New here - my symptoms!

[Amsterdam87]

Dears, first of all I would like to express my gratitude towards this super useful forum. I came across with it and indeed I feel now with a bit of relief knowing that more people is – unfortunately – feeling same as I am doing now.

Also please apologizes in case you find some mistakes as English is not my native tongue

Everything started last 16th of January when I woke up in the morning. I opened my eyes still lying on the bed and everything around me was spinning crazy. I turnaround myself to the opposite side in order to improve the situation but it was still there… As far as I remember the total time of the experience was no more than 30 seconds, and during all the rest of that day I was a bit dizzy but not really suffering this bad feeling of spinning/ vertigo or only when I was in the bed and quite ´´mild´´. Small clarification, like 2 years ago I had the same one day after a party/ drinking and it completely disappeared after 30 seconds so I assumed it was part of the hangover. Also reading on internet saw that this type of vertigo attacks are quite common and normally go away after a while so I did not do too much importance back then.

The thing is that since that 16th of January until today I have being feeling like a residual- unsteadiness that even though is quite mild, is affecting me from an anxiety point of view as I am asking: is going to really disappear once? In addition going to Dr. Google was not helping as I came across with things like PPPD or VM which really freak me out.

Some important tips and questions:

• The firsts weeks this non-stable feeling was ´´worst´´ compared with now
• I never went to the doctor but straight to a specialized physio in vertigo who told me I got VPPB
• We did 2 Epley´s maneuver on the 2nd of FEB and 22nd of FEB, in the second time I was feeling a bit better than first. Again, my problem I think is not really VERTIGO as I only had once for 30 seconds (16th of JAN), my problem is this residual dizziness.
• I don’t have headaches, lights or blurry vision, pain in my neck. I never had nausea or vomiting. I can do more or less my normal life – gym, swimming, work- , I have not loose coordination or struggling when speak
• I can be in front of my laptop working for 8 hours non-stop and it does not bother me. I feel ok (even better) when I am in crowded places as my mind is more busy. For example yesterday in a big food market with some friends I was normal
• Lights, supermarkets, traffic jams … don’t affect me at all
• Going in car/ bus … don’t affect me at all

Some important background information:

• From 15 years old until 20 I used to have some migraines with aura – I can count the times with my fingers, not too much and not too heavy – and since then until today (34 years old) they went completely out. Sometimes only headaches due to stress at work/ university but nothing out of the ordinary

What I feel then?

• When I walk If I move my neck to the left/ right and after to the front again (to cross a street for example) I tend to have some seconds of not very balance world (mild)
• When I do things at home, cleaning, looking for stuff in the kitchen (up), then go low again, I tend to have some seconds of not very balance world (mild)
• When I sit in this type of bar-stools without any backrest, I tend to feel a bit non-balanced
• When I am sit like exactly in this moment and look up to the roof, I tend to be 1-2 seconds not 100% balanced.

As I was reading a lot of things on internet:

• Can I have residual vertigo after BPPV that is going away little by little?
• Do I have VM/ PPPD symptoms?
• Can be just that my brain is re-adapting again after a very hard vertigo attack (15th of Jan)
• Can I just being a bit overwhelmed and exaggerating a bit?

Please note in my country social security is a bit slow so I am waiting for my appointment on the 22nd of March with an otoneurologic but I am afraid all the test will be ok, and my concern is: is this residual whatever we can call it dizzy, vertigo, unsteadiness go away? Can the anxiety do it even worse than it is?

I have been a quite healthy person, both physically and mentally but for the last 2 weeks I am barely eating and with some anxiety episodes. Please note I a also quite against taking everything ending in -PAM (benzos) or any type of pill like these.

Your comments will be appreciated and sorry if it was too long!

Kind regards,

[Belindy]

Hi, welcome.

From what you describe, with the head tilting and feeling dizzy, particularly only lasting 30 seconds definitely sounds BPPVish to me. This condition can leave you with residual dizziness for sure. Vestibular rehabilitation Therapy (VRT) can help with this.

You mentioned you’re are not sensitive to lights, can more or less go about life with no issue, no nausea, complex patterns or places don’t bother you, it may not be VM.

But I’m not a doctor so a proper investigation might be in order.

I hope you find some relief to your imbalance you’re experiencing.

[Amsterdam87]

Thanks for your prompt reply Belindy and also for your good thoughts.

I guess overthinking and the hyper-vigilance I am having every day make me also a bit tired from a mental point of view besides the anxiety.

As this episode happened 50 days ago I really want to take it from the very beginning as I also guess would help better.

Do you really think residual dizziness/ instability can improve only with RV?

bests,

[Belindy]

Hi, It depends on what the root cause is. This is why an investigation and diagnosis would be worth pursuing.

If it is indeed VM, medication should help. But if it is BPPV, no meds will help. The Physio manoeuvre and VRT would.

Your anxiety seems to be elevated too. Not surprising with the vestibular issues. That and being hyper vigilant would make things worse. Believe me… I know. Been there (and largely still am).

Try to hang in there until your appointment. I’d be interested in their thoughts

[Amsterdam87]

Belindy, again thank you very much for you answer.

I dont really want to bother too much with my questions, but what would be the typical symptoms of VM? Also, one thing I have noticed is that I have a bit of lightheadedness in special situations. For example:

I am walking doing my stuff at home and suddenly sit up again with a straight posture in front of the PC (mild lightheadedness for 1,2 seconds)

I am in front of the PC and take a pen to write down something (with the movement of neck, mild lightheadedness for 1,2 seconds)

Is that normal to feel it or match the residual dizziness concept?

Thanks,

[turnitaround]

@Amsterdam87

but what would be the typical symptoms of VM?

Please make use of the existing site resources. Take a look at Symptoms common to MAV & VM. It is the very first bullet point on the Welcome to mvertigo! Topic.

We should not be repeating stuff if at all possible.

[Amsterdam87]

Thanks and sorry for that.

bests,

[Amsterdam87]

Dear @turnitaround , you seem to have experience in symptoms, can you please briefly comment mines?

Anyone else that feel identify with my symptoms or can add some light on my current status please?

Sorry but I am a bit desperate for opinions!

Thanks in advance

[turnitaround]

Hey Amsterdam, we can’t diagnose here and should really leave that to the doctors, but your case is definitely puzzling (as many people who have these kind of symptoms are).

Do you have any ear symptoms, like a feeling of fluid, fullness or tinnitus?

There are those who believe this kind of issue can be brought on with a history of migraines, but in my case (and others) it can be a problem with the inner or middle ears (and the migraines are a result of, not the cause of the vestibular troubles).

Anxiety is definitely understandable - it’s incredibly unsettling. But know that for almost everyone this is something that can come and go and leaves no lasting damage.

[Amsterdam87]

Thanks for your reply, I appreciated.

I don’t have any ear rare symptom like pain or feeling noises. I don’t have sensibility to both loud music (for example) or visual complex environments. I was in a bar last Saturday until 1 am, I can enter in supermarkets, etc. No headaches, no aura, no pain in my head.

I have been reading a lot of stories and symptoms over the forum. It is indeed a piece of hope all the stunning testimonies and a lot of people willing to support. But to me PPPD/VPPPB/VAM is still confusing me even knowing that all of us are different human beings.

I don’t know what to guess or believe. I could anticipate my appointment with a social ear- doctor tomorrow but as per all the testimonies I have seen I am pretty sure he/she will be not very familiar with these concepts.

[turnitaround]

These conditions can often manifest as a sliding scale, some people have a small proportion of the symptoms, whilst others have the whole lot and very badly.

Consider yourself very fortunate not to have tinnitus, as that can literally drive people crazy!

[Amsterdam87]

I don’t want to full this topic- presentation with a lot of questions, but I could not find anything in the forum related with ´´residual dizziness´´ and found some articles on the net. Also one OTO from my country with a bit of experience and knowledge in the topic told me about the same. Are you familiar with this concept?

It basically says that is quite normal that after Epley´s maneuver or even after a vertigo attack, there is some mild feeling of unbalance that little by little is going away, for some people might take 2-3months… I really want to believe this is my case as I am not matching too much with MAV/ PPPD

this situation is driving me crazy! Thanks @turnitaround I do appreciate your answers.

[turnitaround]

It is quite common from reports on here that “vestibular attacks” are often followed by two or so weeks of greater unsteadiness or imbalance, sometimes referred to as “getting back to baseline” (which may not be zero symptoms)

[Katharina]

@Amsterdam87

there is some mild feeling of unbalance that little by little is going away, for some people might take 2-3months

For me, it takes 2-4 weeks for the residual vertigo/dizziness to go away. It is important to be patient.

[turnitaround]

Covered in many posts already. Here’s a good topic amongst them: Pattern of attacks - #2 by turnitaround but I’ve tagged a few more under #relapse. Let’s try to discuss that topic under existing Topics.

[turnitaround]

Hey, @Amsterdam87 how are you getting on? Any emerging pattern with your symptoms? Are you recovered yet from your last BPPV-like attack and/or treatment session?

[Amsterdam87]

Hello @turnitaround and thanks for being interested in my situation. I appreciate that.
Also apologizes for my late reply but I was trying to be a bit out of these forums and FB groups to relax a bit my ´´anxiety´´ (it was difficulty and I could not do it all the time, but I tried it)

The reality is that after 70 days since the first vertigo attack, I am exactly the same. Some days symptoms can vary a bit but as per my ENT anxiety and specially extreme hyper vigilance (which I have) can trigger symptoms and we can believe that we are worse than we actually are. Also I am not sleeping 100% as usual, so I guess it is quite common to feel more tired from a cognitive point of view and as a result have more brain fog, etc.

Currently I have not developed new symptoms or triggers, my problem is when I do different and fast things at home, or when I walk avoiding people in the city, changing direction, stopping, moving my neck, etc. …

And this is not even dizziness, is more a feeling to be a bit off/ slow/ not 100% calibrated but still, is quite mild.

I don’t have (I touch the wood) headaches, aura, nausea, spinning, real dizziness, ear full, pain in my neck. I can walk at 95% the majority of the time with my stability (only I can struggle a bit if I do what I mentioned above). I can swim, I can run. Cars, supermarkets are ok.

I don’t know… I know I am not myself 100% but looking at some testimonies here I feel quite bad complaining.

update about doctors: ENT ruled out tumors based on information as I dont have symptoms of the same. I did also a caloric test and a nystagmography. Today when get the results the lady told me my vestibular system is PERFECT, and if I had a real vertigo attack 70 days ago she would be able to see it in the results (!!!). I am not crazy, I know what I had that day!

My question is: can you have vertigo attack (spinning) non- related with the vestibular system? is that actually possible?

Probably now my GP will ask me to run MRI, blood test and neck tests just to check.

20 of April I have an appointment in another country (close by) with a famous Dr. with knowledge in vestibular issues such as PPPD, VAM, MdDS, etc. I wish I could be here in 2 weeks posting that I needed to cancel as everything went out.

Sorry if at the end my post was so long.

regards,

[turnitaround]

@Amsterdam87

Also apologizes for my late reply but I was trying to be a bit out of these forums and FB groups to relax a bit my ´´anxiety´´ (it was difficulty and I could not do it all the time, but I tried it)

I know exactly what you mean.

This is why we have our Research, Theories & Controversies👨‍🎓 Category locked to users below Trust Level 2 (whom we hope have got to a stage where they can deal with information therein in a calmer way)

Sometimes taking a break from ‘online’ is really sensible and allows you to focus on other things more easily and reduces the anxiety.

@Amsterdam87

My question is: can you have vertigo attack (spinning) non- related with the vestibular system? is that actually possible?

It’s sad to say this is controversial, because I feel like medicine has lost it’s collective mind, but I’d say: “absolutely not!”. Of course your vestibular system is involved for this to happen! That said, this ‘control setup’ is very highly tuned, so you can imagine how easily it can be ‘knocked out of whack’?

Therefore, whilst the impact may make you anxious and cause you all kinds of horrid symptoms, it does not mean you have anything particularly seriously wrong with you (usual caveat: make sure you have MRI for the extremely unlikely case you have a neuroma)

(btw, I just noticed, and it’s kind of cute, give your username, that the site automatically provisioned you with an orange A for your initial Avatar …)