Restless nights.

[wongy215]

Have taken 400mcg of folate the past 2 mornings and had 2 very restless nights ,waking up all night feeling anxious and heart feels like it's racing .Is this a coincidence, can anyone tell me. 😥

[clivealive Forum Support]

Hi wongy215 it is usually advisable to have a good Folate level whilst having B12 injections but I'm not a medically qualified person so it would probably be a good idea to get it checked.

Personally I have been taking 1 – Folic Acid 400μg for as long as I can remember in addition to what is added into things like breakfast cereals etc and what I get from vegetables, yet my last serum Folate level was 18.2ng/ml (3.10 – 20.50ng/ml).

Hopefully someone on here will be able to give you better advice.

[wedgewood in reply to clivealive]

You say get it checked medically ----. The doctors know less than you do about P.A. !

Most of us have suffered from their ignorance !

[clivealive Forum Support in reply to wedgewood]

True wedgewood I've had 45 years of experience whereas they probably had a 45 minutes seminar on B12 Deficiency and P.A. during their 7 years of training.

[wongy215 in reply to clivealive]

I have little faith in my gp ,you people on here are far more knowledgeable.

[clivealive Forum Support in reply to wongy215]

However wongy215 I don't think we should "give up" on them because if we can persuade our own GP to treat us according to our symptoms instead of reading about us on their computer screen we will "help" the next patient that comes along with the same problems.

It's taken me six years to get the "one size fits all" GPs at my surgery to increase the frequency of my injections because of the return of neuropathy in the run up to the next one.

List all your symptoms, present them to your GP (preferably with someone else who has witnessed them as he/she is less likely to "brush you off" in front of a witness) and try not to get too emotional as they will then just put it all down to depression.

My GP actually laughed at me when I tried to explain "how I felt" and said "It can't be anything to do with the P>A. (which by then I'd had for 38 years or so) because you are having the B12 injections and it's probably just a coincidence - or something else".

I have to admit I did get emotional on that occasion - I was absolutely livid, but I learned from others on PASoc which I joined six years ago, that calm and reasoned argument was better.

I wish you well for the future

[pvanderaa]

Are you already on B12 ? How low were your levels ?

I find that as nerves in my physical brain heal, my mind comes back to life and starts trying to sort out all pending unresolved issues (mental). I take this as a sign that the vitamins and supplements are doing their job.

I switched my B12 self injection from the evening to the morning to be able to sleep better.

But I still find that if I sleep on the injection site, I'll get vivid dreams and restless sleep if there is something I'm worried about.

I think a lot of this is relative to how much damage occurred and how much healing has taken place.

Originally I started taking my injections and supplements before bed to be able to sleep off the headache symptom. And burn off some of the aggression that was one of my symptoms during the day immediately following my injection.

As I healed (several years) the aggression settled down and the dreams and restlessness became more of an issue so I switch to morning injections.

I currently take folic acid 2x 800 mcg three times a day.

[wongy215 in reply to pvanderaa]

I am on alternate days self injecting ,gp only willing to give me 5 doses but had loads of symptoms, lowest reading was 85pmol/l.I always inject in the morning , maybe it is just everything waking up.😃

[pvanderaa in reply to wongy215]

Start a logbook of symptoms. The log provides a memory of issues if you are also having short term memory loss.

Try to make a daily assessment of each of your symptoms, your own scale is fine. Record this in your log book. The recovery is so slow that you will need this to monitor "progress", but also to ensure that any changes in diet or meds don't cause backsliding.

Sometimes it feels like two steps forward and one step back.

Treat the jab as day zero each time and count from there. There will be new symptoms that repeat with each jab.

Pain is a counter intuitive symptom that is actually a good indication that nerves are working better and the signal to the brain is stronger.

Do gentle range of motion ( yoga) type exercises to stimulate nerve repair. The repair occurs when electrical impulses travel along the nerve to make the muscles move.

For short term memory issues, play games like mahjong. I used the time to lose or to win as my metric, the better my brain was working, the faster I could play.

[supersezzie]

Did you resolve this? No one has asked the type of folate you took so thought I'd add in that I've discovered I'm fine on folic acid but had a very extreme anxiety reaction to just 200mcg of methyl folate.