2 months of dizziness, anxiety, strange feelings. Original dx of VN was discredited.
Posted , 8 users are following.
Hello all,
I am an otherwise very healthy person who lifts weights 3-4 days per week and plays competitive basketball 2 days a week. On May 14th 2016 I was driving for a quick stop into work. All of a sudden my legs and hands became sweaty, I was confused as to where I was or where I was going and eventually my vision blacked out. I was able to safely pull over. When I came to (seconds, not minutes later) I went straight to the ER. They diagnosed me with a panic attack and dehydration.
2 days later it happened again (but I didn't black out). This time the ER doctor told me I may had Vestibular Neuritis. My primary care doctor later agreed. I took 2 weeks off work where I was unable to do ANYTHING but lay in bed or mope around the house. My life felt like a dream. I was sent for VRT and did it on and off for 1 month. I slowly became better, but there has always been a persistent brain fog or strange mental feeling that will not go away. On occasion I will have a blip where I feel I am going to pass out but then it goes away. I am also dealing with insomnia that is always followed by a bad day. It is present about 4 days a week and the other 3 days I feel *mostly* normal.
Last week July 14th 2016 (2 months after the initial problem started) I had a VNG with a neurotologist and saw a neurologist afterwards. The VNG came back perfectly normal and the neurologist now thinks VN is not the cause of my problems. I just had an MRI but results are pending. We will be looking @ cardiac, thyroid and autonomic nervous system workups to find out why I feel so awful. Luckly my providers are all pretty quick and I have amazing insurance.
My question is: Has anybody been diagnosed with VN or labs (which sounds awful, but at least it slowly gets better) and then had the diagnosis pulled out from under them? My anxiety (which has been a constant since day 1 of my problem) has gone through the roof because I might have something worse than originally thought! I've never had a single bout of depression/anxiety/health problems in my 30 years and I can't stop freaking out!
0 likes, 34 replies
kyle17
Posted
Hi all.
For anyone following the discussion, I have been on the heart recorder for 11 days. I've sent in quite a few recordings, but my doctor said that none of them are concerning. Still wearing the recorder for the next 2 weeks, but as the recordings were during symptomatic periods of either headache, chest ache or lightheadedness it's looking like my heart is probably not the issue (another thing rules out is good I guess).
I'm starting to believe I might just have an anxiety disorder stemming from the initial 2 weeks of being very sick. It's very hard to come to terms with though, considering the symptoms feel so physical. I am noticing a VERY strong correlation between screen time and symptoms. What used to just cause eye strain now seems to cause full blown fatigue and dissociation. Also, many symptoms seem to be preceded by neck and headache so I'm wondering if the stress is causing tension headaches.
PCP and neurologist still willing to try some other tests if things aren't improving, but they haven't decided on the next step. I do have the Paxil 10mg on hand to start whenever I feel comfortable, but I had some out-of-town friends stay over the weekend and I didn't want to begin a medication while I was hosting!
Hayhue kyle17
Posted
Thanks for the update! I had a nuclear stress test today to rule out my heart as well. Glad it's nothing too serious but hope they find something that helps for you! I've taken Paxil before. It's known for weight gain but it worked really well.
kyle17 Hayhue
Posted
Hearing it could be brain/heart stuff is so scary! Definitely glad they're slowly ruling that stuff out but means I'll be going back and forth with them for even longer.
Unfortunate story: I had 3 days straight with absolutely no symptoms. None! I felt compltely 100% normal. My wife had off work yesterday so we decided to go to lunch together. As soon as walked in the door of the restaurant I got VERY lightheaded and my whole body felt weak and breathing felt so difficult! I managed to keep my composure and order food, but it took all my concentration to stay standing and focused. I wasn't able to eat once I got my food. Too much nausea. The worst of it went away after about 20 minutes and I was able to eat, but I felt dissociated and unfocused the rest of the day. I have no idea what triggered this. I felt happy and had a great outlook that morning. Maybe it was the noise, lights or the small amount of caffeine I had that morning. No idea.
I slept well last night but woke up really groggy. That was the last straw. Despite my fear of side effects (weight gain and sexual problems mainly) I took my first dose of Paxil 10mg this morning. I figure I'll try it for 4-6 weeks and see if things improve.
Heart recordings sent in are still all benign, even during that episode.
Caspert79 kyle17
Posted
Hi Kyle. Did you have a tinitus or a flu before you developed these problems. I'm experiencing similar symptoms and in my case I'm starting to think it could be Chronic Subjective Dizziness.
kyle17 Caspert79
Posted
I had symptoms similar to a hangover a few hours before the problems began. I did develop a 2 week long sinus infection/cold a few days after my "VN" began, but not beforehand.
I am about 3 months out from initial symptoms and the only symptoms that still really bother me is a sense of dissociation, on/off lightheadedness and insomnia (which leads to a cycle of feeling groggy which triggers the lightheadedness), but actual vertigo-type dizziness is pretty rare for me now. It looks like Chronic Subjective Dizziness can be caused by an anxiety disorder which is what my PCP is realling homing in on with me. (Although my neurologist is still pushing for a few more cardiac/autonomic tests).
Caspert79 kyle17
Posted
Interestingly, I've also experienced hangover like symptoms before my dizziness began, but in my case it lasted for about a week. Before that, i had a sinus infection. Seems to me these problems originate From some sort of viral or bacterial infection. In my case i notice my symptoms worsten immediately when i focus on it, so in my case some anxiety seems to be involved.
kyle17
Posted
I know this is an old post, but I thought I would follow-up in case it helps anybody who has been going through something similar.
It has been about 9 months since the start of my symptoms. In the last two months I have only felt symptoms on two or three occasions and it lasted less than an hour each time. My doctor is slowly weaning me off Paxil to see if I am completely back to normal without it. I have Xanax ready if needed, but I haven't felt the need to use it for a few months now.
I didn't do anything special to get over this. I just did the recommended workups and tried to go about my life. It took a lot of sick days at work and taking things slow in the gym and life in general, but by just powering through it I feel I've put it behind me for the most part. If it was VN I am assuming I have compensated. If it was something hormonal it maybe sorted itself out?
I hope that other people who are just now going through similar symptoms can understand that it will get better. In talking with a lot of people who have a similar story to mine it seems that in the majority of cases there is a good chance of a complete recovery from this kind of thing.
ImAnon kyle17
Posted
Did you notice the Paxil worked for you after a few weeks?
This would be a pretty good indicator people with our issues actually need SSRI meds and it is caused by anxiety.
Let us know if you can.
kyle17 ImAnon
Posted
It's hard to tell because I was slowly getting better when I started the Paxil, but a few weeks after starting it my symptoms were nearly gone for good. If it comes back after weaning myself off of Paxil then I'll know for sure it's some form of anxiety. It's just so hard to tell because it never had any triggers. The episodes were completely random. I could be happy, sad, resting, working, in the dark, out shopping under bright lights...
In the end I had no choice but to agree with my doctors that it is some anxiety or autonomic nervous system disorder because every blood test/scan came back negative and the combination of time/SSRIs cleared my symptoms.
I am on low dose btw, only 10mg. My PCP said I probably didn't need the normal 20mg+ because I have no depression alongside the anxiety symptoms. Currently I am on 10mg/5mg on alternating days and have seen no increase in symptoms.
ImAnon kyle17
Posted
Well I'm glad you got it worked out!
Thanks for the info/update.
Hayhue kyle17
Posted
Glad to hear you're doing well!
nicole75069 kyle17
Posted
First of all I wanted to say thank you for coming back on here and updating us, that really gives me hope. I've had similar symptoms since August 31st and can't seem to find out the reason why. Did any of your docs mention vestibular migraine at all? A few of mine have mentioned this but I haven't recieved the diagnosis yet. I'm really hoping my symptoms will resolve with time too as I am only 24 and can't imagine having this for the rest of my life.
ImAnon kyle17
Posted
Also if you could please update whether or not your symptoms are gone once you're totally off paxil that would be great!
kyle17
Posted
So I have been weaning myself slowly off of the Paxil (now down to a small dose every other day) and my symptoms are becoming more frequent than they were while on it. They have not gotten as bad as they were before, but I find that I am getting lightheaded and jittery every one or two days and have to sit down and focus on breathing. I haven't felt the derealization or anything like that. Work and life has been a little stressful the last two weeks so I can't count that out as being a factor.
Not the greatest news, but at least it hints that the Paxil is probably doing its job. I was a little sceptical before. I am considering going back on every day to see if that gets me back to where I want to be.
ImAnon kyle17
Posted
Thanks for the updates!
kyle17 ImAnon
Posted
The only negative side effect was insomnia for the first week or so. After that I have not noticed any of the reported side effects. The main complaints seem to be:
1) weight gain/loss (since I feel normal again I'm actually back in the gym and eating enough food so it's helped more than it has hurt considering I lost 25 lbs while sick)
2) insomnia, which ended after the first week or so. I do feel a little groggy after taking it some days but that ends pretty quickly. Could be I'm just a generally groggy person in the morning.
3) sexual dysfunction, which has not been an issue at all. I take it first thing when I wake up which is recommended if you do your business at night usually.
Keep in mind I am on 10mg which is less than the normal prescribed dose, but it seems the reported side effects are a little blown out of proportion online even at 20mg. I have a friend with major anxiety/depressive disorder on 40mg paxil and the only complaint she has is lack of libido. She works out and is in great shape and sleeps well according to our talks.