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I have improved. A lot.

Hi everyone,

It’s been about 6 months since I have logged on this site. I actually forgot about it for a while.

I remember reading, “people who get better don’t come back to this site.” And that seems have been the case for me. I wanted to come back and give an update, and give hope to sufferers who have not seen one glimpse of it.

So, this started a little over 2 years ago at the age of 19. I got sick with a sinus infection, which I always get, and my life turned upside down. I woke up one morning when I had the infection, and felt so out of sorts, dizzy, trouble speaking, dissociation, numbness, brain fog, feeling of my face falling off?, lightheaded, not recognizing my self in the mirror, etc… I’m sure only you guys and girls know what I’m talking about. It’s simply indescribable to someone else. I’ve been trying to put it in words for 2 years, and still can’t do it.

I went to many doctors, and long story short, they just thought I was a nut. My primary care doctor is the only one who helped me my first year. She was certain it was a vestibular disorder of some sort. She referred me to vestibular therapy, and it helped me with balance/dizziness. I went through that for 5 months and saw some, but minimal improvement. I did more research on specialists who could help me. After many weeks, I found an extremely intelligent doctor, Michael Teixido.

My journey with him started in November of 2019, and I went to see him every 3-4 months after because he is so busy. In November 2019, he gave me propanolol. No luck with that at all, and it was the only med that gave me side effects.

January of 2020, he gave me Diltiazem. Diltiazem took away headaches and just made me feel overall a bit better. He also gave me clonazepam, because at the time I was extremely agoraphobic, and had the worst panic attack ever right in front of him. I thought I was dying and left the room freaking out. I have been taking Clonazepam daily for over a year and it’s been a tremendous help.

In April 2020 I did not feel satisfied, so he started me on Topamax. Didn’t help, but no side effects.

In August of 2020, after getting off topamax, he gave me Nortriptyline . This is where things gradually changed and I noticed slightly a month later.

In November 2020, he increased my dose after I told him it was helping me. Now this visit was the actual turn. After increasing my dose, I resumed normal life activities, hardly thinking about how I felt. I went to Florida over Christmas with my family, I sat in the car for 16 hours with no problems, went to the beach, went shopping at very busy places, went out to eat for the first time in a year, went to 2 tiki busy tiki bars and drank beer/ did shots, and all the normal stuff you’d do on vacation. I had a wonderful time. I drive an hour with ease now. Brain fog is a rare occurrence. All of the other symptoms disappeared except the “off”/ dissociated feeling. This symptom is absolutely infuriating, but it has lessened so much. I don’t really notice it unless I think about it. In other words, it’s there but not limiting me or bothering me to the extent to where I cannot do things.

I’m just back to life pretty much. I still have anxiety and some agoraphobia, but I still live life and do the things I love. I have progressed so far with the anxiety. Honestly, there was a point I truly believed I could never leave the house again. The anxiety goes away with time, just like vestibular migraine.

I got back to playing live music this past summer with my band. Strangely, I do not have anxiety when I’m playing music in front of people at a restaurant or bar. We have our first gig of the season coming up in March. I’m nervous but also pretty excited.

I am attending school online, because of covid, and I’m doing great. I’m an accounting major and i do very well in my courses compared to 1-2 years ago when I literally could not think.

Anyways, I just wanted to come back and say thank you to everyone. I know I did not interact all that much, but I did spend hours reading posts in my darkest days that gave me hope and feeling like I had someone that understood me.

You CAN and WILL get better. I can tell you I did not believe the success stories on here. I thought I was going to be sick forever. Just keep pushing, my friends. Be your own advocate and find a doctor who supports you. Never give up! You will fail, get frustrated, and fall, but that’s ok. It needs to happen before you get there.

I hope this can give someone a glimmer of hope to keep fighting and beat this monster.

Migrainemike is out for now. I’ll try to login again sometime.

I wish you all great health and a exponential recovery. God bless.

Till next time my fellow warriors,

Mike

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Thanks so much for popping back. And for the full and detailed write up that will prove so useful for others. I’ll anticipate their next question on their behalf. How much Nortriptyline did it take for you to reach such a stable state. Trust you are happy to share that info. All the very best. Helen

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Amazing! It’s good to see you didn’t settle and tried many meds to get where you are. So inspiring and gives us all hope.

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I love it when people post in this Category. Thanks @migrainemike. So good to hear you are doing better! Enjoy your music making!!

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Aww that is so great. Amazing you can play with your band again (what with the lights, noise etc). Thanks for the update, so glad you found a med that helped you.

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Hey! I see Dr. Teixedo and he’s great! Helped me so much. I had a set back early last year and he got me back on track. Also on nort and diltiazem. We’re working on reducing the nort a tiny bit for weight loss but so far things are a lot better!

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Hi Mike, I too started nortriptyline in November 2020 and haven’t had a bad episode since. I’m currently at 30mg and wonder what level you’re at?

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