This is my first post. My wife was diagnosed seven years ago with SPMS and has been getting steadily worse since then. All the usual things; twitching limbs, brain fog and a whole catalogue of neuropathic pains.
For the last six months or so she has been experiencing pains in the left side of her face and both the MS nurse and GP tell her that this is Trigeminal Neuralgia. She is on a huge cocktail of meds including including morphine, Paracetamol and Carbazazepine but really there is not much improvement and the brain fog and confusion is getting worse.
My reason for writing is this: have any other sufferers noticed the pains get worse, a lot worse, around the time of the full moon? At the time of a new moon my wife seems to manage the pain reasonably well but around about a week before the moon is full the TN pains get worse and worse until she is barely able to speak or eat. Sometimes the pain is so intense she has gone into shock with it. About five or six days after the full moon the pain will then start to ease. I also noticed even before the onset of TN that her other symptoms would worsen at the full moon and this has been going on for a couple of years now or even longer.
Before you write me off as a crank, which the medical people have, let me tell you that I am retired, deeply in love with my wife and at her side 24/7. I am very certain of my observations. Do you think there is anybody else out there who has noticed this phenomenom and more importantly is it ever likely that the wonderful [sic] world of medical science will pay attention to this and try to give my poor wife [and myself] some hope of relief?
You will find that no lesser a naturalist than Sir David Attenborough has witnessed and recorded what transformation the phases of the moon can do. Regrettably medical science has not caught up with natural history.
I have had TN and although mine was unrelated to MS I do understand how all-encompassing the pain is and how distressing it must be for both of you.
If you feel that you have explored all the medication options ask your GP for a referral to a pain specialist. there are a number of procedures used to treat trigeminal neuralgia, so you’ll need to discuss the potential benefits and risks of each one with your specialist before making a decision.
I hope your wife, and yourself, find relief from this terrible pain very soon.
stranger things have happened, the moon effects the tides and other things so you never know
but Paracetamol will do nothing for TN pain, pointless taking it for that nerve pain. might help any muscle pain but do nothing to help the TN pain really since its pain from a nerve all down your face.
i had horrible pain from TN but the nerves were severed from TMJ surgery so thankfully I only get pain when the nerve is trying to “fix” itself (which it might never do completely) my face is sort of numb all the time but I can deal with that over the pain
I’m posting anonymously for obvious reasons. Many years ago my mum was a councillor and there was a lady who called at her door to say very, very angrily that she was taking a “fatwa” out on her (she had some issue with housing). My dad was very concerned and they asked the police for advice. Amazingly they said they encountered an awful lot of people affected by full moons and as there was one due to take enormous care and not answer the door to that lady. Unbelievable but the human body is obviously affected in many ways by the moon. What can be done to counteract that I’m afraid I haven’t a clue.
Has she ever been checked for Lymes? I know right. something else.
I have a co infection of Lymes which showed on blood tests sent to USA called Erichliosis.
When there is a full moon I have symptoms flare up, pain like shingles around my back, weird lesion type scratches which really hurt then itch like crazy (like shingles) around the same area. I have a weird sort of flare feeling off and burning urine. Its EVERY full moon. It can make any pain worse for me.
Never thought it was down to my MS just my Lymes maybe its down to both then.
Going back thirty years or more when this ms was just starting I only had symtoms at around full moon for about days in every cycle even yet my best days are from new moon onwards I always intended studying the moon and it’s pathways but somthing has stopped me .
I should have said that this is the second time that my wife has had TN. She had it in the other side of her face starting about 25 years ago. And yes she was referred to a pain clinic who eventually arranged a huge and dangerous operation to relieve pressure on a nerve behind her right ear. That was twenty years ago and she is now 72. As you can imagine, at her time of life and with SPMS there is no way she wants to endure the stress of that procedure or any other right now.
Sorry, Faula, I didn’t intend to suggest that the Paracetamol was for the TN. In fact she takes them to reinforce the morphine she is taking for all the other pains.
That’s interesting about Lymes disease, especially that you get a flare up at the full moon. It does show that the moon has more of an effect on our bodies than people realise.
I wonder how one finds out if any research is being done into the effect of the moon on our health. And if not where does one go to find a researcher willing to start the ball rolling.
I found lots of research on the Internet about it.
Funny enough Peter I never connected the moon with the flares etc, it was my care worker who joined the dots up. Without me knowing it she was logging the times I was having these weird flares and lesions around my back and the pain was bad I can tell you and i ached.
It was a good year actually before she suddenly mentioned it after a really bad “do”. She said you do realise that its always on a full moon you have issues. She showed me her diary she had written.
I did speak to my GP about it as I had been to her about my weird lesion type things she was convinced it was shingles.
I had been to Breakspear clinic and seen dr munro about my illness as it took so long to get diangosed and she sent off all the bloods to USA.
she said it was down to the co infection and told me I had MS and a co infection of lymes.
when i researched i found a lot of people with the same thing going on, and some had MS too.
there is more information in the USA then UK what a surprise NOT. In the UK the doctors are so behind with Lymes information.
Trouble is with Lymes you can be bitten by a tick and never even know it, so dont even know you have it and if you have MS like we both do mine is progressive it can be hidden within the symptoms.
I am sure i got it from fishing on the lakes as myself and hubby would sit for hours and around us were deers and sheep prime tick country.
I would somehow doubt there is any Lymes going on for my wife as we haven’t been to ‘tick’ country for years. She just hasn’t been well enough to travel.
Interesting that there were sheep at your fishing lake as some research is going on at Exeter University as to whether sheep might carry a toxin which causes MS. A very small scale study at the moment but who knows?
Interesting topic. To gain research and publicity, you could try speaking to the Daily Newspapers or local t.v. They may be keen for a feature and possibly more people will call in relating to similar experiences. They’ll contact appropriate experts.
The moon does affect a lot, inculuding people’s moods. My father in law was seriously affected. He became a bitter, nasty man. Menacing towards my lovely Mum in law! Never physically hurt her but the mental torture was horrific. His whole personality changed, just for a few days.
I understand the frontal temporal lobes in our brain, control our mood, behaviour, temper etc. So if the moon can affect some peoples brain like that, then it’s feasible the moon can affect some people’s brain messages of pain as well.
Did you know that you can have chronic lymes for like years and years hun. I know of two of my friends who had it for over 20 years in the states and still suffer with after affects even though they had antibiotics at the time.
If i got it from fishing last time I went was about 15 years ago. Its a tough one. I never knew i had it, but the blood test results came back with it lol was a bit of a shock.
There are a lot of people with Lymes who never know they have it, as it can start like flu.
trouble is when it goes chronic you cant really do much with it.
but yes definately sheep where i was fishing.
At the clinic they also found I had epstein barr virus at one point and the titers for it were showing >95 which is madness as when its latent and gone it should be <5. They believe that EBV is a trigger to MS too.
Weirdly mono and lymes are similar in symptoms.
It often makes me wonder just what we have running around our bodies lol. xx
I lived abroad in hot countries for years and years so coudl have picked up anything.
I really do think the full moon affects us, my Dad always went into a foul mood when it was a full moon, we used to joke about it, and now my granddaughter who has autism never sleeps when it’s a full moon.
An interesting notion, Peter.
We are just coming up to the second full moon in a month, and my muscle spasms are very bad for the second time in a month. Not enough data to be sure of anything, but when my Baclofen dosage has been increased over the same period (without any beneficial effect) you have started me thinking about record keeping on this topic.
The moon is very powerful. It’s gravity pulls our oceans and keeps the Earth on its axis. One wonders what this energy does to our bodies and our brains.