Showing posts with label Atypical trigeminal neuralgia. Show all posts
Showing posts with label Atypical trigeminal neuralgia. 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, October 25, 2013

SPAM

Picture from the Official UK Spam website
www.spam-uk.com
I hate spam. Always have.

That pink chopped ham and pork which comes in the tin whose purpose in life is to cut half your fingers off...Sorry to any Spam lovers out there, but that stuff just makes me go eeeuuugh.

But my blog post isn't actually about that kind of Spam. It's about the email type of spam. The equivalent of the junk mail which the postman brings on a daily basis. It all gets kind of annoying. I don't want to buy watches, handbags or even those little blue pills. And I don't want to give anyone my bank details so that they can deposit half a million US dollars into my account. I don't believe the story that Great Auntie Doris has left me all that money, nor do I believe I can save the computer world by forwarding on a message about a fake virus. But those are the joys of computing......

Spam on Skype is a little different. Messages, normally from a General in the US army (yeah right!), who is just back from serving in Afghanistan. Wanting some friendship. Oh, and I was nearly always told that I have a friendly face and a lovely smile.

I actually laughed when I received those messages. My Skype profile picture is just a design, there is no photo showing a friendly face or lovely smile. So Skype spam gave me a laugh, but I began receiving the messages like this every day, and they became tedious.

However, I finally found a way to stop them. Went into Skpe profile and unticked the box "female". Simple as that. Not a single message since.

Now on to Facebook. I, along with many others, get the occasional private message turning up from some strange stranger looking for lasting friendship, and they just happened to come across my profile. And guess what.....they are also Generals in the US army who have just been serving in Afghanistan. How boring, can't they think of some other occupation?

Anyway, they are easy to deal with. Hit report....they're gone.

However, the other day, I received one of the above private messages on Facebook. The usual kind of message, but he had also poked me!!! For those who don't use Facebook, you can click a button to poke a friend. A friendly poke to say hello. I'm not overly keen on friendly pokes. I have sore ribs, pokes could hurt.

But this poke was from a stranger. A stranger! Poking me!!

That's worse than spam.  It's even worse than Spam!

Eeeuuugh!!!



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, June 26, 2013

Determination

Every so often something happens in life which pulls you up and gives you determination to keep doing what you have been trying to do. And it makes you try even harder.

A few months ago that happened to me when I met (online) the mother of a teenage boy who has been suffering from Atypical Trigeminal Neuralgia since he was about eight years old. I couldn't believe it. I had read that children can suffer, but when you get to know of one, it's a whole other story. Learning about that boy pushed me at that time. It made our awareness campaign even more important.

A similar thing happened just a couple of days ago, when we met a woman (again online) who thinks her daughter possibly has Trigeminal Neuralgia, or something similar. The bigger problem here is that her daughter has cerebal palsy and is unable to talk. Unable to tell where exactly the pain is. Unable to say just how bad it is. However, she has stopped laughing. She is no longer the happy girl she once was. She struggles to eat. It is too painful to even swallow.

The worst part in this story is that this poor woman was getting no help. It was as though doctors were not interested in helping. This girl had no voice to complain about the pain, and it was as if doctors were thinking that was ok.

THAT IS NOT OK.

This girl has as much right to be free from pain as any other person, whether they be a child or an adult.

The poor woman was at her wit's end trying to make people listen to her. But the people who are supposed to be there to help were ignoring her. It is so wrong.

I haven't been able to get that beautiful girl out of my head.

I can only hope that things improve. They have to.

I have seen a video of her laughing three years ago prior to the start of her facial pain. My wish is to see a new video of her laughing again.

Once again, this story makes our awareness campaign so important. And it is pushing me to try harder.  I am determined that our campaign will do something positive for people with TN.

People may get sick of me asking them to share our posters, watch our videos and read our blog, but I will keep asking.

The only way forward is by awareness.

End TN put out a new blog post today. Please, when you get time, take a look, follow it and share it. Please click here to read End TN's blog.


And if you haven't seen our awareness page on Facebook, click here.



Friday, June 14, 2013

It's All About Awareness

I wish I didn't have pain.

I wish I wasn't so tired.

I wish I didn't have to take so many meds every day.

Ohhh......I could make lots of wishes. But there really is no point.

You have to make the best with what you've got. And I do try to do that. Most of the time anyway.

But there are "those days" when I do feel a wee bit sorry for myself. But I'm sure everyone gets those. Thankfully, they don't last for long and I can get back to normal again.  I hear people say that they wished they could feel normal.....but this is normal for me, with all the pain, the tiredness and all the other bits and pieces. It's what I am used to. Of course, I wish I wasn't, but.......

Isn't it sad that for so many people, this is what "normal" is. So many people live with illnesses and conditions day in and day out with no chance of change. And so many people's conditions are invisible to others. Just like Trigeminal Neuralgia.

facebook.com/endTrigeminalNeuralgia
This week's post on our TN Awareness page on Facebook was about the fact that Trigeminal Neuralgia is invisible. However, on a positive note, there are a lot of awareness groups just now, so it may be invisible, but it is certainly not going to be silent any longer. We want everyone to know about TN.

Our own group now has this week started a TN blog. If you haven't already seen it, please take a look and let us know what you think. Here's the link http://endtn.blogspot.co.uk/

So there you go. You came to read my blog and get a link to another one as well.

A special two for one offer for today only!

Wednesday, May 01, 2013

Guilt

Something that often comes along with living with chronic pain is guilt.

I always trying to stay positive, trying to do what I can with a smile on my face. I still occasionally get a bit down in the dumps. I will not call it depression, because depression is a lot more serious. Depression is completely different. I get a bit down, just like everyone, but I can also pick myself back up.



However, I do often suffer bouts of guilt. I will add now that nobody makes me feel guilty except myself. But those bouts of guilt are more difficult to deal with.



I had to take early retirement when I was 28, two years after getting married. My pain has always ruled both our lives. But it gradually became worse over the years. Now I do less, my husband does more and I do feel guilty.

I used to be able to push myself more, but now I just don’t have the energy. I also don’t think I am physically capable of pushing myself anyway. I put my feet out of my bed in the mornings (at some late hour normally), and feel as though my feet won’t hold up my body. I struggle with everything. Life is hard. Just living is difficult some days. And yes, I feel guilty that I can’t do what I wish I could.



But it isn’t just that.

 It’s other things.....like not phoning someone, not getting around to answering someone’s email or Facebook message. Not reading blogs or Facebook posts that I would normally read. Or getting tired mid-conversation and losing track. Forgetting things. Getting things wrong. Just generally not being able to keep up.


I used to do things. I baked. I painted. Made cards. Made Jewellery.  I wrote. I even ironed occasionally. Now, I think I have become a zombie. I get up, I eat, I sleep. Maybe take a turn or two on a scrabble game, but that's about the height of it.

Sometimes I hate being me. Being me is tiring. And I feel guilty for being me.

I actually feel guilty for being me!


I could spend my life wishing things were different, but they’re not, and they’re not likely to become different.

Living with constant pain uses a lot of energy. And guilt is what I class as negative energy. We, chronic pain sufferers, can’t allow energy to be wasted on something like guilt. We need every single ounce of it just to get through the day.


So time to get rid of the guilt.

Might be easier said than done though.....



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.