Oh, I envy you, Ellen. No marijuana here for us Brits. There’s only one marijuana available here legally and that’s Sativex. They use it for MS patients. But in Scotland it’s not on the prescribed list so even poor MS sufferers don’t get it. I tried, but the neurologist at my local hospital dismissed it out of hand. I can’t work up the enthusiasm to try the OTC versions as they don’t have THC in them and are not subject to any controls for quality.
As for what triggered this, it’s hard to say, but I was in the process of splitting from my partner of 40 years, so I’d guess stress! There’s hardly a disease, from the common cold to cancer, that doesn’t seem to be triggered by stress. Isn’t it odd though that doctors never ask you about it? In fact, they actively don’t want you to bring up your stress/anxiety/depression. Despite us supposedly living in more enlightened times, science still holds on grimly to the idea that we are just floating brains hanging above disordered and unrelated bodies.
Ain’t that the cat’s meow -getting rid of one pain in the A and getting
your mouth pain back.Almost a curse.I am so sorry.How horrible is that.You
should be just enjoying your space now and now this is back.
My mouth stuff started just after my one son got into assisted living.
It is almost like my nerves had been saving all this pent up stress and as
soon as I had a chance to relax my nerves say- me first.
Have you read Full Catastrophe Living?
I think we both need to rebuild our nerves.but we need a break from the
pain while doing it.
Well ,the first thing I was told to do was Mindful Meditation.That would
take care of the pain.Now it is music,that will take care of the pain.
Now it NCT or something.
There is something to it.We do need to relax.But how can you when you are
in pain.?
That new doc I had the hissy fit with made me sign an opiate contract(I
think she reneged before me!) that had one point saying I don’t use
marijuana.Not sure what that was about.Because I had already told her I use
it.
So many doctors don’t like the idea.I have not had any success with the
marijuana so far-except the stuff that lets me sleep’.But I am getting
encouraged by the reports so I will try again.
stress definitely makes me worse. I do tech support for a living, so it’s almost always stress. I am used to it unless it’s a shit hit the fan situation. meditation, or just taking a few moments for breathing exercises help, and doctors are quick to suggest it, but how am I supposed to spend the entire work day chanting OMMMMM. seriously?
25 years ago at my first appt with my new neuro after moving to a new city he said in no uncertain terms Reduce Your Stress…Do Not Get Upset Over Things You Can’t Change…
He also told me to get up at the same time every day, didn’t matter when I went to bed, but it was critical to start each day at the same time. I started getting up at the same time and my migraines decreased. I went back to meditation and the pain was easier to manage. About 10 years later I walked away from my career and found just a job that paid the bills with no stress. I changed my shift and haven’t used an alarm clock in 15 years. I purged my life of toxic relationships and people who aggravated me for no good reason.
Do I still have migraines? Yes. Did I develop ATN? Yes. But I feel like I have a handle on it and I respond really well to medication intervention and I firmly believe lifestyle has a great deal to do with it.
I guess its like that saying … The tree that bends with the wind will not break. I bend with the pain. I allow my various issues to dictate what I do but not who I am. By doing this I am able to do more.
What in the name of God’s an opiate contract? I’m guessing something not good - it has doctorly bureaucracy all over it just in the title alone!
And yes, relaxing while in pain - not easy. Especially as the nature of TN (type 1 certainly) is unexpected and unpredictable shocks. I remember when my TN first struck that’s what it quite literally did - zapped me out the blue. At the time, of course, I had no idea what it was and there appeared to be no pattern to it. Now I understand its little moods and foibles. But the first time was very severe nd I was getting shocks all day long. It loathed any kind of temperature change, even by a degree or two, so I’d get a run of shocks every time I went into the house, or into a shop, or stood under an air vent or fan. I defy anyone to relax in those circumstances! It’s like them telling you to relax for dentistry. How, exactly? If you are consumed with terror relaxing feels insane. It’s like telling someone to relax while they face down a 12ft polar bear with a sore head.
I went into remission the first time with Vitamin B12. I had read about the neurological connection to low B12 and thought I fitted the profile. I got tested and it was on the low side, although not officially deficient, so I pleaded and begged for a course of injections and - bingo! - the TN went into remission. I still get a B12 shot every 4 weeks and believe it’s what stops my TN getting as bad as it was the first time, but who knows? Might be one big coincidence.
You’re dead right, Egoiste, as I was just saying to Ellen, relaxing while under pressure from random pain & constant fear (plus a job in your case) is definitely far worse than trying to chew gum and walk!
Oh getting up a the same time every day - you’ve struck a nerve there, Azurelle. I just cannot do this. I have sleep problems when I’m not on drugs (insomnia, Restless Leg Syndrome and overheating) but when I’m on drugs it all goes to hell in a handcart. I just cannot get up in the mornings. I’m currently getting up at 3 in the afternoon, thanks to Nortryptiline, which means I get about one hour of low daylight. Fortunately, I’m a night owl, but it’s horrible being so out of touch with the rest of the world.
If I ever make the mistake of having caffeine, even small amounts like in chocolate, or decaffeinated drinks, I will, quite literally be awake till dawn, absolutely irregardless of how tired I am. I don’t know what the hell’s wrong with my brain, but I’ve always felt my migraines, RLS, and now my TN, are all connected with my inability to sleep properly - it’s like I’ve got an over-excitable nervous system.
I never said MORNING! Just get up at the same TIME, or approximate time. I work third shift and get up naturally between 2 and 3 in the afternoon every day.
The theory is that it doesn’t matter how much sleep you get, what matters is when you are pulled from sleep – when your sleep is interrupted to start your day since the majority of people use an alarm clock. It all hinges on your personal sleep cycle and what happens when your sleep pattern is broken.
As an example, I can’t get up between 8 and 9am, it doesn’t matter when I went bed. If I get jerked from sleep in that 60 minutes I will develop a migraine and even when I wasn’t working third shift I never woke up naturally in that hour. There’s something about my sleep pattern that makes that a critical time frame for me. In the same way I never, ever fall asleep between 2 and 4am. If I don’t go bed before 2am I will catch a second wind and be wide awake until at least 4am. If I can get to bed and get to sleep before 2am I will sleep through that time. Then I can get up between 4 and 8am without a problem but I can’t get up between 8 and 9am with problems.
Did I figure this out in a week? Nope. It took years of migraine tracking and sleep research. Since I would be up from 2am on I used to think I had insomnia. Keeping a sleep journal I found the pattern and learned that if I went to bed before 2am I would get good, solid sleep.
There’s a school of thought that migraines, sleep walking, sleep talking, insomnia, and night terrors are all linked. And now I’ve been told that odds are my ATN is a secondary issue to the migraines, 30 years of chronic swelling has damaged my TN nerve. Considering I have migraine, I sleep talk, sleep walk, have night terrors and serial nightmares I can’t say that I disagree with the theory.
They simply don’t know enough about the brain or nervous system yet. Unfortunately we’re on the cutting edge of this field.
Well, it’s nice to know i’m not the only person who doesn’t get up till the afternoon, Azurelle. But at least you’ve got the excuse that it’s your job that makes you do it. Me, I just look like a lazy so and so! Ever since I was a child I’ve had problems with early rising. We did an odd daylight saving thing here in the 60s(?) and we were all going to school in the dark during the winter. It was a nightmare. It’s the first time I remember getting SAD type effects. If I’m got up before my time it can literally reduce me to tears, and just like you, nearly always induces a migraine, although I think mine is just sleep deprivation rather than anything to do with my internal clock.
Just as an aside, one of the neurologists I saw was a migraine specialist from Argentina and she said migraines and TN are closely related and tend to go hand in hand. I only discovered a few years ago that I was having ‘stomach migraines’ as a child. I reckon quite a lot of adults with IBS are actually stomach migraine sufferers, or were in childhood.
P.S. Sleep deprivation always triggers/worsens my TN too!
Woman, we are two of a kind! My mom put me in afternoon kindergarten because I was such a nightmare to get up in the mornings! >>>laughter<<< I have never, ever functioned in the “morning” like so many other people. One of the happiest days of my life was when stores started being open 24/7 so I could shop at 2:45am!
I bet you’re right about IBS, that, or it’s stress. My niece has stomach migraines, I have my fingers crossed that she’ll out grow them since she’s only 13 right now. Her dad, my brother, also had stomach migraines and avoided unnecessary appendicitis surgery by a hair.
The more I learn the more it amazes me how many incorrect medical procedures are done on TN/ATN and migraine people.
Do you get fatigue as a sort of aura to either migraine or TN? I think I’m starting to see a pattern of extreme fatigue the day before my ATN kicks up.
It’s interesting to me to see that someone else has a coronation between Migraines and ATN. My neurologist told me the last time I saw her that there appears to be a coronation between the two. I began having severe migraines when I was 13 years old. In fact it took me awhile to be diagnosed with ATN because I thought that they were related to my migraines or chronic sinus problems. I couldn’t figure it out as my nasal Imetrix has always worked well on my migraines. Then an ear nose throat doctor caught that it was ATN. A trip to the neurologist six months later confirmed it.
Amitriptalin worked okay for my Fibromyalgia but I was able to control that pain without it after awhile. When I was prescribed 50mg of Amitriptalin for ATN there was no relief. Personally I know that I would never use Nortiptalin as it was the first antidepressant I was prescribed for depression over 20 year ago. It was harsher in my body than Amitriptalin and I hated the foggy feeling of being on it. I could never handle being on it for more than a year. Good luck.
Oh, I hear you on the store openings! I love the fact that most places open late nowadays and nothing is more likely to make me thoroughly p’d-off than shops that shut at the traditional 5. I also loathe restaurants that are cleaning up around you just before six. My stomach follows my sleep patterns!
Fatigue is a sort of chicken and egg thing for me with migraines, because it’s often extreme tiredness, and particularly early rising, that will trigger them. I do get useless muscles though and my legs feel like lead. It’s not uncommon for migraines to hit me when I push myself too hard and going round lots of shops, with smells, tinny taped music and very bright lights make them even more likely, so I actually associate migraines with leaning on shopping trolleys like a zimmer frame and dragging each leg in front of the other as if they weigh half a ton.
My most common giveaway that a migraine is due is pressure in my sinuses along with a stiff neck. If I can barely turn my head I’m generally doomed. If I find myself sitting digging my fingers into my right eyebrow it’s already too late. (I just realised I always get them on my right-hand side, same side as my TN - that can’t be a coincidence!)
I’ve suffered from motion sickness since I was young too and if I get trapped on a bus with someone wearing strong perfume, I can guarantee I’ll get off the bus with a headache. As has gone by I’ve got more and more sensitive to smell. I can no longer wear scent and have the devil’s own time finding deodorants I can use. They just don’t do unscented deodorant for some reason. I can get soap easily - praise the lord - but I end up sniffing all the deodorants to try and find one I can tolerate. Ironically, the cheaper the deodorant the less scent it generally has, so for once being a poor sensitive little migraine-suffering soul pays off - literally!
Thanks, Glosmenagerie. I’ve been the opposite and found Amitriptyline affected my mood rather badly, but I didn’t seem to have the same problem with Nortryptiline. That said, I’ve found it pretty useless for pain control. I’ve also noticed that it seems to have to keep being pushed up to be effective. I’m up at 50mg and back to getting shocks every day again, whereas it was controlling the shocks at 10mg when I first started. I read someone else saying something similar on here, that they had to keep titrating the dose upwards to keep making it work. It doesn’t seem to build up in your system the way anti-convulsants do.
Anyway, I’m off to the doctor tomorrow to go back to anti-convulsants (boo! hiss!), but I’m going to try Oxcarbazepine in the hopes that it’s a little kinder than Carbamazepine.