Never ending brain fog

[PhilAB]

Brain fog

I am really struggling to cope, been injecting for nearly 6 months now and my brain fog is just 24 7. I have had it for 18 months now and since injections it has just got worse. I honestly do not know how much more I can take.

[Clags]

Hi PhilAB

so sorry to hear you’re having such a challenging time.

I’m not medically trained but do wonder if the brain fog you’re experiencing is due to another additional issue because I understand that as long as you are having enough B12, symptoms should settle.

In replies to previous questions on this forum you’ll see links to guidance on how to inform your GP about protocols and national guidance.

It might be worth you contacting the PA society for support too. Links for that in previous threads.

Please talk to someone who can support you if you feel so despondent.

[fbirder in reply to Clags]

Got to agree. After 6 months of 2 to 7 injections per week, with no improvement, it really does sound like B12 isn't the problem. There are lots of other possible causes.

Could you possibly have had covid-19 at the peak of the epidemic? One of the most common symptoms of 'long covid' is brain fog.

You really need to see a proper doctor who can investigate other possibilities. Tell them you have been injecting B12 daily.

[Nackapan]

I'm 2 years in and also stoll have debilitating symptoms.

I've made alot of improvements but when I asked a close friend what % they thought I was operating at compared to my 'old self' there was no hesitation when they said 2o%

That shocked me .

What is brain fog for you?

What is your frequency of b12

injections?

Have you had other things tested for and eliminated?

It's a horrid condition and has many variants

[PhilAB in reply to Nackapan]

2 months of 2 injections per week, then 10 weeks of daily. I gave gone to EOD for a week as I am trying anything to reduce brain fog.

I started 2 times per week for 2 months and nothing really seemed to happen, some good and some bad days. Then I went to daily for 10 weeks, at first it seemed to have gone so well, i had a week of reduced brain fog, then went bad and next week went even better. Then it went bad and does not really seemed to have improved. My body is healing, nerves and muscles aches have reduced and my feet and left thigh tingles, i assume healing. Muscles aches have definitely redcued and my shoulder which has been injured for years has healed. I get some better hours in morning and laste at night but most of day I have brain fog. I have changed my diet and on lots of supplements. Have reduced that now as I was told i may be overdoing stuff.

I am having an endo thing soon and I pushed for a referral to a neurologist. I think i have been deficient for 7 years.

[PhilAB in reply to Nackapan]

Brain fog is drunkeness feeling like i been drugged, and then problems with memory and concentration. I feel like i am in a nightmare/dream. It is horrendous. When it reduces someday by 50% I feel like a new man dancing around the house.

[Nackapan in reply to PhilAB]

Yes I'm the same when I have some relief. A different person (well I'm more me)

I think the frequency if injections is very individual. I really struggled with every other day injections then after 2 months of them had improvements carried on fir ? 2 monthsvthen they stopped so I reduced to 2 weekly then weekly . For me in hindsight I shouldve stayed at weekly I think. Who knows?? That's the problem.. I had good reassurance from here . Logically I just dudnt get why I'd need si many injections. Alsi the ignorance from medics hard to ignore when you ill.

I had a year of 2 weekly. Now every 5-7th day usually 6th day This had taken 4 months at least to see gradual improvements. Very gradual. Sometimes not noticed until an ill day

We all have our problematic stubborn symptoms that take longer to manage. Some days I feel I csnt cope anymore then I ride the wave and it passes.

Try and stay with it.

Obviously try anything to help with the symptoms. Also I have vitamin ' holidays ' then evaluate what I'm doing.

I think its do hard as no clear pathway of treatment.

Hope you get a good understanding consultant . They often can rule out 'nasties' and treat symptoms.

Hope you find a way to cope . Also that with notes you see a steady improvement. I think I also had years of symptoms as put down to the menopause/age. I knew it was more than that and like you had many years 'in the dark'

Ironically I'm literally in the dark . A recent trip away from home. First in 2 years made it obvious lights teally make me ill. ??? Clocks going back not helpful.

We all care on here and try to find our own path to a better state of health.

So keep posting. We all pick out different things others have tried to help our individual challenge. Very caring . Very knowledgeable. And very importantly 'in the same boat' We all would like to get off.

Time is a great healer. I was told by a neurologist 'no quick fix' how right he was . He has b12 deficiency too but he acknowledged caught early and is baffled by the different frequencies of b12 injections needed. He also said he treats hundreds of people with Parkinson's and not one person the same. So the same with this. Similarities but not the same

Hardest thing I've found is patience. Keeping calm. Also taking one day at a time. Staying positive but accepting its also fine to have low days , difficult days like with any chronic ongoing condition. I wasnt any good at that initially as trying to prove to my Gp and some well meaning friends that I actually am not depressed but ill. Like you si happy when symptoms lift for a bit. It's a bit like the saying 'real men cry ' as its a strength not a weakness. I'm rattling now . Unfortunate typo 🤣I'm pratterling (cant find word . I think you get it)

You are not alone while you have this forum . Take care

[KittyKitten]

Hi PhilAB,

I have also been on injections for 6 months now. I am having the same symptoms of brain fog, drunken/drugged feeling, memory and concentration problems, among other symptoms as well.

I was actually thinking of making my own post since I was surprised that I still had so many symptoms after this long! A lot of symptoms went away or got better in the first few weeks but then my progress seems to have slowed right down.

I don't have any answers for you unfortunately, but I just wanted to let you know you weren't the only one feeling that way. Hopefully we will see improvement with more time.

[Nackapan in reply to KittyKitten]

We are all led to believe once we have our b12 levels restored all will be well.

I'm 2 years in . Am still struggling with symptoms but have made big improvements. Didnt dream I'd have another winter dodging artificial lights for instance.

I did however get on my bike!! Short lived very short distance but did it . Took nearly 2 years to even think about trying. I cant walk to the park though.!

I was told by a neurologist "no quick fix"

Hang in there . Try and stay positive .

You may improve quicker than me . Rollercoaster and very misunderstood condition.

[AGG7]

I highly encourage anyone with brain fog or other unresolvable issues to look into EMFs. This has been a big part of the puzzle for me. We are now inundated with so much radiation from WiFi, cell towers, cordless phones, smart phones and smart anything, Bluetooth, smart meters. There is more and more research coming out about how this affects every system in our bodies.

I encourage people to turn off WiFi at night at the bare minimum. I keep my phone in airplane most of the time and got rid of bluetooth and anything 'smart.' I use an ethernet cable to connect my computer to my modem and have turned off Bluetooth and WiFi on my computer. This has made a tremendous difference in my ability to focus as well as my nervous system, sleep, etc.

A couple of good websites:

emfanalysis.com/health-effe...

mdsafetech.org

And an excellent book:

amazon.com/EMF-Phones-Hidde...

[LittleA]

Sorry you are struggling.

Have you had your folate acid, Iron and vitamin D checked?

I experienced more brain fog when my levels were rock bottom, I still have brain fog but it like I did, with the low levels of folate, Iron and vit D it was really bad and I wasn’t living.

Hope this helps x

[Jengastar]

Hi, yes I’m similar. B12 injections have made things about 80% better but I still have some fatigue and pins and needles and joint paint. My GP refused to look into anything else so a saw a private dr. She suspects there is something else and likely autoimmune such as rheumatoid arthritis. I am having tests for autoimmune next week as I got private dr to do letter for GP. They were still reluctant to help though!

[Nackapan in reply to Jengastar]

Keep us posted

Yrs no help awful. Push push

[Barneyboy48]

When you say brain fog, what do you mean exactly?

How old are you? Where are you located?

I'm 65. I have been on injections for a while now but I am not any "foggier" than before I started.

Sure, I have what are termed as "senior moments" of forgetfulness, but so far nothing serious.

Lately I put a lot down to the drudge of life in lockdown.

[PhilAB in reply to Barneyboy48]

Drunkeness feeling, problems with concentration and thinking. Like inam.in a dream. It seems to fluctuate during the day and day to day.

[Barneyboy48 in reply to PhilAB]

This doesn't sound the same as my problem.

I'd have your blood tested again.

I'm on 6 weekly injections. Most are 12 week, but we all have different metabolisms.

[Nackapan in reply to PhilAB]

Yrs this is familiar but can improve. Hang in there

[cath_beal]

Hi PhilAb,

Just wanted to say perhaps keep experimenting with frequency, because you are the only person who knows what your unique symptoms are and how they feel. If one regime doesn't feel too good then why not change again? That's my philosophy, along with finding as much info as you can of course. I SI once a week, had very severe neurological symptoms to start- now all gone. My brain fog has been underlying for over 10 years when I was vegan and didn't know what was wrong with me.

But essential fatty acids (and other supplements) I would recommend along with aerobic exercise if you can

Good luck

[MoKayD]

You say you are taking a lot of different supplements, one of them might be causing problems. Maybe go off all of them for a couple of days and see how you feel.

[PhilAB in reply to MoKayD]

I have gone off most of them. Just take magnesium, pro biotic, and methyfolate.

[Nackapan in reply to PhilAB]

Perhaus try folic acid for a while. Trial anything to see

[fbirder in reply to Nackapan]

Methylfolate should be just as good as, if not better than, folic acid.

[Nackapan in reply to fbirder]

Oh okay. I thought I'd read some feel odd on that form so worth a try changing it

I realise it is just a effective

[Litatamon]

I read your original post around the same time that I had to make some tough decisions around budgeting and supplements.

A poster suggested to you to take a look at your magnesium supplementation. That a certain type or amount can indeed cause brain fog

I have a bit of brain fog (plus word finding issues/editing frustrations) from b12. But nothing like when I changed to a cheaper magnesium source due to finances. It was like I could no longer take the same amount as I did with my higher end magnesium glycinate.

So why don't you try taking magnesium out for a bit and then supplementing it back in slowly. And maybe consider switching out the type or brand if you feel no change. Just in case it is indeed the trigger.

I hope I have the correct poster. I am far too lazy to research to make sure!😁

All the best.

[PhilAB]

I am on magnesium glucinate an expensive one. Not sure how to add pictures. Funny enough I banged my head last night and started to feel better. I came down at midnight last night as could not sleep and watched some TV and my eyesight was sharp as it has been in years. Today I feel better woth brain fog about 50-60% compared to 100%.

[Litatamon in reply to PhilAB]

I shouldn't have muddied the waters by talking about high and low end magnesium because I don't believe that was the point of the original post.

I would definitely go and find that post from your original thread.

Or bang your head again. 🧐😁

[Nackapan in reply to PhilAB]

Goodness a bang on the head!!

Good vision and being able to watch tv. Worth the bang.

[meitu]

Check for low thyroid.

[Peepsdog]

Hi PhilAB,

Sorry to hear you are having the brain fog issue. The way you describe the drunk feeling reminds me of how I felt before my celiac dx. Is it possible that you might have more gut issues than you realize? Just a thought. I know I have required daily injections for quite some time and by mid morning my neuro symptoms come back quick. It has been a long healing process for me too. Hang in there you are not alone.

[PhilAB in reply to Peepsdog]

Hi Peeps dog I was tested for celiac in June 2020 came back negative. My brain fog started when I had a bad sinus infection that was diagnosed as hayfever. I had it for 2 months and I thought my head was going to explode. Eventually treated with antibiotics and it went away. I do wonder if it it has anything to do with that.

[Peepsdog in reply to PhilAB]

Wow that sounds terrible. Headaches are the worst. I do hope that you are able to figure it out soon. I know for me it has been a journey the last 10 yrs. I know the b12 was a huge piece of the healing too. Glad that you don't have to worry about the celiac it can be a huge challenge.