The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

Need help learning how to live with MAV ;)

Hello there, my name is Jose, I am 24 years old and this is my first time posting on here. I have been a suffering from vestibular migraines ever since I got a flu virus in February of 2017 that went into my inner right ear and damaged my vestibular nerve. I have been trying to manage this horrible condition but unfortunately haven’t had much success. It’s a lot better than what it was when it first started but I still have some awful days. I was just wondering what do you guys do or take to feel better? How do you make a living with this thing? I need some recommendations because I am currently taking Gabapentin 600mg 3 times a day, Verapamil 120mg once a day and supplements like Magnesium 500mg, Vitamin B12 and D3, ginkgo biloba and COQ10 200mg however It is still a daily struggle with this demon.
I tried Amitriptyline, Effexor XR and Topamax but all they did was make me feel worse. How is it possible to live a productive life with MAV? I have so much uncertainty regarding my future. I am a medical assistant and I don’t know how but by the grace of God I have been able to keep the job as I have called out more times than I can remember. I feel stuck in life feeling like never again will I get another job or even get married and start a family. I would love to back to college to further my education, but I feel like it’s not possible. I don’t mean to sound dramatic, but I have nobody to talk to and feel very lonely. I would truly appreciate it if anyone could help me out.

Thank You :slight_smile:

5 Likes

Hi and welcome. Sorry circumstances have brought you here but you should find support here with ‘People That Know and Understand’. You are in the right place and sounds like you are doing all the right things to progress. Joining up here should relieve much of your loneliness Incidentally just for the record, It is very common for MAV to start after a dose of the flu.

Just for starters may I suggest you key in the word ‘Daniel’ into this forum’s Search facility. What you are looking for is Daniel’s Success Story. From what you’ve written I guess you’ll have a lot in common with Daniel. Once you’ve picked that thread up clicking on his Avatar should give you access to all his posts and you can follow his story through. Otherwise Search ‘New - could do with some support’ - the first thread he started which is dated March 2017 and is the start of Daniel’s journey. Doing this will give you some hope and idea of a possible insight into the journey which lies ahead of you. All the best. Helen

1 Like

Hi Jose, welcome!

Looks like you’ve tried a lot of meds, that’s good - keep trying new things. Can I ask what doses of the Effexor/Topomax/Ami that you tried?

There are a few other options that you might look into that have helped me considerably:

  1. Cefaly Device - I’ve had great results with my “head pressure” using this device.
  2. Cannabis - CBD oil + some THC at night if you can handle it.
  3. Infrared light - I have a post about it on here that you can search.

Unfortunately, all 3 of the above things are not covered by insurance, so if you are unable to afford any of those things, the best option are the standard migraine medications which looks like you are taking. But you may want to retry some meds at much lower doses to see if you can tolerate them better.

As far as learning to live with it, here are a few things that helped me with my depression:

  1. Stay connected with people, including your family and us on this forum. We are all here to help each other through this awful mess. You can PM me for my contact details if you want to talk.
  2. Try reducing work hours for a while if possible, or think about changing jobs for a while to something that is less demanding with MAV.
  3. Get out in nature if you can, meditate a bit if possible, or just find an interesting TV show to keep your mind off the symptoms and unhelpful thoughts.

You will get better, just need to keep trying new things and let time pass!

Erik

3 Likes

Welcome aboard!

I’m not sure you can know this for sure. It may be you just have some inflammation: try not catastrophise, what you have may be 100% benign and reversible.

I was ill for 4 years and have mostly recovered.

Thank you so much and I will definitely be looking into his story. :smiley:

I was taking 50mg of Topamax twice a day, Effexor 37.5mg twice a day and amitriptyline 20mg once a day. They made me feel like a dizzy zombie lol

Thank You Erik I will be trying out some of those things.

1 Like

Jose,

Those are good enough doses to know how they affected you - provided you tried each for at least 6-8 weeks. I have also failed all three of those. Topomax lasted 29 days. Effexor about 13 months.

Life does get better. It takes a lot of time and experimentation. The lifestyle changes need to be there and they need to be permanent. Is there still room for improvement in your diet, hydration, exercise, sleep hygiene, meditation and stress reduction routines? Have you given yourself opportunities to have fun and meaningful interactions with people you care about? MAV is a total package. There’s always a little more we can do - even if it’s just working on acceptance and self love.

Welcome to the community!

Emily

6 Likes

There is definitely plenty of room for improvement for all of those things especially regarding diet, sleep and exercise. The two I have to work on the most are acceptance and self love. I have been incredibly hard on myself since this all began 3 years ago, always blaming myself if I feel dizzier than usual and who knows maybe that’s why I haven’t recovered yet.

Thanks by the way!

2 Likes

Guys always forget to love themselves. I give you permission. :slightly_smiling_face:

2 Likes

I did some of this as well, like I probably took on too much stress in life and it was all my own damn fault. But you know what, stress is inevitable, in hindsight I wasn’t that bad to myself, I just got unlucky. Nowadays I tend to think of MAV and migraines as a disease that hits super responsible and ultra-productive people. Everyone gets a disease, nobody can live forever, or even pain-free.

4 Likes

I know how hard is to live like this is a living hell! By Gods grace I saw a doctor in Boston Dr Gacek that has been studying more than 200 patients over a 20 year period treating them with antivirals , he stated me in famciclovir and in 3 weeks I was free if my vertigo, I also had my ear nerve damaged before, but all in great again , only get Migranes once in a while but vertigo us gone!
Maybe you want to reach out to him

1 Like

I’m sorry you came down with this nasty condition. I’ve been on Gabapentin for three years and neurologists have added other medications with little success. Diagnosed with Vestibular Migraine and a year and a half later with Persistent Postural Perceptual Dizziness (PPPD) because my symptoms are daily. A neurologist put me on B2 400mg, B12 100mg and hear Magnesium Glycerinate 500mg is beneficial as well. Have you tried Vestibular Physical Therapy? I was just taken off Amitriptyline and started on Mirtazapine 7.5mg which really helps me to sleep. Taking Buspar daily and have Valium for when my symptoms are real bad. Meditation and breathing exercises can help, basically whatever helps you to relax and remain calm is a good thing. What I am learning is the brain may need time to heal itself and medications can help, but both psychiatrists and neurologist are unsure whether the damage and symptoms are more physical or psychological. For me I never had a head injury, but many of my symptoms are similar to PTSD. Be good to yourself and try not to freak out, but of course that is better said than done.

4 Likes

But VM and PPPD as far as I know they have many symptoms in common. Many people here have persistent symptoms with MAV/VM.

1 Like

I don’t see there is ‘damage’. That implies permanent irreversible stuff. I don’t see it. I’ve had this for over 15 years and I’ve been as ill as anybody and probably worse than most. I can completely lose my balance for a week at a time. I’ve had photophobia so extremely I couldn’t go outside on the dullest winter’s day without two pairs dark glasses and a wide brimmed hat and even that didn’t work. I’ve been on meds about three years. This year I‘ve had breakthroughs of ‘Wellness’ - several week long periods of crystal clear head, good balance and 100% symptom free and I felt like my old pre-MAV self. If this can happen how can there possibly be any permanent damage? It’s not logical. Helen

3 Likes

Completely concur.

I was in the depths of hell with this for over a year, and then mildly disabled for another 2. Then a little while longer with slightly annoying symptoms.

Despite that my vestibular and neurological issues have 100% resolved.

Relapses occured but gradually became milder … then they simply didn’t happen again.

2 Likes

I really must have another look for that Fast Forward button. Must be here somewhere.

2 Likes

I’ll try to add one onto the forum :wink:

I might add that during this process, I had a strong hunch things were getting better, but it was very very difficult to judge.

Unfortunately things only became really clear with a lot of hindsight.

1 Like

Maybe damage is the incorrect word, but people do suffer these conditions after head injury. If you research PTSD many of those symptoms are similar and include Vestibular issues. I was part of a Vestibular stress management class and out of the entire group I was the only one who did not have a head injury. So is the cause of my symptoms physical or psychological?

They do say hindsight is an exact science.

1 Like

None too sure about PTSD or symptoms being similar. I wouldn’t imagine mine are but some maybe. I was just referring to people with MAV diagnosis as being unlikely to have permanent ‘damage’. I know some MAVers result from trauma. What percentage, no idea. I am sure mine is either physiological or physical. It sure ain’t psychological . I can see how MAV can easily develop into PPPD though but that wouldn’t make MAV psychological. Helen