Hi everyone… I was diagnosed with TN 16yrs ago. Mine came from a fall that cause a blood vessel to put pressure on the nerve. I did the MVD whiched worked for a year. As the pain got worse my doc suggested the Gamma…well that totally messed up the nerve. I’m now one of those lucky ones with AD. My pain starts at the top of my head and continues to my jaw. The numbness drives me crazy. I scratch my forehead, can’t really feel what I’m doing and cut myself. My right eye ic 100% numb, talk about weird. But mostly the 24/7 pain is something no one understands. I don’t even all my doc to touch my face. My lips hurt so bad, my tongue tingles and hurts along with swelling. My eye lashes freakn hurt when I blink. The facial pain is bad, but the 600mgs of lyrica and 2 pain pills a day help about 50%. Y’all are correct when you call AD a monster because it does control your life or what’s left. It’s call the suicide desase for a reason, we all think we don’t want to continue with this pain when we grow older. And we know it only gets worse. I will take my meds and pray for a cure. Pray for this horrible pain to STOP.
Western medicine is a work in process, but not progress, it is kept in ignorance to the public by money. Your training is part of it, and I don’t mean any disrespect, it is what it is. Mine isn’t, yet it is hampered by the attitude from the medical profession, instilled in folk there’s a quick fix in the form of a pill. Medicine isn’t a work in process, it has gone backwards since Linus. We’re so ignorant, or chasing the dollar, that health care went out of the window years ago. In the UK the NHS is so strapped for cash we’re getting ’ cure your diabetes by diet in the local papers. Today we get your gut bacteria or lack of can cause a-z ( exaggerating but altzeimers included), influenced by your diet. Coming from a doctor no less with the caveat that probiotics aren’t proven to help. Here in lies Dorothy loving mother passed before her time due to probiotics.
Carol of all the posts I have read over the years yours were the ones which stayed with me.Hope you succeed in writing that book I would certainly buy a copy and pass it to others to read. Glad to know your hanging on in there. Don’t let the bugger best you xxxx
A fall that caused a blood vessel to put pressure on your nerve, sorry whilst sympathetic, and MVD lasted for a year, maybe consider hocum in the first instance? And I am sympathetic, wouldn’t wish AD on anyone. It makes me more annoyed at fpa research for their stance.
Hi Elstep…
God it seems an age ago dosnt it when I first found this site…I was desperate…suicidal…and found you guys…and you helped drag me through it…All these years later…what I knew back then has come true…No one does really understand the pain we go through daily…but the support groups are fantastic…and when you hear of some who are so very young to have this monster my heart does bleed for them…but we are strong…and we cope…and to the outside world we have a bad migrane…if only eh !!..hey what dosnt kill you makes you stronger…and it does…Iv become ice now…nothing can or will break me anymore…big hugs xxx
Hi…
Im truly sorry that you feel this way…I dont really do politics of how or why the FPA work…The only reason I come on here was because when I first got AD through surgery I thought nothing could be worse than TN1 and 2…I was wrong…it is worse…I dream of only having TN1 and 2 these days…but it is what it is…I am not in the UK…I live in Spain…was operated on in France…and my original TN1 and 2 was caused by a French Dentist…I have worked since I was 15 years old…and apart from a 3 year gap to have my children I have worked and paid into the UK to this very day…Do I blame the NHS…cant really can I …I dont use it…but this site is to support each other and vent possibly about how we feel…I think we go through enough without worrying about the intricacies of why/where/how…It is what it is…we have to learn to live with it…there is no other choice…I have seen one of the best neurosurgeons in Spain when this happened to me in France…he is a TN / AD specialist…hes dealt soley with this for 25 years… Benjamin Lopez…Look him up…trust me…if there was a fix for this monster…he would have found it…Sadly we have to rely on drugs to get us through…Do I want to take this cocktail of pills every night…no…I dont…and any sane person would reject them as well…but to live a life as normal as I can…I take the pills at night only…otherwise I would not be able to do my job…and fall asleep…quickly…Xanex is a wonderful drug…The drain on the NHS isnt my problem…I didnt let every tom dick and harry into the UK and run it into the ground…but please believe me…In France and Spain the treatment is the same…except the UK do not do Xanex…because their is such a huge drug culture in the UK that these drugs are banned…Thankfully I live in Spain where they are not…I wish you well…and hope the pain eases for you
After suffering with TN1 and 2 for 10 years…having a procedure which gave me AD for 7 years I have finally found something that works…its madness…I was talking to a couple and the man had had Lung Cancer…he had 3 tumours…He began to take CBC oil with TBH still in it…These are suppositories form…He told me that after 4 months this combination had shrunk the tumours so much the Drs could operate…i was flabbergasted…He then said that he would put me in touch with the man who made this…He did…I was soooo sceptical…seriously I was…but you know…when this pain kicks in we know we would give anything a try…so I did…I am even more gobsmacked now…The pain has gone…I mean seriously 100% gone…I have basically stopped all the meds that made me feel spaced all the time…and the pain has still gone…All because of one tiny suppository put in before I go to bed…the cost is negligable compared to how much the meds cost…but the reward is astounding…I have no side effects at all…none…not one…am I stoned…no…am I spaced…no…my question is this WHY is this not told and talked about…Iv heard of CBC oil without the TBH …BUT its the TBH that works…I run my own business from home…There is not a chance in hell that I could smoke a joint …I cant stand it…but this combination in this form is like a miricule . I cant beleive it… I wanted to share this…because I know…like me…there are a lot of people who cannot and will not smoke a drug…but this stuff is sooo easy…and I cannot tell you the relief it has given me…what has amazed me is that 1/ it can cure cancer…2/it has def stopped my pain…3/ WHY are the pharmaceutical companies ot screaming this from the top of the world…ahh…I know the answer to number 3…they dont want to find cures…its not profitable…well…I can tell you this works…and if anyone wants to PM me and ask me more details please do…This pain is a monster…it actually make you want to die…the meds are as bad…the side effects are horrific on your organs…this is a plant…its natural…IT WORKS !!!
Just a word of caution – the fact that something is “natural” or a plant does not make it safe. It also does not make it better than synthesize meds from pharmaceutical companies.
All drugs start out “natural” what pharmaceutical companies do is make it reproducible at a consistent dose. Everything has side effects. Everything. At least with synthesized meds you know what they are.
Pharmaceutical companies are not against CBC. It’s a political issue. Right now it’s still largely illegal so there’s no money to be made in research and development. As soon as it’s legal the flood gates will open as there is plenty of money to be made and a whole new revenue stream to be explored.
It’s an urban myth that big pharma wants people sick. The real issue is the fact that the stand by “do no harm” as much as possible. This means testing. This means things that sorta work are not brought to market. This means development is a slow process with decades of research behind it. People assume this is because they want you sick when in reality they simply don’t want to make you worse, or kill you in an effort to cure you.
I don’t like to disagree, but with correctly prescribed pharma in the correct doses is the fourth biggest killer in the US, I don’t think Pharma particularly care beyond profit. Not including those experiencing a living death in old age, or the fact the US has the largest proportion of chronically ill kids in the world.
Political, debatable, but the figures are there. The richest, possibly in the most debt country but with a very ill population across all ages
Now 'moth you know I’m not going to respect the random statement that med in the correct dose is the fourth biggest killer, you have to provide actual resources for a sweeping generalization like that.
---- aiculsamoth ■■■■ wrote:
Azurelle,
Your right, soon as I stated it, I thought uh oh here we go azurelle. and you’ve correctly called me out for proof. I reckon I’ve posted before said link, I’m looking for it, might find its the fifth, hey maybe the third, I’m on the case.
Presently getting images of Daisy? from the dukes of hazard in my search, could be worse, i’ll get back to you.
Ok presently found a couple of links which might suggest only I could be right. First europe not USA, and doesn’t mention mentioned but reckon the USA is going to be in the same ball park but mention the sociatal to indivual risk of death in europe which lists as number one preventable medical injuries in hospitals, obviously above all else, not a place you want to volunteer for.
500,000 americans died after taking a prescription drug in america in 2015, 40,000 attributed to an adverse reaction to a drug that was properly prescribed and taken.
58,200 death in the Vietnam war over a twenty year period. Extrapolating, not science, but must come somewhere close, 800,000 deaths due to properly prescribed meds in twenty years, way to go.
40,000 in one year should be enough to say, eh one moment… I’ve a little depression/ alot of pain, but these stats??
Thanks for posting all that, 'moth, although frankly I was kinda hoping for a picture of Daisy Duke standing next to Luke Duke (the cuter brother in my opinion!).
I need to take some time and read through all that info. Definitely it all needs a second look!
Just glancing at it brought to mind the old saying “The best way to get sick is going to the hospital.” Ewwwwwwwwww!
azurelle,
Showing your age, got a pic of Clint in the nude, happy to share for a trade!
LMAO – you made my eve, and maybe even my entire weekend 'moth!
I dunno 'moth, I read that article about prescription drug deaths and breaks out neatly:
275,000 were due to some error—such as a wrong dose (could be prescriber error or admin error, or could be interaction with something else that may or may not have been disclosed correctly)
130,000 were caused by unintentional misuse, such as taking the drug more frequently than prescribed (patient error/misuse so really can’t be counted in my opinion, taking something against given directions certainly isn’t unintentional)
40,000 deaths were attributed to an adverse reaction to a drug that was properly prescribed (risk we all run when putting anything in our bodies)
At the end of day that’s only 315,000 deaths overall. Heck, in 2017 more than 55,000 people in the USA were killed by the flu, 15,000 more than those seeking treatment for a condition and being prescribed meds. (https://www.medicalnewstoday.com/articles/282929.php) So, it doesn’t seem to me that the odds are all that bad and the outcome of using prescription meds all that adverse.
I don’t know seems some what, so what, 40,000 deaths due to a correctly prescribed drug, per year if I’m not mistaken. Understand some might of abused the script, but surely an eyeopener. Believe the JAMA published similar with a higher stated death rate, not sure circa 2■■■■ish stating 12,000 a month, I’d have to look for the link. 50,000 war deaths in ten years, folk take to the steets in protest, prior to the number reaching that level. 40,000 deaths pretty high, ( was going to ask how many folk died due to not being medicated, never seen the stats, but reckon considerably lower, I haven’t looked, not sure where to, but I’m guessing it’s less, statins have been shown to be a fail in mortality rates I believe).
ONLY 315,000 deaths overall, and we are talking per annum if I’m not mistaken, but thats OK due to 55000 flu deaths, in the main the elderly who take an average of 11 prescription medications. I wouldn’t expect my immune system to cope with flu if I had this number of meds affecting my expected and normal physiology.
Realise this isn’t the place for this discussion, but the figures are astounding, and yet …nothing
I’m basing my comparison to the population as a whole, not those drafted into wars. With 325.7 million in the USA and 511.8 million in Europe the numbers based on presciption issues really is very slight. I’m not sure why you’re using war as a comparsion. An equally valid number would be there were an estimated 40,100 motor vehicle deaths last year in the USA (a drop of 1 percent from the prior year). In Europe motor vehicle deaths were at 30,500 for 2016 while worldwide vehicles are involved in crashes that are responsible for 1.25 million deaths and 20-50 million injuries. These were apparently all via licensed drivers which could be equated to correctly prescribed drugs. The fatal rate is, generally speaking, the same! Take a drug, run a risk of death. Get in a car, run a risk of death.
You can find numbers to fit anything and to enhance any comparison you want to make.
---- aiculsamoth ■■■■ wrote:
Ok 445,000 deaths, my math might be better, times it by circa three generations of family members that may be affected, why do I find it an issue??
If these deaths pale into insignificance then there are so many people ill in the USA, then that in itself is an issue, and drugs aren’t working.