Hi everyone, so I’ve decided to join this forum to try to get some answers, since I’m at a desperate point! About 8 weeks ago I woke up one morning just feeling off and completely different. This was something that literally happened overnight. I’ve had these symptoms for the past 8 weeks. They are there 24/7:
-A spaced out feeling, sort of like having had a few drinks.
-I don’t feel like myself. Having some “derealization” feelings
-Going in stores or large spaces feels like sensory overload and I start getting more dizzy.
-Feeling disoriented in strange places or places with a lot of visual stimuli
-Poor concentration. Very bad brain fog
-Poor short-term memory
-Very bad light sensitivity
-Jumpy vision, trouble focusing eyes
-Certain loud sounds startle me
-On and off tingling in my feet, legs, arms and hands
-Constant 24/7 tension-type headache with varying pain intensity
-Severe anxiety and panic attacks (which I never had before in my life prior to this)
-Mild depression because of how much my life has changed in the past 2 months
I’m so desperate at this point because this has been life altering to me. I haven’t driven since all this started because I just don’t feel comfortable or 100% in control to get behind the wheel. I’ve had several panic attacks (which I’ve never had before this) since all this started and my anxiety is off the roof. I also feel somewhat depressed. I get very anxious going out to places because everything seems like too much stimuli and it makes me get very dizzy. I’ve gone to an ENT who ran hearing tests, balance tests, and MRI with contrast and it all came back normal, which he said, rules out an inner ear disorder or something more serious like a brain tumor or MS. I went to a neurologist who diagnosed me with intractable migraine and put me on a week long pack of steroids which just made me have horrible side effects. He now wants to put me on a preventative medication. At first I thought it could be Vestibular Neuritis, but all the ENT tests rule that out. My primary doctor also just ran some tests and I came back with high titers for the Epstein Barr Virus which she said could have triggered all this. My questions are, does this sound like MAV? Has anybody else had this happen due to a virus or infection? What would be the best medication for this? Would VRT help? Please help me with any info possible!! I’m so desperate to get better as I’m only 29 and I have a 17 month old to take care of!! Thanks in advance!
The symptoms you have suggest MAV imho. At least MAV symptom management may really help you.
Look at the flowchart on this page:
Discuss it with your Doctor
Yes, sounds a lot like this. As for myself, anxiety and panic attacks also came in a couple of weeks after my first vertigo attack. And I also never had any before. I think it comes somewhat automatically as you just don’t know what’s going on and you feel totally helpless.
Have you tried using dramamine ? This works great for me. Also Cetirizine. Best of luck !
I tried Meclizine which I feel didn’t do much for me. I’m now looking into a preventative. Hope I can find something that works. Thanks for replying!
Discuss with doctor but try Amitriptyline or Noritriptyline first. They are extremely effective if you can handle the minor and diminishing side effects.
Migravent helps me a lot. It’s quite expensive given the ingredients, but it is very well worth it. Expect a couple of days for the effect to set in. Also Cetirizine, Vitamin C and zinc are very helpful for me. I use Dramamine when needed, also quite helpful as a preventive, for example when I’m taking a flight. Also quite expensive, but very well worth it.
I stay away from wine, champagne and all non-clear liquors, by now I can enjoy a beer and occasionally a shot of Vodka without being affected too much.
Also please check your diet, I seem to do better when I stay away from flour products (bread, pizza, pie, etc.), but this is probably a bit different with everybody. Sadly takes a while for you to understand what kind of food works for you and what to avoid. But maybe diet doesn’t matter for you, who knows.
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Yes my neurologist wants to put me on Nortriptyline as a preventative. Would it also help for the anxiety aspect of it?
Yes but mainly because it’s such a good drug it will control your symptoms to a great extent. This will calm you!
Anxiety goes quite quickly over time because you soon get used to remaining symptoms and they no longer surprise you.
Note that the vestibular system is hard wired into the anxiety/emotional system because loss of balance is considered something high priority by your brain to take care of. Anything goes wrong here and you naturally get anxious. It’s an entirely normal reaction.
I definitely think diet has a big influence. I eat strictly Paleo and take many natural supplements which I feel have helped ease the pain but the “spaced out” feeling won’t go away, as well as the severe anxiety that all of this has produced. I’ll take Valium occasionally on very bad days but I try not to use it too often as I know it can become a habit. I’m looking for something more long term that can help.
Makes a lot of sense! No wonder when all of this began I started having panic attacks, which I never had before, because I felt so out of control of my body and balance. What are you taking that has helped you with your symptoms? As for Ami or Nor, what are some of the most noted side effects? I’m scared of some stuff I’ve heard about those drugs!
I’m on Ami. Main side effects are drowsiness (take middle of your evening don’t drive after), dry mouth (which goes over time mostly), a little bit of constipation (eat veg!) and very occasionally gives you vivid dreams. I’ve also had restless leg (twinging leg muscle) but that’s rare.
I’m told compared to many of the other drugs they are very low impact and easy to get used to.
I was wary until I experienced the improvements they provide. Night and day. I was able to be almost normal again!!
That’s good that you have found something that works for you! I’m definitely talking to my neurologist about it. I can’t keep living like this, I want to get back to living the life I had before. What were some of your symptoms before you went on treatment? How long have you been on Ami?