A Positive Story/Video I Want To Share With You All

Hi all, it’s been a while since I’ve been on this site. I wanted to check back in and see how everyone has been doing and give you guys an update on me as well. I posted a video of my Vestibular migraine story a while back and detailed how horrible this illness was for me. I was bedridden and housebound for several years and dealing with every symptom in the book. Worst of all, my anxiety, depression, and feelings of hopelessness had taken complete control of my life, and I felt like I was never going to get better. I was in a vicious cycle of negative thought and anxiety, which was only making my symptoms worse. Looking back at that time, 2.5 years later and feeling nearly 100% most days now, I’ve realized that the most important aspect of my healing journey was my mindset. When I finally got out of the mode of thinking that this illness was going to control my life forever, sap all positivity and optimism from me, and define where my future was going, I was actually starting to feel better and find the right treatments. I cannot emphasize enough how important the mindset shift was for me in this process and still is to this day. I’ve made another video talking a bit about this and what I’ve learned from my journey so far. Please give it a watch, I wanted to come back and share this with you all because I remembered when I was at my worst and on this forum the posts that helped me the most were the positive ones and success stories and I want to encourage people that healing is possible, and to share their story as well WHEN they all recover! Thanks!

11 Likes

Hi Buddy

Nice to hear things are going well,

Definitely relate to vibrational dizziness what drugs are you still taking. Amyt messed me up a lot so a little cautious of trying Top, Sertraline also made me feel worse think I must be med sensitive.
Matt

1 Like

Great video, Max, thanks for creating and sharing, appreciate you coming back to do so. Our members really need messages like this!

I particularly resonated with the mindset change idea and how you can turn the whole thing on its head, and accept that through this albeit extremely painful experience you can:

  1. Learn new things :white_check_mark:

    I actually enjoyed some of the doctors visits to see a whole new world of what medicine was up to. I enjoyed the psychologists visits at a meta level: I’d never been to a therapist before! Again, fascinating!

  2. Learn about yourself :white_check_mark:

    A time to focus on different aspects of yourself, not just, perhaps, the ambitious, money making side?

  3. Your situation is a temporary one :white_check_mark:

    Vast majority of people improve dramatically and some even 100% I’m told. Some people have to learn to live with the some more minor symptoms that might be left over, but that’s doable and they tend to fade away slowly too. It’s soooo important to keep this in mind through the dark times. See: A quote for coping with MAV

I would add (?):

  1. Use the chance to re-invent yourself and change your life for the better :rocket:

    I completely changed my job situation and as I got better promised myself to focus only doing work I found interesting and meaningful and got rid of the “mainly about the money” goal and motive. The illness helped me see that life is short and gave me a natural review moment upon which I seized!

    The whole event stopped me just going around in the same boring, predictable circle, or as if I was just on a desperate treadmill, doing the same thing over and over as if only that dimension mattered?

    It almost certainly helped me appreciate my partner even more and the privilege of having someone who loves you and definitely helped to lead us to getting married. :people_holding_hands: :heart:

    I suppose that means I started to take much less for granted, but in a positive way.

  2. Focus on new things, appreciate and get joy from the small things in life

    The illness gave me a new focus on my immediate environment, especially nature. That new appreciation brings its own joy. I feel other members have found this too, eg @flutters, who has posted many beautiful pictures from her exploration, although it obviously helps, as in her case, if you live in a particularly stunning environment :evergreen_tree: :deciduous_tree: :mount_fuji: ! :slight_smile: Perhaps if you don’t, that’s another change you can consider? ;). At the time I used to walk up London’s canal system for hours, watching the birds, the fish and the people go by, appreciating all this going on in a peaceful spot in an otherwise busy city, very calming!

All of those things turn what initially appears to be only dreadfully, desperately, unendingly negative into something wonderfully positive!

Hope you continue to see improvements matey, all the best!! Thanks again for your thought provoking Topic.

4 Likes

Thanks for appreciating this forum and for putting up such positive posts.

The above made my :heart: Sing with joy.

James couldn’t have put it better. Thanks again Max.

2 Likes

Inspiring and very useful story clearly told from the heart. And as the others have said, so generous and caring of you Max to take the time to come back to this site to post your video. Good karma :two_hearts:

1 Like

Thanks Matt. Yea the vibrational dizziness was so difficult to deal with. I am currently on topiramate and Botox. I understand you being cautious with topamax, it’s not for everyone and can have it’s side effects. I highly recommend botox if you can find someone who does it and get it covered by insurance, it’s been my best preventative by far. Hope you find something that works for you!

1 Like

Love what you said here James. It really does put everything into a new perspective! I like how you included that it can change your life for the better in many ways. I’ll have to try getting out into nature more, that’s a good idea. Your thoughts and input have always been so supportive throughout my journey and all of my posts on here, thanks!

1 Like

How encouraging your video was for me! Ive been dealing with vestibular issues, headaches/migraines for over 4 years now and still have yet to find the right doctor and treatment. Ive had times where ive been hopeful only to get let down again and feel hopeless. Perseverance is key though and being your own advocate too as well positive thinking. I hope to heal one day and be able to help someone else with my story just like you.

May i ask what you are currently doing to manage your symptoms? Medications, diet, ect? Thank you.

Do they do the botox injections in your occiptal muscles or your neck?

Hi Erin, sorry to hear your journey has been going on this long. I encourage you to stay hopeful and optimistic, you will find the right thing for you! As for me, medication wise I take topiramate and Botox. The injections are in the front and back of bead, neck and shoulders- so they do both the occipital areas and neck. It has been my best preventative so far and definitely recommend it. I also do the Heal Your Headache diet and probably the most helpful symptom management has been through stress relief and lifestyle changes! Hope this helps you

Thanks so much for the encouragement, Max! Greatly appreciate it. Do you also have chronic neck pain as well? I do.

Sounds like medication, Botox injections and diet were key to your healing along with a attitude/thought change.

I get massages with cupping twice a month- really helps my tight neck/occiptal muscles. Just need to get this dizziness and headaches under control some kind of medication i think.

1 Like

I used to have a stiff neck all the time and believe it was one of the symptoms of my migraines. Once I got those under control, my neck has felt much better. I think the massages and cupping are a great idea! I’ve had that done a few times and was definitely less tense overall. I think once you find the right med for you and are able to better manage your migraines, the dizziness and neck will improve!

@Jumpmax23 can you talk about some of medications that haven’t worked for you?

Hey Brian, yea that’s a great question. While it’s difficult to tell because I was on several different meds at once, I know certain ones worked better than others. When I was on verapamil I didn’t experience much improvement, however when we added an SNRI, Botox and topiramate I improved drastically within several months. So I don’t want to discourage anyone from trying certain meds because I think each one can work differently for each person and their unique brain chemistry, but in my case the calcium channel blockers and beta blockers didn’t seem to be as effective as SSRI/SNRI and topamax/Botox combo!

1 Like