Anyone else get this? I get about 2 episodes a year that last up to 72 hours and cause total debilitation.
I am more concerned about the off balance feeling as i had it for most of 2012 and the NHS was useless. Gave me motion sickness tabs - turned out to be pernicious anaemia and coeliac.
I have been managing my own diseases inc Hashimotos for a year and the off balance feeling eventually went. Gutted that for the first time this year, the off balance feeling is back. Came on about 2 weeks ago.
Since i am doing everything right, I dont know what to do about this.
I am currently off sick but will have to go back while still ill due to threats by my employer (long story, tribunal claim pending). I ordered a walking stick online so I can use it to steady myself, but it's awful going out feeling like this as you feel so unsteady and vulnerable.
I am exposed to chronic stress at work and this is certainly exacerbating my adrenal fatigue, though none of the usual adrenal supplements work for me. It is pointless speaking to nhs gp as they treat me like a hypochondriac. I have changed several times and they are all useless.
So any tips for managing my off balance feeling would be helpful. Could it be that this time it is caused by stress rather than p anaemia?
7 Replies
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What are you taking for the PA and how often? Are you also taking folate and a B complex? What's your folate and ferritin levels like? H x
....I think Hampster1 has good advice. So much information out there about low B12 and its effects. Have you read the book - Why isn't my Brain Working ? - by Datis Kharrazian. On page 241 he talks about removing stress in the workplace - uncanny ! Lots of good information about the effects of gut disorders on the brain and vice versa. There is also a website with information you may find helpful. At least you are gluten free which is such a huge part of the healing story. Did you see/hear the Gluten Summit from America ? - an on-line free presentation. So much to learn.
Last year I too suffered cognitive issues and balance has always been a problem since having a back op which damaged nerves - so I upped the B12 to 2000 mcg and soon felt an improvement. Even spatial awareness was dodgy and knocked the gatepost with the car A first !! Am now heading for the B12 patches as I so want to improve my levels.
Hope you soon feel stronger.........
Hi
My GP will not refer me, she is useless. Other GPs before her also refused. They treat me like a hypochondriac.
I self inject b12 every couple of weeks for my p anaemia. Confident my levels are high enough. I had an iron infusion in April as my iron serum was 6. Not been tested since as NHS gp flatly denies any more infusions even though my specialist says i need them regularly (see my post elsewhere!) To have another privately is 1k
Yes i also take oral b complex and inject Vit C, though running out. As with everything else I have to source all these things, inc NDT, myself.
Am waiting for result of private thyroid blood test (since NHS refuses to test anything but tsh) so will soon know if my thyroid is off but i dont think it is.
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I also have injections every 2 weeks (actually from my GP) but have actually recently started adding my own extra one to bring it to weekly, as I realised my neuro symptoms were returning at the 9 day mark. So you could try injecting more frequently?
Another thing you could also try tweaking is folate. How much do you take? I have 400mcg metafolin in my B-complex, but I was also taking 5mg folic acid on prescription because I was initially deficient. Long story but I stopped taking the folic acid on the advice of a nutritional doc, and got folate deficiency symptoms after about a month. For me this is terrible migraines, sore tongue, and feeling awful before and after my B12 jab (because it doesn't have enough folate to work with). I immediately went back on the 5mg folic acid and it has resolved all of these symptoms, feeling good again. So what I'm saying is that some people have to maintain high dose folic acid supplementation, particularly if you have high frequency injections. If you respond to active folate/metafolin then use that, but many people (possibly including me) need to stay on the bog standard folic acid. I might try the metafolin again, but at a higher dose, at some point in the future.
And I'm assuming you're taking some kind of regular iron supplement - how awful does you GP sound, why does he not heed the Specialist?
Other things to consider that can cause neuro problems similar to B12d are the other trace minerals - particularly copper - but also important are zinc, selenium, magnesium. I had mine tested by Biolab, they do a minerals panel, it cost about £60 I think. But I'm not sure you can order their tests directly. Their website tells you more. I was deficient in zinc, and low range in copper and magnesium, so I'm taking all 3 (taking zinc on it's own depletes copper further, and folate and iron need to be taken away from zinc as they will affect its absorption).
I'm still seeing the nutritional doc even though he's made mistakes with me (!) and I'll continue to share my experiences because I suspect there's a lot more going on behind our illnesses that only we can get to grips with - we must leave the NHS behind because they cannot possibly keep up.
Come and join us on Facebook if you want some PA specific support:
It makes sense. I am lucky enough to have some magnesium amps but injecting it is a pain as it forms lumps under the skin.
I take 200mg ferrous fumerate -was on 400mg for many years and still had iron serum of 6. I have some iron injections but cannot bear to do IM myself.
Also take d and liquid calc zinc mag. I have only been gluten free for a year and i know it takes 2 years min for absorption to improve
So folate and more frequent injections is a good plan. You actually get fortnightly injections from an NHS GP? Surely not!
Agree about the NHS: They are downright dangerous
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Oh yes, B12 on the NHS, imagine that! I realise I got lucky with a sympathetic GP, but it wasn't without a fight. You need a lot of knowledge, and even more conviction that you are right and they are wrong, without actually telling them that they are wrong in case you ruffle some egos! And honestly, I work on the basis that the injections can be taken away at any time, which is one of the reasons I tried doing it myself, so I'm prepared (my nice GP has just left the practice, so more battles to come).
On the iron front I have read others say they have had good results with Feramax, which is a Canadian product, but you can buy it on ebay I think. If you join the Facebook page you can perhaps ask others who have tried it. PA sufferers do struggle to keep their iron levels up. My serum iron's OK but ferritin lowish, so that's something I'm trying to improve.
If you have been taking zinc for a while you may well be depleting your copper, see these articles:
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A first !! Am now heading for the B12 patches as I so want to improve my levels.
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