Neurological symptoms after dural puncture

[Alirh2000]

Hi, I had a post dural puncture after and epidural 5 months ago now. I had a blood patch procedure which unfortunately didn't work. I suffered with the awful postural headaches but also tinnitus, weird sensory symptoms in my limbs and feeling generally rubbish. I was in and out of hospital for various investigations which was massively scary and traumtic. This on top of having a new baby to care for pretty difficult. The headaches have settled but for the past 2 months I've had tingling in my legs, worse on the left pressure in my head. I was terrified it was MS but an MRI a few weeks was clear. My neurologist didn't think it was MS but he only spent about 10 minutes with me. My GP thinks it's PND and PNA but I'm still very worried about these neurological symptoms as they are quite significant. I have started sertraline and am hoping this will help to improve things. Has anyone else experiences anything like this? Many thanks x

[rocky77]

Welcome

Sadly there are many women who feel exactly like you do and tests have revealed no known cause. My own experience of PNI commenced with very strange inexplicable physical symptoms such as pressure behind one eye, exhaustion, eye sensitivity , feeling spaced out all the time, headaches, tingling, dizziness . This triggered horrendous anxiety. Antidepressants made a huge difference - most of the physical symptoms lifted fairly quickly but would return when tired, stressed, ill or pmt. this seems to be common. I really hope the meds start working for you. It must be very hard not knowing what's going on and feeling the way you do with a baby. Do you have any help and support?

As for causes, there are several ladies who ha we felt this way following epidurals. I didn't have one. In my case I suspect it was some sort of adrenal fatigue. Other women put it down to vit B toxicity .

There is an amazing closed Facebook group - if you like I'll give you a link - for women worldwide in similar circumstances- please keep talking. We really do understand X

[Alirh2000 in reply to rocky77]

Thank you for replying. It helps to hear that others are going through/have been through something similar. I am going to see another neurologist for a second opinion as the first did not take a thorough history or do a full neurological examination. I need to just ensure there really isn't anything physical underlying. I'm hoping the sertraline will start to take effect within the next couple of weeks. Yes, the link to the Facebook group would be great - thank you x

[rocky77 in reply to Alirh2000]

m.facebook.com/groups/18267...

Can I ask where you live?

I'm in the uk - I visited a neurologist and eye specialist privately , had lots of blood tests and saw a ent specialist (had ct scan of sinuses) - all ok.

Of course you must get all physical symptoms checked out - I know thyroid issues can cause odd symptoms too. X

[Alirh2000 in reply to rocky77]

I live in Cumbria. I've had bloods done - thyroid, B12, folate all normal. Ferritin was on the low side but I'm not anaemic. I'm seeing a neurologist privately over in Newcastle because there are very few who work in Cumbria. Thanks again for your support x

[rocky77 in reply to Alirh2000]

Keep talking - I know how hard it is. When is your neurologist appt? X

[Alirh2000 in reply to rocky77]

It's on Monday

[rocky77 in reply to Alirh2000]

Good luck x

[rocky77 in reply to rocky77]

Let me know how you get on x

[Alirh2000 in reply to rocky77]

Thanks, I will x

[rocky77 in reply to Alirh2000]

Hi just wondering how you got on with the neurologist ? X

[Hidden]

Hi there

I also had a spinal fluid leak

2 blood patches later still suffering

There's a Facebook group csf leaks uk and others join it

My names Suzanne on there there's lots of help

I'm still constantly dizzy but fullness in ears has left

I had bad problems going into store it would make me sick so now I avoid them

Seeing a specialist in stoke on 31/8

Rocky knows all about me and is very helpful on this group

I'm in Liverpool

Keep us posted and good luck

[Alirh2000]

Hi Suzanne, sorry to hear you've had problems too. X

[Flower55]

Rocky77 and Lynsey0838, what does your dizziness feel like? Are you dizzy in your head and offbalance or is the room spinning?

[rocky77]

Hi Flower55

My experience was over a decade ago. From what I remember it was a little like being on a boat. I felt off balance.

Are you suffering from these symptoms?

[Kmcxox2]

I had the same experience 5 months ago but refused the blood patch. I am also starting to come around now. I never did any further investigation my GP strongly felt my symptoms were related to the puncture. it can take some time to fully heal but my symptoms are always improving so I have hope. but after leaking for a period of time your brain sags so these symptoms are understandable. the past few days I have had any funny head pressure or tinnitus so I have hope !!! hang in there, I just spent the past 5 months on Google, I'm over it. the internet had me convinced I was dying.

[rocky77 in reply to Kmcxox2]

Glad things are better and youre recoveting. I too was obsession with Google and worried i had sime dreadful. It's hard not to be when you feel so ill and no one can tell you why. X