Neuralgia

[Orangesandlemons77]

Just been diagnosed with this post shingles. Had it for years but only recently been diagnosed.

Anyone with the same diagnosis and how do you manage it?

I've been prescribed 75mg Pregabalin twice a day and 30/100 Co-codomol as needed for pain.

I have benenden insurance which would hopefully cover a referral if required, neurology?

But unsure if it would 'add much' as the GPs say.

I'm on pegabalin too for mine (lyrica brand name). 75mg 3x a day. Seems to help, in that I haven't had severe pain since I started on it about a year ago. Good luck, it's not much fun is it?

It's not nice, but I am glad they recognised it. I also have depression prior to thins and worried they might dismiss the pain but they haven't.

I can still take my fluoxetine along with the pregabalin and also co-codomol. I will be high as a kite.

Good luck to you too

I'm taking 75mg pregabalin twice daily - but may ask for 3 times a day as it seems to wear off after a bit.

I'm wondering whether with time a referral to a Neurologist may be helpful, as I have some wierd numbness and difficulty in my arm as well after shingles.

Also have lots of pain post surgery which is from adhesions.

Anyone know if this would be worth it? I have insurance so could use that.

Just using this as a bit of a diary so I can see how things are going with pain meds. Might help others also.

Have taken first pregabalin 75mg at around 7am. By 10am getting a bit of pain starting so I have taken 2X 30/100 co-codamol which seems to have helped.

Will see how it goes. Feeling Ok not too woozy but a bit tired, to be expected post shingles though.

12.30 and pain starting to niggle again. I'll take some more co-codomol. Not supposed to take more pregabalin until tea time.

If it is nerve pain the cocodamol is pointless. It doesn't respond to it.
A referral to neurology might be useful.
As would be advice re the dosage of your pregabalin. An initial dose is not always the right dose and my neuralgia (TN) only reduced when I got to a particular dosage. I had been told what and how I could raise my dose until I was pain free.

I suffered with it for about ten years. I had diazepam for really bad flare ups

Thanks, yes the GP said something similar, we are just starting out with it. Glad you got to the stage of being pain free.

Do you think referral to neurology is helpful? I could probably request this as I have insurance which would cover it. I'm unsure what else they could offer though?

I'm sorry to hear that. hope it improved.

I had a neuro referral. Slightly different for TN in that they sorted a lumbar puncture and an MRI to rule out some causes that wont apply to your neuralgia I think.
They were good for being in the know about the meds on offer and how to manage them and get good relief. But if you trust your gp then maybe it isnt needed.
Hope you get good relief with what you have been given.

Thanks. Oh that sounds quite a lot to go through, but hopefully it gave you some answers.

Yes with mine we kind of know what is going on as it is after Shingles. I suppose it is called post-herpetic neuralgia, although they have said neuralgia in my notes.

And I know my other pain is from adhesions post surgery, as they have caused obstructions in the bowel and during the surgery they saw it all.

I hope things are going ok for you now. It is not an easy thing at all

I've asked at the GPs about taking it three times a day (pregabalin) as it is wearing off after about 4 hrs. Cocodomol not really helping.

Wee bit annoyed as they suggested this being fine for a few days then trying to get back to twice a day 'due to risk of addiction'

I'm not craving more of it though just using for the pain.

It was a nurse rang back, maybe I will try and speak to the actual GP in future.

It was that thing where they call you back the same day and you don't get to choose, however there are pre-book appts sometimes available too.

The GP I spoke to previously seemed more positive about it and said about up to 300mg a day (I suppose that would be 3 X 100?)

I agree it's odd to talk about lowering the dose again. It's usual to have to start on a low dose, then slowly raise it. And there's a cumulative effect, in that it can work better once you've been on it for a few weeks.

It was a nurse who said that and I am just starting them. Her concerns seems to be about it being addictive / hard to come off of.

Athough when I check my online GP record she has quoted something like the NICE guidance which states about 3 times a day being OK and also upping the dose.

Maybe it is also as they think I am using it for an acute pain after shingles which may improve so cutting it down might allow me to see if the pain has improved between doses.

I can make a phone appt with the other doctor I saw who was more n the side of titrating up the dose so that might be an option, rather than a same day call where they seem to triage to a nurse first.

OK so i messaged the GP via online prescriptions service and have now got 150mg 3 times daily, which seems to be better, I also have the co-codomol to use as and when needed.

Feeling quite woozy, still getting weakness / numbness in my right hand and right hand and arm are painful but a bit better with the meds.

Any advice from those with a similar problem - is any referral useful e.g neurology or ENT for the ear pain and tinnitus?

I'm going for a free hearing test in a few months to see how that is affected. Give it some time to settle down

Other thing happening is GP is going to test for e.g vitamin D, ferritin to see if any underlying things might be causing the repeated shingles outbreaks.

Then going to check hormones / perimenopause.

I noticed online there is a link with hormone changes at perimenopause and shingles.