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!!

Have you been tested for Lyme disease?

Maybe read up on vestibular migraine. No head paid required. Often starts with drop attacks. Can be very debilitating and last for months or years. But can also be treated successfully. I hope you find and answer.

Worth trying the Epley manoeuvre if you haven’t already. My husband started getting debilitating dizzy spells and the GP suggested this and it fixed him immediately. You can just find the instructions on google, do the movements. If they don’t make you feel dizzy then at least it’s another thing rules out

I’d be wanting to rule out MS.

Have you had a 9am cortisol test? x

www.endocrine.org/patient-engagement/endocrine-library/adrenal-insufficiency

You definitely are not being too demanding, in fact I think you aren't being demanding enough. It sounds completely debilitating.

I know lots are suggesting long COVID but personally I'd want to steer away from something like that as it may prevent you getting more tests and an actual diagnosis. It's becoming the go to when doctors don't know what's wrong as it can't really be treated you'll just be left to your own miserable devices.

@ConnellsNeckChain your symptoms sound awful. I echo those who have suggested autoimmune diseases, the problem is the time it takes to get an appointment with a rheumatologist. Can you afford to pay for a private consultation? I would also suggest an ANCA blood test to check antibodies. What are your inflammatory markers like (ESR and CRP), are your Haemoglobin and IgG readings all within normal parameters? Keep making a fuss, sadly it’s the only way. Once you’ve been referred it becomes much quicker. I also recommend trying to been seen at one of the bigger teaching hospitals, in my experience they are much more effective and have better access to funding for treatments.

You say you've had B12 - tablets or injections?

It sounds very much like a B12 deficiency, which requires injections and cofactors, tablets will not help. You have neurological symptoms which can become permanent after 6 months without the correct treatment.

Vitamin D - are you on 10,000iu of vitamin D3 daily in a soft gel capsule with an olive oil carrier? If not, it's not good! You also need K2 as a cofactor.

I used to help on the admin team of a huge UK B12 charity - you'd be shocked at how little the medical professionals know or understand and how B12 (or many vitamins in fact) work, and how few treat correctly.

Have you ever been bitten by a tick?

Lyme Disease has a myriad of symptoms.

My suggestion would be epilepsy so I'd want that ruled out

Another vote to exclude Addisons - need a 9am cortisol to start. It’s not a routine blood test but many of your symptoms might fit

www.nhs.uk/conditions/addisons-disease/symptoms/

I honestly can’t understand why you DON’T think it’s vaccine related co wondering you had an awful reaction and this kicked in a month later? Look at it logically - what happened to you before this all started? That’s the most obvious recent thing?

I’d suggest looking at Vaccine harm support groups and symptoms and then doing a deep detoxification plan for the vaccine.

@ConnellsNeckChain this sounds very like vestibular migraines. I was diagnosed with this a few years back and it can be managed with diet and medication. Look at the Dizzy Cook website and FB vestibular migraine groups. There's a great unit at UCLH that specialises in it if you can get a referral.

You said you had a bad reaction to the vaccine, and the health problems came shortly after. Unfortunately, vaccine related injuries are not as uncommon as most people would like to think. Its definitely something to think about and look into. I wish you all the best

OP, this sounds terrible and I wish you well! I would have also thought long covid but no you're not being too demanding - your life changed pretty much in a 24hr period. I hope you recover soon.

Not read all PPs but could be PPPD Persistent Postural Perceptual Dizziness - a form of vertigo. Groups on FB. Condition was only recognised in 2015. Is thought to be linked to anxiety and a lot else. BPPV (also vertigo) is an ear condition and can be cure by movements especially by use of the ''epley chair'' of which there are only 2 in UK, one of which is at ENT, UCH, London - other in Coventry.

You can get long Covid from the vaccines unfortunately! Far more likely to get it from Covid itself, but the vaccines do have a small chance of triggering it for some people.

There’s lots of cures currently being trialled so don’t lose hope if it is that!

I'm having similar but slightly different symptoms that started October 2021 and reading this has made me wonder when I had my booster. I had stroke symptoms with my first vaccine. Things so far that have helped was soft capsules of vitamin D. My bloods was in range but rheumatologist said it was too low. That improved the fatigue drastically and within weeks. Life changing really.

I do think it is somehow connected to COVID. I had a terrible reaction to the vaccines - had my booster in March and this happened in April (not saying it was the vaccine by the way! I think I had covid when I got the last 2 unfortunately)

Ive had 2 vaccine injuries. The one l had last autumn has been very severe. I’m still very unwell now. No one realised what triggered the first reaction until after the second ones.

Im in several vaccine injury groups. Your symptoms sound identical to many I’ve read about in the groups.

Please tell me your exact b12 level and your folic acid level - and your vit d -

The symptoms you describe could well be b12 deficiency

Thanks, but it’s not b12 deficiency. I have infusions frequently and they have not alleviated my symptoms.

It’s interesting that people are sharing their experiences of having the vaccine.

Does anyone have any links to support groups?? How do I get back to normal??

Let me find them.

Twitter
@Covid Castaways

Reddit
Vaccinelonghaulers
Vaccineinjury2

Facebook
UK CV Family
Covid Vaccine Long Haul autoimmune Support
Real, not rare.

There’s others. There’s quite a lot of anti vax sentiment on them that l don’t subscribe to. And lots of moaning. UK CV is U.K. based. However l find the Reddit ones are the ones l look at a lot.

There’s more on Twitter, but l can’t remember them all. I tend to avoid it, because suddenly you find yourself following rampant anti vaxers.

There was Reddit one that had 10000 members but they suspended it, because it was ‘not in the public knterest’

Im very very pro vax, but the media definitely don’t want to talk about vaccine injuries and close a lot of discussions down.