I'm cocooned. Not stressed. Doing what is second nature helping with a new born.
First time away from home in 2 years.
Its help separate my symptoms a little
The most stubborn bring head fragility .
Pain at the back of my head. Feels like I've just hit my head on a concrete wall. Only way I can describe it . Glasses feel like a metal vice. Tinnitus. Sizzles
Pain behind my ears . This has been daily since the start but I had several other symptoms as well which I'm grateful only happen occasionally now.
Nausea. Balance issues. Sudden weakness. Sudden need to sleep . Stagger walk. Amongst others
Headaches the most improved symptom along with balance. Fatigue continues but not exhaustion if I manage it well
Just wondering g if anyone elses have head /nerve symptoms and severe light sensitivity still. ?? I'm a still awaiting neuro Opthalmologist appoinrment. Had anyone else seen one? I need to rule out Occipital neuralgia amongst others. These dark evenings very difficult even with a visa ans tinted glasses. I look so bizarre when dark. It dorsnt really work so just have to sit in a darkened corner or bed as if I 'hit' a light I get a stagger walk and head nerve pain? Takrs a while to settle or can then leaf to a headache
Very debilitating.
Cant go to bed earlier!! 🙃😎😅
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Nackapan
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Hubby complains of a permanent soreness in his head, tinnitus and buzzing. He also sits with his hand up to his face as if he’s shielding his eyes from the light. Apparently head pain is a common lingering aftermath of a stroke too.
Pleased to read you are managing ok caring for your baby and her baby! Hubby often finds he is better if he’s doing something - he’s been much better the past couple of days as he’s been off on his tractor cutting hedges!
He’s been on injections since October 2018 but his deficiency was caused by years of taking metformin and omeprazole. He had 6 loading doses and then 3 monthly injections, which he said had no effect and he felt no better. He wouldn’t consider having more frequent injections and has been on tablets since May when his injections were stopped.
Same time frame ad me. I had a higher frequency of injections . They started in Nov. 2018
Good morning Nackapan I’m so sorry to hear your still suffering it’s a hard road for you.I don't talk about the head pain much as I put it down to the brain injury after the big fall but I still have a lot of sensitivity I just don't know if it’s that or the p.a causing it all.My eyes are still red and very sensitive and where I hit the concrete with the front of my head it fractured my jaw and split my “laughter lines” around my eyes right open,I’ve had a brain scan after 2 years Of continuing symtoms and the eye specialist said I was fine and dismissed me back to gp but I’ve no confidence in that diagnosis I don’t trust it.
All you can do is continue with your Injecting routine and keep pushing for your appointment your doing your best to get through it would you not consider paying private to fast track things,I know it’s not right even in the news now it’s saying so many people are going private because we can’t get nhs care and appointment with consultants,if you could get a consultant who works both private and nhs then he could refer you for scans / treatment on nhs then you would only have to pay for his consultation.
I have a private c.t scan for Tuesday for my kidneys £545 then I’ll have a couple of hundred on top for consultation but what else can I do I can’t move forward until I have this done because we don’t know if it’s stones or something else.My gp had no interest in referring me so I’d no option and consultant said to gp he wasn’t happy and that my “stones” hadn’t been investigated properly but made no difference.
I hope you can find a way forward soon and this doesent spoil your enjoyment f your new grandaughter youve coped well so far haven’t you.take care xx
Thank you. Yes I've paid over q £1000 already on 2 neurologists after NHS one discharged me!
Specialist optician .
This specialist is too costly and not even sure right one?? Then its getting there !! My husband doesnt drive I'm the driver.
So hope it happens soon and I will go from there if I need to pay for treatment.
Good thoughts though.
I donr l ow I'd b12deficiency of and head bang on concrete either. Never will probably B12 deficiency was the cause though ! A vestibular disturbance from virtigo??
Three neurologists had 3 different theories !! No solutions though.
Hope you okay. Thanks for reply.
Still enjoying the baby but so frustrating with so many symptoms to deal with. Alsi the attitude from so many that it will curd me if it was mind over matter I'd be cured lol
Not a chance Nackapan I can relate to that stupid theory it’s not as cut and dried as people would like to think but it can be a welcome distraction. One of my grandchildren was a real screamer as a toddler and baby and I just couldn’t take it after my head injury,the pain it caused me was horrendous and of course my family thought it was just me not being tolerant ,it’s something you can’t explain isn’t it.
I had a joiner in once I’d moved(yet again lol) and I needed the doors planed as the carpets I’d had put down were too thick.well after 20 mins of nee nee nee on those bloody doors I paid him to go away,it was like he was planing my head he said I can come back another time I said please don’t lol.my husband dropped me at sons while he did them it’s that bad isn’t it,
Baby won’t cure your problems but she’ll certainly distract you just know your limits don’t try and brave it out for anyone just know when you’ve had enough there’s always another day isn’t there.take care x
Did you ever investigate your other b vitamins? I read somewhere that a deficiency in one of them causes might sensitivity. B vitamin deficiencies are more common than many people think.
. Yes I've looked onto that. Akso too much ibuprofen can cause light sensitivity and so it goes on.
Its definitely linked with using my eyes !! Signals. Main thing is I have made improvrments but feels so slow when I just want to get on. Hope you are doing okay
Hope all is well with the new family. Sorry to hear about brain/head fragility, I do hope you get answers and your symptoms improve. Quite an apt description of hitting head on concrete wall. I’ve had the sensation of brain ‘being on fire’ and ‘a TV set smashed over my head’ (very painful static).
It is difficult getting the balance right of not overdoing it with a gorgeous little one.
I have had most of what you are describing at some point over the last 8 years or so , some have improved since SI once a month . I discovered that a lot of the pressure feelings that I got in my head improved considerably when my blood pressure tablet was changed in April this year however it seems to be creeping back . If you take meds have a look at the side effects leaflet and see if anything on there fits with you. All best wishes
I'm on b12 injections only . Paracetamol or ibuprofen if needed. Good thoughts though . I have made some more improvements I think since injecting every 6th day since ? April .
Congratulations on the baby such lovely news. Your symptoms seem all typical and in keeping with your condition for many, but only an expert can rule out other things, so I can't advise re neurological things. But I remember my first year how I staggered my balance and it frightened me. What I would say, as a gran, a mum and a health visitor helping with a baby can be exhausting work the work physically and emotionally, but that's what grans, aunts and mums do. So look after yourself too and find a nice balance. Wishing you well Nackpan xx
Yes you are right. After 36 years if working in the NHS as a band 4 Nursery nurse it's very hard not to go into automatic
I simply cant do it . The head symptoms ard far worse with change of direction and too many trips up and down stairs . I'm backing off now. Baby b/f well. As light intolerant 'clock off' early now . I think it may of been the lights . But we have to try things with this condition. Hiding away can make things worse. So glad for S I b12 .
So yes . Cherryclaire warned too. I'm resting and watching now to get in a good place for journey home.Even talking less as that gives symptoms .
Leaning over I've read on here many find set balance issues off again . My job nearly done .
H. V will be visiting after I leave!! Unless restrictions go up another level.
My daughter more confident. More herself. Baby calm ( most of the time!) Breast feeding well.
It's more harsh in these difficult times for women. No support circles allowed with other women. Out of hospital within hours . No midwife visit just a discharge phone call. Not sure if H.V doing a face to face now home visit .
Clinic shut unless a clinical need like jaundice test . Women need women after childbirth.
Obviously daddy's play a vital role. As post natal depression can be caused by b12 deficiency I've told my daughter to spread the word via text to 'virtual mother group' I'm really surprised bloods are not done for iron vit b12 ect a time after delivery . Rather than wait for signs of any deficiency.
Yes will be pleased to get home to my husband and cats and my own bed!.
Another lockdown here for a month starting next week. Difficult times
Bad enough when well let alone us lot struggling with various lingering symptoms with no real medical guidance and investigations on hold.
No nurses now at my surgery . ? Why they left so brought in from elsewhere when sessions needed. I've nor had an IM b12 for 10 weeks now. (Have SC si) No idea if IM any different really. In theory you would think it stayed in your system longer. But having b12 injections frequently it doesnt seem to make any difference. I like some contact with a nurse but if you seeing a different one every time pointless really. Theres too much DIY with this condition.
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