No more cinema for me

[expatkerry]

My husband warned me but I really wanted to see the latest Tarantino film... We went anyway and I only got 3 hours sleep that night. The noise levels in the final frenetic scenes overexcited my nervous system and even though I was exhausted I couldn't sleep. I also happened to be in the middle of a big gastritis flare up, so sleep was impossible. And yet my neurologist tells me the PA hasn't affected my nervous system, or if it has 'only in a transitory way', specialists may read and even write about disease, but the don't live it.

[wedgewood]

How right you are about the specialists ( and most doctors ) There is no great interest in the medical profession generally in B12 deficiency / Pernicious Anaemia. I have my ideas as to why , but I feel I cannot voice them here . Hope that you manage to overcome your difficulties . It’s all a matter of trial and error, and we have to find our own salvation . But one is really looking into a dark hole .Best wishes .

[expatkerry in reply to wedgewood]

Thanks for the support, episodes like this leave me depressed and it's difficult to climb out of it. I have to because my family depend on me and I'm acutely aware of how much my limitations impinge on their lives too.

[wedgewood in reply to expatkerry]

But never give up . I have found my ideal treatment ( I think! ) I self-inject once a week , and supplement with a multi-vitamin and mineral tablet . I have got rid of my numb feet , which was an awful symptom . I suppose I’m left with minor symptoms -bad memory , bit of confusion .but all manageable . The worst aspect of it was not being believed by doctors .

[Nackapan]

I so sympathise. Doesn't affect your Nervous system!! Ha

I love Strictly Come Dancing . Made myself worse Trying to watch some of thst last year in black and white. Has put a time frame on feeling so ill. Last tied to watch tv in February . Awful head on and unsettled night.

Specialists need to listen then fund a reason. Not simply dismiss you or put you on drugs in a trail and error way. T C

[expatkerry in reply to Nackapan]

I couldn't agree more

[EllieMayNot]

Sorry that what should be an enjoyable experience turns into such a health problem! I completely understand as sometimes we just want to live like a "normal" person. The guilt is horrible when we feel like we have let down our loved ones but we didn't choose this awful condition. I have come to have little regard for specialists for all of the reasons already mentioned. Sadly, most are essentially ignorant of the matter.

[pvanderaa]

Your vagus nerve it would seem to me is working just fine. Generating signals to the stomach to produce acid to get you ready for that “fight or flight” state in response to mental stimulus.

I’m curious if you also got hungry.

The restless sleep is the brain trying to resolve off all the stimulation. I’ve been taking Methyl B12 sublinguals at bedtime for the past couple of years to help the brain function and resolve the stress of the day faster. It’s counterintuitive because you would think B12 would give me energy and disrupt my sleep but I sleep like a baby getting up once to pee.

[expatkerry]

Sorry, are you asking me if I get hungry in general? If so the answer is yes. Was I hungry that night? No, but then I had eaten and I have chronic gastritis.

[MoKayD]

Sometimes I also become over stimulated by evening entertainment. To counteract this, when I get back home, I take a calcium supplement and a K2 supplement and wash them down with some watermelon water. I've found that calcium makes me sleepy. I take the K2 because it is supposed to help your body make use of calcium. I drink the watermelon water for the potassium and because it's tasty. Potassium also helps me sleep. I don't know why these things make me sleepy. I've never read anything about these working but, for me, they do. Another food that makes me sleepy is Manuka honey. I discovered this when I had a sore throat and I swallowed some of this honey to sooth my throat and then went on to have a fabulous night's sleep. I hope this helps you, insomnia is just awful.

[expatkerry in reply to MoKayD]

Unfortunately my case is complicated by extreme food intolerances and malabsorption, supplements are impossible for me. Eating enough to fulfill my daily requirements is a huge problem, at the moment I only weigh 45 kilos and I'm suffering from malnutrition. I have an appt with my doctor on Wednesday to see if I can have D3 injection as I can't tolerate the tablets (even sublingual) and my level is low

[Strongerdaybyday]

I get extreme anxiety after being in a social setting, even after a lovely dinner out with our good friends! Nothing happens that should cause it, I believe it’s an over stimulation thing. It’s so terrible! I’m on daily, low dose, anti-anxiety meds that keep me in a good place most of the time, but these evening episodes proceeding a dinner out it doesn’t help!

[expatkerry]

I know what you mean, I had to give up amateur dramatics because the over stimulation was unbearable, but the life I have now sometimes feels like a half life.

[mountainice]

I get the same! Never read b4 that anyone has this. I thought i was peculiar that i get over-stimulated so easily - by tv, by people. Is this a B12 thing? Like you expatkerry, and amdram - i want to join but am worried that as it ends at 10 this will totally disrupt my sleep. If i miss my 'sleeping point' by even a few minutes i am then awake for the next several hours and usually my whole night's sleep goes haywire. I told the endo i can't plan my life with insomnia, his answer, by letter, is to refer me to the 'Tired all the time' clinic - i never said i was tired all the time, just can't plan. Sorry, mixing up B12 and thyroid issues here. This B12 is a b....er, it is invisible but wreaks havoc. I have a very unsympathetic friend but just that one person really gets in my head and makes me doubt myself even though i feel supported on forums.

[expatkerry in reply to mountainice]

People have difficulty empathising when they have never experienced this. My family know what the B12 deficiency does to me but I still feel alone with my problem, at least here I can share with others who really know how I feel, that's not a small thing.