Any neurologists? Desperate mum.

[Finallygotmy3]

I am desperate for urgent help UK.

Backstory:
I had an L5/S1 Microdiscectomy on June 13th. Around 2 weeks after surgery I noticed my bowels were not the same and I struggled baring down, much lessened urge to urinate but I can void if asked. No incontinence, more like retention. After attending A&E multiple times Cauda Equina was ruled out as Lumbar MRI clear and I can feel touch. Thats fine but the issues are still there, i then developed a huge amount of flank pain on my right side, assumed kidney, attended A&E, dr said this was all in my head, after begging for help he relented and gave me an xray, this showed huge fecal loading on the right and under diaphragm (cause of pain). I asked the ED Dr if that should prove what I'm saying like the muscles are switched off and things have stopped in my bowels. He said no, constipation was common (no I'm not on any meds, took 2 codeine the day after surgery) and I've never had this issue in my life. Sent home with impaction regime and with senna and laxido things are moving. I was also Tachycardic on multiple A&E entries so they shoved Propanalol at me and told me I had anxiety.

Since then I have developed jelly feeling in legs but again can feel touch and walk, parathesia across my arms and face. Right of face went numb so called 111, obs done again and all fine so sent home. I have chest tightness, breathing at times can be laboured but my oxygen is always fine.

Since then I've developed insomnia (1 hour a night if that of sleep). Never had this issue in my life, all put down as anxiety. Hubby and I had sex for the first time yesterday and I couldn't feel almost anything internally. I stopped pregablin that I was taking for sciatica a few weeks back so thought maybe I was in withdrawal, so I took some 2 days ago and slept a few hours, but last night I haven't slept a wink.

How I feel right now is like I'm losing primitive reflexes/sense. Sex, bowel, bladder, emotions, sleep. This is not in my head, this has all developed slowly, A&E dr refused to refer to Neurology, as has my GP but they seem happy to prescribe a very strong sleep med which I don't really want to take. If it works they won't prescribe anymore and then I'm back to square one.

I don't think this is disc related, but maybe brain and misfiring signals/hormones. I'm concerned there could be inflammation or an underlying infection (bloods normal). I'm in desperate need of help and someone to take me seriously, I'm not mentally unwell, I have physical symptoms the medical community are ignoring and that ofcourse is distressing. Any opinions welcome/help. I can't afford private, I'm sure there are a huge amount of people on here intelligent enough to figure this out. Family are supportive but also kind of stuck on how to help, I'm scared this will escalate as no sleep is obviously not good for the brain or functioning. I'm an intelligent woman, I work 2 jobs and I've had this body almost 37 years, I know it isn't working well.

My advice:

You follow the drug regime prescribed for two weeks.
You monitor symptoms
You attend your routine neurology review and ask for further advice and follow it for the recommended period

If you don't want to do that, refer yourself to a private neurologist and request and pay for the investigations you want to have.

Senna isn't for long term use, it can cause problems of its own - be careful.

Have a look at Laxido or Movicol powders, it is much less aggressive on the body and supports everything to keep it moving. Plenty of fibre in diet, I find a litre of fruit juice in a morning tends to clean me out without medications and if all else fails, McDonald's breakfast with coffee and a cigarette 😂.

Try the sleeping pills before going off to seek more options - you haven't even tried this one yet.

You need to get your anxiety under control. You're obviously in a hell of a state - I'd call it mental health crisis. You're not dying, you're catastrophising. Get yourself on some antidepressants, plus propranolol if needed. Take the zopiclone. Yes you can't stay on it forever but you'll be fine for a month while the antidepressants kick in, then taper off the zopiclone. If sleep is still a worry, read This is Natto which will completely cure your insomnia.

You have exhausted the other measures you wanted to try before the prescription, and none worked, and now you sound almost suicidal.

If you go to a medical, trust their prescription, and take the medication. Otherwise a waste of yours and their time

You need a full spine mri and they need to be checking for myelothapy, or spinal fluid leaks.

I'm certainly not suicidal, I have 3 children i love to bits and want to be here for!

I just had the pregablin last night and fell asleep somewhere in the early hours on and off till half 8.

I'm just frustrated that nobody seems to want to listen to my symptoms. I'm just going to have to wait for my follow up but it feels like that's miles away!

Because I would think that as soon as you start sleeping… your physical symptoms will improve exponentially. And I suspect that is precisely why you have been prescribed these med.

Hi OP - I had anxiety that was wrecking my sleep - have a look at the Lululight app - it’s free and changed my life - I use this and sleep more deeply than I remember ever sleeping! It uses light and your phone to trick your brain to a deep sleep - no other effort required! Hope it helps you!

How is your temperature sensation? In March I had an immune attack on my brain and spinal cord after having tonsillitis. My spinal cord showed inflammation along its entire length but I could still walk and my neurological exam was pretty much normal so it’s possible there is something neurological going on. However, I went into complete urinary and bowel retention and couldn’t squeeze my pelvic floor at all, I could still feel it when the Dr touched my bottom but couldn’t squeeze.

Something is definitely going on, its like my trunk senses have switched off though muscles can squeeze at exit. I've come on yet my flow isn't happening, i have PCOS so come on very heavy so it's like they've switched off in my uterus for contracting too. My temperature is also weird, 35 degrees and has been for a few days. Not sweating either despite being in the sun. I won't really know how to present this without sounding crazy. It definitely feels like a central nervous system issue! Senses fine for hot and cold, honestly the whole thing feels bizarre.

I took pregablin for a few weeks following hip surgery. When I stopped I felt very weird. Wobbly and jittery for a few days until it was out of my system. I would try slowly tapering it down and then see how you feel when you have stopped taking it for a few days.

Zopiclone isn't going to cause dependency in a few days. I would try it just for 3 or 3 nights ( choose times when you don't have to drive first thing). Then at least you have had a few nights better sleep which will help you to be calm and will mean you can eliminate sleep deprivation from the cause of your symptoms.

It sounds to me the impact of someone not getting any sleep and suffering from extreme anxiety and insomnia

I had Zopiclone prescribed about 15 years ago during a period of insomnia caused by stress (bereavements and teaching!). They work. Im still intermittently a poor sleeper and my gp lets me have 7 tablets about once a year for when I’m desperate. I take half. Im obviously not addicted but I am very disciplined about taking them.

I’ve had surgery on l5/s1 for cauda equina. They told me it can take up to a year for total recovery and knowing where you’re at
I had weird symptoms after the op, tingling down my arms was one of them and it was all the nerves having been messed with. I had to start from scratch, basic stuff like standing on one leg. I did some rehab sessions with a PT that really helped and had some physio

I absolutely agree, my mum is coming over tonight so we're gunna put on a comedy and have some wine. I've had a good chat with my husband too and he is totally with me.

I've had anxiety in the past including with miscarriage and infertility and never felt like this.

I have issue with the continual reference to anxiety because a doctor said so - and then MN jump on it.

Doctors have come out with so much nonsense in my time managing so many health conditions - all of which did cause and exacerbate anxiety - but anxiety was not the cause and reason.

Have you heard of the autonomic and sensory nervous system? Your muscles can be all fine ( central nervous system) but your autonomic nerves can have an issue for a multitude of reasons. Sometimes anything impacting that can affect the peristalsis of the bowels ( the way they move poo through the bowels), it can cause tachycardia, anxiety all sorts, make bowels go too slow, or fast or both.

I'm not sure what part that spinal disc innervates. If it does innervate the bowel that will explain alot. Have you looked online at the psrys innervated by that lumbar disc?

I had to tell a neurologist all about my own sensory/ autonomic nerve problems, no joke. It is not something they ever seem to fully understand which is unbelievable to me. If you can move your muscles then you're ok and out the door for many neurologists.

Zopiclone is horrible. I tried that. I do take gabapentin and much prefer that for sleep and to relax. That sounds better temporarily than the zopiclone.

I feel that time might be the best healer here. Whatever has happened I believe absolutely can resolve as you heal. You just need something to help you cope with the understandable fear and confusion about wtf is going on.

Do not even use the word anxiety next time you speak to a doctor. I believe you when I read every post where you are quite certain about these symptoms.

Almost every autoimmune condition I have was fobbed off as anxiety before I got diagnosed. That is what doctors love to do. It gets you out the door and their job done. I am not saying that's what you have btw.

I would want to be really reassured by the surgery team, that there's no infection, leak as suggested by other poster.

The Vagus nerve is the major nerve running through the body that branches off and innervates the autonomic system; heart, digestion. It also impacts feelings of anxiety, panic and dread. Sometimes that can temporarily go awry. You have had surgery so haven't made this all up out of nowhere.

I feel it will improve and resolve. But be firm in communicating your symptoms. Don't use the word anxiety because they will jump on that like a shot. Medical mysogyny is rife. I have had 20 years of unbelievable treatment due to this.

I have a totally fucked up autonomic system ( a particular condition) so I understand the physiological symptoms quite well.

Movicol is much better I feel long term than senna.

Magnesium powder supplement does make my bowels work better. Magnesium Citrate powder from H and Barrett.

Deep breathing, 4 by 4 technique can help relax the nervous system.

Look at dysautomnia.

And still not taking the medication prescribed to you. Wine is unlikely to help

I would 100% agree. Senna works by irritating / poisoning the bowel to get it to empty. It forces the muscles to contract and your own body can become lazy afterwards. Laxido and movicol are salt based and this salt draws water into the bowel. Lactulose is sugar based (not absorbed by the body so no real impact there) and also works by drawing water in. I think lactulose is best as easiest to take - one cupful instead of a salty drink. Good luck OP.

That's the word! It's what I have described in my long post. I have this.

Please take this kindly as its meant kindly.

Loss of sleep is devastating to your body and to your mental health, it affects our reasoning skills and our body cannot properly heal.
Being unable to move your bowels properly can have a profound impact on your wellbeing and how your body feels.
Having surgery has an impact on your physical wellbeing up to around 3 or 4 months.

You have these three things going on which individually aren't a major issue but together will have a very negative impact on your sense of wellbeing and mental health, but also on your physical health.

Your bowels will ultimately sort themselves out. Try to walk for at least 20 minutes a day. Walking and exercise helps your body to get rid of waste, avoid codeine, tramadol, morphine, and stick to paracetamol for painkillers.

The not sleeping - you needs to stop catastrophising and get out of the negative thinking. Do positive things, watch feel good movies, think positive thoughts about yourself. Order some new clothes, go for a walk, eat natural foods.

Rest in between and do nice things for yourself and you will be fine.

Anxiety is an awful thing but you can beat it. I wish you well

Thank you so much for writing this. It is nice to not be treated like I'm ready to be hospitalised. I feel completely sound minded, am able to complete all daily tasks, play with my children, cook, paint, go to the park. Yet I mention my body feels very off and the world treats you like you're bonkers.

I'm at the GP tomorrow to discuss everything x

The first question the GP is going to ask is

”have you been taking what was prescribed to you on your last visit?”
and your answer? “No”

Hey OP, how did you get on at the GP? I was wondering about maybe asking to try Amitriptyline at bedtime, it’s a muscle relaxant and might just help, and maybe just take the edge off your anxiety too xx