2 Year Anniversary-Update-Hope

Hello Forum Friends,

Just wanted to give you an update and I’ll keep it short this time :slight_smile: (I remember how hard it was too look at a computer for too long)

2 years ago today my symptoms started and it’s hard to think about how much MAV controlled my life. I went from a very active person to nothing…no job, barely able to take care of myself both inside and outside my home.

Today 2 years later life is so much better. Many tests, a few meds, a good doc and I’m at about 90%. Much better than the 10% I was living at. It wasn’t over night, I lost a lot during the worst of it, but I’ve gained so much more. I appreciate the little things in life everyday. Everyday I do the things I did before MAV struck and I’m eternally grateful I can do them again (walk, think, go to the grocery store, go out to dinner, a movie, a show, enjoy time with friends, feel happy and human, take clothes out of the dryer…the list goes on and on). I’ve learned to be more compassionate and patient with people, and learned not to take for granted the people in my life who have seen me at my worst and stuck by me.

So please, don’t give up hope. Take care of yourself physically and emotionally. Know you’re not alone. Know you’re not crazy. Know there is someone (even if I’m half-way around the world) wishing you wellness.

Thank you for this forum and thank you for all your support…it meant the world at my lowest and still means the world now,
Judy

P.s. I know you might be wondering what I’m taking :slight_smile:

1 Like

judy what a wonderful story, I am so happy for you!!!do u think the diamox was the key to your improvement? i know that is a diuretic but doesnt that also have anti-migraine properties too? how long have u been on it? did the topamax help u at all? thanks for the update and the uplifting story :slight_smile:

also did u ever do vrt? if so did it help?

— Begin quote from "sarahd"

judy what a wonderful story, I am so happy for you!!!do u think the diamox was the key to your improvement? i know that is a diuretic but doesnt that also have anti-migraine properties too? how long have u been on it? did the topamax help u at all? thanks for the update and the uplifting story :slight_smile:

— End quote

Thanks Sarahd!!

Back in Feb 2013 I had a lumbar puncture. All along it was suspected I had inter-cranial hypertension, but…

  1. Although my gender, age and weight put me in a high risk category my symptoms hardly matched.
  2. I didn’t want to do it. I was feeling lousy enough without having a needle stuck in my spine.

My pressure was just at the top number of normal on some charts and slightly elevated on other charts depending on what you looked at. However I was highly symptomatic with MAV…ocular migraines, constant 24/7 rocking sensation like being seasick all the time, no balance, seeing things out of the corner of my eye, super stiff neck, trouble concentrating, you name it.

I’m not sure exactly what it was that started my improvement and my doc isn’t sure either. I had suffered through a very aggressive titration up to 200mg of Topamax (my choice trying to do it quickly because of trying to work and what was available for family support) and had side-effect through the roof. After I stopped Topamax (I had to wean myself off of it) and took a bit of a med break, I slowly started to feel better. The Diamox helped me feel even better and I’ve played with the dosage to keep side-effects to a minimum while having a lot of relief. I also feel like the Magnesium Citrate which I started to take in 01/13 helps a lot (and I’m not much into supplements and such). I don’t want to give Topamax a bad rap, it’s helped a lot of people, it just wasn’t the drug for me. Personally it did not help my MAV symptoms.

Keep hanging in there! Please don’t give up hope that you’ll find your answers and the right mix of life style changes and meds. I did the migraine diet (easy on Topamax since I had zero appetite) and took care reintroducing foods. I’m not a saint when it comes to food, but I hardly ever eat fast food and try and make healthy choices at restaurants (which I can go to now!!!).

Again, please don’t give up hope and know my wishes are there for you to find your mix!!
Judy

— Begin quote from "sarahd"

also did u ever do vrt? if so did it help?

— End quote

I did try VRT for a short period but wasn’t well enough. Have been strongly considering picking it back up again just to see if certain things can be a little better. Showers are still rough on some days, but manageable. Next break I have with work, I probably will try it again.

Again, keep the faith!!!
Judy

thanks for a really positive and well written post - really, really pleased for you that you are back to 90%. Long may it continue.

I am coming up to my 2 year anniversary of the moment the dizziness started, coincidentally when I was at a winter coastal location! I kept thinking it was gone as I drove to a doctor. Then it came back again every time I got out of the car.
I also really feel that magnesium helps, as well as no carbs. I had a huge upswing in steadiness and energy after taking epsom salt baths every night for a few weeks and the very day after not eating any grains. I’m starting to get headaches now though, on different sides of the head, just pings. Could be the new glasses, really can’t adjust to them.

— Begin quote from "cathbones13"

thanks for a really positive and well written post - really, really pleased for you that you are back to 90%. Long may it continue.

— End quote

Thank you! Wishing you wellness!

— Begin quote from "bluesky123"

I am coming up to my 2 year anniversary of the moment the dizziness started, coincidentally when I was at a winter coastal location! I kept thinking it was gone as I drove to a doctor. Then it came back again every time I got out of the car.
I also really feel that magnesium helps, as well as no carbs. I had a huge upswing in steadiness and energy after taking epsom salt baths every night for a few weeks and the very day after not eating any grains. I’m starting to get headaches now though, on different sides of the head, just pings. Could be the new glasses, really can’t adjust to them.

— End quote

Hi Bluesky,

Luckily I found driving pretty much okay until I was at my worst. I think it’s because it’s a fairly well controlled environment. Amen to the magnesium and healthy eating!

Hope get used to your new glasses (I just got some new ones and did not have any trouble adjusting) and hope you keep doing well,
Judy

Symptoms that go away while driving is the hallmark of Mdds, which seems to me to be a type of MAV. Depending on the doctor, I’ve had both diagnoses. I take magnesium and I know that hatha yoga and meditation, and eating no carbs (which just might be more vitamins because I’m replacing the rice and spaghetti with vegetables), really helps. It’s just a question of sticking to it.

I’m very happy to hear that you are doing so well :slight_smile: xxx

This is a post of hope - made me cry. Well done x

— Begin quote from "KathyD"

I’m very happy to hear that you are doing so well :slight_smile: xxx

— End quote

Thank you so much!
Wishing you wellness!!
Judy

— Begin quote from "westerveld"

This is a post of hope - made me cry. Well done x

— End quote

Read your posts…welcome to the forum.

Please don’t give up on hope, somedays it’s the only thing we have. This is a great forum where people just plain “get it” and you don’t have to explain what MAV does to your life to the average Joe. I know it’s hard to be patient especially when meds can seem to take forever to find out if they’re working and especially when you want to be better yesterday, but you will find your answer.
Even though I’m functioning at about 90% I still like to stop in here from time to time because this place was a life saver for me at my lowest of lows.
Please know that you and everyone on here are in my thoughts and my hope is that everyone finds wellness,
Judy

Thanks for stopping by for the update Judy, I’m thrilled to read that you are doing so well! It’s inspiring for others to to know that it’s entirely possible (and probable) to get better. Long may it continue! :smiley:

— Begin quote from "Victoria"

Thanks for stopping by for the update Judy, I’m thrilled to read that you are doing so well! It’s inspiring for others to to know that it’s entirely possible (and probable) to get better. Long may it continue! :smiley:

— End quote

Thanks Victoria!

Hope you’re doing well. Thanks for the good wishes!!
Judy