I’m writing this in the hope that I can feel less isolated with my symptoms - no one around me can understand what I’m going through and I’ve been feeling quite lonely. I’m also hoping this will allow others to feel less isolated!
This all began on October 6th 2016. I had been suffering from a week long headache (or migraine) but this had been happening for the past couple of months so I was just going through the motions of it, had no other symptoms at the time. I was highly stressed with study and had just been very ill with Epstein-Barr Virus. I was in a lecture and suddenly felt very strange; everything began to look weird and hazy, as though I was in a dream. I shook this off and thought it would disappear but it didn’t. My headache and this sensation of being in a dream worsened - it was then followed by severe brain fog, tinnitus, ear pain, episodic vertigo and dizziness. For the first week I was in absolute panic having no idea what was wrong with me. Everyone looked at me like I was insane. While I never had true vertigo, I would get the sensation of moving despite being still. The worst part is definitely the vision: clear but kinda of hazy and grainy and sometimes looking very unreal. I also had some intense sound and light sensitivity and also photopsia (flashes of light in vision).
I’m much more calm now and the intense symptoms have settled but are still very persistent. I’ve been diagnosed by two leading neurologists with vestibular migraine (they worked completely separately and were not aware the other had diagnosed the same thing so I’m confident with this diagnosis). I’ve began taking amitriptyline 10 mg which was helped the pain and dizziness a bit but not much else. I’m due to increase soon which I hope will help. I’m out and about and leading my life mostly as normal except I can’t attend uni just yet and feel pretty disconnected still.
What I’m really looking for is a glimpse into the future I guess. Does it improve? Is this a thing that stays CONSTANTLY for months or years as it has for me for the past 3 weeks? I feel so isolated at times. This isolation really gives me anxiety and all I think of sometimes is whether it will get so bad that I’ll become so depressed I’ll want to die. I suppose these are intrusive thoughts (I am definitely not suicidal, just scared of becoming it since you hear about people with chronic illnesses committing suicide so much) as most of the time I’m coping well and feeling alright. But this is definitely the worst part.
My neurologist told me that the vestibular system can be described as the ‘6th sense’, and is really important in our perception. She told me newly blind patients often experience the disconnected brain fog symptom due to the loss of sense and so it works the same with losing function of the vestibular system. That was comforting to hear. Can anyone else comment on this?
Danna, I’m a year into my chronic phase and on Amiyriptyline @20mg. Upping the dose from 10mg really helped but not 20 to 30mg, so that’s where I’ve settled. I also take magnesium supplements and have given up alcohol and only have max one coffee a day. The magnesium supplements side effect nicely help balance the effect amitriptyline can have on your bowel: the drug can make you a little constipated. Magnesium does the opposite!!
Yes it does get better. You learn all sorts of coping strategies and at same time the symptoms seem to get better at a rather slow pace if punctuated by relapses. However I’ve noticed that relapses that once took me 2 weeks to get over now take me 2-3 days to get over. Dizziness is generally better and less variable. My tinnitus has also decreased but again glacially slowly and with setbacks.
Why do you think you had a virus? I have a big theory about MAV which I intend to post soon.
You are young and very able to heal. You will get better and in 5 years may look back at this a phase of life that actually taught you a lot. I don’t believe this is a life sentence, far from it. I believe an ear may be injured but they are notorious for taking a long time to heal.
I had thoughts of suicide before I took meds. I didn’t need them initially but symptoms escalated to the point where I could no longer live a life that even barely represented normality. At this point I thought enough was enough and started medication. This was a VERY good decision. I look forward to the day when I can come off meds, but for now they are helping me cope very well: I’m even back to work 3/4 time. I now view work as a great distraction from MAV symptoms which is a wonderful virtuous cycle in stark contrast to this illness which has many vicious cycles associated with it; the ‘anxiety trap’ is one of them.
Do not lose hope, you will get better. There is loads of evidence on this site that people do. Note for example the number of posters that no longer post or rarely do so, generally because they are at least 95% better and have moved on. Good for them!! Check out the Success Stories thread. Check out liv85’s posts. She is better after just two years. Beatles909 got better even without meds on a similar timeline (by the looks of things 2.5yrs)! What a soldier!
Thanks for your reply! Really great to hear from someone who has been going through it for a while. I just upped my dose to 20 mg last night and woke up this morning feeling EXTRA groggy/tired and a little more out of it. I did also take some ibuprofen with codeine for the pain and I’ve come to notice that the codeine really exacerbates my symptoms and makes me feel super loopy. Hoping I’ll get used to the this dosage soon. I’m currently taking a migraine supplement that contains magnesium. Do you know if this is better taken with or without food?
I had a blood test last week and managed to catch the last of the antibodies of the virus in my blood, so it’s basically confirmed this is what I was sick with as the IgM and IgG both came back positive. I can easily say it was one of the worst sicknesses I’ve ever had, I was absolutely knackered and getting fevers constantly which is pretty rare for me. I’m really keen to hear about your theory as I am sure this illness triggered something to do with the VM.
You talk about relapsing. Does this mean most of the time you are symptom free? I feel like I am constantly symptomatic even if I don’t feel that ill on some days. I’m still trying to figure out the nature of VM and MAV - do they come in attacks like normal migraines or are they back to back so you feel like you’re constantly having one day in and day out as I am right now?
I’m definitely going to check out those success stories. I am hopeful things will improve. Looking at me from the first week to this week I am definitely changed. The acute part of the attack was unbearable I’m surprised I got through it.
Can I ask you if you experienced the disconnected, brain fog or surreal feeling with your VM? I know that not everyone get’s this, so it is comforting to hear when people do have it as it’s my most prominent symptom. I believe the dizziness, tinnitus, pain and light and sound sensitivity will settle - the only thing I feel hopeless with is this symptom.
Thank you so much for your response, it means a lot!
Danna- I definitely had the surreal, like I’m watching life on a movie screen feeling when this all started. It went away after a bit. It does get better. You will get better.
At times I’ve had the light headed, disconnected feeling and it has lasted days.
Most symptoms seem to recur. Some types more than others.
I occasionally get mild spinning attacks when sat
I recently regularly get spinning sensations in bed when lying on my side
I very occasionally have a period during which I feel lightheaded
I often have funny off balance feelings that change in character, appear to affect certain movements but only vaguely and show no trend
without meds I would get terrible nausea for hours on end, visual vertigo which is pretty horrible, and would not be able to feel the firmness of the ground with my feet
Mine only lasted the first 3 weeks or so. We are all different but your brain is an amazing organ capable of compensation and overcoming. Never forget that. You can and will improve.
James, you are usually so positive and reassuring to folks. It makes me sad to see you a bit down. Maybe you don’t think you have some mild bppv but since it’s often positional, it really sounds like it may be. If you have a physical therapist, see if they can give the epley a go.
Just remember, it’s a blip, not a relapse. you will come out ok and continue to improve. Perhaps it’s time to try vrt again and see if you can strengthen that vestibular system so it’s less prone to attack. :-).
James, I’m sorry to hear about your relapse. It’s amazing how diverse the symptoms of MAV are. The dizziness and vertigo is currently quite mild for me particularly after the amitryptiline. Would you be able to elaborate on the air pockets in the labyrinth? What makes you consider that as a possibility?
Sorry for delay in responding and thank you for your kind words, relapse is finally abating, if slowly.
My vertigo journey all started with some apparently mild trauma to the ear - I pointed my shower into my ear to attempt to rid it of some wax. I tried to be really careful and lowered the pressure and the temperature, but still with hindsight it was an extremely stupid thing to do. This lead to me getting dizziness within about 15 minutes which became more severe as the days passed. This spell lasted 5 weeks and then I was apparently completely back to normal. A whole 5 months later the vertigo came back. The doctors i’ve spoken to don’t believe it was the shower that made me dizzy, but the coincidence is just too great for me.
I observed from that day forward a kind of bubbling up feeling in my ear when i get out of bed in the morning that has very very slowly become less intense. I suspect that the trauma with the shower may have punched my inner ear with pressure and some air got in. Whether or not I still have a leak is uncertain, but I certainly have air pockets in my ear, and this would explain the migraines and the random symptoms that change over time.
It actually leads me to wonder if BPPV is actually due to air pockets, not otoconia.
I also wonder if air in the inner ear might explain many cases of MAV.
Furthermore it might make people suspect they have a fistula whereas in fact its all healed up and they simply have some air left that takes years to dissipate …
Good afternoon Danna. I’m 39 years old and have have vertigofor 3 years. I was just diagnosed with vestibular migraines after all the tests I had. I have been good on Amitriptyline for over a year. Recently I have not been able to drive since May. I know how you feel. I feel people think I make it up. The only people that can relate have migraines or vertigo. My family has been supportive but I have depression from this. I finished my bachelors degree in Socialogy last December and started looking for jobs but then this May my world stopped. I feel useless and feel like I’m a burden. They keep changing my meds and nothing is helping so they had taken me off of the Amittriptyline in August and now I have been put back on it as of this week. I take 50mg at night. Since been back on it I’m drowsy and out of it. But I’m also I’m also on Verapamil twice daily. I go to a medical university hospital at the headache clinic in January. I just want to get back to what you can call normal. The one thing I hate about these meds is they all make you gain weight and make you feel like crap. I can’t go to the gym alone feeling as if I may black out. They don’t know why I have done that. I get anxiety about being alone. So I’m always with someone so if I have a spinning episode I won’t be alone. I wish there was a magical pill. I have given up cofeee as of 6 days ago. I have been drinking Greek tea in the morning and also slowed down chocolate intake. I do do yoga and I go to bed early. I can tell the no coffee helps. It was hard being in a Starbucks junkie. But thank god they have green tea!!! I had gotten those tips from Mary another woman on this site. I’m glad there’s are more people out there that know how I feel. I also have given up alcohol (wine). I’m also a Vegertarian and I take Vitamins also. B12, and a regular vitamin along with iron and vitamin C. I have gotten neck massages on a regular basis and that helps. I hope that helps.
I’m sorry to hear of your relapse, you will get through it! Before I made this post the depressed and isolated feeling was really strong for me, but after reading and talking to people with the same experiences I feel so much better it’s amazing. It is really helping me cope and I’m sure it’ll do the same for you too!
I also quit coffee today and I already feel a difference. Although I notice you mention you’ve switched to tea, doesn’t this have caffeine in it too or am I just imagining things?
you will come out ok and continue to improve. Perhaps it’s time to try vrt again and see if you can strengthen that vestibular system so it’s less prone to attack. :-).
I had gotten those tips from Mary another woman on this site. I’m glad there’s are more people out there that know how I feel. I also have given up alcohol (wine). I’m also a Vegertarian and I take Vitamins also. B12, and a regular vitamin along with iron and vitamin C. I have gotten neck massages on a regular basis and that helps. I hope that helps.