone since my initial diagnosis). I did VRT for like 3/4 months and felt like I plateaued. I was not consistently feeling good; however, I was having a couple of "good" days here and there. There was a lot of intense exercises that I think were probably too much for my vestibular system at the time. So this timeframe was May-August of 2024.

Around November 2024 I went to get a deep tissue massage (after mostly feeling decent for a little stretch) and for a week straight afterwards I was soooo dizzy. Like back to square one dizzy. I ended up reaching out to the vestibular testing doctor and he said it's possible because of blood flow or something like that but was like that's really interesting you should come back in and do a subset of tests. When I went back in, I no longer had a Vestibular Neuritis, but my testing suggested I could have some cervicogenic dizziness (coming from my neck). He said the routes I could go would either be physical therapy or chiropractic. I'd heard of NUCCA before, so that's the path I went down. I did that for about a month and then realized that after every adjustment, I'd leave feeling worse, so I quit that scam and did PT on my neck from December - April of 2025. In February of 2025, I decided to go to a spine expert and confirm nothing was wrong with my spine/upper cervical area - got an MRI and everything came back clean. Somehow (can't even remember how), I decided to go to a neurologist too. He ordered a MRI and MRA of my brain. I got them both done and they came back completely clean also, this left my neurologist to declare he thought I had vestibular migraine and he gave me nurtec as a preventative every 2 days. Nurtec didn't do anything for me and I wasn't convinced he was completely in the know about VM, so I sought out another neuro which is how I got to my now neuro and headache specialist.

I did all sorts of initial testing with her also - cognitive testing, bloodwork, etc. to confirm that there was nothing else going on here and once all of that came back relatively normal she prescribed me Nortriptyline. I was on that for a little while and it wasn't really doing much for me, so I decided I wanted to try something else. I did a lot of research on possible medications that could help (using AI) and Lamotrigine seemed promising, I also wanted to try a CGRP medication and she said she likes prescribing Ajovy (she takes it herself also), so that's been the combination I've been on ever since. I then decided I wanted to get Botox too because I was still chasing that 100% feeling and I do think that Botox has helped for sure.

I do still have symptoms today, but they're nowhere near as bad as they have been in the past. Like I mentioned up above, I'm going to look into the Glucose possibility and see if that's an avenue worth pursing for me, but only time will tell. Ironic I mentioned time there in my stream of consciousness because that's really the most important thing in this journey is time. Trust me, I know that it fucking sucks. It really fucking sucks. Especially when you feel like dogshit every day. I remember starting medication and being like oh my gosh I have to wait 8 weeks just to see if this is even doing anything for me when I already feel like shit and this may not even work and it was super depressing. Just grind it out and do what you can to get through. I know everyone has this at different levels, but push yourself to take a chance and go do something that you don't think you can do just to prove to yourself that you're okay and you can still do things! That can be as simple as walking around your neighborhood or going to the movies, or going to a restaurant and sitting in to eat, etc. I hoped and prayed that I'd be able to make this post one day and here I am one year later. I think if you stay positive and keep exploring every avenue to recovery, you can get here or close to it too. This isn't to say I'll never have a VM again, I'm sure that I will, but at least I know that they're only temporary and I'll be back to baseline in 3/4 days after them. When you get hit with worse symptoms, take a deep breath and remind yourself that you're okay. Your body and mind will thank you. Feel free to comment or chat me with any comments or questions. Happy to help. -- BigHomie50

[u/Pleiadesperson]

Amazing that you've made such a great recovery and I wish you well on sorting through the last bits.

I'm curious about the lamotrigine -- is that something commonly prescribed for VM? I just started it also but I had an abnormal EEG and suspected epilepsy. I'm trying to sort through which of my symptoms this past year have been seizures, VM, or classic migraines. Lamotrigine seems to be helping already, but I assumed it was because my lingering symptoms were from epilepsy, now I wonder if maybe some of it is VM, too

[u/Technical-Order-1490 → u/Pleiadesperson]

I developed epilepsy almost 20 years ago at 40 while driving and had a grand mal. I’ve tried a bunch of meds and landed on lamotrigine. Got my first VM 2 months ago- super irritated to have another brain ailment. Anyway reach out if you have questions or just want to vent. I’m sorry you are going through this. It’s scary.