Being normal after symptoms

[Jacqadactle]

Hey everyone! I was diagnosed with a B12 deficiency back in July. I had a lot of neurological symptoms (severe panic attacks, anxiety, depression, sudden onset of phobias, paranoia, etc.) along with the physical ones (tingles, trouble breathing, vision blur, shaking, etc.). My doctor tested my blood but gave me a shot before the results even came back as my mother has pernicious anemia. By that night I could finally breathe again and the panic attacks subsided enough for me to function. My doctor would only give me shots every other week, so I think that my recovery took longer than it really had to. At first the shots only lasted a day or so, then a little longer, and finally my doctor added a methyl-b12 supplement for me to take between shots every day. Well, the good news is I'm finally feeling SO much better! Now I can get a shot every two weeks and it will last until my next one without the neurological symptoms return. I'm panic-free, happy, i can concentrate for the first time in forever and I have energy. My last blood work came back with my b12 level at about 800. My doc is doubling the amount of b12 I'm taking orally to see if she can get my numbers up to 1500-2000, since I'm still getting a little anxious every so often.

But every so often, I've been getting a weird symptom lately. I haven't been drinking since the deficiency symptoms got bad I've been afraid to do anything unhealthy. But, since I've been feeling so much better, I've been having about 4oz of wine every so often on the weekends. The other day, I had maybe 8oz (one glass) of wine during the Super Bowl. By that evening, I felt like my nervous system was on overdrive. Whenever I heard a noise in the house, I felt like someone was punching me in the chest (I'm not sure if that's the best way to describe it but I can't think of anything else). My head and chest couldn't take it. It was very odd, definitely something to do with my nervous system. I drank so little that I wasn't expecting it. It was kind of like everything around me was 10x's louder than it should be. I went to bed, and the feeling was gone by the time I woke up. This happened once a few weeks ago, but to a much lesser extent.

Does anyone else experience something like that? Was it from the wine?

[Maxfactor1]

Hi, wow glad things are looking up for you since getting your shots.

Regarding the loud noise, I don't think it's anything to do with the wine as I have the same thing and don't drink alcohol.

I wake in the night thinking I've heard something but no one else in the house has? I have even got up to look around as the noise was so loud I was convinced someone or something had made the noise? But each time it's all been in my head!

It leaves me 'on edge' for a while afterwards and It takes me ages to get back to sleep!

[Gambit62 Administrator]

I find that alcohol really seems to interfere with my B12 so will up my B12 intake if I am going to have some alcohol - though tend to avoid alcohol - not that I was ever a big drinker.

Some say it is the effect of alcohol on other B vitamins that are needed to metabolise B12 but not so convinced as don't find myself needing to supplement those, just the B12. Don't get the noise thing but think it is the fatigue, balance and co-ordination ... things that on the face of it could just be the alcohol - but stick around after the alcohol has worn off.

[Secondchance]

So glad you have improved! I find alcohol in small quantities brings back symptoms that night eg tingling burning feet. I thought I was imagining it at first but happens every time I have a glass of wine. Very annoying. I had given up wine for a few months when I first became unwell last summer but never drank more than 1/2 bottle at weekend.

[MariLiz]

Hi Jacqadactle,

I get the loud noise thing, as described by Maxfactor1, especially after having some wine during the evening. I've got up and searched the house, and got my husband up to search the house! He wasn't amused! Sometimes it's like a door slamming shut, really loud. Sometimes I'm convinced someone is walking around downstairs, opening and closing doors. Usually it's just a sudden loud noise that wakes me up, and it takes a while to go back to sleep. It must be "in my head", but I'm now reluctant to have wine in the evening, as it usually means a disturbed night. MariLiz

[Jacqadactle in reply to MariLiz]

Thank you for all of the replies! I get that, too. The sudden loud noise that wakes me up but didn't really happen. I also get sleep paralysis, though, and assumed it was part of that. I often wake up when my brain hasn't quite finished with whatever I was dreaming (kind of like night terrors, but it hasn't been scary since I was a teen and learned what this was). I always attributed it to stress, I wonder if it's been a b12 symptom the whole time?

[linda75]

Hi. I’m glad to hear that you are feeling better.

I find that I feel much the same if I'm drinking or not drinking, although my symptoms are worse when I’ve had a late night. I tried cutting back on alcohol but still felt awful! I stopped all B12 and other vitamin supplements on 03/01/2015 after a consultant informed me that my B12 has self corrected and my symptoms are due to anxiety rather/ mental health problems than B12. My last injection from the GP was end of August 2014 as they stopped my prescription. I’m due to see a private consultant at the end of the month and may require blood tests so I don’t want anything extra in my system.

Since stopping the B12 my symptoms have come back, especially feeling dizzy and tired. I often hear loud noises, especially when I’m reading at night in bed. At other times I hear talking or music, e.g. someone playing a piano in the distance. I know that the sounds aren’t real, (especially as I’m deaf in my right ear but still hear stuff in it). But the loud bangs can make me jump. Maybe alcohol makes your symptoms worse, but I expect it’s more to do with the B12. I think that low B12 just causes a wide range of symptoms. Since stopping all my supplements I permanently feel like I’m sitting or standing on a slope and I’m about to fall over.

[Gambit62 Administrator in reply to linda75]

Really concerned that you have been told that your B12 has self-corrected and you don't need supplementation any more ... and really sorry that you have been told its all down to depression. What type of a consultant did you see?

If you develop a B12 deficiency that can't be directly linked to a lack of B12 in your diet then it indicates that you have a problem absorbing B12 that is unlikely to go away so your deficiency is going to come back if you aren't treated regularly with doses that are right for you.

The balance problem you mention is particularly worrying as that is indicative that you are developing neurological symptoms and you really need to be getting B12 properly.

The general test done for B12 - serum B12 is known to be a poor indicator of deficiency - more than enough evidence from studies on that one - symptoms are much more important and your 'depression' is at least as likely to be a symptom as anything else. Besides which the amount of B12 you are given in a shot is enormous compared to normal RDA and levels once supplementation have stopped are going to be even worse as a guide to whether you are deficient than they were before you were diagnosed. They only really mean something if they get low and you would have to have gone at least 6 months without a shot for test to be anything approaching meaningful.

Please, go back to your doctor and tell them that the neuro symptoms have come back,

[linda75 in reply to Gambit62]

Hi Gambit

Thank you for your response and sorry for my delayed reply. I've been so tired from work and then picked up a nasty tummy bug. I'm off to see a doctor recommended by Martyn Hooper next week as my GPs are pretty useless. Then I'm planning to start self injecting again as soon as I get home. The consultant I saw was a gastroenterologist. He initially said my stomach pains were due to constipation and a blockage in my stomach, and my B12 was low due to poor diet. When he realised that I eat a lot of foods which contain B12 he decided that everything is in my mind (i.e. I’m depressed) including the constipation. I don’t know what happened to the blockage in my stomach... He also said that I’ve latched onto the B12 as the reason for my symptoms. The really annoying thing is that that he’s written to my GP saying I have depression which is not true and not something I want recorded about me as I am not unhappy, anxious or depressed. Depression is not a symptom I have ever gone to see him or any other doctor about. It worries me that they can add that to your notes just because they don’t have any knowledge about B12.

I just hope that the doctor recommended can shed some light on my symptoms.

[Gambit62 Administrator in reply to linda75]

unfortunately it isn't uncommon for people to be fobbed off with 'depression' and given anti-depressants - even though depression is actually a classic symptom of B12 deficiency. One thing that really gets me cross is that the standard questionnaire that is used to determine if someone is depressed could equally well be used to determine if they have a B12 deficiency but aren't actually depressed - totally hopeless.

Actually depression is just a label for a cluster of symptoms that can have anyone of a number of causes but these days it gets treated as a diagnosis - just very sloppy medical practice at the end of the day

[pvanderaa in reply to linda75]

Your consultant sounds like they might have their head where the sun doesn't shine.

B12 deficiency doesn't 'self correct'. You need b12 for life and if you don't have sufficient levels the downward spiral into neurological damage hell continues.

[aishling]

Hi Jaquadactle,

I suffered with sleep paralysis for years. It was terrifying. I wouldn't know whether I was dreaming that someone had smashed in a window or broken in a door, but I would not be able to wake up to find out either way. When I finally did wake up, I would think that whatever I had dreamt had been real and would have to check the house (in a state of fear with my dog by my side and a heavy object in hand!) before I would accept it had not been real.

My sleep paralysis was so complete, sometimes, that someone might try to wake me and I could neither move nor open my eyes. I feel quite frightened again when I think back to how bad it was.

I never put the two together, but It eased off almost completely when I got my B12 in check. Now, it happens from time to time, but I bet if I traced back the few times it has happened recently, it would probably be when I was overdue for a shot.

On the subject of alcohol: I cannot drink at all any more. I gave up about a year ago, because even the smallest amount made me feel terrible for quite a while after. It is, possibly, attributable to PA, considering how many people report the same issue.

I hope everything works out for you. It's been years for me since I've been receiving treatment and though, on the whole, I would say that my condition has vastly improved, it is something that you will always have to keep a check on, unfortunately. You often feel much better ... until you don't. So the best advice I can give is to never let your treatment slip, and to supplement yourself when you feel the need.

[Jacqadactle in reply to aishling]

Wow I never thought it could be a B12 symptom, but now I wonder. Stress triggered it and stress also lowers my b12, but I never put that together. I started to have one as a night terror the other day. I hear the front door open (my fiancé had just left for work) and thought he forgot something. Then I saw a strange man walking through my house. I was convinced it was real and I couldn't move because I was having a sleep paralysis episode, and I remember thinking that it was horrible timing as I needed to be able to move right now. then I realized it was part of the sleep paralysis, relaxed and woke up. I find if I recognize it for what it is, relax my body and mind and just almost fall into it, I can wake up in a few seconds. I think practicing progressive meditation really helped with that one. After I woke up completely I noticed my cats hadn't moved and would have if there was anyone actually in the house lol. Maybe it'll go away as my levels get up :/

[aishling in reply to Jacqadactle]

That's a good tip - relaxing and recognizing that it is a dream The progressive meditation sounds interesting. Must look into it. Yoga has been the best thing for me. When things like my balance are a bit off, or if I have tremors/shaking, then the effort of having to balance and concentrate my body weight really seems to help.

And what you were saying about your cats - I find the same thing with my dog. I think - well if there was really someone there, then he'd surely be growling.

I genuinely never thought - until today - that it had anything to do with PA/B12 deficiency. But like I said above it did ease off with shots/supplements (I just never saw the correlation at the time.) So I hope it's the same for you

[Jacqadactle in reply to aishling]

Check out the podcast Meditation Oasis by Mary and Richard Maddux. That is the best one I've found so far for myself, and it guides you through the meditation with relaxing. If you know any others please share

[aishling in reply to Jacqadactle]

Thank you, will do

[pvanderaa]

Drinking any alcohol for me results in what can only be described as a 4 day hang over. The isolation symptom results and getting some methyl-sublinguals seemed to help.

Are you also gluten intolerant? Some wine made in the more traditional methods is clarified with a wheat paste that leaves gluten in the wine.

[Jacqadactle in reply to pvanderaa]

I have celiac, but I mostly drink cheap white wines. I always found that the oak aged gave me headaches, even before I had b12 issues.

I think I'm going to try taking the sublingual in a higher dose a few hours before I drink. I hope it works! I don't have to get drunk or anything, but even just a glass of wine with dinner has always been a weekend luxury for me :/

[pvanderaa in reply to Jacqadactle]

Alcohol does not directly impact or react with B12. However, it reacts with all the other B complex vitamins and eliminates them from the blood stream. The cells starve for energy. This is the hang over feeling.

Taking more b12 won't help but taking a multivitamin or other B-complex vitamin would probably work better.

I gave up all alcohol altogether. We actually had a fairly large collection of wines. Now my wife enjoys them and I don't miss them at all.

[Trinionfir]

Ive always loved wine tasting. I live in Australia's premier wine region and work for one of the largest wine distributors in the country. I receive wine as a part of my salary pakage. I'm in denial that I cant drink. 😔

[kizzy239]

I have just recently joined this site and I'm finding it so interesting! I've recently been having night terrors on a regular basis but just put this down to an unsettled period in my life. I have been a bit stressed with work and everyday home life. I've also not been sleeping. I put all of my symptoms down to stress, not even thinking that my PA had anything to do with it. I'm now thinking I should get back to my doctor! I'm constantly tired .... all the time! I think I to try the meditation.