That, however, wasn't the most interesting part. To me, the most interesting thing was that migraines seem to be connected to a lipids problem. I know I have (had) a lipids problem simply because I had gallstones. As I also suffer from migraines (much worse since I started TN meds), this seemed like a major breakthrough to me. But, even more interesting is a fact I discovered looking this story up - some researchers believe that migraines are caused by a hypersensitive reaction to pain - i.e. the nerves are firing up too much - yes, just like TN. Not a coincidence, surely?
So, my question is, how many of you also suffer from migraines? Did you have them before the TN came? And have you had a lipids problem too, like gallstones, or perhaps overly-high cholesterol figures? Let's share.....
I get migraines as well as TN. I have talked with many other TNers that get both. I don't have any lipids problems that I know of. Migraines are a disorder of the trigeminal nerve. Also some people with ATN get relief from migraine medication like triptans. I find too that some symptoms overlap each other. I get attacks of both around my left eye at the same time. It is completely dreadful.
Hi Jane. Migraines are a disorder of the trigeminal nerve? Really? I've never heard that before; I'm most intrigued. I shall go and look it up right now, thank you! Did you have your migraines before the TN, or vice versa? I think you said on your post on the other thread that you have ATN. Have you always had that or did you start out with classic TN?
I'm always trying to piece a picture of how TN functions, and trying to find a common thread, but I never seem to get anywhere. It really is a remarkably varied condition. I think the only thing that is ever consistent is that it gives everyone an awful lot of pain!
I started with migraines a couple of years after developing ATN. Also, nine years ago I had my gallbladder removed after a year of escalating pain. I always find your threads interesting.
That's very interesting, Shadow. So your 'progression' (if we are working with the lipids hypothesis!) went: cholesterol problem, ATN, then migraines. Mine is a bit muddier, in that it went probable, but infrequent, migraines, cholesterol, then TN. That said, though, one of the earliest radiologists I saw told me my gallstones had taken around fifteen years to get to the symptomatic stage, so perhaps the cholesterol issue really does come first! Would it not be ironic if TN proved to be some kind of cholesterol problem? Not that it helps us much, with the current state of cholesterol knowledge. There's more disagreement, controversy and plain lies told about that than just about anything else in medicine!
Hi, Iām not sure if youāre still on this TN thread but, saw your old post and thought it was so interesting because i also have TN, migraines, high cholesterol. (And other medical issues) It seems that my cholesterol medication also slightly helps my TN curiously. i figured this out because sometimes Iāll feel so bad in the morning or other med times i want to only take my TN meds (i have other medical problems, but TN meds are ESSENTIAL due to pain) so i would take only tegretol and neurontin. i donāt know why but for some reason i took my omega oils pil with them one day (prescription for cholesterol after bad side effects to other meds) but when i started taking all three together i got more TN relief.
And as in another discussion, my migraines will bring on a TN flare up, but also my migraines medication imitrex will help those specific bad flare ups of TN associated with migraines as well.
Wonder if anyoneās trying to figure this out lately?
Hi Tulips! The cholesterol connection is an odd one. Itās my personal belief that I actually got TN from eating a very low fat diet for a year and a half before I fell ill with it (due to gallstones). My TN went into remission after getting B12 injections and I think that fats, or the absence of them, affected B12 in my body and also adversely affected the repair of my brain. I think itās a fascinating possibility, especially when you consider that cholesterol problems go hand in hand with metabolic syndrome, which in turn is due to insulin problems, so really we might all have TN the way other people get diabetes and for the same reason. Itās a thought!
I have had ATN on and off for ten yearsābilateral in all three branches. I started getting migraine and cluster symptoms with flare ups around my eye about a year and a half ago. I am now having symptoms of occipital neuralgia too. All of my facial and head pain seem to have a connection to my occipitals and cervical spine. Physio and acupuncture actually help me a lot.
I have talked to lots of other TNers that also have migraines.
Hi Jane, yes I donāt think the migraine connection is a coincidence. I didnāt know I suffered from migraines until I got TN (I know!). I had had one in the early 90s and recognised it as such because I was so sick I couldnāt lift my head off the pillow without vomiting. I had the aura and a sensitivity to light that was so severe I couldnāt even have the electric light on. But when I got TN I was on Lamotrigine briefly and it gave me terrible migraines: nausea, motion sickness and an unrelenting headache for 6 weeks (that was fun). My neurologist took me off it, announcing that I suffered from migraines. I was really mad at her for labelling me; I was convinced it was just the drug, but after a while I came ot realise she was right. Unfortunately theyāve got worse with time and are triggered by noise, sunlight and smells - perfume in particular. I can no longer wear it and canāt stomach being stuck beside someone who has just put on body spray or deodorant. I find it really embarrassing that I actually get headaches from sounds and scents; I feel like a comple wuss and a terrible hypochondriac, but itās sadly real!
Iām sorry that you suffer from migraines as well as TN. Like one isnāt enough right? Your triggers are similar to mine. I have a lot of trouble with light. I feel like a vampire sometimes. The bright sun, florescent lighting and any lights during a migraine. Sound is a big one too.
For me I get the eye pain, migraine and cluster symptoms, ATN and ON all at the same time around my left eye and then up, over and down the back of my head. It is excruciatingly painful. I also get vertigo, blurry vision, nausea and dizziness. I havenāt found anything that helps with these episodes and they can last anywhere from a few hours to a few weeks at a time. They really come and go. I can go months without them and then suffer horribly for weeks or months.
It does seem like many of us have multiple issues going on. I have also been diagnosed with Myofascial Pain Syndrome and possibly Fibro as my pain now goes down my entire left side sometimesā¦or some other strange and painful sensations in my arms and legs.
Gosh, you poor thing, Jane - you really are having it al flung at you, arenāt you? Iām lucky, with the exception of things like being stuck on hot buses or having to be out in the sun longer than I expected, I can avoid triggering a migraine because I know so well what sets them off. I also get noticeable warning, in the shape of a building headache. Unfortunately, in the presence of something like someoneās perfume they can build really quickly - theyāre a bit like hurricane warnings; often too little too late. But mines are also good in that if I can get away form the trigger relatively promptly they will generally fade again. Iāve got about a half hour threshold - after that Iām usually doomed! Iāve always had the cluster headache over one brow. When I was on Lamotrigine this is where it started every day without fail. By the end of the day I would have the whole of that side of my head covered with peppermint oil. It used to get so bad my eyes would stream with it! Plus, of course, I had terrible nausea and the worst motion sickness in the world. It was so bad even walking set it off, I kid you not. I look back on it and wonder why I put up with it for so long! It was 6 weeks in total (some of that the withdrawal - the migraines lasted surprisingly long after I came off the medication) but it felt like a lifetime!
Wow!! Everything I am reading here is so poignant!! I also suffer from migraine headaches both ocular and non-ocular. Recently, I was diagnosed with TN1 and have been through two meds already ā Tegretol and Lamictal (lamotrigine). Both of which gave me horrendous hives and rashes. I am on my third med coming up ā¦ baclofen. During the past two days, I have had migraine headaches ā¦ I was taken cold turkey off of the lamotrigine. What a disaster!! The TN pain was in overdrive!! Therefore, a migraine occurred and one the way to work ā¦an ocular migraine in my right eye. Of course, the side where the TN is primarily located. I havenāt had TN that long but I will more than likely run out of meds that I can take very shortly. When do you make the decision to have surgery?? Just askingā¦
Hi Hummingbird, I am thrilled to find someone else who had allergic reactions to TN meds! Not thrilling for you, of course. I had a rash from Tegretol that built really slowly. It wasnāt till I was about 14 months down the line and I got a huge red target with a clear outer line that my doc finally diagnosed it as Erythema Multiforme - a drug reaction rash. I think Iāve been off meds for about a year now (in remission) and I still have a mass of big ugly brown patches on my inner thighs from it, fading REALLY slowly. Tegretol gave me a load of fairly serious problems: low blood sodium, ever-dropping white blood cells, anaemia and, of course, the bloody rash. I also had stupidity, terrible balance problems, prone to migraines, nausea, hallucinations and some of the worst depression known to man. Of course, the depression was probably partly just from the illness itself - cursed thing. I live in dread of my TN recurring because my side effects were so bad. itās a great worry to me about what Iāll do if I have to be on the meds long term at some point. Incidentally I was given Loratadine, I think it was - an anti-histamine - for the rash and it did make it better, so thatās always something you can try if you have a drug that only gives you that problem. Lamotrigine is allegedly a āgoodā drug, well-tolerated, and they actually use it to treat migraines, if you can believe that, but for me it was a living nightmare!
thank you for responding. Interestingly enough - I started with the new med this morning - Baclofen. It is a muscle relaxant ā¦ great. So I took the first dose and then wham I am drowsy. Not the best thing and trying to work.
I have to say that I the side effects from these meds are also probably due to the fact that I have become allergic to so many meds over the past year due to other medical issues. So what is another med that is put on my allergy list.
Funny ā¦ I go to see a new dr and pull out my printed conditions, meds and other lists and they office staff and dr are impressed. Doctors who see TN have to ask me what it isā¦ All I can do is smile!! (and hope that it doesnāt trigger an attack - of course!!)
Thank you all for being out there!! Good to know someone other than me has this nasty condition! Be safe and try and smile!
Hi - i am seriously thinking of MVD! Have been on the new meds -baclofen for two days. This stuff is awful!! Muscle relaxants and me donāt work!! I also found out that this is also in a cream i am taking for another ānerveā issue. God this is awful!!
Hi - undiagnosed about 1 year. Diagnosed since June. Are there criteria before having the surgery? It is worth the risk for me. I canāt live like this and fight other health issues as well. I have to do somethingā¦ ļø
I had TN for about 14 months before I went into a period of remission, which Iām still in. I think Iāve been in remission for just under a year. It was Vitamin B12 shots that turned it around for me. Because of that Iām a tad biased towards not jumping into surgery before youāve explored all the options. That said, if you feel youāve exhausted all the possible causes of TN and taken all the steps you can to improve your health, then surgery might be your best option. Only you can tell. I know surgery is far from a perfect solution; itās success rate is very varied. Certainly if you put a post up on here for people whoāve had MVD (and there are plenty) you will get a good mix of replies from people whoāve found it a lifesaver and others who have been very disappointed with it. That way youāll get to talk to the experts - people whoāve had it done - and youāll see all sides of the picture. And there certainly are criteria. Are you in the US? Other than the cost (!) itās not so bad there since you can just buy it, but here in the UK you would have to jump through a lot of hoops to qualify. But no matter where you are you have to be considered a good risk for surgery, as in they prefer to be able to see a vascular problem on an MRI, plus you need to be healthy, not too overweight or have any other problem that might preclude surgery. But your best idea is to put a post up and talk to people whoāve had it done; that way you can get the information and advice you need.
I started with migraines a few months after being diagnosed with atypical trigeminal neuralgia, I probably have around 2-3 a month that last a couple of days each time. I get the full aura vision, blocked peripheral vision, sickness, sensitivity to light and headache. I definitely think theyāre linked.
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