The proverbial has hit the proverbial.

[Laverdista]

An update...

You're all no doubt aware if my many previous posts about my experience with horrible agitation and anxiety during 'reversing out'. I've been self-injecting for 3 months now. My GP has actually told me to stop my injections for a month, as she believes the i jectuons are responsible for the adrenaline surges and very high blood pressure readings I've had. Personally, especially as I am getting nearer to the 4 month mark when things COULD start easing (although may not), I'm reluctant to do this, as even one injection a week would be better than none.

However, after an ambulance trip to A&E on Saturday due to scary blood pressure readings (I'm already on 3 medications for it, and the blood pressure had been controlled until I started injections), I'm not sure what to do now.

My excruciating agitation during reversing out has led to truly horrible days of depression, which turned increasingly suicidal in the last 2 days.

Having been seen by the Mental Health Crisis Team for the last few weeks, I've been told that if I have an 'emergency' again, my wife has to ring 999, and I'll be sectioned (detained in hospital for my own safety, for non-UK readers). 😔

To avoid that, and with the realisation that I do desperately need help to get through this, I'm going in to a private mental health facility on Tuesday, for at least 2 weeks, possibly 4. I doubt there'll be any possibility of injecting B12, or taking supplements, but I can at least try to let them allow me a B12 and folate sublingual.

I stopped taking mirtazapine after a week as I had heard so many horror stories about withdrawal symptoms. I'm hoping to take an SSRI but can't until I get the results of a 24 hour urine test for neuroendocrine tumours, which I should hopefully have on Monday. So it's been torture trying to stay in one piece mentally.

I honestly had none of these symptoms before being diagnosed with B12 deficiency, and when I started SI three months ago.

It may well be that in a month's time my symptoms might start to ease a bit, but I don't have the luxury of waiting until then without help, as my mental health has declined so much.

Thanks for all your support so far, and thanks again to Wwwdot and Gobbozoid who continue to offer me daily support and have been my rock.

[Technoid]

I hope you can get the care that you need Laverdista ❤️

[Laverdista in reply to Technoid]

Thank you. 👍

[PlatypusProfit8077]

so sorry to hear that you’re still struggling! I hope the facility and its staff are helpful, kind and compassionate and that you’re able to come out the other side feeling better mentally and physically. I’ll be thinking of you!

[Laverdista in reply to PlatypusProfit8077]

Thanks

[pitney]

All the very best of luck with your treatment, all I can say is print off and take with you as much B12 info as you can and try to get someone there to contact PAS or at least look at their doctors info on the PAS website , be as calm as you can and hope that someone is more understanding of the problem. My thoughts are with you

[Wwwdot]

Hi Laverdista

Great advice for Pitney as stopping and starting B12can bring its own challenges.

We are wishing the very best for you and your family and as PP says hopefully you will come out the other side feeling better.

🤗🤗🤗

[Laverdista in reply to Wwwdot]

Thanks, and thanks for all of your help and encouragement so far.

[Ghound]

Hi, I'm so sorry you're having to go through all this, but getting intensive professional support at the facility will hopefully be a turning point .

It's been difficult to remain positive in the face of both physical and emotional ill health, but keep focused on the fact that there is always light ahead, and it sounds like you'll be getting the correct help now.

We'll all be thinking of you and wishing you all the very best xx

[Laverdista in reply to Ghound]

Thank you. Hopefully will get through this and will start posting positive things at some point in the future. 🙏🤞

[Ghound in reply to Laverdista]

You definitely will get through this !!!

I'm talking from experience !

Very best wishes ! 💛 xx

[Laverdista in reply to Ghound]

❤️

[Blueoxo]

Hi Laverdista, I can relate somewhat to what you’re saying. My blood pressure went very high and I felt like I was having palpitations when I started doing my own B12 injections. Initially I was injecting once a month and then eventually increased that to every 3 days. My blood pressure increased and I could hear my heart pounding when I went to bed at night. I got a bit scared by it reduced the frequency to weekly which seems ok. Got to admit I do feel better for it. I’ve never had high blood pressure before, usually the opposite if anything. I figured it must have been caused by the increased frequency of the B12 infections.

[Laverdista in reply to Blueoxo]

Thanks. I stopped injections completely a week ago (functional GP told me to stop all injections and other supplements until they knew what was going on in via detailed blood tests). However, whilst my agitation has definitely calmed down since I stopped (and my blood pressure has gone down) other symptoms seem to have got worse - I feel absolutely rotten.

[Gillsie54]

I wonder if the injections are causing a sodium / potassium imbalance. Injections at the start can affect this. Perhaps get a blood check on both sodium and potassium levels. These can affect blood pressure.

[ClaireWF1346]

Wishing you all the best best with your recovery.

[Laverdista in reply to ClaireWF1346]

Thanks. Just wish I could get rid of this terrible agitation/anxiety. Seems to have been going on for months now. 😔

It's so strange how some people seem to get it but others don't.

[ClaireWF1346 in reply to Laverdista]

I had anxiety to some extent in the months before I saw a GP and beyond, mainly waking up in the night with irrational worries and I would be very easily tearful. Completely out of character. Nothing to the level you have experienced though but everyone is different. Truly hope you get some resolution from your suffering soon.

[Cherylclaire Forum Support]

Sad to hear this, but a good thing that you have made the first move for yourself. Wishing you all the best, especially the best of care.

[Oneash]

pubmed.ncbi.nlm.nih.gov/221... some B6 too, to shift that homocysteine. I take it you are on methyl folate or folonic acid.

my.clevelandclinic.org/heal...

Make sure your oats are organic!

Big hugs.

[expatkerry]

So sorry to hear about your problems. The ray of hope may lie in the private mental health facility, my gastroenterologist took a new approach to her PA patients when one of her patients was admitted into a facility having been found in a non communicative state. The hospital had seen mental health /anxiety issues with PA patients before and immediately gave the patient increased B12 dosage ( despite 'normal' readings) and it worked. My gastroenterologist is totally for self injecting now and monitors my progress with interest I do hope someone finds the right balance for you, good luck.

[PlatypusProfit8077 in reply to expatkerry]

That’s an improvement in treatment! Sad that her patient got to that state first but at least it sounds like the doctor learned from it!

[Laverdista in reply to expatkerry]

Thanks. Unfortunately after 3 months of fighting the extreme agitation and anxiety (despite injections every other day), my body and mind are not strong enough to keep on with such frequent injections. So, on a functional GP's advice to give my body a break for a month, I am not injecting again until my mental health is stronger, unless my symptoms worsen in the mean time. At that point I'll recommence injections, but easing up the frequency slowly.

[Myoldcat]

Hope you are beginning to feel more supported and that the horrible anxiety will be easing soon. Thinking of you and sending wishes for healing and recovery at the pace that works for you x

[Laverdista in reply to Myoldcat]

Thanks. My horrible agitation has actually eased in the 2 weeks since I last had a B12 injection, so now I find myself waiting for the anti-depressant to kick in, whilst suffering from anxiety and depression. The atmosphere here is supportive, and everyone is very friendly.

Unfortunately, I had somewhat of a setback in my progress, as my dad died on Sunday, which I'm slowly trying to process.

[Myoldcat]

So sorry to hear about your dad. That's tough, thankfully you are in a supportive environment. Wishing you continued imprivemnt x

[PlatypusProfit8077]

thinking of you Laverdista.

I’m so sorry to hear about your dad.

[Laverdista in reply to PlatypusProfit8077]

Thank you.

[Regenallotment]

you have really been through it, thanks for keeping us updated. I hope you are continuing to improve despite your loss. My deepest sympathies 🖤

[Laverdista in reply to Regenallotment]

Thank you.