Occipital neuralgia

[mustard]

Hi all,

Just wondering if anyone has any experience of this, and if they do, anything that helped it? (Particularly things a pregnant person can use!)

 

I've had this pain for about 6weeks and hadn't thought it was MS related, was getting to end of my tether and decided to go to GP , but had a quick google first, only to quickly discover my symptoms fit occipital neuralgia to a tee.

 

It's incredibly painful, and is becoming increasingly debilitating as when it comes on (as it does daily) I can't concentrate or read, or do anything of any value, and as it keeps happening badly when I'm in classes, it is becoming a real issue.

 

Just bending to get something out the fridge causes intense pain and black spots in my eyes, it's really starting to get to me.

 

I also had two days this week where my tongue and lips where numb/pins and needles, plus my walking and bladder have been playing up, so am now suspecting a small relapse.

I don't want to ring the MS nurse though because if they get a whiff of MS activity they will whack my pregnancy up to high risk, meaning I won't be allowed to use the birth centre. Obviously if I feel my ability to give birth will be affected I'd say something, but at the moment I don't feel that way, so don't want to involve medical people.

 

Any ideas, at all, would be greatly appreciated!

 

 

 

 

 

 

[Scully]

Hello Mustard,

 

Not had occipital Neuralgia, but have recently had Trigeminal Neuralgia, which affects the side of the face, plus the upper and lower jaw. Now, I'm pretty good with pain, and tough it out a lot, BUT, the TN pain is really something else entirely!

 

At its peak, I was having about 50 attacks a day. Until the GP increased my dose of Gabapentin to 2100 a day.....I've reduced it now, and it seems to have cleared off on its own, but I'm told it will return unfortunately.

 

I'm not at all sure on what meds one can safely take during pregnancy. Drugs that are specifically for neuropathic pain are the only ones that will work I guess, so you can only ask which ones are safe to take.

 

So sorry you are suffering right now, I do understand that you don't want to change your birthing plans though.

 

Scully

x

[Christina]

I had it a couple of years go, shooting pain up the back of my head, just on one side. I managed it without taking anything , but it was only happening a few times a day, and then disappeared after a few weeks. It certainly is a horrible pain! Otherwise the pregnancy is going well?

[mustard]

Thanks you two. I have booked a massage with a physio but it isn't until the 6th. Still, since realising what it is, it's been better as been able to avoid things that I know aggravate it, like bending forwards to read and stuff.

I had a really active day yesterday and the pain wasn't even there all day, a miracle! I was in low lit pubs all evening, so that helped I think (the low lighting, the pub part not essential for pain management!) but now it is bad again as every time I go to sleep it aggravates it. Sleeping on my back tends to be the best, but I won't be able to do that for much longer with this growing bump, but sleeping on either side is agony.

If anyone has any tips on how best to sleep without angering the occipital nerve I'd be very grateful!

 

Chris- pregnancy is all good thanks hun, had the 20week scan last week, perfect little bubba. I was a bit worried as consultant had said slight risk of structural problems from having taken pregabalin during first few weeks, but that they'd be picked up at the scan if there was any, so when all was good I did breathe a huge sigh of relief!