PA or anxiety?

[sanstarr]

Please help. Does anyone else get vertigo/dizzy sensations whilst out and have to hold onto clothes rails in shops or similar?? I can't handle it anymore and have just managed to come home in tears. I'm pernicious anaemic with no intrinsic factor, and had hysterectomy 4 weeks ago. Please advise

[jarlethblue]

yes indeed this was a constant with me and it is horrible. It got worse when i began on injections but now thankfully has mostly passed. I am on every day or every other day injections and it took months for the vertigo and dizziness to leave. Hang in there. x. J

[sanstarr in reply to jarlethblue]

Thank you for replying! It's so difficult to distinguish between pa and anxiety isn't it. My gp has just rang to do blood test on Tuesday and prescribed anti dizzy tabs for now?! I will also get my b12 on Tuesday. I've literally had to beg them to have mine every 10 weeks instead of 12. I just didn't know if these symptoms were a sign I'm too low again x

[jarlethblue in reply to sanstarr]

like a lot of us here I suspect you need injections regularly....you cannot overdose on B12...it water so what you don't used is passed in your urine.....it took months for my dizziness to go and it was so bad i could not leave the house. I started daily or every other day injections in November and literally i have only been able to go out without fear the last two weeks. I still get the odd dizzy spell but nothing like it was. xx

[sanstarr in reply to jarlethblue]

I really hope they listen to me good luck with your progress x

[Nackapan in reply to sanstarr]

I started with a most frightening stagger fall into a virtigo attack. First ever. Then diagnosed with b12 defiency . I took several months to walk in a straight line. I saw a physio who taught me Cawthorne exercises that really helped . I still do them now. I wear a big hat ton do a quick food shop. The bright lights make my legs go weak and can also bring in a migrain. It is still early days after you operation. You may need to do less. Any tiredness will multiply symptoms. My symptoms do come back at times . I call it the stagger walk and it strikes without warning. Fortunately less frequently . I'm still on B12 injections 2 weekly.

Sorry you ended up in tears. It is awful. Hope you improve soon. Take care

[sanstarr in reply to Nackapan]

Thank you. Yes 'stagger walk' is good discriptor! Like you're on a boat. I really wish gps would learn more on this disease x

[Kate1914 in reply to sanstarr]

I so totally agree with you regarding GPs taking time to either learn more about PA or just listen to the patients with it. Some of the nurses at my practice give the impression that us with PA just love having injections.

[sanstarr in reply to Kate1914]

Yes!! Like we really enjoy that whopping bee sting! X

[rr1993]

I do. I feel like i’m sinking too when i’m still.

[sanstarr in reply to rr1993]

That must be frightening x

[ktwing]

It was one of my main symptoms, absolutely horrible. I was wondering, if you recently had a hysterectomy, did you have nitrous oxide as part of the anaesthetic? If so, this will have wiped out your B12 levels. I'm one of those who self-injects to get frequent enough treatment, it might be worth considering if your doctor won't increase your injection frequency. Hang in there anyway, it's really difficult but you're not alone. xxx

[sanstarr in reply to ktwing]

Ooo possibly, I had spinal tap with mild anesthesia, I will mention it to them. Such a battle we have isn't it

[bhishm]

My B12 was 112 and D3 9, had severe vertigo/dizzy, anxiety. Pulse rate always used to reach 100/min . Took initial 5 dosage of mythocobal injection and calcirol 6000IU and felt severe Fatigue, tired and rashes. But slowly the vertigo/dizzy has improved a lot. Every 15day I take 500mcg inj. Its improving slowly and feeling better. You can Keep taking the medication, ll take time to improve.

[sanstarr in reply to bhishm]

Yes my pulse and BP is high but on Meds for it at mo. I didn't realise there was a connection thank you x

[Miss-guineapig]

Yes, it is awful but it does pass and I rarely have it now. I was sure I was sure that I had MS or a brain tumour as it was so bad....think my Dr thought I was a bit of a crazy person. Jus to hang in there Sanstarr, it will get less and less and then just an occasional feeling now and again....it takes time though. X

[sanstarr in reply to Miss-guineapig]

Yes!! I'm so worried that it's a tumour! I think that's why I'm so upset as I don't trust the doctors anymore because of all this. I really hope they improve the regulation on injecting soon! X

[Louise121]

Yes I suffer bad with these symptoms I started b12 injections every 12 weeks which improved my symptoms but I found they weren't lasting I now have injections every 8 weeks I also take folic acid daily at the moment as I started getting dizzy and sweating a lot my folate came back really low

[sanstarr in reply to Louise121]

Thanks for replying, it just helps hearing you're not alone with these symptoms. I didn't know if was anxiety or vertigo etc. It still amazes me how much being low on this vit has such an effect on our bodies Tuesday can't come quick enough for me x

[Louise121 in reply to sanstarr]

You're welcome it's not nice to be going through it alone when I first started with symptoms I thought I was losing my mind I was sent to counselling by a doctor and told it was all in my head I finally had blood tests done with another doctor and my b12 was 67 i could hardly walk. I couldnt eat i was a wreck i was started on cyanbalamin tablets first which helped but it dropped again once i stopped them then i was put on injections for life which have helped loads i still get really tired just before its due but i can cope with that I really hope things get sorted for you xxx

[sanstarr in reply to Louise121]

Blimey that's so low!! My lowest was about 97 when first diagnosed. I just assumed that being on 10 weekly doses I'd be fixed. I always felt wiped out after about 6 weeks but they keep saying your levels are acceptable at 444? I've just bought the spray today but waiting til blood test til I dose up xxx

[Ghound]

Hi, I'm so sorry to hear you've been having such a bad time. I had those symptoms before I was treated, and you're correct, you probably do need more B12. However, in addition, as a former nurse, I just wanted to remind you that you are recovering from very major surgery. Four weeks post op is still a very early stage, probably only half way to anything like your normal self ! Because patients are discharged from hospital so quickly nowadays, it's easy to forget just how big a deal surgery like that is ! It's going to impact on many aspects of your health and wellbeing. Don't push too hard, and go easy on yourself. Wishing you all the very best

[sanstarr in reply to Ghound]

Thank you. You're right I do forget about the op. Mainly because I've felt so good/relieved it's over. This funny turn shook me up I think and has reminded me to slow down. I had these symptoms before but put it down to hormones but, this just shows my b12 is poorly managed as most of us are sadly 😢 x

[sanstarr]

Just had blood results. B12- 428 (of course..) but magnesium is - 0.94? Any advice please x