That’s actually good news, Aiculsamoth, thanks. As long as it is not an off-register treatment in Scotland then they might consider me for it. That was the problem with Sativex - it’s off-register here in Scotland so even MS patients would have to fight for it - which is an outrage, in my opinion, but I suspect it’s probably a cost issue. I know they are very expensive (I seem to recall about £50 each!). I’d have been happy just to get CBD oil (that’s what I went for) but my doctor about fainted when I asked her for it. I shall have a look on the NHS website and see if they have anything about Botox. If I could use Botox to get rid of Oxcarbazepine and Nortryptiline I’d be happy to go for a little toxin in the face!
P.S. The Botox doctor leaves his needles lying about? Yuk. I’m sure that’s in breach of NHS rules!
not sure it should be in the face, migraine tn, top of the neck might be a plan, sure desk full of needles, doesn’t exact fill me with confidence either
speaking of botox for TN – botox is for migraine and has a proven track record with certain types of migraines. Sumatriptans are also migraine specific and have been known to help with certain TN flares.
There seems to be building, proven, evidence of certain migraines and certain types of TN. Otherwise, why would the meds developed for one work with the other?
I am too ignorant of exactly how Botox works to be sure of where to shove it, but I’d like to think the Botox doc might know? Maybe that’s the daftest suggestion I’ve made yet, since some neurologists don’t even seem to know much about TN!
Yeah, I’ve always thought that about MS too, Azurelle. It’s the only disease which has firm connections to TN so as MS is a demyelinating disease then I reckon TN is too. However, I have to admit that correlation is not causality - got to keep saying that to yourself, especially with your favourite ideas!
I tried the Atkins low carb/high fat diet (to the letter so I’d get it right lol) a few years back because I’d heard it may help some of my health issues as well. I have TN, migraines, epilepsy, connective tissue disease, fibromyalgia, hypothyroidism, IBS. My migraines are severe and are in the same eye and temple that my TN is, as well!
The diet put me in the hospital for a week! I’m sure this is because my body went into shock- totally opposite of how I’ve eaten my whole life which is basically high carb or vegetarian. So I would just say listen to your body:)
tulips, have you ever tried imitrex for a TN flare? I have migraines and ATN and have found the low dose imitrex (12.5mg to 25mg) sometimes stops the pain. It turns my face numb, but I’ll take numb over pain any day. On the flip side, interestingly enough imitrex does nothing for my migraines.
Exceptionally interesting, Tulips. Especially as the LCHF diet has been used since the 20s for epilepsy and, at least in a film I watched last night (The Magic Pill), some patients found it helped some of the conditions you have. Can I ask what specifically you were hospitalised for and how you feel - if you do - that the LCHF diet played a role in that?
I became increasingly fatigued and light headed until one day I passed out and was taken by ambulance to hospital. Once there they did blood work and were concerned at many of levels, white blood cells and because I was in ketoacidosis. My muscles were so weak I was shaky and couldn’t walk by myself. It took a week of rehab, rest, and different food to get me on my feet and feeling well enough to go home.
As a side note I don’t know if you’ve heard of the eat right for your type diet, based on blood type? Well I’m A+, which is basically opposite type of diet eating grains, legumes, vegetables. Many years ago I ate this way for a while and had no problems.
Right now trying to take care of myself and my special needs son I just do the best I can to get something healthy for us (not sure how successful I’ve been though lol)
Good luck to you!
Yes, I actually take 100 mg imitrex for migraines- and I sometimes get slight TN flare after migraine or more often ATN flare after migraine (have TN in V1 and ATN in V2) and if I take another full 100mg imitrex, for the ATN/TN it will help lower the pain (not completely and not make numb though) but as you know anything helps🤕
Now that really is interesting, Tulips, thanks for filling me in. There’s really only 3 common types of ketoacidosis and none of them come from a LCHF diet; you’ve got diabetic, alcoholic and starvation, so unless you are an undiagnosed diabetic I’m guessing it was starvation that got you! I wonder if you were being too zealous in your urge to “do it to the letter” and had inadvertently been starving yourself?
I notice, looking at your collection of conditions, they are mostly metabolic (even if some of them are contentious as being metabolic!), so theoretically a LCHF diet should be ideal for you, since it is a metabolic treatment. Well, if you ever decide to give it another go make sure you load up on veggies, never go hungry and take it slowwwwww. We don’t want to polish you off!
Talking of diet, believe just about every western disease, diet is causation, back pain, diabetes, autoimmune, psoriasis- linked to diabetes and aggravation/ reduced symptoms due to metformin. Skin tags even. thyroid/ diabetes. Reckon I could find on pubmed, at the very least, a reason for adjusting diet, just about any illness, including facial pain. No one would have linked, say psoriasis, with diet, years ago, here’s your cold tar soap.
It’s a autoimmune disease, biggest cop out ever, and these rheumatoid arthritis, psoriasis etc. all influenced by diet, and changing possibly genes. can’t think of a disease that isn’t acquired, that isn’t diet related.
Influenced by diet is not the same as being caused by diet/being diet related. Those are actually very different things. EVERYTHING is influenced by diet. This is does not mean diet is the cause or the effect of a given issues.
Of course diet can help most things but most things are not actually cause by diet.
That IS interesting… Further back I did have a Dr who thought I had a metabolic disease/disorder of some kind and I had a surgery where they took a splice of my leg muscle to test, but it didn’t show anything. Then come find out, it was the insurance that wouldn’t test for the rare problem that the Dr was testing for, they only ran things like muscular dystrophy and the like and there was no no way I could further testing. This is after this Dr saw how my fibromyalgia seemed to stem from metabolic issues and my son had been diagnosed with childhood fibromyalgia (amoung other special needs)- but both of our main issue is muscle WEAKNESS. then independently his Dr thought we both just have a metabolic muscle disease undiagnosed, but him only having Medicaid couldn’t get Mayo clinic or the kind of work up necessary to find the rare disorder. 7 years later I’ve just let it go and focused on treatment- no matter what the name for all our issues are.
Absolutely, Aiculsamoth. It’s actually kind of staggering watching just how many diseases are being umbrella-d under diet issues. Each year research seems to be pointing the finger at yet another, and most of them seem to be being pulled into the wake of the monster that is insulin resistance. Right down to the fact that some researchers have started referring to Alzheimer’s as diabetes Type 3. It’s like a huge perilous stack of cards, growing ever taller, just waiting to come down. More and more doctors are calling out all the accepted ‘wisdom’ on dietary fat, calories, dieting, heart disease, cancer and genetics - to mention but a few - and calling a spade a spade and saying the Western diet, and particularly carbohydrates are really the underlying cause of so many modern diseases.
Eventually it has to topple - someone is going to find something irrefutable (or disprove it!) and all will be chaos!
I’m going to stick my neck out here, Azurelle, and say that you are absolutely right about correlation not being causation, but I suspect we are looking at causation, not correlation when it comes to diet, and as I’ve said above, particularly carbohydrates. My reasoning for this is the same as every other researcher in the controversial camp, we are the first generation to be sicker than our parents, and unlike them we are not sick with infectious diseases like TB, polio, and the various poxes and dysentery and the like, but diseases of lifestyle. If they are being recognised even by the mainstream as lifestyle diseases, and they are, then it can only be one of a handful of things, and for me at any rate, that thing is diet.
The only other thing I think might be doing the damage is ‘stress’ (or strain as Malcom Kendrick prefers to call it). I think stress does terrible damage to the body, but because it’s so difficult to measure, and industry and commerce doesn’t want it measured in case we all have to cut back on mobile phones and long working hours, then its role goes largely unrecognised. Like diet, I think if someone finally finds catastrophic proof that TV news and Twitter is slowly killing us medicine will descend into chaos!
Oh, I really feel for you, Tulips. I can’t think of anything more depressing than a doctor finally tracking down something that he thinks might be your underlying issue and it being bounced purely on the grounds of some insurance company’s parsimony. Hopefully you can either sell your body (I mean to science, of course - cough) or at least win the lottery and get enough money to do the testing off your own back. However, I suppose you could always look up treatments for metabolic disorders, like ketogenic diets, and try some yourself and see if you see some improvement. Might be worth a shot!
Woman – I don’t believe our generation is sicker than our parents, I believe we have more science finding more things resulting in more diagnosis of things. We’re living longer and overall healthier so more things are being found.
As a random example I have a friend who’s currently fighting leukemia that began at 53 years old. 100 years ago he would have already been dead – average life span for a man in 2017 was about 50. So is there really more cancer? Or are we just living long enough to get cancer? I believe the second.
I also think we have more “free” time – that is, time not used hunting for food for basic survival. So we have more time to worry about things that never even registered as a concern for prior generations. I think we might be creating illness by looking for it.
And of course there’s the money-making angle of it all. Don’t get me wrong, I depend on meds for my quality of life, but I do think meds often go shopping for a disease. And the advertising the goes on for them in the USA is crazy. The ads basically explain what problem you have and why you should be treating it. Other generations weren’t bombarded with ads that told them all about their colon and how if they don’t poop three times a day like clockwork they need medication.
I don’t think we’re sicker, I think we’re over informed!
You could be right. I know I’ve read the stats and the books and watched the TED talks where these ‘facts’ are trotted out, but I don’t have the stats to hand to see how it was measured, so I’m not going to argue the point on that one. What I will say is being an old git I can remember when I was a kid that the only people you saw missing legs were veterans from WW2 and, occasionally, men who had had industrial accidents (although that was more likely to be an arm). You never saw anyone in a wheelchair with diabetic amputations. I didn’t know anyone personally with diabetes until around 2000, and now I see them everywhere - literally everywhere. It is actually more infrequent to go to somewhere densely populated, like a shopping mall, and not see someone corpulent in a wheelchair with one leg missing, sometimes both. Likewise I can’t remember the first case of cancer I encountered, but I remember being shocked, again in the early 2000s when I met my first case in a young man, in his twenties, with cancer and after that a couple of other older people dying of it, then both fathers, very old, getting it in their late years, and my grandmother getting Alzheimer’s. I know that you got dotty old women (usually women - I wonder why that was!), occasionally when I was a kid, but people who didn’t know where they lived, or what day it was - never.
I knew people who had had polio as a child, and my (much older) uncle had had Sleepy Sickness as a child, but I met MS for the first time in the 80s. I can actually look back through my life and see the illnesses changing from infectious diseases (and wizened old blokes that smoked like chimneys who had cancer!) to these weird new things.
While we might have been missing the Alzheimer patients, although I personally never met anyone like that till later in life, I never once saw anyone with diabetic amputations, so based on that I feel that they may well be right about the changing nature and severity of our illnesses versus those of our parents’ generation. You could misdiagnose Alzheimer’s and MS through medical ignorance, but I don’t think you could misdiagnose diabetic amputation!