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[pamabz]

Hello everyone,
I'm just wondering if anyone has any experience with trigeminal neuralgia and the menopause, is there any evidence to show they could be linked?
I turned 50 tail end of last year and was happily going about life (those were the days!).  Then New Year hit and I noticed pins and needles in my chin, left side only.  That discovery then progressed to extreme numbness and pins and needles in my arms, hands, legs and feet initially and then my whole body.  Whilst waiting to get MRI scans, burning mouth syndrome then made its appearance, words cannot describe how miserable that is, and then just before I was going on holiday, I developed pain in my face, again the left side.
Long story short, I've seen numerous specialists the last 9 months to rule various things out and my end result has been vitamin deficiency, the menopause and more recently, a neurologist confirming a likely diagnosis of Atypical Trigeminal Neuralgia   
I'm pretty despondent about the diagnosis as I'd read about TN previously and it's scary stuff.  I'm trying to stay positive and tell myself that it can go into remission but the alternative (full blown TN) also preys on my mind pretty much every day.
Please, does anyone have any experience of this and give me some words of wisdom on the subject?  I can't help thinking it's so strange that everything seems to have hit me all at once, hence my train of thought but then again it could be sheer coincidence and I'm speaking complete hee haw 
Thank you in advance for any comments. X

[ali 61]

Hello pamabz
My ex-partner(still a close friend) has Trigeminal Neuralgia (T.N) He has had it for nearly 5 years. So I researched it a LOT, and have seen him with it daily.

He has never had numbness or pins and needles. And I have never heard of anybody starting that way from all the numerous forums etc I joined.

Everybody ALWAYS says that they "remember the very 1st time the TN hit them". It is described as a huge electric shock through their face and teeth. 90% of people go to the dentist initially, insisting they have broken a tooth or have an exposed nerve.

He has had MRI scans and been under the care of a top T.N specialist in Sheffield and the trigeminal nerve can clearly be seen, wrapped around a vein.

Of course I absolutely do not wish to say that your neurologist is wrong. He is the professional. But in all my research I cant find any indication of atypical TN  presenting with your symptoms. Certainly TN does not have anything at all to do with pins and needles in arms, hands, legs and feet. The trigeminal nerve governs the face/head area only.

I have  a HUGE T.N book. I shall have a look later and see if there is anything about pins and needles/numbness in it. But until then, please dont panic. To me, having researched this and "lived" with his daily symptoms for 5 years.....I would be astounded if TN was your problem. Anything below the neck is NOT governed by the Trigeminal Nerve.  I shall read my book, again, and get back to you. xx

[pamabz]

Hello Ali,
Thank you so much for replying to me, and giving me so much information to digest, I really appreciate your response.  I'm so sorry, I think I might have misled you with all my symptoms, I tried to keep it brief (as I've had loads of weird stuff happen to me this year) but I know the pins and needles and burning in my body is not the trigeminal nerve, this I have put down to the menopause.  But, I am having problems with my face, which is separate to the body stuff and weirdly how it all started.
I started off with pins and needles in my chin, left side and that was my only symptom on this for quite a few months.  9 months on I still have the pins and needles in my chin, and this has spread from a small part of the chin to the whole chin and up to my lower lip.  It can get a bit achy from time to time but it has constant sensation in it and is sensitive to touch, I can only describe it as pins and needles when I run my fingers over it (sorry, it's really hard to describe and I can't seem to find the words! )
I saw a Neurologist in April, and he thought he saw a very faint image of "potentially" a blood vessel pressing on the TN but said it would probably never develop into anything and sent me away with Amiltriptyline which was supposed to stop the chin sensation in a couple of weeks.  Used the meds for 3 months, no change apart from aggravating the blooming BMS I think!
Since then, around 6 weeks ago (still with weird chin sensation) I started getting pain in my face....along the cheek bone, down into my upper lip, up my left nostril, sometimes in my ear, etc and I've been aware of that every day since.  Mostly an ache, with the odd sharp electric type shock.
I'm now on a round of Pregabalin as I can't tolerate cabermazapine, week 5 of the meds and no change yet but I'm slowly building them up.  I hate being on these drugs but I shall try them for a while at least to see if they work.
The pain is not searing, I can still function daily, get up, go to work and in all honesty, it's more of an annoyance just now than debilitating.  I saw a second Neurologist last Friday as I was also on the NHS waitlist, gave him my symptoms and a disc of my MRI scans, and he said he thought it likely it was Atypical neuralgia but they would check my scans and get back to me.  He also told me there are different spectrums so my symptoms might not get any worse perhaps?
I'm sorry for the long rambling message but I have so many questions... for what I have read about TN, most of the time it comes on suddenly, it's extremely painful and it's sharp, electric shocks but the Neurologist also said it could build slowly so I don't know.
Ali, I would love your input in this, having first hand experience of this.  My heart goes out to everyone suffering from this illness, at its worse I've read it can be life changing.
I promise I won't panic  and I look forward to hearing from you again.
Thank you Ali xx

[ali 61]

Ok Thank you for clarifying your symptoms,Pam. Obviously that changes things, realising that you know the pins and needles below the neck are NOT linked to your facial pain.

1st lets deal with the Burning Mouth Syndrome. (Which is in my TN book)

I shall copy the paragraph that will interest you:

" BMS primarily affects post-menopausal women. This is primarily thought to be due to the lack of oestrogen. It may also be deficiencies of Vit B12, iron and folic acid.
The good news is that in 75% of cases this condition goes away on its own.
Some people get relief from anti-depressants or anticonvulsants."

So it does seem that the menopause MAY have brought BMS on for you, but the meds you are on should help it. Possibly HRT to boost oestrogen would help too? But it does seem to be something that will go away eventually.

Now lets deal with what I read about "atypical TN" for you.
Yes, it can present as more constant, throbbing, burning, aching or sensitive feeling.
(Typical TN always presents as electric shocks)
However the pain in your cheek bone,lips, nose and ear can all be governed by different branches of the T.nerve. (There are 3 different branches, hence the name Tri-geminal)
Pins and needles is not common at all. Its mainly dull, throbbing, stabbing..but that doesnt mean it wouldnt cause pins and needles. Just that its quite rare. The odd sensation you describe...would you say it feels like pins and needles...or how about the feeling when you have been stung by a stinging nettle...or when you have had a numbing injection at the dentists? I know its hard to describe..my partner found it difficult too.

The Neuro who said he "thought he saw a faint image etc" may not have been a TN specialist. We had to search for ages to find one in Sheffield.
Doesnt mean he is wrong...just that I dont think you should dwell on that at all.

My partner tried Amitriptylene too, and it didnt help.
He is on a combination of Pregabalin and Carbermazapine, and that works for him. But he has Typical TN, tolerates all meds very well and is a big strong man!! If just Pregabalin works for you, then thats the way to go. Everybody is different.

Now heres the part I feel you need to hear.
TN and also atypical TN will come and go. Some people do go on to have it for life (like my ex-partner) But even for him there are operations and medications available. And his comes on for a few months then disappears, then comes back.  Many many people have episodes that come and go and never get any worse. There is no evidence that it is linked to the Menopause at all. But stress has been shown to make it worse, and I know for a fact that when my ex is stressed it gets worse. So thats something for you to consider.

But you definitely do NOT have Typical TN. That is ALWAYS electric shocks that are CONSTANT.
The 2nd neuro that you saw on Friday is correct. The vast majority of patients symptoms never get any worse and are entirely manageable. Our TN specialist that we spent many hours with explained all this to us both. The amount of people who become serious and need operations is in the minority...which is why there are so few TN specialists.

Now, this of course still does NOT mean that I am saying you have TN. TN is actually diagnosed either by a very clear MRI scan of a constricted nerve or vein...or it is diagnosed simply because everything else has been ruled out.
You wrote that "at its worse it can be life-changing".
Well my ex has it "at its worse". The specialist offered an op, but he decided to say No to that. Yet the meds make it manageable and he runs his own (very physical) business and he has a perfectly happy life.
Do NOT blow this up out of all proportion. You will drive yourself crazy.
IF IF IF you have atypical TN....it will come and go, it is made better with the right meds,  and lack of stress will help too.
Try and stick with the meds offered. They do take a while to kick in and to find the correct dosage too.

Also, bear in mind that you may NOT have atypical Trigeminal Neuralgia.
There is another very very similar problem called "atypical Facial Neuralgia."
This is aggravated by an inflammation of the nerves. (Brought on by many different reasons ie Dentistry, trauma, nerve damage, viruses etc etc)
This is much much less severe and will clear up eventually once the inflammation has gone. But that may take quite a while.Meanwhile the meds will help.

I hope all this makes sense? I am here if you have any other questions at all. I really dont mind at all. And after going thru this for the past 5 years, I will always be happy to answer any more questions....so long as I am able to. if I dont know the answer...I'll tell you I dont know.
If you dont want to put it on the main Forum...just send me a Private Message.

Please keep in touch. Now go and relax and get rid of as much stress as you can. xxx

[pamabz]

Dear Ali,
I can't thank you enough for taking the time to go back to your TN book and sending me a very detailed reply, whilst saying the right words to put my mind at rest on something that has been worrying me for some time.
I read your reply back to me last night and between your kind and comforting words, and DIY SOS on the TV, I was in tears... I'm a bit of a softie lol...
I shall most certainly PM you if you don't mind, when I have a wee bit more time and also when I work out how to do it! lol...
But for now, thank you again, you have helped me so much Ali.  Your ex-partner must be very thankful he still has you in his life.
Speak soon. xxx   

[CLKD]

Neuralgia didn't cause pins and needles for me.  It was sudden.  So painful and sharp that I dropped to the ground, I bet those watching me when I was walking the dog thought that I was drunk  .  Amitryptaline didn't make any difference.  I dreaded the next attack. 

The nerve comes from the brain into the front of the face.  If that nerve is crushed by a blood vessel which runs over it, it causes intense, sudden pain.  That nerve can be released.  The Surgeon goes in from behind, so the patient is operated on, face down.  The blood vessel is cut and tied in allowing the nerve to work properly.

My Aunt had pain for years, initially the Surgeon did an injection into the area at the back of the head to see if it eased symptoms.  It did so she underwent this procedure twice.  It relieved the pain instantly.  It lasted for 15 years initially.

Going to read through the replies later ;-).

[pamabz]

Hello CLKD,
Thank you for sharing your story with me  You must have got such a shock when the TN hit you out of the blue, I'm guessing yours has now gone into remission and you're doing OK now?  What a brave and strong woman your Aunt is, going through years of pain and then 2 surgeries, I'm glad to hear she enjoyed a long period of relief following the surgery, that's the outcome everyone hopes for.
I can't be sure for certain but looking back I think I had Occipital Neuralgia 4 years ago... I was on holiday with my family at the time, and woke up one day to searing pain in the back of my head, it came on all of a sudden and out of nowhere.  The pain was crazy, it radiated on and off the last few days of my holiday and I had 3 homebound flights to look forward to.  Doctor diagnosed me with muscular pain when I got back, it was awful.. it would wake me up in the middle of the night and then stab me on and off all day at work.  It took months to settle down but thankfully it did go away.  I still get the odd niggle now but a massage to the back of the head usually settles it.
When a Doctor told me he thought I had TN at the start of this year, I checked the symptoms and realized that they described the pain I experienced in the back of my head 4 years earlier!
It sure is a crazy world we live in.... have a good day x
 

[CLKD]

It was a shock. In the 1990s. I dreaded the next stabbing episode.  It went as it has arrived: without warning.  After 3-5 months.

There are a few UK Surgeons who do this operation.  My Aunt suffered for 20 years prior to being referred to London because it was such a rare solution.  Initially she had an injection to make sure that it was the nerve causing pain and to see how long the effect lasted.  She then had surgery as I said.  Very scary. But hugely beneficial and I would have had no hesitation of opting myself.

3 years ago I had intensive dental work, preparing for an implant.  Too young and too vain for a plate  .  It took several weeks 2 realise that the activity around the area had caused the neuralgia to be bothersome, once the jaw recovered from the prodding etc. the pain episodes settled.  My Dentist was flummoxed but we now know it's one more issue to be aware of.

Let us know how you get on.  I too have a feeling of 'numbness' in various parts of my body  right now it's my lower L chin and lips.  No particular reason.  This too will pass.

My Uncle suffered for years but was never referred for a consult regarding surgical intervention.


Ali 61 

[Kate49]

Hi Pam , I not sure you will read this so I wont go into detail unless you reply back, it's to do with your neuralgia problem, thanks , Kate

[CLKD]

Thread is 12 months old but your knowledge might help others?   My face has been painful in recent weeks