Hi everyone, I just watched a TED talk on the causes of Alzheimer's and apparently they are now getting closer to understanding what may be causing the disease (after no real progress in 114 years!). It's allegedly a problem with protein plaques forming on the brain and effectively destroying neurons.
Anyway, after reading up on the disease, I've discovered it has some similarities to TN, especially in the damaged neurons and in the 'tangles' it has, along with vascular problems. It seemed so similar, and I have personally had a fear of TN being an early sign of Alzheimer's as my grandmother suffered from (and died from) the disease and I'm horribly like my grandmother in health, build and personality!
I just wondered if anyone had ever given any thought to the possibility of TN being an early sign of neurodegeneration or heard any theories connecting TN with Alzheimer's? Or perhaps you have personal experience of neurodegeneration within the family, like mine?
Hi, can’t say I’ve ever come across anything linking TN with Alzheimer’s, that doesn’t mean there could be one found one day…The field of neurology is quite vast, and even the best neuroscientists have admitted there’s still so much to learn.
To ease your mind a little, I highly suggest a great book about the power of the brain ( mind) and it’s capability to ease, heal our symptoms. Just a different way to look at things. It’s called You Are the Placebo by Dr. Joe Dispenza .
I’m not suggesting by reading this book we will cure ourselves, but I do find it an interesting concept and have been working hard to change my mindset and think outside the box and find some hope . I think our brains are capable of so much more than we know, and I’d like to explore some positive avenues for a change…I’ve spent far too much time worrying about all the negative things…hope it interests you.
(( hugs )) Mimi xx
Hi Mimi, many, many thanks for the book rec - that's of great interest. I'm just going to go check it out on Amazon. My doctor is always banging on about placebos (usually as an excuse for anything working that he doesn't expect, like B12 injections!) but I do believe they have tremendous (overlooked) potential. I'm often struck by how many diseases often have a 'psychological' element early on in the condition, in that they often follow on after bereavement, trauma or depression. It's always difficult of course, to know what came first, depression or illness (it's a chicken and egg thing!), but it's recognised how much effect stress and such like can have on our health. Only recently I read that children who suffer from childhood trauma have a far higher incidence of illness and disease in later life. It's a shame that medicine only really recognises this when they are trying to blame the patient for being ill because they have no idea how to treat a condition!
I studied this a lot, due to my Dad having Alzheimer's and because Mom got senility from strokes and vasculitis, (inflammation of blood vessels in the brain,) I happily discovered that even though I seem to be losing concentration and memory and it feels like Alzheimer's, that there is no connection. The plaques present in Alzheimer's are not present in TN. There is a very small percentage of Alzheimer's patients who have ever had TN. I came here today to post a discussion about memory loss due to TN rather than due to the meds we use, and this is right along the line that I was thinking! And we posted just minutes apart! Great timing! I do wonder if these zaps that take parts of my memory WILL cause senility. It's scary.
Hi Sheila, that's really interesting, hearing it straight from the horse's mouth, as it were, from someone with first-hand experience of Alzheimer's (I only heard about my gran's after she'd died). But you have me really alarmed now with the idea of TN causing memory loss. Have you actually experienced this yourself? I get it very bad with medications, although it's actually more to do with speech problems - not remembering words or being unable to construct a coherent sentence. I call it the blank wall. But mine is very much the meds. Lower the meds and that improves immediately. I've never noticed the TN itself causing a problem - you've freaked me out now!
I'd be really interested to hear about your experience of that. How do you know it's actually the TN doing it? And what exactly is it doing to you, memory-wise?
Sheila W. said:
I studied this a lot, due to my Dad having Alzheimer's and because Mom got senility from strokes and vasculitis, (inflammation of blood vessels in the brain,) I happily discovered that even though I seem to be losing concentration and memory and it feels like Alzheimer's, that there is no connection. The plaques present in Alzheimer's are not present in TN. There is a very small percentage of Alzheimer's patients who have ever had TN. I came here today to post a discussion about memory loss due to TN rather than due to the meds we use, and this is right along the line that I was thinking! And we posted just minutes apart! Great timing! I do wonder if these zaps that take parts of my memory WILL cause senility. It's scary.
I didn't mean to scare you, and I'm very sorry. If you are not noticing the same symptoms that I am having, if you know your symptoms are due to meds and that it gets better when the meds are lowered, then I think you have no worries. It's not a permanent problem. I don't have the strength to retype everything I just typed into the discussion I just posted. Can you please go to the main page and look for the discussion I just started, called "Memory Loss NOT due to meds"?
Thanks for the link, Sheila, and please don't apologise for alarming me, I was only teasing. You know what it's like, you can get paranoid about everything around TN after a while, and it's been so long since I have been without meds I'm afraid that when I come off them (if I can come off them) the memory problems will still be there!
I've read your post and now I'm alarmed for you, you poor thing! I wonder if it's just the pain though. When you think about it, if you have any bad pain, like a bad headache, it makes you very distracted and you never take in anything anyone says to you, or you forget what you're in a shop for. Pain is very debilitating and distracts you terribly. I'm wondering if that's what's happening to you. I think the fact that you can remember things afterwards might be a further sign that really it's the pain that's the problem rather than any genuine memory loss. Just a thought....
Ah, absolutely, Sheila - a pie chart for pain, wish I'd thought of that. As soon as I looked at it, I found my mind altering it for what it was like when I first had TN and the meds hadn't kicked in. Then it would have been 98% blue for pain, with the remaining 2% turquoise for self! Nothing else would have made it in; I was consumed by the pain and the terror of the pain.
My partner just discovered yesterday that he has shingles, which was something of a gobsmacking moment, since as far as he is concerned he's never had chickenpox! But the doctor offered him Paracetamol for the pain, which was okay, since he is quite a bit into the cycle now and the pain's not at its worst, but we've been talking about the fact that docs are great at only offering you stupid little painkillers for quite epic pains. Easy to do when you are not the one suffering! You'd think docs would get the effects of pain, but it's been my experience that they really do not, and nurses are often not much better.
Oh my gosh, yesterday a friend took her hubby to the ER and he was diagnosed with shingles too, but the rash has not come out yet, He's just in excruciating pain from the same nerve pain in the same areas that shingles would happen. He was given an anti-viral and pain meds that work for nerve pain, probably the same meds that are given for TN. Happy TN awareness day! I don't know if you use Facebook, but wow, there are so many teal posts going up and so many changing their profile pics to a TN pic! I'm going to add some to my profile page photos area. So your husband now has had a taste of nerve pain (but not as intense as yours). Glad that he only needs paracetamol. Many need much stronger meds than that, and we with TN usually need that too. I agree with you about your version of the pie chart. Even now I have no space for friends or work, except the paperwork and calls I have to do after Mom's and my brother's deaths, which will take a year. My remission of TN has gone. Hoping it returns soon or I will have to hire someone to help me with day to day living.
Oh, poor you, coming back out of remission. What a blow. I dread that happening to me. How long was your last remission? I've had TN for about two years, I'm guessing, so I'm a relative rookie. I only had the really bad pain for about 4 weeks or so, before meds kicked in. I was also diagnosed very quickly because I'd found it myself on the internet (God bless it!). I'm in remission at the moment, but I've still not picked up the courage to test it. I still take 200mg of Carbamazepine a day, but I am working it down currently with a view to losing it altogether. Unfortunately I get bad side effects: hypothyroidism, neutropenia and erythema multiform rash, to name the worst of them, so I'm dreading a return of TN and having to go back to the ill-health the higher doses of Carbamazepine brings on. Plus, of course, the stupidity, the exhaustion and the anti-social personality disorder. The insomnia, panic attacks, nausea and falling over. The.... Yeah, I could go on, but I suspect you're all too aware of the horrors the drug brings yourself.
I had completely forgotten it was teal ribbon day - damn it. Oh well, I'll wear teal tomorrow - better late than never!
Sheila W. said:
Oh my gosh, yesterday a friend took her hubby to the ER and he was diagnosed with shingles too, but the rash has not come out yet, He's just in excruciating pain from the same nerve pain in the same areas that shingles would happen. He was given an anti-viral and pain meds that work for nerve pain, probably the same meds that are given for TN. Happy TN awareness day! I don't know if you use Facebook, but wow, there are so many teal posts going up and so many changing their profile pics to a TN pic! I'm going to add some to my profile page photos area. So your husband now has had a taste of nerve pain (but not as intense as yours). Glad that he only needs paracetamol. Many need much stronger meds than that, and we with TN usually need that too. I agree with you about your version of the pie chart. Even now I have no space for friends or work, except the paperwork and calls I have to do after Mom's and my brother's deaths, which will take a year. My remission of TN has gone. Hoping it returns soon or I will have to hire someone to help me with day to day living.
