Undiagnosed ‘Dizzy Episodes’

[yoshiro]

First time poster, hope I’m using the platform as intended. TLDR at the end.

I was hoping to post this to see if anybody can give me any advice or point me in the right direction for a diagnosis. I am a 24 year old female suffering from a variety of differing symptoms and I have been off work sick since May. From January to March I was also off sick starting with a large 2nd degree burn that I sustained at work, a few days after this I developed glandular fever which developed into quincy and it took me a long time to recover. I have had glandular fever 4 times before this (once a year) so although it was rough I knew what I was going through. I also have previously been diagnosed with IBS, Depression and Anxiety (although before the illness I could confidently say the latter 2 were not at all an issue).

At the end of May I had been back at work for 2 months. I worked as a Barista and had done with the same company for 5 years so was very comfortable in the role. I was serving on the coffee machine and suddenly went really dizzy and disoriented, I left my shift early and had a bad panic attack because the whole episode came on in an instant and lasted for a few hours. I thought this was a one off until it started to happen all the time. At first it was once a week, then suddenly a few times a week until it was most days. I had originally just stopped going to work but was managing to do most things I would usually do like go for day trips with my boyfriend or go out and drink.

My symptoms are random and always come up in random patterns but include:

• brain fog
• confusion
• dizziness
• impending doom
• panic
• heart palipations
• headache that wraps round the forehead
• jaw clenching
• crushing sensation in chest
• cold sweats
• sensitive teeth
• overactive bladder
• stiffness
• disorientation

Another important symptom that I have been having is that since January my bladder has been so bad in the sense that I will wake up about 8 times in the night to go to the toilet and my bladder never ever feels empty. I don’t have a UTI but some urine work has shown high white blood cell counts so I have been prescribed antibiotics which have not helped. I have had a camera in my bladder that showed it looking completely healthy so no diagnosis there. It is an exhausting element of my illness but arguably the least scary as it’s inconvenient and uncomfortable more than anything else.

I used to smoke weed semi regularly and had a few episodes that seemed to correlate with that so I immediately stopped and no difference seemed to happen. Some of the episodes seemed to trigger intense panic and disorientation as well as what I can only describe as losing my grip on reality. I would be confused to the point of not knowing who my friends and boyfriend were and I would feel like I was in a bad trip. Luckily I haven’t had many of these specific episodes but I think it’s important to note that I stopped smoking weed completely at the start of May and even in December I have had an episode pretty similar to this. Even the smell of it near me makes me panic at the moment.

I was prescribed medication for balance that is also used as antipsychotic. I have a feeling this may have triggered some of the more sinister impending doom symptoms and panic as they were more frequent around the time of taking these but I am not sure. I was also prescribed Amitriptyline for my mood and incase it was anxiety. I took this for 5 days but on the 5th day I woke up distressed and completely hopeless but I knew this was down to the tablets so stopped them immediately and improved straight away mood-wise.

I also was comfortable drinking from May till about August because it seemed to be the only time my symptoms didn’t spike. I already suffer from asian flush so I never drank lots anyway but I have had to stop drinking now because my daily symptoms are just too unmanageable to go out.

At one point we considered that it May have been my contraceptive injection. I have been on the depo for about 7 years on and off and my boyfriend noticed that the pamphlet said it’s only recommended to use for 2 years as it starts to use up your calcium supply. I came off the injection and had a really good 4 weeks in october where I had no symptoms whatsoever and no anxiety about my health until one day they all came back at once. I tried taking calcium supplements which caused me headaches and had my bloods done which also came back normal so that was another dead end. I am debating going back on the injection as I find periods a bit too unmanageable with my IBS.

I have been tested for Addisons disease recently which came back negative. I have had all sorts of blood works done which I’m pretty sure only suggested I was vitamin D deficient. I have had a CT scan of my lungs, X-ray of my chest, countless ECGs that show my heart is fine, plenty of blood tests and about 70+ doctors appointments and A&E trips.

I have been told nearly everytime at A&E that it is anxiety which I do appreciate there is a massive element to it but the physical pain is too intense to just discount it as anxiety. I had a really good few weeks in October where I didn’t pay the doctors or emergency room so much as a phone call so I am confident that it isn’t just a mental thing.

At this point in December I have spent the past 2 months in and out of A&E with intense and painful symptoms. I am pretty much bedbound the rest of the time and I am housebound too.

I was coping really well in the beginning and extremely optimistic but since my health has deteriorated so rapidly and my symptoms are nearly every hour of the day now I am completely desperate. My quality of life is really awful at the minute and my support system is also suffering. I went from being very outgoing and independent to not even being able to walk to the corner shop out of fear of ‘going pale’. I have tried to push myself but between my bladder and my more sinister symptoms it’s just not possible to complete daily tasks anymore.

I used to be so comfortable and enthusiastic about socialising but now because of my brain fog and occasional stiffness as well as the risk of having an ‘episode’ I just avoid it completely. The only people I manage to see are my family, boyfriend and flatmate. I expect sometime soon I will have to move back in with my parents as my boyfriend and flatmate have lives of their own and cannot care for me as much as I need.

I hope I’m not painting too much of a sob story, I am just trying to give you the bigger picture of how the illness affects me and see if there is anything that might point towards an answer. Seeing as my health has deteriorated so rapidly my family have kindly paid for a full body MRI which I am having this week and I have asked the NHS to do any bloods tests that they haven’t don’t already. I am also on the waiting lists for Neurology, Cardiology and ENT but I know I’m about 6 months off (already 6 months in). I have also had to start therapy because of how much I am struggling with the pain and fear of dying that is coming with my symptoms.

If anyone has any suggestions at all that would be incredible and I’d be so grateful. Also any suggestions for coping mentally with the uncertainty of an undiagnosed condition would be amazing. I am going to get my boyfriend to monitor the comments so to not give myself any unnecessary health anxiety but if this sounds like something you or a relative has maybe gone through do let us know. Thanks for your time!

TLDR

24F: housebound with worsening undiagnosed symptoms since May, including brain fog, dizziness, chest pain, heart palpitations, overactive bladder, and panic. Symptoms started suddenly while working and have progressively worsened, despite stopping weed, alcohol, and the contraceptive injection.

Numerous tests (bloods, ECG, chest X-ray, bladder camera) have shown little except vitamin D deficiency. Currently waiting for neurology, cardiology, and ENT referrals but desperate for answers as quality of life has deteriorated. Full body MRI scheduled this week. Seeking advice on possible diagnoses or coping strategies.

Crikey - you've had a lot of investigations!

What is your Vitamin D level?

I'm not a medic but is it possible you have post viral fatigue? To have glandular fever 4 times sounds very odd - was it diagnosed each time with a blood sample?

I know!

My doctors notes just say ‘Indicative of 25-OH vitamin D insufficiency’ so they recommend I try supplements.

I was diagnosed with glandular fever nearly every year since 2019 but always bounced back eventually. I’ll definitely voice this with my GP next time though, thank you!

Amitriptyline can cause anxiety. I expect you were given it primarily for your bladder issues. It's sometimes used for children for bewetting.

This is anecdotal but cannabis can permanently affect the brain, people don't always go back to normal when they stop it.

Is the vitamin D deficiency being treated. You need to know you levels. Whatever the NHS says is "fine" (for lots of things not only vitD) often isn't. Their bar is low, "alive and not taking up a hospital bed" seems to cover it. That's not most people's definition of "fine". Other countries have a higher bar. So if you've been treated, get your results and do some googling to see if the vitD is still an issue.

If you're exhausted, you're going to get brain fog and palpitations due to that. Push for some meds to allow you to sleep at night.

You need to learn about "pacing". It's a strategy to manage for people with ME/CFS. Not saying you have that, but if you're bedbound at times and doing less and less due to symptoms/fear of symptoms, you could lose physical fitness. Which will trigger the vicious cycle of getting easily exhausted and then having more symptoms, then resting more and doing less, losing more physical fitness so you get exhausted quicker and have more symptoms, rest more and lose more physical fitness and on and on and on until you're completely bedbound. Pacing will help prevent this.

Having scary symptoms is naturally going to cause anxiety. So therapy or meds to treat that is a good idea. A lot of your symptoms (50%-ish) do sound like anxiety and then some people will think you're imagining the rest due to anxiety.

Panic attacks use up energy and stop you sleeping which causes further fatigue, so if you've not got much energy in the first place you'd probably be best off getting medicated to the extent that the panic attacks largely stop. There's a few anxiolytics, antidepressants aren't the only thing that can be prescribed for it, so I suggest a GP visit to get that sorted out. Maybe you need a cocktail of things for effectiveness. If GP won't prescribe then they need to refer to psychiatrist.

If you keep getting glandular fever annually your immune system isn't just on the floor, it's in the underground carpark below the basement. Could account for the white blood cells being raised. My friend had glandular fever, had a year off school as a teen due to it and took two years to fully recover. You sound like you've been working through it! I don't think that's done you any good.

If you've still got quinsy your body is busy fighting that too.

Don't let your bladder stop you living life. Accept you're temporarily potentially incontinent at times and wear appropriate protection. Take a spare pair of trousers and underwear as backup too when you're out.

Hi OP.
I felt I couldn't just pass by without saying anything but currently don't feel I can go into it further.

I had a lot of these symptoms and I just wanted to say that it might be worth trying to get an MRI.

Hope you find some relief soon.

Also any suggestions for coping mentally with the uncertainty of an undiagnosed condition would be amazing.
Mindfulness as a lifestyle practice. Not just meditation (although you can do that too). The gist of it is: time is something humans have constructed, it doesn't exist in the way we think of it. The world spins, seasons change, day turns to night and back to day again, ad infinitum. The past doesn't exist, it's been and gone. The future doesn't exist either, it hasn't happened yet, all it is is hopes/dreams/plans/fears in our minds. You need to live I the present because "now" exists. Every moment that you live and breathe is "now", "now" keeps passing and you move onto the next "now". So deal only with "now". You're alive in the present so are you going to spent this fleeting present moment worrying about dying in the future or are you going to use/enjoy this moment? If you're brushing your teeth, at a hospital appointment, staring at clouds, reading a book, chatting with a friend, anything at all whether good or bad...each moment is "now" so forget what has been past, ignore and let go of what your brain is conjuring up about the future and live in the "now". Your mind will keep wandering, you just bring it back to where you're currently at. Every time. Without berating yourself for getting distracted. Like anything, it gets easier with practice.

There's a quote: The past is history, the future is a mystery, today is a gift, that's why it's called the present.

Remember the serenity prayer too:
Have courage to change what can be changed, the patience to accept what cannot be changed, and the wisdom to know the difference.
Essentially it means pick your battles, don't rage against the world/society/your enemies because it'll make no difference and will deplete your energy, but don't succome to lethargy or a woe-is-me attitude and keep on keeping on. But in a healthy way, not in a push-yourself-until-you-drop way.

So when you don't know who people are, there's a solution to that - ask! You sometimes have a bad memory, deal with the practicalities of that instead of worrying about why. You're not a doctor, you don't know why, so set that aside because to dwell on it isn't helpful, it serves no purpose, it solves nothing and it isn't enjoyable - so why do it, then. Just find out who the people are and go from there.

came off the injection and had a really good 4 weeks in october where I had no symptoms whatsoever and no anxiety about my health until one day they all came back at once

What were you doing during these 4 weeks and how does that differ from the rest of the time? Maybe those answers might provide another piece of the jigsaw puzzle.

In terms of contraception and periods, if you don't want to do the injection you can do the pill and run the packs together without a break (so you'll have no period). IDK if that's better for your body re: using up calcium. At least if it worsens things you don't have to wait for it to wear off like with the injection, you just stop taking the pills.

Pretty sure they will have tested it by now, but have you had your B12 tested?
My B12 deficiency went undiagnosed for far too long and made me really poorly. I’d collapsed and ended up in A&E and they did bloods and I was treated for iron deficiency anaemia, but not B12!!
it just resonated with me re the OAB.

@WorriedMillie what is OAB please? (I'm interested in gathering info from this thread due to not being in fabulous health myself).

Some of your symptoms sound familiar to me. Brain fog, anxiety, bladder, stiffness. Do you ever get numbness, tingling or pins and needles OP? Do the symptoms come and go? Any vertigo? The low vitamin D, which is something I also have, even with taking supplements I can’t reach an optimal level. My symptoms were found to be Multiple Sclerosis, but could be are so many other less serious things. An MRI of your head and spine would rule MS in or out, Good luck OP, hopefully you will get an answer soon and treatment to help you.

Have you been investigated for POTS (postural orthostatic tachycardia syndrome)? It can cause all kinds of symptoms.

@recyclingisaPITA Thanks so much for your thorough reply, I really appreciate it!

I wish they had told me that about the amitriptyline before I started taking it as I don't remember that standing out in the pamphlet.

I'll definitely do my own research about the vitamin D as well! It's a shame because even taking supplements seems to give me headaches at the minute but I'll give it another good go after some research :)

Everything you've said about anxiety and pacing is so so helpful thank you. I'll definitely be applying what you've said going forward. The only thing I am apprehensive about is the medication side of things as I seem to be reacting badly to everything at the minute. I have taken sertraline in the past so maybe as a last resort I can take that as I know I manage on it.

My new therapist has mentioned mindfulness and has given me exercises to do. I have been doing what I can since May but I will make sure I'm consistent with it going forward. It's very hard for me not to worry at the minute as everything seems to be peaking but I know it's not productive.

As for the time that I spent feeling better: I'm not sure what the difference was with this to be completely honest. I was going out more and making plans because my symptoms weren't really there but besides coming off the injection there were no major changes. I do think when the episodes started again they came back with a vengance - not sure if that is noteworthy. The episodes became far more intense and far more painful.

In your response to another comment I think OAB is overactive bladder.

I'm having more bloodwork tomorrow and a full body MRI so I will update you if I have any luck with answers from these. Thanks again so much for your thoughtful response! :)

@Marshmellowbunny Thank you so much! I'm having one tomorrow and will update when I have some more answers.

@WorriedMillie I am having a few more blood tests tomorrow - including B12! I will update if that comes back and is significant, thanks so much for your comment :)

@Roselilly36 MS has been mentioned in passing by my Dr in regards to the MRI. I would say they used to come and go but now they are constant. I had a month where they were better but it came back with a vengeance unfortunately. I was quite scared when he mentioned it but there's a few symptoms that it doesn't line up with so hopefully it is something a bit more manageable. I haven't actually had any numbness or pins and needles at all in the past year of symptoms. I have had a tingling in my tounge when coming off the injection but my Dr guessed that would be my hormones more than anything. Sorry to hear about your MS diagnosis. How are you finding coping with it? Thanks for your reply x

Wow, this sounds so similar to me. I will try and write a more in-depth response in the future, but this sounds like panic disorder with depersonalisation as an anxiety symptom.
Definitely stay off the weed. It exacerbates it.
You might be better on a different medication. Pregabalin is really helpful for my depersonalisation and panic symptoms. It doesn’t help everyone, but it seemed to hit the spot for me (alongside Cipralex).
I know you’ve got more going on than just the anxiety, but if you can get on the right meds and improve the anxiety, your life will be so much better.

Hope you get well soon

@LeaveALittleNote Thanks so much for your response! I'll definitely have a little look into those meds you mentioned :) I will definitely be staying sober for the foreseeable, I couldn't even fathom anything else right now. I hope you're doing well with your diagnosis, sounds like you're really managing it.

@Horses7 Thank you so much!

As for the time that I spent feeling better: I'm not sure what the difference was with this to be completely honest. I was going out more and making plans because my symptoms weren't really there but besides coming off the injection there were no major changes. I do think when the episodes started again they came back with a vengance - not sure if that is noteworthy. The episodes became far more intense and far more painful.

Ok. You should have a read about ME/CFS. It wouldn't account for all of your symptoms, but it's possible you've got this alongside other things. Someone mentioned post Viral Fatigue. The only difference that I've ever seen between that and ME/CFS is duration and cause. PVF has an obvious cause, ME/CFS doesn't have one particular obvious cause but can be caused by a virus too, and you've had glandular fever. PVF duration is I think either six weeks or six months maximum, can't remember. ME/CFS lasts as long as it lasts (which can be forever), but essentially (as far as I'm aware), they're the same condition. The reason I say to look into it is because what you've described above looks like the typical delayed-onset fatigue that exists as part of the condition, but sort of extended (which makes sense in it being at the start of the problem and you being someone who possibly is in the habit of ignoring minor symptoms).

So if I had to guess, this is how it looks to me:

Glandular fever, never recovered properly, continued working, pushed on through any symptoms.
More glandular fever. Ditto.
And again x3.
Experience a bout of PVF. As soon as is possible, ignore that too.
Get back to normal life too soon, leading to incomplete recovery from PVF on top of possible incomplete recovery from GF.
Body says no, no more, packs up working properly and now you've got ME/CFS and some other stuff too.
Then you freak out at it all and develop an anxiety problem on top of everything else.

In healthy people, exertion is undertaken and the effects felt mostly upon stopping. Although muscle soreness can peak on day two following exertion, it doesn't stop you living life. Think, you did a little too hard a workout in the gym - you might regret it but it doesn't disable you and a couple days more you're fine. With ME/CFS, the fatigue itself (and pain if that's a feature for you) peaks a day or two after the exertion stops, it's disabling and recovery back to whatever your personal level of "normal" is (which may still mean being disabled) can take weeks.

The essential component of pacing is: do the same amount daily. So if you feel like death, do your usual stuff anyway, however hard it is. If you feel on top of the world, do no more than your usual stuff, don't try to "catch up" on things you've missed. This means accepting you're compromised and not trying to live life at the level you were at before, but finding your new "usual stuff" amount that you can manage, this is your new "normal".

The focus needs to be on self care. So eating healthy, getting enough sleep, relaxing, showering, attending appointments and doing life's essentials like paying bills etc. Not doing things you think you should be doing or things other people want you to do. Looking after yourself has to become the priority, not considered a luxury you take part in after everything else is done and if there's any time left. That old attitude will lead to rejecting Pacing principles "because xyz" and doing that can make the condition worse, in the way I already described.

So on days when you need to attend an appointment, you'll have to reduce/skip some other stuff to keep the amount you do level. (Same if you catch a cold virus, you'll need to ease up, not push through). It's either that or suffer a flare up and go through the recovery process, as an occasional thing it won't kill you and so you might decide as a one-off something is worth it, but you can't keep doing that (else it might cause you significant harm). At the moment though, you're currently in crisis, you need to get things under control and stabilize yourself physically and mentally so you've got a base level to work from.

If you have ME/CFS and want to increase your level of "usual stuff", you'll have to do it by means of Graded Exercise Therapy. GET makes Couch-to-5k look like entering the Olympics, by comparison. Your new definition of "exercise" is: any physical movement/anything mentally stressful. And there's no guarantee GET will work. Or it could work a bit, but then you plateau.

If ME/CFS doesn't seem to fit the bill, check out Adrenal Burnout, which could cause ME/CFS, but I think also has distinct symptoms of its own.

Agree with the depersonalisation, or other symptoms of extreme anxiety, causing the feeling of a temporary loss of reality. You're probably not "going mad" just extremely distressed. The symptoms will vary depending upon your level of distress at the time. If you did manage to successfully medicate the anxiety, you'd be able to see what other symptoms were left, which might help with diagnosis.

As well as being an anxiolytic, pregabalin is also a painkiller.

You mentioned pain so I wonder if you were given amitriptyline for that, it's prescribed off-licence as a painkiller. With pain, bladder and sleep problems I can see why they gave you that. It's an antidepressant, I presume you're aware that ADs can make you worse mentally before you start to get better, and you were unable to ride out this phase.

Someone mentioned POTS, that's something else amitriptyline can make worse.

You said you're on an antipsychotic. If you say which one, people with experience of it might have other information to help you.

sorry if im repeating earlier posts, but i have ME following glandular fever and multiple covid bouts and the most debilitating part of it has been dizziness

I have spent years trying to get to the bottom of my dizziness and fainting, and since seeing a new cardiac specialist it is apparent i still have inflammation around my heart and (its seems) an active viral infection of my heart lining which has impacted my BHR and blood pressure

definitely worth pushing for a cardiac referral, my doctor says he is seeing more and more pericarditis following viral infections since covid and they are getting better at treating it now

@recyclingisaPITA Thanks for another in-depth response. I really appreciate the time you're taking to help me with it.

I'd say anxiety is probably the most crippling part of it at the minute. I had the MRI on Friday and it ended up being 2.5 hours of scans. I was on 3 hours sleep, agitated, hadn't eaten and was on my period so it really took it out of me and I felt a bit traumatised afterwards. Had a few awful days but starting to perk up now that I'm making a really conscious effort to rest and manage my anxiety about everything.

I will 100% ask my doctor about ME/CFS and Adrenal burnout. I think even if ME/CFS isn't the cause I must definitely have something similar to some degree after all the trauma my body has been through in the past year between the burn/glandular fever etc. In the two months where I felt better (April/May) I was pushing myself between trying to run and exercise again, finishing my final year of university, starting a new relationship, working as much as possible to make up for lost funds and so on.

In regards to meditation for the anxiety side of things, I think I will consider sertraline if my MRI shows nothing. I have used it before for a year in the past and found it useful but I found it so draining to start so I haven't wanted to put my body through it at the minute.

I will have to find the name of the antipsychotic. I stopped taking it immediately when it lined up with those episodes but I will get back to you on what it was.

I won't hear back from the results of my MRI for a few days but will update when I can. In the meantime I have found a more affordable therapist so hopefully more regular sessions will help.

@sadmillenial Thanks for your reply! I will definitely chase that up and ask my doctor about this :) Hope you're coping well with it. Are you managing to live your life quite normally i.e. work/ going out/ exercising

Have you ever looked up FND or has it been mentioned to you?
Very real. String physical/MH connection.

Some of your symptoms could be caused by POTS
(Postural orthostatic tachycardia syndrome) and Vasovagal Syncope issues. But I'm not a doctor, and many of your symptoms aren't usually caused by either of the above.

@halfshutknife I haven't but to be honest it doesn't sound like a lot of my symptoms x