I’ve not been well for a year… is this just how I am now?

[ConnellsNeckChain]

Up until Spring last year I was running half marathons, walking miles everyday, working on a busy ward where I was on my feet all day.

And then I randomly lost consciousness on the way to work one day and wound up in A&E on oxygen and fluids. I was taken to resuscitation (I have no idea why) and kept in overnight. I was discharged in a daze of pure tiredness and get a taxi home. I have no idea what happened other than it wasn’t a brain tumour (CT scan), chest infection/lung tumour (X-ray) or a heart attack (Ultrasound). I just thought it was one of those things. I’m in my 30s and have never ever lost conscious before but I thought maybe it was due to just a mix of factors that day?

Well here I am a year later. Many losses of consciousness later. Dizzy 24/7, vomiting once every week near enough, heavy head and sweating on the slightest exertion. I can’t walk for more than 5 minutes without feeling like the worlds slipping out from under my feet. I have no idea why. I used to love walking. I have periodic pins and needles in my face with the headache.

Drs thought it was anxiety - I didn’t but agreed to take antidepressants. They’ve made zero difference to my physical symptoms. I’ve even intentionally put on weight at the advice of my dr to see if it improved my symptoms. Nope.

I’ve got new glasses, bloods checked, drank shit loads of water, supplemented vitamin d, b12 and iron. Forced myself to walk more even if it makes me vomit or sometimes pass out.

Dr has only just now referred me to specialists, but said I’ll be waiting months and months to be seen.

Am I being too demanding?! This is just no way to live. I know it’s not anything sinister but my life just changed one day and I have no idea why?! Help!!

Definitely push for an MRI of your brain & cervical spine? Could be something autoimmune. Also dizziness and vertigo can 100% be neurological symptoms - maybe ask to see another neurologist?

I appear to have. got long covid and my symptoms are as follows. I will add I have had everything BUT an MRI and am saving to go and get a head and spine one ASAP which is around £800. Neurologist and GP didn't think mine warranted it either - nor did the A&E registrar - I genuinely thought I was either having a stroke or 100% had MS or something similar and have been twice- no falls or trips or difficulty walking and grip etc and neurological reflexes all fine. Only thing they found was very high blood pressure and high cholesterol, a very slight vitamin D deficiency and slightly raised ferretin and my Vit B12 was quite high too. I've had chest X-rays, bloods twice, ultrasound of thyroid.

Symptoms I have(some of which have improved)

Out of the blue 6 months ago )4 days post 4th vaccine) tremendous lightheaded ness/dizzy - at same time eyes feel unfocused, dry, blurry and sore - at same time bad headaches at back of head lasting hours and a sore stiff neck (at the back)

Weakness in right leg below knee and very heavy- felt like walking through concrete

Pins and needles frequently in both feet especially if sat down in an evening - occasionally in finger tips

Weird sensations on soles of feet- like a nerve is rippling

Buzzing in lower legs like you are stood on a battery

Arms ache, legs ache

None of these are there all the time apart from sore neck - totally intermittent.

Oxygen sats a bit up and down.

From the forums I'm on all these things look really common in long covid - some people seem to have had more breathing and heart issues, others like me more neurological issues.

Seems across the board, make and female, all ages, fit and not so fit.

My lightheaded ness improved once out on beta blockers as did the headaches, I still get bits of it but nothing like before

Pins and needles (touching wood ) seem to be improving very slowly as is the leg buzzing.

I had an eerily similar experience. So many weird symptoms and test results. Then it just stopped and now I’m fine. I genuinely spent months thinking I would die, then it just went away over the period of a few months. I remember waking up one morning and realising how quiet it was because the palpitations I’d had pounding in my head for a year had gone overnight.

I had three months horrendous lightheartedness over the summer. Diagnosed with bilateral vestibular hypofunction by a specialist physio and now manageable due to weeks of vestibular rehabilitation exercises. This coincided with randomly going into fast AF and consequently now still struggling with inappropriate tachycardia. I also have permanent pulsatile tinnitus too now. 24/7.
MRI found an incidental unrelated pituitary cyst.
Tilt table test negative. Bloods ok except slightly low Vit D.
I was fit and well several months ago.
Hospitalised four days after my COVID booster.

The neurologist I saw wanted an MRI scan before he diagnosed me. Luckily my gp managed to get me one fairly quickly. He tentatively said it might be Vestibular Migraine.
Where is your headache @ConnellsNeckChain?

@ConnellsNeckChain Please have a Google of chronic intracranial hypertension and see if it seems to fit. Your symptoms sound rather similar to my dd, even down to the first sign that anything was wrong being that a sudden loss of consciousness landed her in a +e, and that is what she has. It's now well controlled with medication.

POTS?

Sounds like the symptoms I have and I have POTS. Does your pulse raise significantly on standing?

A colleague did those strong man marathon things, got Covid near the start and has had to resign from his office job, can't even work part time.

I hope you get to the bottom of it. Sadly if you were a man I don't think your GP would be stating anxiety! Get your DP to advocate for you whenever possible.

@cptartapp Mine all ramped up on 4 days after my booster too, although I now suspect I had covid 2 weeks before and didn't test - more fool me.

I’ve had some kind of manoeuvre as well which made me vomit and didn’t help! BPV?

They often have to do the manoeuvre more than once- did you see a specialist for this? Most GPs etc cant do it. My DH is now an expert but it sounds so like benign positional vertigo

The fact that you vomited suggests it may be BPV.

I’ve seen that POTS has been tentatively ruled out so I have two wildcard suggestions for tests:

1. an ANA blood test. This won’t have been done as standard and sometimes you need a rheumatologist to order one but beg your GP and they may do it. It is pretty much the gold standard for finding signs of an autoimmune disease when the rest of the bloods look ok.
2. ask for a 9am cortisol test to rule out Addison’s disease. Again, this blood test won’t have been done as standard.

it can’t hurt to ask your doctor to order those tests. At worst they will rule out a few things. At best one of them could save your life.

I used to faint, and had all sorts of vague symptoms. I was then diagnosed with Ehlers Danlos, followed by orthostatic intolerance. The POTS diagnosis comes from a tilt table test but the wait on the NHS is long. My blood pressure is naturally low, and gets very low if my salt intake drops and fluids. I would go back and insist on more treatment.

Hi OP.

I am not in anyway medically trained. I was listening to Dr Chaterjee's podcast when he spoke to Dr Ayan Panja. Dr Panja was discussing various cases with him and yours reminded me of this. May be worth a listen. Ignore the "transform your health in 8 weeks". That's just marketing guff.

drchatterjee.com/how-to-transform-your-health-in-eight-weeks-with-dr-ayan-panja/

I was going to suggest POTs too.

I’m so sorry to hear this @ConnellsNeckChain , I’m in a really similar position to you.

Main symptom is dizziness and exhaustion. Drs don’t want to know and keep palming me off with anxiety etc.

It’s looking likely that I will be diagnosed with POTs (have you done an active stand test) however I don’t think it’s my primary issue. I think I have something else and it’s causing pots symptoms.

Would be happy to keep in touch in case either of us have a breakthrough!

Did you have the covid vaccine? My partner got very sick from it and started passing out not long after.

Oh sorry just read you did. Well that would have been quite an obvious hit to your body that could have caused such dramatic change, and not unheard of.

I’m not too well at all tonight myself, so dismiss this if it’s irrelevant as I’ve only read the first post. Has glandular fever been ruled out? I’ve known a total of 3 people with these symptoms who have been diagnosed with this the last 2-3 months. They suffered for around 2 years before getting treatment

Was going to suggest meniers too, fellow sufferer here

My dad has had some of your symptoms ever since his covid booster and no cause has been found in his case yet either. He is the reason I've refused to have any more and never will.

Only bringing this up since you said yourself you've had a very bad reaction the the covid vaccines. Perhaps take some time to look further into that on some vaccine injured forums to see if they can shed some light on your symptoms and situation?

There are a lot of people who have been injured by it. Before anyone jumps on claiming anti-vax - they're not anti-vaxxers because they have HAD the vaccine.

Second this. Lots of the symptoms are consistent with various forms of vasculitis or other autoimmune disease. I'd ask for a ref to rheum as well as neurology. Was the ct of just your head? And with contrast?

Yes to this

OP I'm sorry you have been through this xxxxxxx