Pain developed in hands and feet after SAH

[Bev75]

Hi,

I'm new to the site. I had my SAH end of May this year. I've been reading your blogs over the past months, whilst in my recovery, which have been a great comfort to me knowing that i'm not on my own.

 

I has a Spontanious SAH, the paramedics came after 2 hours, missed every red flag, took me to hospital, saying I was over reacting and just had a headache. Was left for a further 5 hours, was only given Ibruprofen. My daughter said it was so upsetting to see me so ill. When the doctor decided to look at me and send me for a CT scan, all hell broke out. My daughter said they were pumping me with morphine and said I was being blue lighted to the Queens Medical Hospital Neuro unit, where I was placed in ICU

 

After my SAH, I also developed Menengitis, to be honest I don't recall much of what happened, was told I was in ICU for 4 days until stable and was in hospital for 3 weeks. I really did feel like I had been away somewhere, it was like i'd been on another planet and had to relearn everything I took for granted.  I had experienced sensory problems, hypersensitivity with hearing, photophobia and had lost the sense of smell and taste. This has slowly started to resume, leaving me with hypersensitive hearing and sensory overload, which makes me feel quite sick and disorientated at times.

 

After the first 9 weeks I started getting different pains developing in my feet, then my hands and now it's also gone into my elbows too. The pain is like a burning sensation, my hands and feet swell and get sore and stiffen when resting. I find the mornings and evenings the worst. I'm also finding that my hands are starting to lock when I try to open and close my hands.

 

I've been put into Pregablin 600mg whuch has eased the symptoms a little. I'm worried that these symptoms are here to stay.

 

I know I am still very early into my recovery. I still get the weird sensations of cold running water in my brain and still have lapses of concentration, with fatique. But has anyone else had this pain develop in their hands and feet. My doctor thinks it could be central post stroke pain. Could anyone give me advise about this or share their experience, I would very much appreciate any support or advise please.

 

Warm Regards Bev x

[paul99]

Hi Beverly

 

I would think this needs to be seen by a neurologist at the treating hospital  although we cant give medical advice it could be linked to the bleed so get checked out speak to the specialist nurse of the hospital where you were treated just to put your mind to rest

[Catwoman23]

Welcome to the site. I think you will find many answers and threads here helpful. I cannot give med advice. The med you are on is for neuropathy pain but make sure you discuss side effects with your doctor. See neuro regularly and ask them questions. Your brain had been affected and it also depends on where it was affected to have those sensations. Drink lots of water, rest, try not to have stress.

 

Good luck.

[Bev75]

Thank you both for your advise. I've got a neuro appointment with the consultant end of December. I had a cerebral angiogram at the time of the SAH, they said i'd had some blood vessels that had obliterated and then resealed themselves. The blood had also got into the CFS fluid causing irritation to the menengies, where I developed menengitis and also low sodium levels in my blood. Apparently this was causing pressure on my brain, hense being in ICU. I was given Nimodopene for  3 weeks.

 

At the time they told me I would have a lot of pain in my head, neck, upper and lower back as the blood in the fluid could take up to 3 months be reabsorbed. But after 9 weeks, I developed peripheral nuropathy. They didn't tell me about this and it's been getting worse.

 

My speech has improved, I seem to stammer and forget my words when I get tired. So i've been resting as and when I can. I don't know how much water I should be drinking now. My fluid intake previously was monitored to just 1.5 litre per day, due to the low sodium levels. 

 

Has anyone had ongoing problems with their hearing and eyesight being very oversensitive. I still am not able to tolerate being in a crowded noisey environment, such as going out for a meal or going out for a drink. It's like all my sensory filters have gone and I feel every vibration in my head and ears. I have earplugs and wear dark glasses as and when I need them. But i'm not tolerating being out in busy environments. Does anyone know how long this can last for?

 

I'm finding that my friends are asking me to join them for meals out etc, but i'm having to decline. Because you look ok, people think that you now ok. But as you know, this is not the case when your brain is still healing. I'm 53 I was a very healthy active lady before the heamorrhage.

 

The neuro doctors can't give me a reason why this happened, they told me I was very lucky to of survived this, especially as the paramedics missed all my symptoms, who scaled it down to a non urgent case in their hand over in casualty and was left in cubical for 5 hours before being seen by a doctor. 

 

After the CT scan, they told my daughter that I was being transfered to the neuro unit in Nottingham, they told her not to follow the ambulance as she would not be able to keep up with them.

 

My daughter got to the unit, thinking that I would be there and being treated. Only to find the doctors were still waiting for my arrival. My daughter and family were frantically calling the hospital to find out where I was, they didn't know. Apparently the paramedics turned up 2 hours later with me. Where I went to ICU. I was totally out of it and unaware of what was going on, my family made their concerns to the neuro doctors of the previous hospital's lack of care and early treatment.

 

Thank goodness I was now in good hands and had the Gold Star treatment.

The neuro unit at Queens Medical Centre in Nottingham were brilliant xx

[Daffodil]

Hi Bev

 

6 months on and you want so much to hit fast forward and be able to resume life as you knew it but the effects of the bleed along with the meningitis means that your brain is still reeling from what is like an assault and some of the effects you describe are very familiar and I can still get some if not all of them if I over do things now over six years later.

 

I couldn’t cope with any  sensory load beyond gentle cognitive stimulation for the first year really. Conversations had to be one on one, if I went somewhere noisy I had to lie down after with everything reeling and the first time I went in a supermarket all the lights and pace , well i almost passed out. Didn’t go again for ages!

 

It does get better but you have to give it time. Don’t stop trying and seeing what’s ok but rest after, that’s your mantra for now, do something, anything, then rest that brain. Earplugs, sunglasses are brilliant and again I still always have those with me. 

 

Drinking you should be aiming for a adults intake of water and make sure you don’t let yourself get hungry as the brain uses lots of energy as it heals. 

 

Tell your friends what’s hard for you, suggest doing something different, quiet walk ,  or ask them to book somewhere quiet and just join them for dessert or a starter, go for a cream tea somewhere off the beaten track . That’s what I did, I can now manage a meal sometimes but more than 5 people round the table and I start to lose attention and words but again it’s improving now still.

 

My social life is very different, gentle probably best describes it but I’m still curious still pushing boundaries. I was 39 when I had my SAH. 

 

 

[Bev75]

Thank you Daffodil, for your words of wisdom. This truly has helped to give me a better insight as to what to expect during my recovery.

 

I shall be taking on board your suggestions, I like the idea of a cream tea off the beaten track. That's on my to do list in the not too distant future ? for sure. Daffodil, 39 is so very young, bless you xx

 

[Winb143]

Hi Bev, 

A man who worked with us, well his granddaughter was treated like you was they sent her home with headache relief pills

She was only 14 and they never scanned her and she died of bleed on brain.  Was so upsetting for All of them.  Then Her Dad became a 1st responder.

 

He was my 1st responder,

 

My Daughter says I never made much sense when in cuckoo land but to be honest I never have xxxx ha 

 

Never worry and see Doc if worried about anything,  I was so scared and my surgeon told me stress is bad for us.

 

Keep going forward and when on a downer I find singing happy songs helps, shame my family do not agree  lol      

 

Good Luck xxxx

[Bev75]

Hi Winb143

That is so very sad to hear this about the gentleman's grandaughter, total respect for her father. And a blessing for you that he was your first responder.

 

Keep singing young man?

Thank you for your kind words,

Xxx

[ClareM]

Hi Bev sounds like you have had a rough time of it but are doing all the right things to come out the other side. 

 

I too was left in my diagnosing hospital for many hours initially with no treatment. It was my husband kicking up that prompted my dash to a neuro unit who operated immediately on arrival. Hydrocephalus and and EV D for a week not much memory of any of it. 

 

Vision and hearing are often common problems post bleed. I still suffer in noisy environments and avoid them. As Daff says ear plugs can be useful and keep on with the dark glasses. 

 

I hope you can continue to recover well, take it slow and be patient. Drink as much fluid as you are told to and rest rest rest. 

 

Take care 

 

Clare xx

[Bev75]

Thank you so much Clare for your Kind supporting words. 

 

There seems to be a few of us who were left undiagnosed with no treatment for many hours. Thank goodness your husband was so persistant, which prompted them to get the care and treatment you needed. Sometimes I think when we don't remember much it can be a blessing, but not nice for our family and loved ones to have to see us so ill. 

 

Take care and hope you too are recovering well xxx

[Winb143]

Win <~~~ Is a she lol xxxxx

 

[Bev75]

Thanks for letting me know 😊 xxx

[Bev75]

 Hi guys,

 

Just an update, 6 months on, i'm still having sensory overload, especially sensitivity with my hearing, photophobic, feeling sick and disorientated. Headaches with a burning sensation in the left side if my head with high pitched buzzing sounds. (Very odd sensations).The pain that developed in my hands and feet have now spread to my elbows too, which i'm trying to manage with Pregabalin which has helped to take the edge off.

 

I've also been using mindfulness and relaxation techniques to help bring my sense of awareness back.

Friday was a bad day, woke up not knowing what day it was, feeling very disorientated. So I rested and drank lots of water, felt a little better on Saturday. 

 

Today, I had I saw the consultant who looked after me when I had the SAH. My hopes were dashed, when he said there was nothing he could do with the sensory overload and symptoms that i'm experiencing.I'd developed Meningitis and low sodium levels after the cerebro angiogram that he performed and says, it's now compromised the central and peripheral nervous system.

 

Today I broke down in floods of tears after hearing that my recovery will take as long as 2 yrs plus and still might be left with sensory overload.

 

He's booking a further MRA, bloods and something about testing the CSF build up and appointing a SAH nurse for me. He also kindly signposted me to your support group, which I have found to be invaluable, a great support group, you all have been my saving grace. At times I had felt quite alone during my recovery, but you guys have really helped me through it, giving good tips and advice.

 

Tomorrow, i'm hoping will be a better day xx

 

 

[Tina]

Hi Bev  

 

I really hope that today is a better day for you in every way. 6 months is very early in your recovery and it took me about 2 years before the sensory overload and tremors improved, but they did   I still get bad days with my balance and dizziness, but its when i have pushed my limits and not listened to my body.  

 

As has been said above, your brain has been through a huge trauma and is trying to repair itself and continue to function as normal. Be kind to yourself, listen to your body and take one step at a time as you did the other day and it helped you feel a little better. So pleased the Pregabalin is taking the edge off the pain in your hands feet and elbows.

 

Things will improve, it just takes time which can be so very frustrating. You have been through so much bless you xx

Sending you loads of positive thoughts and a big hug. Wishing you well for your MRA and further tests.

Keep in touch and let us know how you are doing.

 

Take care

Tina xx

 

 

[Bev75]

Hi Tina,

 

Bless you, thank you so much, your message really has given me the lift I needed and today has been a better day. Yes that is so very true, to be kind to yourself and i'm putting it into practice as we speak 😊

 

I live on my own, with my little cat Mac 🐱 and find the quietness helps to calm my senses. But I have to venture out, doing the normal day to day stuff, that is challenging. I've been trying auditory desensitisation, listening to pink noise in the background, just trying anything at the moment. 

 

I'm in the mindset now, I just have to let it go, greet each day as it comes.

And i'm taking all advice onboard.

 

Thank you xxx

[Tina]

Hi Bev

 

Loving your mindset,  onwards and upwards, positive head on  

Hope today another better one for you and your little cat Mac xx

 

Take care

Tina xx

 

 

 

[Bev75]

Hi guys 

I've been struggling these past few weeks. The pain in my hands and feet have escalated, I now have this in my elbows, arms, shoulders and neck too. Feeling fatigued, have had a headache all day today. I've been drinking lots of water and rested today.

 

I've been back to my GP to get checked over. They've done some blood tests for auto immune markers. I've had a call from the surgery, they've asked me to go back to see the GP regarding the results and they've referred me to a rheumatologist.

 

Also my neuro surgeon has written to me after my follow up appointment and MRI. He's sugesting  a lumbar puncture to assess the pressure of the spinal fluid within the brain and spinal column and draining some to see if this makes any difference and says might lead to an operation for spinal fluid diversion to address any abnormal pressures that might persist following my bleed.

 

I just feel after 10 months post bleed, i'm starting to struggle with all this.

Finding it hard at the moment.

 

Xxxx

 

 

 

 

[Tina]

Hi Bev   

 

So sorry to hear you are struggling and finding it hard at the moment. Hugs xx

I really hope the rheumatologist and Neuro Surgeon can help you with their tests and assessments.

10 months is still very early in your recovery. You are doing so well. There are other members here that have had to have a shunt fitted to help balance things after their bleed.

 

Wishing you well, let us know how you are doing.

 

Take care

Tina xx

[Daffodil]

Hi Bev,

 

i do feel for you as I remember only too well the big highs and lows and what felt like lots of step backwards in the first year of healing. It was exhausting to cope and try to come to terms with the impact of my bleed, at the time I found everything  terrifying  and the worst part was it felt like I would never recognise this new version of me, I felt oh so unfamiliar and broken.

 

Try to keep a diary of what you are doing, are you maybe asking too much of yourself, trying to pick up life exactly as you left it? Maybe dial things down but I do hope they help you source the reason for the pain and help you with that. 

 

I had to return to hospital when the symptoms of my Hydrocephalus returned post bleed. The extent of my bleed and volume of blood that passed into the ventricles meant mine never recovered their full function and despite discharging after my initial long stay for the SAH I eventually had to return and have an operation to place a Shunt. I also had to have numerous LPs prior to see if they could kick start the ventricles to work better...they couldn’t in my case. 

 

Before having shunt placed I had dreadful balance and increasingly bad sensitivity to noise and light and also neuralgia pain. Post Shunt it made recovery harder as the bleed impact was still early days  but I can honestly say that it was a huge turning point for me in recovery. 

 

I wish you well and once you have a plan come back and talk it through and we will Help you through it. X

 

 

[Mike157]

Bev.

 

If I didn't know better I'd think i was talking about myself in your situation.

 

Have a read of some of my posts, you may find something that might help you. Theres lots to read by the way.

 

Time, yes time is on our side use it wisely, take your time for you. You need it to recover.

 

Take time to do things much slower, it's not a race, look at the Rabbit and Tortoise story, theres the message right there.

 

You hit your own answer in the very last sentence, it's hard, very hard. Sometimes it too hard.

 

But. Some good news for you. Ready? Here we go. Theres always tomorrow, today was hard, yesterday worse, but tomorrow, oh it's going to be a good day, even for 1 hour itll be good.

 

Now the weather is warmer, go in to your garden, take off your shoes and socks and walk on the cool grass, make fists of your toes. Breathe and relax. Hear the birds singing, feel the sun on your face then breathe, relax and do it all again.

 

As often as you need to try this, its soothing and mind calming. It helps to relax, the headaches may not hurt as much, the sun with warm your tired bones. The cool grass under your feet will soothe.

 

Take care 

 

Mike

[Bev75]

Hi Mike,

 

Thank you so much for your words of wisdom. I really will have to take all of this into a daily practise for sure 😊

 

Daffodil, I had the call from the hospital, i'm on their waiting list for a Lumar drain with observation for 3 days on the ward. if I get some relief from my symptoms, they will place a shunt. How long did it take for you to recover from this operation? What was it like afterwards, I could do with your imput as i'm getting nervous about it xx

[Bev75]

Hi guys,

 

Just thought i'd give an update in my recovery. After 16 months since my NASAH, i've tried phasing back into work, but have found it's like climbing a huge mountain. I'm still nowhere near being able to do my job role. Due to sensory flooding, fatigue and cognitive deficits.

 

Still having to use my ear plugs and dark glasses, even speaking to much leaves me feeling quite sick and disorientated with a headache afterwards. I'm only managing 16 hours now, work have been very supportive. At least I gave it my best shot and the realisation is you just can't rush an injured brain.

 

I'm now going through the process of having someone help me fill in the forms about how my illness affects my ability to work. 

 

I've had to put off the lumbar puncture drain and shunt as i'd developed inflammation, (bursitis in  my shoulder and elbow) waited 6 months  to see a Rheumatologist. They've booked me in for a couple of injections and diagnosed Fibromyalgia.  I had meningitis 2 days after the brain haemorrhage,  8 weeks later i'd developed pain in my hands and feet, then months later it spread to my shoulders, elbows and now knees.

 

Sleep has still been disrupted, they are now referring me for a sleep study, due to ongoing night terrors, PTSD confirmed, possible sleep apnea. I'm exhausted, to be honest. My friend told me about a weighted blanket to try, which is on order as we speak. I do hope this will help, seems to have good reports about them.

 

I've got a follow up appointment with the Neuro Surgeon on the 23rd, 

I really have been struggling these past few weeks. 

Xxx

 

 

 

[V.Mama]

Hello Bev75

 

I have been reading through this thread.  You have been through such an incredibly difficult time.  I really feel for you.  You've been dealing with different complications and setbacks.   It's understandable that trying to return to work under the circumstances has been such a challenge for you.

 

My husband had NASAH in May 2019.  He's making a good recovery, but of course like everyone he still struggles with different side effects, and it gets him down.  He doesn't know what his new 'normal' is yet. 

 

Chronic pain is very draining physically, psychologically and emotionally.  I hope you are able to take very gentle care of yourself as you work through your diagnosis journey?  And I hope you have people around you who you can talk to and who understand that while you survived the SAH and meningitis, the struggle continues.  

 

You mentioned your cat, Mac?  I hope Mac continues to be a comfort to you.  I am a cat lover too and find their company very easy and reassuring (most of the time, I have a 9 month old kitten rescue who is very big and wrestles with my older and much smaller rescue cat, he drives us a bit nuts when he's not being super cute and cuddly).

 

It sounds like you are doing what you need to as you work through the diagnosis journey?  Prioritising what you think is most pressing.  My Aunty had fibromyalgia for many years, it is a very painful and often misunderstood condition.   

 

I work with people who experience sensory overload, and yes a weighted blanket may bring you comfort and help to settle you to sleep better.  Let us know if it makes a difference for you.

 

Thinking of you and keep talking to us on BTG.

 

Veronica  

 

 

 

 

 

 

 

[Bev75]

Thank you Veronica.

 

Yesterday I went in for a lumbar puncture. They checked my walking gate, balance and neuro obs etc before and after the procedure. They drained 75 mililitres of CSF fluid. The doctor said the pressure was raised when he did the pressure test. 

 

But oh my word, i'm not joking, on each held breath that they asked me to do, I could actually feel the pressure reducing inside my head. The throb was disapating at long last.

 

For the for the first time in 16 months, I could take off my dark glasses and ear plugs, see and hear without it being overly distorted and sensitive. My speech had improved, I looked more awake and my blance and walking inproved too, bit of weakness down my left side, but hey that's ok.

 

I sat there and had tears in my eyes, thanked the doctor, I really didn't know what to expect to be honest.

 

I've got to go back on Monday for a check up and CT scan. I don't know how long these improvements will last for, but i'm embrasing every moment. 

 

They spoke about shunt surgery, where they feel it can help hydrocephalus. Seems like the hamorrhage I had, has caused abnormal drainage.

 

So having been laid down flat, drinking 3ltrs of water and lots of cups of caffiene. I'm feeling lighter, brighter, my family say they can see it in my eyes, i'm back 🤗😘

 

This morning, still feeling good, my back is sore from the puncture site, plaster can come off tonight. Taking some pain relief medication, and a large cup of coffee to aid of post lumbar headache.

 

I'm a happy lady, today is a GREAT day, hello everyone 🤗 xxxx

[jess]

Bev really pleased you are feeling better xxx