Showing posts with label facial pain. Show all posts
Showing posts with label facial pain. Show all posts

Friday, March 21, 2014

What's Worse Than Spam?

I once wrote a blog post about how much I hate spam. Well, there is something else I really hate even more than spam. Can look a bit like spam, even sounds like spam....but it is worse than spam.




The internet must be like a playground to scammers. Some of them are very clever. They do their research, find the right audience and find a weak point. Then they prey...

People with illnesses and disabilities are often that target audience. We have a weak point....we don't want to be ill or have a disability. We want a cure, we want to get better, we will try almost anything. So the scammers throw us a line and reel us in.

Whether they try to sell us supplements with amazing claims that they will cure nerve pain, or some new fangled machine which will do wonders for our painful bodies, they shout out one word : SCAM

Their websites normally have testimonials written by "clients"......in actual fact, those testimonials are often made up by the company.

When we started our Trigeminal Neuralgia awareness page, a young woman came onto the page and said she used a certain (very expensive) supplement and her TN was cured. She claimed to have lots of friends with TN, and they used the supplement too, and they were all cured. Amazing! Truth was that she didn't even know what Trigeminal Neuralgia was, and she knew nobody with the condition. She eventually admitted to me that the testimonials on the website were all fake. Every single one. She was trying to make some extra money by generating business. She came to the wrong awareness page that day.

I am not suggesting that all supplements are made by companies who prey on vulnerable people. Some supplements are good, and some may help things like nerve pain. But, people should check the company out, and ask doctors or pharmacists if they are safe to take, especially when taking other meds. Some herbal supplements can interfere with many meds, so it is always best to be safe.

Something else I came across this week is a clinic using laser therapy. Their website claims that their laser therapy will cure Trigeminal Neuralgia.

  • Proof that their therapy can cure TN is in the testimonials. (Yes, the testimonials which they have possibly made up)
  • They claim their laser is ten times stronger than an other laser. (I'm not sure if this is good or bad)
  • If you have medical insurance, it will not cover laser treatment.
  • If you want to know how much this laser therapy costs, they will not tell you until you have a consultation.
  • They say that you will normally have two thirty minute treatments per day possibly over three weeks. (Surely they should be able to give a price if it is a set length of time for a session)
  • They say it is a cure for TN, yet they say that if it does not work the first time, you can have another round of treatments for half price. (That would be if you have any money left after the first round of treatments)
  • Oh, and you can enjoy the area and stay in a lovely hotel while you are there. (The hotels in the area must love this clinic)

I have seen people ask about this laser therapy....people with TN see that word CURE and think it could change their lives. TN isn't just about pain, it can ruin people's lives. They become desperate for a cure. They use their savings, take out loans, sell their possessions.....they would pay anything for a cure.

Except, this doesn't seem to be curing those people. People have lost thousands of dollars, pinning their hopes on being pain free, but after the treatment, they have the same pain (sometimes worse), and empty bank books.

I don't know enough about laser therapy to know whether or not it can actually help anyone. It may help some people. My husband told me last night that someone he knows had accidentally left his laser torch switch on. It burnt a hole in the wooden table. So I don't think I would like to try laser therapy, especially with the knowledge that their laser is ten times stronger than any other.

I know that there are no real cures out there for Trigeminal Neuralgia. The Facial Pain Research Foundation is trying to find a cure, and we can rest assured that when they do, it will go through the correct channels of being tested etc before it reaches us.

I really hate knowing that people are out their trying to take advantage of people who live with illness and disabilities. Scammers are the lowest of the low, they prey on vulnerable people. They give people hope, they take their money, but they do not cure people.

When we see the word "cure" on an advert or website, we all need to be very cautious. Ask questions, ask doctors, look out for one another.....we need to ensure that people are not taken in by those false claims.


Friday, September 20, 2013

A Spoonful of Sugar Helps the Medicine go down....

A couple of days ago I came across an article in the Daily Mail....a health expert has been doing studies and came to the conclusion that sugar is bad for us. Duh! Think we all know it's not the best thing for us, but, in moderation I'm sure it's ok.

But, why are health experts doing studies on things like this?
And, why are newspapers writing about them?

There are countless illnesses and conditions which are forgotten about.

Where are the health experts? Off discussing how bad a mars bar is for you?
Where are the Newspapers? The television and radio news?

There are no statistics about Trigeminal Neuralgia. And no cure.

Our stories are obviously not interesting enough for the media. Stories of children living with this constant pain, stories of people being imprisoned in there homes because of the pain, stories of people losing their jobs, their homes, their partners....their lives.

Why is it that the only people fighting for awareness are the sufferers and carers themselves?

I have written countless letters to newspapers, tv & radio, but get no reply. But after seeing that story about the dangers of sugar, I wrote a letter to the newspaper saying more or less what I said above. I did get a reply saying it was being passed on to the Editor. I don't think for a minute that it will make anyone publish a story about Trigeminal Neuralgia, but at least the letter was read...and who knows.

But if any of you come across stories like that, and you say, that's ridiculous.....they write about that, but don't bother with TN or other serious, but not talked about condition.....write to them. Tell them.

And if anyone is interested in the article about sugar....it's here
And, if you are interested in writing to the Daily Mail with a similar message, you'll find the email address here 
 
 

Wednesday, January 30, 2013

Good Pain

I often say that sometimes I get "good pain" and people look at me strangely. How can pain ever be good?

Well, I believe it can.

Certain things can cause me to have more pain than usual. Like going out in the cold. Like brushing my teeth. Like eating some foods. Obviously those things don't give good pain. Far from it.

Talking causes pain sometimes. Singing causes pain (not just for me!) And laughing causes pain. Those things cause what I call "good pain" Especially the laughing. I call it good pain because I did enjoy the activity at the time, and I knew at the time that I would end up being more painful, but sometimes the pain is just worth it.
Yesterday we went out visiting the family for the first time this year. One of my nieces is staying with my Dad for a couple of weeks with her little girl. This little girl is four and an absolute bundle of fun. She just doesn't stop. I wish I had a tiny bit of her energy. She had us laughing non-stop and we had such a good day. So I laughed non-stop, and yes, I felt the pain a lot then and a lot today, but it was so worth it. Definitely "good pain".

So if someone ever tells they get good pain, please don't look at them strangely. They've possibly discovered that sometimes pain is worth it.




Friday, January 04, 2013

I am a bit slow off the mark here, but I want to wish all of you a very happy new year. 
 I hope you all managed to enjoy the Christmas and New Year celebrations.

The week between Christmas and New Year, proved to be a crazy one for me. I had to increase my tegretol about three weeks before and fortunately, I had no adverse effects.

Obviously they decided to build up in my system for three weeks and then they hit me. And they really did hit me.


I had been feeling kind of “off” all day. This in itself was nothing unusual. I get days like this often. I call them my “side effect” days. Just a general horrible feeling which I find hard to describe and I put them down to the meds I’m on.

However, I went to bed early, slept on and off, then got up through the night to go to the loo. I felt a bit staggery when I got out of bed....again nothing that unusual. However, the staggering went to full scale balance loss. The place was spinning and I think I bounced off of everything in sight, eventually catching my leg on something which led me to fall into a heap on the floor.


Ian (yet again, poor man!) came running and picked me up and got me into a chair. He had thought that I had done my usual and tripped over something. But when I tried to explain that I was so dizzy, I found my voice had gone strange too.
 

When I did get back to bed, I think I lay their so rigidly, to try to stop the spinning, but I never slept a wink. Nor did Ian. I have to say I didn’t even think about the increase in my meds. I was scared.....I actually thought there was something seriously wrong with me. It was Ian who suggested that it may be a side effect and sure enough, on checking, it is listed there for higher doses. So dose back down, pain back up. Eventually, no more dizziness, but a few bruises to show for it all.



Oh, these meds.....so horrible having to take them. But I don’t know how I’d cope without without them.


Anyway I hope 2013 is better to everyone.




Monday, November 26, 2012

My Invisible Friend

It struck me this morning (literally, right across my cheekbone), that TN is like having an invisible friend. Except it's not really much of a friend.......more like an enemy.

It is there with me all the time. Wakes up with me. Goes to sleep with me. It comes with me to clean my teeth and absolutely hates me doing that and tells me so in no uncertain terms.

Actually, it's with me all the time. I even feed it with it's own special diet. Oh, it just loves those tegretol tablets. Cymbalta aren't so bad either. The amitriptyline.....well I don't think it's so keen on them. But I force them down anyway, despite the choking. My friend must cost the NHS a fortune.

I'm really getting a wee bit fed up of having this invisible friend. I try to be nice to it. I actually try my best to look after it. I don't treat it badly. So I don't know why it's being so nasty to me.

I am not wishing it to go visit anyone else, but I would like it to go away somewhere far away and not come back.

Maybe the next time they send an aircraft up on a mission to investigate Mars, they could take everyone's TN with them.....and leave it there.






Monday, November 19, 2012

Pain??? What pain????

I try hard to ignore it. I have had a lot of practice over the years and I will never stop trying.

Ok, so I don’t ignore it 100% It’s not possible. I am on a lot of medication for it, so obviously I have had to come out and admit to it time and time again, rather than suffer in silence.

But I have always tried my hardest not to talk too much about the pain. I may have had the odd day here and there when I have slipped up and did have a right good old moan, but I really have tried not to. And I have my reasons.

Well, just one reason actually. Talking about it means thinking about it. And thinking about it means it brings me down. And I don't want to be down.

I suppose it’s like watching surgery on the television. You sit watching, squirming as the knife makes its first cut. It’s easier just to change channels or go make a cup of tea until that part is over. The surgery still took place, but you were able to avoid being affected by it.


If I was to explain, really explain, what my pain is like every day, it would bring me down. It is easier for me to ‘change the channel’ and avoid that. My pain still takes place, I still have to live with it, but this way I don’t get brought down by it.

Anyone who reads my blog must think, “she never stops moaning about the pain she’s in!” Yes......I do.....but my blog is different. You see my blog is my little release valve. The place where I allow myself to moan. My place to moan and in moaning about it, I hopefully help a little bit in raising awareness of Trigeminal Neuralgia. So few people know about this disease. It needs more knowledge. More understanding. More research. More funding.

And today my TN really hurts. Big time. Today I feel like screaming and shouting about this stupid TN, so I will moan about it.

I will moan about feeling as though I have been punched in the face and head by Mike Tyson. I will moan about feeling as though the dentist from Hell is trying to pull some teeth with pliers. I will moan about feeling battered and bruised even although there is not a mark to show for it. I will moan about this horrible relentless pain.

I could also throw in a few extra moans about aches and pains elsewhere, but I won’t bother. I think that’s more than enough moaning for one day.

So.....that’s my moaning session over. That means I am back to being me.....I will not think about it any more, because I cannot let it get me down.

I cannot, and I will not let it get me down.


Monday, November 05, 2012

Looks Can Be Deceiving



For a few days last week, I was certain that every time I looked in the mirror I would see a different face looking back at me. A face all beaten and bruised, with an axe slicing through my head. But it wasn't......it was just the same old me.

Today I expect to see a knitting needle poking into my right eye......but that's not the case. That's how it feels, but there is nothing to show.

But that's Trigeminal Neuralgia for you. One of many Invisible Illnesses. With pain like this, you would expect to have something to show for it. But there is nothing......not a single mark. This kind of pain should be written all over your face for the world to see, but it's not. It's hidden. Invisible.

I have been doing a bit better - still painful, just more bearable.....but then days like these come along and jolt me back to reality.

Oh well, I guess that's life with TN.

Now it's time for wee snooze because that axe is coming back. Maybe it will scare away the knitting needle!





Wednesday, July 11, 2012

TN....The Suicide Disease

Something I have always hated about Trigeminal Neuralgia (other than the pain) is the nickname it has acquired over the years of “The Suicide Disease”.

I always think that it is such a horrible thing for a patient to read when they are newly diagnosed and trying to find more information. It also must be awful for relatives or friends to read. It gives a feeling of hopelessness, a feeling of living the rest of their lives in fear.

It sounds so over-dramatic. But is it?

People do become dragged down by the pain, by the meds and by the life they have to lead due to Trigeminal Neuralgia.

The pain from Trigeminal Neuralgia is supposedly the “worst pain known to mankind”. Many years ago, there were no treatments available, therefore, I am sure that suicide did seem like the only option to sufferers. But nowadays, we do have medications and other treatments, although there is still no perfect solution. The meds are very much trial and error,  and very often, do not give 100% pain relief. And of course, the meds bring a whole bunch of side effects, some of which can be very serious. There are surgical options, but unfortunately, they don’t work for everybody either.

I see it day in and day out on forums - people say that they feel they can’t carry on living like this. They feel so alone with their problem. Some people have no support, no family or friends who are prepared to even try to understand. Many people cannot cope with how the pain alters their lifestyle. Many people become so depressed as they feel that they will never find a way out of this pain filled life. 


I really wish the nickname didn't exist. I think it does nothing but bring fear and place a bigger burden on the shoulders of sufferers and their families.

Still so few people know about trigeminal neuralgia and I think that’s where the problem lies. Even most doctors struggle to understand the condition. Patients with TN are desperate for a time when people do not screw up their face wondering why on earth we complain so much about “a bit of toothache”, why we don’t just go to the dentist, or suggest we take some paracetamol for the headache we “always seem to have”, or even suggest we just get out for some fresh air.

If more people know about the disease, there will be more understanding. And hopefully more understanding means more funding into research. More research hopefully means a cure for this horrible condition.

The TNA,  the Trigeminal Neuralgia Association in the UK, tries to ensure patients get the correct information about meds and treatment, and tries to offer some kind of hope. It tries to raise awareness and it has a support network for patients. There are many forums and websites online doing similar. Through my blog, I am trying to raise awareness of the condition. Other people I know, also write blogs about TN. Some of them are patients, some are the carers. I have listed a few below :

  • Gilly's blog - Gilly's husband developed TN and went through surgery to try to help. I think this is such an important blog, as it shows the side of a loved one, looking on, trying to help, sometimes feeling helpless.
  • Lena's blog - Lena, not only has TN, but other painful conditions which, like TN, have little understanding. 
  • Carol's blog - a lady who has endured TN for over thirty years of suffering, including surgery which has gone wrong. 

In our own small way, we are trying to raise awareness and make people understand, not just about trigeminal neuralgia, but about what it is like to live with the condition.

Maybe one day, there will be more understanding about trigeminal neuralgia.

Maybe one day there will be something better out there which can help this pain.

As sufferers, we need to live in hope of there being something better.

Since you are reading this, then I know that are either a sufferer, or you do already try to understand what it is like to have trigeminal neuralgia. Perhaps you could share what you know with someone who doesn’t, or point them in the direction of the TNA, or even share the links to our blogs. Click the logos below the post to share it, then you will be helping to raise awareness too. Thank you.....


Saturday, March 03, 2012

Taking In The Sun


Today, the sun is shining here. A freezing cold wind blowing outside, but right now the sun is shining. I love just standing at the window, taking in that sunshine. I feel like I am giving my body a wee boost. Most people go on a summer holiday for that. But I am quite happy to get that sunshine through the window of my house.

Holidays, I think, are a thing of the past for me. It’s not the actual holiday which is the problem.....just the getting there.

I remember one time going on holiday, many, many years ago, I was getting airport assistance. At the British airports, that meant a wheelchair with someone to push it. In Amsterdam, where I had to change flights, it meant going aboard an electric buggy and a woman driving at a great speed. I had to say goodbye to my family, and I could only hope that I was deposited in the correct departure lounge to meet up with them again. 

The woman who was driving looked at me, and told me I looked good. It was one of those looks that said that she thought I looked too well to be needing airport assistance. I actually thanked her for telling me I looked good and left it at that....she didn’t need to know why I needed airport assistance. She only had to get me to the correct departure lounge.

Actually, I felt lucky, in fact, privileged to be starting my holiday on one of my better days. It could have been the opposite, so I was grateful to be looking good.

Obviously I needed airport assistance due to my back and my inability to walk about two miles across Amsterdam airport. Assistance wouldn’t have been given for my Trigeminal Neuralgia, since obviously I don’t walk using my face. (Although sometimes it feels like somebody is walking ON my face!)

But people do look at you sometimes and question whether you are really ‘sick’ or have a disability. People can often see that my back is painful by the way I am walking. But when it comes to my face.....nothing shows. Nothing at all. And considering the pain, I wish people could sometimes see it. It must be hard for people to understand how much pain someone can be in when they cannot see anything. I know all my family and friends try to understand it, but other people really can’t get it.

It’s like you break your arm, you have a plaster.

You get a bad cut, you get stitches.

Even if you have the flu, people can see that.

But Trigeminal Neuralgia and other invisible illnesses don’t have anything to show for themselves. So sometimes people can look at us and tell us we are looking well. Other than walking about with an axe through my head, and a drill in my teeth, nobody would know that I have any form of facial pain.

But you know what.......even though I might be feel absolutely lousy inside, it is still nice to be told you’re looking good. Especially at my age!!! Though I guess that's nice at any age.

Anyway, enough writing for today.

Off to take in some more sun.





Wednesday, February 29, 2012

Hope

My face wasn’t doing good last week. I mean, it’s never good, but last week it got worse. One day it just went off the charts for me.

This is what used to happen with my back. It would be bad, and I would learn to cope with it at that level. Then it would get worse, and I had to learn to cope with it at that new level.

I suppose that’s what living with chronic pain is like. It’s always there, so you kind of get used to it. Then it sends in a reminder. Just in case you had forgotten. If only..........

I felt like I had been coping with my face a little better before this last episode. I actually felt as though I was getting my life back on track. You know, like actually getting out of bed and getting dressed in the mornings. Then wham, bam, here we go again.


My GP had received a letter from the pain clinic a couple of weeks ago suggesting a new med for me to try. At that point, I was doing that bit better, and the thought of a new med actually scared me. Going through all the starting from scratch with it, the side effects, then of course, the big one - is it actually going to help?

My GP completely understood, and agreed with me. If I am doing ok on what I am on, there is no point in changing. Of course, the pain clinic hadn’t sent that letter just for the fun of it. It was because the pain clinic nurse called to see how I was doing a few weeks ago, right bang slap in the middle of a bad spell. So they were trying to help. It was shortly after I spoke to her that I had that little bit of a better spell. Then I get another bad spell. It can be like being on one of those rollercoasters. One day you're up, next your down. I guess I am just grateful for the 'up' days.

I am hoping that it was just a bad spell last week, and hopefully it will stay calmed down. Just now, it’s not too bad, but my teeth are feeling as though they are on the verge of going crazy. Or maybe that's just me......

But at least if it all does get worse again, then I know that there is another option out there for me. And I suppose it’s good to know that there are other options.

There have to be other options. And there has to be knowledge that someone is wanting to help.

But most of all, there has to be hope of finding a way out of this illness.

We need hope. A lot of hope.

We really need it.........

Tuesday, November 08, 2011

Ouch, ouch, ouch

So.....last night the pain got really bad. Having Trigeminal Neuralgia really is a pain. It had been bad during the day yesterday, but steadily got worse.  I had semolina pudding for dinner. (I do actually enjoy that). Anyway, as the night went on I felt worse. Constant pressure on my cheek bone and head. Had to take off my glasses. My teeth.....well, they were really bad. I wanted to sleep, but I just couldn't.

I use Lidocaine patches and normally put them on at nine at night, when I am taking my nightly dose of meds, but last night I put them on at eight o'clock and took the meds then too. By ten o'clock, thankfully the amitriptyline made me fall asleep.

I woke up early this morning, still not good, but better than last night.

But I have a huge worry today. I have an appointment for a check up at the dentist today. I am petrified. When I go there on a good day, all her poking and prodding turns it into a bad day. So I dread to think how I'll be afterwards today.

But I need to go.

When you get so much pain in your teeth, you don't actually know if it's always TN pain or if it's maybe toothache. So the dentist does need to check in case there's a problem. Sometimes I actually wish she would say, 'Yes, I see a huge cavity there, so you're needing some work done.' I know that must sound crazy to most people, but TN sufferers will understand. At least that would be a reason for the pain, and could actually be fixed. Get a filling done, and no more pain. Sounds good. But in reality, our teeth aren't what's causing the problem. It's that trigeminal nerve. I know a lot of people who have gone to their dentist and had teeth taken out because they thought it would cure the pain. But it doesn't. They get left with the same pain but no teeth.

Oh the joys.......


Saturday, October 22, 2011

Living with TN


My pain has actually been around for more years than I care to remember, but in the beginning I thought the pain was being caused by migraines or from toothache (even though the dentist could never find a problem). I was constantly telling my doctor about these headaches which hurt so badly and went on and on and on. I remember telling doctors that the pain was just everywhere....even my face was hurting. Nobody twigged. I just kept being given more painkillers and migraine remedies. But nothing helped. I think that doctors probably saw me as a lost cause. I think they probably put the headaches down to the stress of living with a chronic back problem. So they just kept signing prescriptions for me and gave me the sympathetic smile.

I gave up work seventeen years ago and I can remember as far back as then having headache after headache. But over the years the headaches became worse and that ‘toothache’ also became worse. Sometimes it was on the top teeth, sometimes the bottom, sometimes both top and bottom, but it was always there. Dentists seemed stumped by it. One dentist even told me that maybe I wasn’t cleaning my teeth properly!!! Finally, a new dentist I saw told me that this was a nerve problem and sent me to my doctor. It was the first time the word nerve had ever been mentioned. Finally I was diagnosed with Trigeminal Neuralgia.

So here I am now, a few years on. The pain is worse than ever. I have gone through several combinations of drugs, but still the pain worsens. Or maybe my tolerance level has lessened. Actually, I don’t think that is the case. The TN / ATN has definitely become worse over the years.

My ATN affects my head, face and teeth. On a good day, the pain is normally at a level of 3 or 4 out of 10. But that can change instantly. My pain is mostly right sided, however, the left side also gets affected by it from time to time. It can be made worse by a number of things like talking, eating, drinking or cleaning my teeth. But the worst thing for me and many others is cold. TN hates the cold.

It is now the 22nd of October and I really do not want to leave my house. I am scared of leaving my house. Even during the summer, a nice day, but a cool breeze.....to anyone else, that cool breeze was pleasant. But to me, it was frightening because it could make my pain worse. I hardly go out the house. In fact, some days, I hardly leave my bed. When the pain is bad, I just hope for sleep to take over. I don’t socialize. I didn’t do much of that anyway, due to my back problems, but now a social life is completely non-existent. Even the odd trip down to visit my family 40 miles away is now being affected. It’s not nice to go visiting when you are in pain. It is nice to see people. Kind of like a distraction. But to travel 40 miles, to then be in such bad pain isn’t good. TN affects so many aspects of life.

The pain in my head feels as if my head is trapped in a vice which is being turned tighter and tighter. My cheekbone and forehead feel as though they have been kicked by a horse. My teeth constantly feel as though someone has a pair of pliers and is trying to pull them out. I have a deep, deep pain in the back of my head, just behind my ear. When the TN affects me with shock type pain, it tends to be in my front teeth, top or bottom and radiates along my jaw on both sides right to my ears. It feels as if a live electric cable has been put against my teeth. It’s like torture.

I really do not know what life is like without pain. For most of my life I have lived with chronic back, head and face pain. People used to say that I don’t complain despite having these problems. That may have been true, but lately I have complained plenty. Possibly too much.....people possibly don’t really want to hear me complaining. I can’t blame them for that. Besides, it’s my problem, not anyone else’s. But life isn’t easy living with the pain of Trigeminal Neuralgia, and it becomes very difficult not to complain.

Trigemal Neuralgia takes over a person’s life. It also takes over their husband’s /wife’s / family’s life. Fortunately, I have a husband who understands and helps. Not everyone has one of those though. My husband is my rock and all I can do is say “thank you” to him.

Friday, October 21, 2011

Up late, sore face

So.......here I am, 40 minutes after midnight and I am still messing around with this blog.

Actually, I would have gone off to bed a while ago, but I am sitting here hoping that my tablets kick in for my trigeminal neuralgia. Tri what? That's the normal response.

Trigeminal Neuralgia

Not nice. Not fair. And not wanting to write about it tonight, so I won't. I'll save that little gem for another day.

All I'll say just now is "AAAAARRRRGGGGHHHHHH......I am sick to the back teeth of living with chronic pain!" Whoever first used that saying must have had trigeminal neuralgia. Right now my back teeth really hurt, my front teeth really hurt, my head really hurts, my face really hurts.

Not much fun....but that's life for some people. But you know what....I still smile. Sometimes it hurts, but I still smile and I hope I never stop smiling.

Now I will get off to bed and hopefully sleep.