PNI ORG UK

How do you all live with dizziness?

So it's 12 weeks since my c section and I'm still dizzy

I've got brain fog every day, I don't think it's vertigo I think the hospital have damaged my nerves and my neck is very sore and stiff

Had every MRI and ct scan possible and nothing shown up

Tried vestibular exercises they don't help

Meds aren't helping either

How do I live like this? I have a 4 year old and my baby

It's ok people saying my body will heal but it hasn't up until now

I can't plan to take kids anywhere as when I'm out I feel spaced out and wobbly

Any help or advice much appreciated

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Hang in there with the meds. It takes time for them to kick in and start working properly (for me it was 2-3 weeks). You can feel worse during this interim period.

It's extremely hard to feel positive when you feel so rubbish but have hope. Are you seeing the specialist again soon? X

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Yes as mentioned above, it may take time for meds to work, I am suffering like you and with 2 kids too, but I am hoping I will start medication soon and that with the medication I will start feeling better too. I want to tell you that I sometimes feel going out of the house and meeting people do help me feel less dizzy, also I noticed that when I don't sleep enough at night I get more dizzy, I know how horrible it is to be dizzy all the time and I know that maybe people around you will never be able to understand how difficult it is to live with it, just don't be hard on yourself and like me on days when it gets too strong I try to do the least things and lay down as I don't fell it much when laying, be strong and have hope, it will be over soon with the meds.

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Fantastic news Lorsa - maybe the symptoms are anxiety linked if the diazepam has helped you. Don't mean to put a downer on it as as brill as it is I believe long term it can be addictive. Fantastic short term use just to give you a breather from the anxiety and the symptoms x

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i have tried reiki twice over the past year with very positive results - the second time was after a relationship break up for anxiety and it helped hugely. I also tried acupuncture for PNI symptoms (pressure behind an eye ) and that helped too. It certainly won't harm you but could help.

Great to hear you sounding do positive x

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Focus on the positives you make as you will become the person you once were. So well done on taking your son to the barbers and getting round 4 shops - it's an achievement one you can build on. Don't compare yourself to how you once were or other people - just focus on the here and now and how you're improving.

Re panic when I felt it coming on I would take slow deep breaths through my stomach and really focus on them. In time that helped me calm down. Perhaps practice that? X

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This helps me too.. focusing on breathing thru your nose and into your stomach.. if been suffering with this crap too. The worst!

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I'm sorry you're struggling with this awful illness - it's truly cruel.?are you getting any help? X

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How did yesterday go? Often simple things we would have taken for granted once upon a time can give the most pleasure . Good luck with the counsellor x

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Pmt? Big hugs . Blips are like that at times without rhyme nor reason.

Glad you had a nice day yesterday - some times just feeling ok can be an alien feeling x

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No advice. Just sympathy! I'm seeking answers too! I have two under two (5wks PP) and I feel trapped on a swaying boat!

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Did u have a c section?? Did u have headaches?? Just curious as they punctured my spinal fluid which I believe is the cause of all of this

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No, sorry. Vaginal birth. I do have headaches. I am assuming vestibular migraine!

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Hi kjd291

Congrats on your new arrival but sorry you're suffering from dizziness. Have you been to the Drs? If so what do they say? Do you have any other symptoms? X

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I'm waiting for a referral to process to get to see an Ear Nose and Throat doctor. My midwives just said it could be imbalance and did a blood test. One guy said it could be inner ear stuff that would solve on its own, and someone else said it could be BPPV and the ENT would help. But I think it's vestibular migraine. Headache, neck tension, ear pressure, sensitivity to light, increased anxiety. We'll see when I finally get into this next doc!

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Let me know what they say as you've all the same symptoms as me I'm also getting sensitive to the dark too can't sit with lights on then feel a bit sick when I turn them off at night

I hate living like this

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I had sensitivity to light - these symptoms are so strange and clearly not uncommon. I had a ct scan of my sinuses as I had pressure sensation behind one eye - it all came back normal . Obviously that's good but frustrating there's no obvious cause .

How are you Lsorsa? X

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Good luck kjd. Let us know how you get onx

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Hi Lsorsa

How are you doing? How's the past week been for you? X

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Most recent doc said "just hormones" along with fluid retention in my head and wants to wait another month to see if it goes away on its own before we jump though other hoops...

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It's frustrating that no one can give a definitive explanation . Fingers crossed things improve - do you know what they might do next? X

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I have an appointment to see an ENT next month who specializes I. Vertigo. No other openings before then. I'm starting to have anxiety on top of the vertigo though because of all this waiting and unknowns

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I'm not surprised it's all getting to you! I'm sure my weird physical symptoms triggered horrendous anxiety which in turn was much worse due to hormones . Hopefully this specialist will have answers and a solution. Have you tried to manage the anxiety? X

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So far I'm just managing the anxiety with acknowledging that's what it is, cutting coffee, and working out. Those things alone are helping a good amount.

I'm mostly trying to remind myself the vertigo/rocking came first-not the anxiety. I'm not going crazy. Haha.

How are you doing??

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Hi just wondering how you're doing? How did it go with ENT?

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No you're not going crazy for sure! Great you've founds things that help you. I keep harping on about exercise but it helped me hugely and still does !

I'm ok thx. Been out on my bike today and it's been lovely ! X

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How did the procedure go? How are you Lsorsa? X

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Good luck! Will be thinking of you and hoping it goes well. It's terrible there's no research into it all X

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Thank you

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How are you doing Lsorsa? X

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Hiya rocky I'm. It good tbh

Back at doctors today who said they think Dizziness etc coming from my neck

And I HAVE to take fluoxetine to get my mood better to help me cope

It'll be neck surgery if symptoms done die down

I just hope it goes away soon and I can forget this living nightmare

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What are the neck issues ? Trapped nerve? It seems a bit drastic to start talking about surgery without an exact diagnosis.

How do you feel about the antids? X

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Hang on in there - you could feel a bit rough for up to several weeks but hopefully once meds start too work you'll start to feel better. Maybe take them in the evening before bed? X

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Yes I will do, think 7pm will be the time as they should be out of system by time I get up

I'm just sick of guessing what's up with me 😰There's a big thread on postpartum neurological on Facebook

A lot of women are suffering the same symptoms

It's a joke that drs don't know about it

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I've just requested to join that group - thanks! When I was ill one of my parents' friends is a biochem professor. I remember him saying hormones can be very nasty !

I have a brilliant GP who took me seriously , didn't know that PNI can have physical symptoms. I paid privately to see an neurologist - he never suggested PNI but clearly thought I was crazy!

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It was quite a long time ago for me but I don't remember having muffled ears. One of the worst symptoms was the foggy headedness and feeling as if I wasn't really here or somewhere deep inside my body.

How do Drs checked the leak has stopped? Btw are you in the UK? (No need to say if you'd rather not).

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Hugs - you are really struggling . I'm guessing it's day 3 of meds - hang on in there if you can. Perhaps go for a walk? Or get someone to visit you. Distractions can help a lot and give you s bit of relief. Have you been referred for any talking therapy ?

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Could you take the diazepam with them for now - I think I was given this whilst meds kicked in.

What sort of counselling do you cover with him? You can teach yourself to breathe - go into you tube there's a tonne of stuff there plus mindfulness X

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I'll just stick with diazepam rocky

I'm never feeling spaced out again it was awful

Good idea I'll have a look x

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I was taught deep breathing through the stomach - really focusing on each slow breath. Also tensing your muscles for several seconds then releasing can help a lot x

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If only! I could with one for myself! Btw I went to Lpool a couple of years ago for the first time and loved it! What a fantastic city!

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Where are you? Did you get accepted into the other group btw?

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I live in Surrey. I don't really know many other mums who had PNI in my area so it's difficult to guage what the quality of the services is like here.my hv was v good and would give me weekly listening visits. I saw the GP regularly. There was a cpn who specialised in pnd but because of where I lived I could have one to one support from her but was able to access a 5 week course she ran which was excellent.

How are you today? X

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Tbh it wasn't enough support at the time - I could have done with counselling but there was a 2 yr wait for that. I wish I'd gone privately .

V good group of FB - thanks for the recommendation ! X

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Same here it's garbage

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How are you doing? X

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Had a crap day, went shopping the lights were awful and sent me brain and ears into limbo 😓

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Sorry just seen this - I don't seem to get notifications when someone's posted, anymore .

Could it have been a type of panic attack? I used to get like this at times , even if I was looking forward to a shopping trip. I remember Tescos used to make me feel spaced out - it never made sense as it was practically my second home but as soon as I went in the spaced out feeling would heighten, I'd feel nauseous and some how I'd feel the lights were a cause but now I think it was a panic attack.

Another time , and I was on meds feeling much better, I went to town for the day with friend. I'd been looking forward to it and as soon as I got there the same happened and I felt ill throughout.

Perhaps next time try slow breathing and focus on the things around you . You might not even be concious of getting anxious. I think everytime we move out our comfort zone there's a reaction - flight or fight - but it's do minimal we normally don't notice. With PNI were super wired to everything . I know it's rubbish though . Hang on in there! X

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No Hun I think it's deffo relate to the csf leak

We're all the same 😰

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It is rubbish. Really hoping something positive comes from ent specialist .

Maybe just try the anti anxiety strategies - even if physical symptoms are caused by something physical they are horrible so anything that reduces stress levels will help x

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So fed up today back to crying again

Sick of feeling light headed

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Big big hugs. This illness is horrible. Try to break up the day when you feel like this. Maybe set yourself a task and focus on that?

i know I've asked you before probably but forgotten, do you do any exercise? If not really give something a go - running, swimming, class eg yoga etc. I can't even begin to describe how much that helped me with some of the symptoms especially the foggy headedness - really do try it x

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I haven't got time to exercise with having the baby

Plus if there's a suspected leak I'm not allowed to 😓

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How are you this evening ? X

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Don't beat yourself up about tying in front of your son. you are in such a difficult place - it's hard to be happy when you feel so rubbish .

When you feel this way do you have someone close to talk to? Just someone being there can make a huge difference to how you feel.

Also go back to Drs - I know meds made you feel bad but there are many alternatives. If you can bear the symptoms it might be worth hanging in in there for a couple of weeks with some support in place . Keep talking x

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Yes that's tough to be without support . There's an organisation called Hone start manned by volunteers who give you weekly visits . I had this organised through my health visitor. The lady was lovely and is basically there to support you however you wish to be supported .

home-start.org.uk

Perhaps this would help? X

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Thanks I'll have a look

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How are you today Lsorsa? X

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Glad you had a good day yesterday - hope the sun is shining today also. Fingers crossed that the ent can help . Did you see kjd291's post? X

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Update: I've been diagnosed by ENT with a rare Syndrome called Mal de Debarquement-most of the doctors I've seen since have never even heard of it.

If anyone else finds this thread looking for answers-feels like their trapped on a rocking boat, but doesn't feel the rocking when they are actually in motion-could bring some answers.

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virtualhypnotherapy.com/sin...

Just read this - it might be of interest x

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My brother has had that after a couple of long haul flights. Are you UK based? If so there's a professor who specialises in it -I can try to get her name.

mdds.org.uk

It must be a relief for you. Have they given you any idea of treatment? My bro found exercise really helped X

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Sadly no-I'm in the US, but stumbled across this group when looking for answers. Here it seems no one treats you for it UNLESS you have it for closer to a year. They're all saying (the ones who've even heard of it) that it will "eventually" go away on its own. Just trying to trust that and keep the anxiety as low as possible cause it just makes it worse.

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My brother had tests incl neurologist and mri scan. It was only when my sister read something in one of the national papers about a woman who had suffered the same. She got in touch with the professor who had done the research but my brother didn't get back to her.

The neurologist suggested some very strong drugs but given that it was pure guess work he didn't take them.

What helped him was running - I'm not quite sure how long but it 'cured' it.

I'm not surprised the dizziness has caused anxiety - it's hard to feel 'normal' when your life is has been affected this way x

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I don't know how your finances stand but maybe look into alternatives. I saw an cranial osteopath which did nothing but found acupuncture very good for my physical symptoms especially the pressure sensation behind my eye. Unfortunately none of those things come cheap....

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Let us know how you get on.

How are you? X

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Will do rocky

I'm still dizzy

Waiting on the dr to get bk from his holiday next week so I can get a meeting

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I am so sorry you are still not feeling well, how can you tell if you spinal leak or not? Could it be caused by epidural? I hope you don't mind that I joined the fb group.

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Yes I am the one who you replied to. I am sorry that your day was bad, I too remember how I was before and I fall into deep sadness, since yesterday I can't stop crying knowing other moms are suffering too without explanation and without knowing how to recover. I know it is very hard what we are going through but crying doesn't make easier for us or for our boys too, the very few months I was in shock that I could not do anything, now even in my worst conditions I function almost like a normal mom and I try to be fun too, no one except me and you can imagine how horrible we feel but our poor boys don't have to suffer with us, and actually I find it to make me feel better when I am able to have some good time with my boys. I wish we were close by I am sure we would have made it easier on each other but we are continents away. Take care and be easy on yourself, I am sure it will pass. Xxx

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Hi there

How r u doing these days! I’m suffering too

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So frustrating for you. Really hope the acupuncture works x

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🙏🏻🙏🏻

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How has today been Lsorsa? It's so hard when all you want is to enjoy your son. Even if you're having a rubbish day just try to put aside even 5 mins at a time and focus on playing with him whilst putting aside all the worries and stress x

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Every day I'm struggling rocky I hate what the hospital have done to me it's so unfair

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Big hugs my lovely. I think you need to be referred back to hospital to see why the patch hasnt worked and what they'll do next.

Maybe give the antidepressants another go?

I so remember struggling like you are - please don't lose hopex

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Who are pals? Really hope you get answers.

Re antids, there are many types. It's common for ladies to have to try and few before they find one that works. I know that having tried one that didn't agree is off putting, but you might find talking to dr beneficial about this.

How was your weekend? X

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I'm very resilient to meds as it is so even the low dose does me in and having two children I can't be like a zombie

Pals is patient leasion who deal with complaints

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I'm so pleased you have someone on your side. In my opinion you need to have a plan in place they can't just 'dump' you. I dealt with an advocacy group once and found them to be very good so I hope you get answers.

Do you have a health visitor? Are you getting any support from her? I think support for you is also important at this time x

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How are you doing ? X

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Same rocky although yesterday I felt good

Today brain fog n sore ears again x

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Maybe keep a diary - you might notice triggers or a pattern ? Frustrating for you - hugs X

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I know I was thinking that xx

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You might find things like pmt, stress, colds etc make things worse but at least you will have an idea of maybe what to avoid etc. X

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Yeah will let u know

Pm me on Facebook

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How are you? Hope you're feeling better in yourself and as a consequence the physical symptoms have died down x

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How are you all doing? Any good news?

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