I have never written on any of these sites and am seeking someone out there who can relate or sympathize since no one around me can
I am 20 and feel like I’m 80 and would like to get my life back on track. In about May of this year, I had violent vertigo while driving home, ignored it and it persisted. Anxiety filled my head and I frantically searched the internet for anything. Made a doctor’s appointment and was diagnosed with anemia. Blood tests later ruled that that was innacurate. Anxiety began filling my head, day in and day out, I was unable to leave the house without fear of another vertigo attack and nausea creeping in. One day I tried to force myself outside and that was later shot down with a panic attack in a grocery store- I felt like I’d never be normal again and never be the same woman I was before all of this. This attack ended me up in the ER, diagnosed right on the spot with Ménière’s. Sent hope with blood pressure meds, meclizine, zofran (nausea). The blood pressure meds just made me lightheaded and crappy so I stopped taking them and gave up hope again. Went to a gp who flat out diagnosed me with GAD (generalized anxiety disorder) and got sent home with Effexor and xanax. I finally got an appointment with a neurotologist who thinks I had neuritis and now Vestibular or silent migraines (MAV) so tried so many meds for that. Nothing has worked but now going to try elavil and hopefully it will help with the depression and insomnia too! What has worked for any of you? I have only dabbled in treatments and home remedies and am failing over and over. I am losing hope but keeping the positivity the best I can. I just feel like I am losing my mind and have sadly sprialed into a hole of depression and am holding on to any positivity I can.
Now, what has everyone done to reduce their symptoms? I have eye floaters, light and sound sensitivity, vertigo, tinnitus, head and ear pressure and horrible horrible brain fog. That whole floaty, dreamy almost out of body experience is most definitely the worst symptom and it doesn’t seem to go away. MRI & CAT scans are all normal, blood tests all normal. The only thing that has “helped” is exercising every single day. I take fish oil, vitamins d and b12, and wish to have my life back on track seeing as I am only 20 years old and in university and am unsure if I will be able to even do that in the fall. I feel like no one around me can understand, but who can unless you go through this. If anyone has ANYTHING for me, I mean ANYTHING I will gladly take it and accept any offers. Thank you so much for reading and have a wonderful day
Yeah, I had the same problem … my second drug was Amitriptyline (elavil) and that WORKED (as well as I imagine any drug can).
Sorry you are going through this so young … its HORRID this MONSTER!
Yes, Menieres diagnosis … hmmm … doubt it … not meant to happen to someone so young.
You could have a perilymph fistula and secondary hydrops (that is what I believe I have and all the symptoms are the same.) Symptoms of this also mimic Menieres which is why that doctor thought you had it. The Hydrops (ear pressure) comes on after the fistula begins to heal. It resolves in time (90% of fistula’s are supposed to heal spontaneously).
Nonetheless go for the Amitriptyline and you should hopefully find relief. Maybe you will be able to come off the other drugs. That’s all I take.
The anxiety will go away once you have things under control. I haven’t had that for months and months.
Best of luck!!
Thank you so much! I appreciate your writing back. How did you find the hydrops? And did you have brain fog too? That’s my biggest obstacle is getting out of the haze. Have a great day
The Hydrops was an alternate diagnosis to MAV, it’s known to happen once a fistula starts to heal. It was an ENT surgeon who heard about my ear trauma and concluded this. On reading about it, turns out it has exactly the same symptoms. Yes I’ve had brain fog, but weirdly only once (and even though I was on Amitriptyline at the time). However, its worth trying this med because its considered one of the better medicines for MAV and Hydrops.
btw, I suspect my fistula has healed now as do not get fluid in my ear like I used to and at the same time my vertigo stopped. So now its just the MAV/Hydrops to deal with.
Amatriptyline works well for a lot of people; for me the side effects stopped me from taking it on day 2, and I am now trialling Pizotifen which seems to be helping (only a week in though).
Yes, it is a horrible thing to go through, especially when you are only 20, but for me the biggest single improvement came when I accepted the fact I had an illness and that I had to allow myself to be ill, and allow myself and my body to get better in time.
It is hard when it is a weird condition like MAV, but you’re not losing your mind, and there is a lot you can do to avoid depression. Remember, you only have to do one day at a time. Think: what can I do to make today as good as I can? Don’t think what you can’t do, think what you can do. and do some of the good stuff. find things you can enjoy now, and do them.
for me, MAV has been like getting hit by a truck and falling into a timewarp. I spent ages freaking out, thinking WTF happened, but when i finally found out I had been hit by the big gnarly MAV truck, but that I was still alive and can still make a full recovery, it seemed to take a huge chunk of the stress away. i’m not better yet, but i’m not freaking out, and the freaking out was at least as bad as the MAV, maybe much worse.
Don’t beat yourself up about what you can’t do for now. Just allow yourself to get better.
If you had been hit by an actual truck, you wouldn’t try to force yourself to get better quicker than it takes. MAV is the same. you can get better but it takes time.
Good luck, and let me know if I can help.
Thank you so much, this really was a nice thing to hear in a different perspective
Yeah, I’d like to add that on a bad (mentally) day the best thing you can do is actually go out and go for a nice walk. Getting out for a peaceful walk makes all the difference.
I definitely agree! Exercising has helped me a lot too. Pushing yourself on the mentally deficient days makes a difference.
Amitriptyline is a god send. It has anticholinergic properties which help with dizziness. Also sleep is infinitely better with Ami. Pray it works for you.
Thank you so much, so far it definitely is taking the edge off. Have a wonderful day!