subwayfares replied your post ty everyone <3 <3 <3
aw, it sounds like it was an atypical migraine, dont be too hard on yourself. I get lots of numbness in my migraines, so it sounded weird to me. whats the app? it might be a good idea for me to get back into tracking.i’d never heard of numbness being associated with migraines, but it sounds like it’s not unheard of? weird that none of my doctors ever mentioned it, especially when x-rays and mris of that area all came back normal.
My Migraine Triggers is the one i’m looking at. you answer a bunch of multiple choice questions related to pain levels, location, duration, etc. or input your own observations, it logs your diary entries and charts potential triggers. also tries to sell you excedrin, but it’s a free app and not too obnoxious, so i don’t mind much.
yeah, it’s apparently really common? my first couple of migraines actually presented more like a stroke - the left side of my body went numb/tingly/weak, I got confused and disoriented and upset, I had some visual problems and was really sensitive to temperature, but had hardly any headache at all. I don’t know why people never mention it, because honestly having parts of my body go numb and weak and tingly is fifty million times more terrifying for me than the more typical headache/nausea/photophobia migraines. when I get really high pain levels and more traditional symptoms, I can usually ignore it nowadays, or at least curl up in bed with a book and be more or less okay. but when I’m disoriented and numb/tingly on my left side and have stabby/burning/prickly pain all over my body, I almost always completely freak out and need somebody with me to coach me through it.
so I dunno, I wish people ever talked about all the weird freaky atypical symptoms migraines can have, because they completely suck and they can be really hard to cope with. I mean, it’s scary enough to have your face go numb when you know it DOESN’T mean you’re dying. it would be nice if, as soon as you knew you had migraines, angels came down from the heavens to give you a lifetime supply of ice packs and a netflix subscription and sunglasses and a chef and a massage therapist and a list of all the symptoms you might have.
thanks for the link, I will definitely check it out <3
That numbness/tingling/weakness down my left is exactly what I get, and have for years. The fact it occurred so frequently is the only reason I knew it probably almost definitely wasn’t a stroke. Pictures of my cervical spine were all normal. Massage and chiropractic adjustments felt good, but they weren’t fixing it. Neither did stretching, and normal pain killers don’t touch it.
I didn’t even know until last night that migraines could present without a headache. I knew what a “classic” migraine looked like, and I knew that was rarely what I experience, so I’ve had a hard accepting ‘migraine’ as an accurate diagnosis. The more I read about them, though, the more they sound like they explain nearly all of my symptoms?
I’m honestly getting a little angry that out of all the doctors I’ve seen in the last 6-10 months, not one single person saw fit to explain to me what “having a migraine” actually means. This is the first time I’ve heard terms like “silent migraine” and “full body neurological event.” It’s like a puzzle piece just clicked into place. I’ll certainly have something to talk about when I can get into see someone, at least, i’ll tell u what. >:(
Anyway, thank you. And you’re welcome! I hope it’s useful. <3
omg, babe, that is so almost exactly my experience that it is a little spooky. I had what looked like a stroke (at just barely eighteen), went to the emergency room, and after a CT and an MRI they said “we don’t see anything, it’s probably a migraine, see a doctor when you get home” and sent me on my way. and then I had increasingly frequent and severe migraines, until after a month from the first time they were literally non-stop. and eventually I developed the severe headaches and the photophobia and the nausea, but mostly it was intense, almost painful tinglies and numbness up and down my left side, so bad that I couldn’t focus or go to sleep or really do anything but stay in bed and cry. and when, after two months of this, I saw a neurologist, she didn’t really seem to listen to anything I said? and didn’t really seem to think that it was a problem that, at 18 and with no history of migraines, I had gone from nothing to completely disabled?
and I got another MRI and we concluded that there’s nothing structurally wrong with my brain. but nobody ever sat me down and made me feel like they were listening to me, and said that my symptoms were normal and that it’s fairly common for people with no history of migraines to just have something set them off and then have non-stop migraines for a few years. until I saw my neurologist this december, and he said everything was totally normal, and that this just happens sometimes, and it doesn’t mean I’m going to be broken forever, and it doesn’t mean I’m dying. and that it’s possible to treat. before then lots of people seemed like they were ignoring me, or went WOW THIS IS REALLY WEIRD AND SERIOUS WE’LL SEE IF WE CAN DECREASE IT MAYBE???. and basically I spent the first six months convinced that migraines didn’t work as an explanation, that I was definitely having them but that couldn’t be all it was, and that I probably had some degenerative neurological disorder and I was going to die.
and who knows, maybe I would have been convinced of that anyway. my symptoms are scary as fuck, and some of my friends are still scared for me even though I’ve explained to them that this is really inconvenient but not dangerous. but I think we need to change the way we talk about migraines, because I was eighteen years old, with a disorder that caused me freaky symptoms and decreased my ability to understand what was going on or solve problems or calm myself down, and that got worse with anxiety. (if you’re not sure if yours are responsive to anxiety / mi yet, that’s definitely something to keep an eye on, because it was mindblowing for me to realize that when I get anxious, I get migraines, and that then they turn into a vicious downward spiral that ends in me incoherent and sobbing.) and I didn’t have any way to convince myself that things would be okay? I don’t want to blame anyone, because I know most of the people in my life were trying and probably thought they’d told me I was fine. but it’s a messed up situation, and I wish we could change the narrative around migraines so that people like us don’t feel like they’re stuck in a horror film.
subwayfares replied your post ty everyone <3 <3 <3
aw, it sounds like it was an atypical migraine, dont be too hard on yourself. I get lots of numbness in my migraines, so it sounded weird to me. whats the app? it might be a good idea for me to get back into tracking.i’d never heard of numbness being associated with migraines, but it sounds like it’s not unheard of? weird that none of my doctors ever mentioned it, especially when x-rays and mris of that area all came back normal.
My Migraine Triggers is the one i’m looking at. you answer a bunch of multiple choice questions related to pain levels, location, duration, etc. or input your own observations, it logs your diary entries and charts potential triggers. also tries to sell you excedrin, but it’s a free app and not too obnoxious, so i don’t mind much.
yeah, it’s apparently really common? my first couple of migraines actually presented more like a stroke - the left side of my body went numb/tingly/weak, I got confused and disoriented and upset, I had some visual problems and was really sensitive to temperature, but had hardly any headache at all. I don’t know why people never mention it, because honestly having parts of my body go numb and weak and tingly is fifty million times more terrifying for me than the more typical headache/nausea/photophobia migraines. when I get really high pain levels and more traditional symptoms, I can usually ignore it nowadays, or at least curl up in bed with a book and be more or less okay. but when I’m disoriented and numb/tingly on my left side and have stabby/burning/prickly pain all over my body, I almost always completely freak out and need somebody with me to coach me through it.
so I dunno, I wish people ever talked about all the weird freaky atypical symptoms migraines can have, because they completely suck and they can be really hard to cope with. I mean, it’s scary enough to have your face go numb when you know it DOESN’T mean you’re dying. it would be nice if, as soon as you knew you had migraines, angels came down from the heavens to give you a lifetime supply of ice packs and a netflix subscription and sunglasses and a chef and a massage therapist and a list of all the symptoms you might have.
thanks for the link, I will definitely check it out <3
i hit rock bottom like every 2 weeks
I’m writing from a chronic fatigue syndrome (myalgic encephalomyelitis, post-viral fatigue syndrome, chronic fatigue immune dysfunction syndrome) perspective. CFS is associated with the following localized and/or widespread chronic pain symptoms: muscle pain and soreness; joint pain, soreness, and stiffness; nerve pain; headaches; migraines (also migraine without headache); abdominal pain (and irritable bowel syndrome); chest pain.
I am blessed with 24/7 access to a massage recliner, and even so, my bod hurts. all the time. searing pain, nauseating pain, nebulous pain, minimal but i n c e s s a n t pain.
analgesics are divided into categories of mechanism, strength, and whatever (and these days, narcotic is primarily a legal term, not a pharmacological class. when people refer to a painkiller as “narcotic” they usually mean “opioid” or “addictive”):
- non-steroid anti-inflammatory drugs (NSAIDs) are available over-the-counter and treat mild pain. common NSAIDs include aspirin, acetaminophen/paracetamol, ibuprofen, and naproxen. they’re not addictive, but taking too many at once or over an extended period of time is bad for you, so don’t do that. aspirin especially thins blood. ppl with liver problems, kidney problems, heart problems and blood disorders need to discuss NSAID/aspirin use with their docs to weigh the pros and cons. womp womp I got my wrist slapped for relying on acetaminophen.
these are not analgesics per se but they have that effect and therefore are used for chronic pain. they’re actually the first choice for chronic pain because opioids are do not fuck around with opioids.
- SNRI (e.g., Cymbalta) and tricyclic antidepressants
- antiepileptics e.g. Lyrica
- muscle relaxants sometimes
why am I even attempting to flesh out the WHO’s pain ladder when there’s a rung-by-rung breakdown on Wikipedia and here and look at all of these pain ladders.
like I would like to discuss painkillers with one of my many doctors but I know that I am not going to like my options. I do not want to begin an SNRI like Cymbalta because I was on Effexor XR for three years and lost both my appetite and my libido. I have told my therapist and primary that I absolutely should not go back on it because of the likelihood that I would relapse into a restricting-type eating disorder. plus my sex drive. I like that thing. I do not want to go on an opioid or some of the antiepileptics because my father is is addicted to/abuses them and I worry that (1) I would become addicted +/or (2) my father would discover that I am on an opioid/select antiepileptics and steal them because he has stolen my medication (which I needed for a condition [that he knew about]) from me before (it was Ativan then).
ok that leaves some options between tricyclics and the rest of the antiepileptics. cool, good.
bah
help??
So partysoft pointed out that our situations are really similar in a lot of ways, and I’ve gone through just about all of these meds, so I figured I’d poke my head in. tw addiction, addictive medications, medical/chronic pain stuff
My current diagnosis is migraines and/or cluster headaches that more or less don’t go away. I’ve been trying to deal with them since September and I’ve finally gotten treatment that means that, if I’m lying down with ice on my head and no stressors/triggers, I have a few symptom-free hours a day. Most of my pain is in my head, but I also have numbness & tingling on my left side & extremities, and sharp pain all over parts of my body.
So uh I’ve been on anticonvulsants (tramadol, gabapentin/neurontin) and a TCA (nortriptylene) with mixed results that are really not generalizable but that I can talk about if anyone cares. I was also on blood pressure meds (nadolol) for migraines, which are not on your list but w/e.
If you haven’t tried muscle relaxants yet, I’ve found them really effective for times when the pain is so bad that you just need to be out, or when it’s bad enough that you’re tense as all fuck and the tenseness and the pain are cycling. The one caveat is that they make me feel unbelievably vulnerable. I can’t and don’t take valium because it turns me into a weepy mess, so I take tizanidine, which is a skeletal muscle relaxant. And it makes me sleepy and floppy. Like, tripping onto my bed because muscles are hard sort of floppy. I respond really weirdly to most medications, so my reaction isn’t necessarily generalizable, but they do by definition relax your body. So if feeling safe where you are is a problem for you (which it is for me), that might be something to consider. It helps me to have a cup of tea, someone I trust around, or w/e when I’m on them, because I get nervous about my ability to keep myself safe when I’m on them.
As for opiates… yeah. Almost everything about using them for chronic pain sucks. They’re my only option (besides the muscle relaxants, which I use probably 2x/month since I stopped living with partysoft for the aforementioned reason) for acute pain relief, because basically the only thing I can take. The good thing is that hydrocodone, which is what I have, works really well for me. One of the problems I have, which I’m positive you have experienced, is that when I’ve been hurting nonstop really badly for a really long time or I’m having certain types of migraine symptoms, my emotional regulation and critical thinking skills go DOWN DOWN DOWN. The doses I take aren’t usually enough to get rid of my pain, but they bring it down to manageable levels, and the drugs tend to smooth out my emotions so that I go from being a total mess and feeling like I’m going to shake myself apart to feeling like the world is O.K. and I can cope.
And then there’re the bad things. I also have a significant family history of addiction, as do a lot of people I’m close to, so it’s really hard for me to NEED a drug that is so highly addictive and makes me feel so good. (Or even just not bad. I don’t know if you’re like me, but 80% of the time I don’t remember what feeling physically “good” is like, because a “good day” means you feel shaky and weak and nauseous and have pain but not so bad that you can’t think or do things.) Every time I take my hydrocodone, I have to go through the checklist. So, subby, are you in pain? Is it REALLY BAD pain? Are you SURE? Is the PAIN bad enough that you should have hydrocodone, or is it just that you’re a pitiful crying BABY who can’t handle a little headache? Have you been a good enough person to deserve narcotics today? Is getting rid of this pain important enough to you that you are willing to become forever addicted to hydrocodone and/or never have it work again?
It is, honestly, really dysfunctional, and every time I do it I know it’s dysfunctional, but I’m usually in too much pain to really manage my dysfunctional thoughts by that point. Even worse are my feelings around having/not having it. Last night I went out to dinner and realized as soon as we got to the restaurant that I was in unbelievable pain and wouldn’t be able to eat or make conversation or do anything but make sad faces if I didn’t get pain relief medication. And I’d forgotten it. And my mom didn’t have hers, and there wasn’t any in the car. Then, on the way home, I realized that I had some in my jacket pocket from the last time I’d gone out, but hadn’t bothered to look. Our thought processes are less than optimal when we’re in unbearable pain, and having medication that we need to stop that pain that is also incredibly addictive is probably one of the most twisted situations we could be put in. Every time I’m crying because I hurt so badly and trying to decide if I want to make the pain go away this time, while risking all future times and there will be many, I sort of want to punch the universe in the face.
But, I was actually hoping to talk about ways to manage taking opiates for chronic pain and walking the line between torturing yourself and using them irresponsibly. This is just what I do to handle being a barely-adult who uses hydrocodone as a part of her day-to-day treatment plan.
Obviously ymmv, but having guidelines makes me feel better, and might be a good idea if you do go on them.
Also, I don’t know what kind of migraines you have, but there are supposed to be great anti-nausea meds in this world if that’s a problem for you. I’ve been seeing doctors about this since October and it hasn’t occurred to me to ask for them until the appointment I have in a few days, so I thought the reminder might be helpful.
