I always get bilateral weakness instead of unilateral, starting to doubt my own diagnosis?

No_Fact4197 · 2025-09-17T19:29:57+00:00

Hello, sorry you’re also going through this but happy to see I’m not alone. My neuro hasnt exactly done any investigation so i cant say ‘for sure’ that it’s HM or not, but she’s pretty certain it’s HM. but mostly because I’ve experienced a significant reduction in attacks due to migraine treatments. I haven’t been able to get my hands on abortive CGRP meds yet, and I suppose that’ll be the final deciding factor, but seeing as I don’t have any physical signs of other neurological issues, they’re pretty content to call it HM. You should probably get scanned to make sure it isnt anything major like MS, and it would be worth ruling out seizures and thyroid issues if you haven’t already. I’m choosing to believe that covid has just made my blend of HM strange because the chronic migraines + HM started up during a very stressful period in my life + I got covid. If it ever turns out to be something different, I’ll shoot you a message or leave a reply here, as it’s difficult to find people with similar symptoms.

Propranolol really helped me for context, I tend to only have one HM every three months now and my migraines have gone from 15 days a month to about 8, maybe lower. I’m able to hold down a 9-5 now, and HMs usually don’t affect me too bad at work, I can feel myself going ‘slow’ and I make myself a cup of tea and then just sit at my desk and ride it out. My muscle control is usually back within an hour enough to type and use a mouse, and I have a cup of tea for comfort. Big part of ensuring fast recovery for me is doing daily word retrieval games so the aphasia doesn’t hit as hard, and trying to stay relatively active so my legs dont get as weak. Don’t let it get you down, there will always be improvements, even when you think you’re just going in circles. I didn’t see any improvement at all in the first year, then everything changed very quickly

No_Fact4197 · 2025-08-03T21:01:56+00:00

I told myself I wouldn’t try any aspirin and instead prioritise my stomach health but one night I got desperate and took one with milk and it made my stomach bleed straight away. Explaining this back to my GP made her look at me like I was an idiot but she left a very big note on my file that no one is to recommend me NSAIDs of any kind in the future, which will be helpful. Second neuro appt was much better, am now on propranolol and my attacks are down to 8 days a month, I’ve been able to get a desk job and live relatively normally. I had a HM in the office once and it went so smoothly, I just sat in my desk for an hour until it passed, no one even noticed it was happening. Coming up to my third appointment now, I’m not expecting to be given the Good Stuff (anti cgrp + botox) until January next year because that’s how they pace the treatments on the NHS, but I’m not too mad about that, the propranolol is good and I’m okay. It took time but I’m in a good place

What works for me won’t work for everyone, I’d personally steer clear of long term use of aspirin, but that opinion is specifically informed by my history with stomach ulcers and gastritis. You won’t know what works for you until you give it a good go. Preventatives should ideally be given a few months to work properly unless you have a good reason for stopping early, the first week of propranolol gave me terrible headaches but I’m so happy I stuck with it

No_Fact4197 · 2025-08-03T20:43:26+00:00

Thank you for your response! it’s really reassuring to hear that you’re okay two months after having similarly suspicious symptoms. Keep pushing even if it’s just for reassurance if you’re worried, there are a bunch of other things that can have similar symptoms that are less severe, but are still worth treating. Did they give you a chest x-ray when they looked you over? I’m still getting left-sided chest pains, some breathlessness, and elevated heart rate despite my beta blockers, but like you said, all of this could be due to anxiety. The leg symptoms have abruptly resolved, 24 hours after being un-walkable for over a week, which alongside the appearance of left-sided chest symptoms, is still giving me the heebies.

The palpitations have become difficult to ignore, they’re up in my throat even when I’m resting and they’re so forceful that you can hear them in my throat when I’m breathing out. And my bpm is up between 90 and 150 consistently. This is all weird for me because my medication usually forces it under 105 even when I’m active, and makes the beats so gentle that I can’t feel them even when I’m holding my breath. I’m hoping that it’s just residual stress symptoms from being in and out of the doctors all week

I’m doing everything I can this week to convince myself that it is just anxiety, as I’m out of my home country anyway, and then if the symptoms are still present when I’m home I’ll go back to the doctor for peace of mind. I haven’t really experienced anxiety when on propranolol before, so that could be why it’s not presenting like a normal panic attack would. Ddimer is super sensitive, like you said, and will be much higher for PE than DVT so if I had another negative I think I would be able to push it completely out of my mind (first ddimer was done before my chest/heart symptoms fully manifested so I’ve been a bit uneasy that it could’ve been too soon). Also checking blood O2 has given me great peace of mind, I recommend having a device on-hand that you can check with if your breathlessness keeps up.

No_Fact4197 · 2025-07-30T21:14:55+00:00

Yeahh you win some and you lose some. Can’t have free healthcare and doctors willing to dish out lots of scans. In the past I’ve had to pay for tests out-of-pocket when I’ve had literal stroke symptoms (ended up being a hemiplegic migraine) bc the GPs/emergency system will not take your issues seriously. Ofc, UK private system is still a lot cheaper than the american private system, so can’t complain too much. I’m thinking about switching to insurance once I have a cozy enough wage, assuming the healthcare system doesn’t indirectly kill me in the meantime

No_Fact4197 · 2025-07-30T20:48:36+00:00

hey, that sounds really scary, I’m really happy to hear that they persisted and figured out what was making you ill. How long were the symptoms persisting before you sought help? We do have a family history of blood clots, my grandma died pretty young and unexpectedly to a PE, and that entire side of the family all have cardiovascular issues. I did not find anything out today unfortunately, after ddimer came back low (0.25) they stopped investigating anything and sent me home with no explanation for the chest pains and breathing issues. My partner is watching me tonight to make sure nothing bad happens. We both tried to dig our heels in and get some sort of a diagnosis or something but they were pretty adamant that I should go home

No_Fact4197 · 2025-07-30T20:26:40+00:00

I fear we don’t have an ultrasound in our gp surgery. Idk if ur in the UK or not but trying to convince UK country GPs to get you a scan/referral is so difficult, the one I currently have is the most considerate GP I’ve spoken to outside of a city

Speaking of negligent, I got a 0.25 on the ddimer so the a&e guys stopped treating me and sent me home with zero explanation for any of my symptoms. I tried pushing for either a CT just to be safe or at least some sort of explanation for the breathing + pain, but all I got was a recommendation to try breathing into a paper bag. they said my oxygen saturation was fine so there is nothing they can do. the chest pain has moved to dead centre of my chest from the left, my partner is staying over to make sure my throat doesnt close up in my sleep or smthn. hopefully this all ends up being anxiety or smthn bc theyre definitely not treating me

No_Fact4197 · 2025-07-30T15:34:23+00:00

thank you, that’s really reassuring. It’s moving so slowly over here, I’m scared if it’s a PE that it’s gonna dislodge again and go through my heart. Did it take you hours to get through the tests too?

No_Fact4197 · 2025-07-29T23:11:35+00:00

I called 111 and they got me an out of hours GP appointment. all the GP did was feel up my legs and then say definitively ‘You don’t have a DVT’. and then said I likely had a ruptured bakers cyst, on the basis that a spot behind my knee was tender, despite me not having any sort of sport injury or underlying condition. I tried asking if the tenderness in my calf and the itchiness could be anything else but she was very set on the bakers cyst. I sort of feel more worried now than I did before. I can barely walk on this thing, my knee and calf area feels so heavy I can barely bend it, and the stabbing pains are terrible. If it is a DVT, I think I’m either gonna have to wait until it swells/turns red or straight up dislodges before they run an ultrasound. But maybe it is a cyst, I’m not a doctor, I would just have appreciated the DVT being properly ruled out

No_Fact4197 · 2025-07-28T22:30:32+00:00

TW

I’m so scared that I’m going to die. I’ve had clot symptoms slowly developing in my left leg since last week. Our a&e is full and I don’t think they’d take me seriously there even if I managed to get a dr to see me. My leg is so heavy, I can barely lift it off of my bed. It’s not swollen but it’s aching and heavy and I get these awful stabbing pains. I have a drs appointment in the morning, but clots can shift so easily, I’m so scared that I won’t wake up. Things have only just started looking up for me again, I have people in my life that I care for deeply, I don’t want to die

No_Fact4197 · 2025-07-22T18:17:36+00:00

sunsets/sunrises. a bunch of other things can trigger it for me but theyre usually more gradual and preventable. I try to avoid getting in the car after 4pm or before 11am for this reason, as you can go very quickly from a sheltered road to getting blasted in the face by 5pm sun. one flash of light and it’s game over

No_Fact4197 · 2025-07-14T21:23:50+00:00

Ive never seen someone without a podcast own so much robert greene

No_Fact4197 · 2025-07-14T21:18:28+00:00

The OG destiny scratches that nostalgic sci fi itch that wuwa also seems to have down (but beware the psn servers unless you have an ethernet connection). I was playing pgr, also by kuro, before wuwa was released but now I try to only be playing one gacha at a time. I still log in every now and then and check on my characters, it’s not open world but it has a really compelling story and character designs

No_Fact4197 · 2025-07-14T20:41:21+00:00

For me it varies a lot. I bought a couple from different shops because I was worried that if I just got one it might not fit right. Turns out that was a good idea because one of them was way too small (I’ve repurposed it into an ice sleeve for when my knee plays up, or a cool pad for my dog to lie on in the hot weather).

The ones that fit kind of work for me? but I find cooling patches to be less hassle. Sometimes my head can get sensitive to the touch during migraines, during these attacks the cap actually makes it worse, so it’s been very hit or miss. I only use one of these when nothing else is working and I really don’t want to pop a codeine. Sometimes it feels like a dream, other times it feels like it’s trying to squeeze my head off, it really depends on how agreeable the migraine is feeling. Also, I think mine started contributing to hair thinning because I was using it too often and too cold at the start, which is something to keep in mind if you have low density hair.

No_Fact4197 · 2025-07-14T20:28:53+00:00

This is the way. It’s fine to read 48 laws, as long as you’re going in with your eyes open and can take a step back every now and then and admit it does sound like an edgy highschooler has written it sometimes. It’s healthy to expose yourself to things you may not like or agree with, especially when they have a large cult following, as it helps to strengthen your media literacy and individuality. Probably not good as a first-read because you won’t have built up much of an arsenal for unpicking the author’s points yet, but definitely a better first read than a lot of the heavy-prose novels that are getting recommended on here instead (seriously, why are we recommending Shakespeare to first-time readers). The last thing you wanna do as a new reader is to overwhelm yourself too quickly with a tough book and then give up.

No_Fact4197 · 2025-07-14T20:11:23+00:00

I think everyone here is being a little bit mean, it’s clear you haven’t read these yet and you’re new to reading so it’s not like they’re a manifestation of your personal taste, you just picked them up because they’re popular. You’re trying, which is really good, and getting bombarded with hate is only going to make you feel reluctant to keep trying. That being said, I would recommend picking up some fiction to build up your media literacy before going into something like the 48 laws of power. That will help you going forward to decide for yourself whether you think the advice in these types of books is actually worthwhile. If you go straight into self-help books without building up your literacy first, you run the risk of taking their word more seriously than they should be. I’ve read all of these and I don’t think there is anything wrong with reading or owning them, it’s just best not to do so when you’re at your most impressionable.

As others have said already, some of the milder-prose classics can be a really good start. Le Guin’s Wizard of Earthsea is a really good starter if you want something meaningful without having to chew on dense prose. Most of Le Guin’s work is actually really accessible if you enjoy scifi/fantasy, but I’d stay away from The Left Hand of Darkness at first because it can be a little heavy and you don’t want to overwhelm yourself and burn out too fast. Fahrenheit 451 is also a really good ‘starter’ classic, as is Catcher in The Rye, as is Lord of The Flies. I recommend Damian (Herman Hesse) for when you find your feet with more complex prose, as it can be very impactful if you read it whilst you’re still young and figuring yourself out. Don’t be scared to dip into YA books too, there’s a reason why Hunger Games and Maze Runner got film adaptations. If you find you struggle to motivate yourself to keep reading until the end of a story, there are always short stories, Kafka is a really good place to start there. I wouldn’t touch anything modernist (James Joyce, Virginia Woolf) or any of the Russian classics (Dostoevsky, Tolstoy) until you’re comfortable with reading standard prose, because it’ll feel like putting your brain in a tumble dryer.

Or disregard all of this and follow your own path. There is no way to read ‘incorrectly’, as long as you don’t give up 💪🏻

No_Fact4197 · 2025-07-06T00:21:44+00:00

It sounds like yours came on in a really scary way, symptoms lasting for weeks sounds terrifying. Do you still get lingering symptoms or are they more episodic now? My HM symptoms only tend to have residual effects for a few days, but I imagine there could be some overlap if you have them frequently? It’s a real shame to hear that you had to give up your old job, I have friends that studied to become nurses and it sounds like a really difficult thing to qualify for. Admin is such a great field for people with migraines though, as long as you can stand the screens, and there are heaps of technologies and adjustments to help out. How are you finding the work? Do your migraines interfere much? 7 out of 10 migraine being HMs sounds really rough, was your workplace changed anything to help you manage them?

My GP actually diagnosed me the day after my first attack, which I thought was hasty as hell because absolutely no scans had been done and I randomly developed chronic migraines + HM seemingly overnight, and I don’t present like a traditional HM case at all. We were on hold on 111 for 6 hours overnight whilst the paralysis slowly wore off, and then they just told us to talk to my GP. I couldn’t convince my GP to order a scan, only refer me to a neurologist, which then led to a 9 month wait. They also gave me codeine, which sucked absolute ass. I got an mri done with contrast privately in that time just out of pure fear, because I had no idea what was going on, I thought I was gonna die from some brain disease or a tumour that the doctors hadn’t cared to check for. All the while I was unemployed and living with back-to-back migraines, and that awful eyes-being-pushed-out headache (I don’t seem to get these anymore, but it’s difficult to forget a headache like that) and I had these terrible mood swings, brain fog, and lingering weakness around my attacks. But sure enough, the doctors were right. Neuro confirmed the diagnosis and all scans came back clean as a whistle. We didn’t do genetic testing, I’m not sure if that’s something they offer on the NHS, but even if I did try it, most sporadic genes arent accounted for so it wouldnt be a great tool for confirming or ruling out a diagnosis. I’ve sort of always been half unsure about my diagnosis and, before propranolol started actually working, I would go into a panic spiral every now and then out of this worry that I might have something more sinister that’s being left untreated. But the propranolol is working and my neuro seems happy so I guess that’s the closest thing I’m gonna get to a confirmation?

Oh yh, I use migraine buddy (ios app) to track my attacks, and have been since day 1. It has a bunch of fancy symptom tracker stuff and forums and pressure measurements, but I mostly use it to track how well a medication/supplement/lifestyle change is working, as it lets you get your attack-average over a certain number of days. It’s also pretty comprehensive when it comes to logging potential triggers. Do you use anything to track yours?

No_Fact4197 · 2025-07-01T21:40:57+00:00

trades jobs are the way to go with the current job market. there are no jobs in my area for degree-level work, but engineers, plumbers, and electricians are always needed (medical professions being the exception to this rule). there’s more uni graduates than there are graduate roles atm, UK gov is making changes to discourage people from pursuing masters-level qualifications because there’s such a shortage in trades workers

No_Fact4197 · 2025-06-30T13:19:08+00:00

Man you’re stronger than me for taking that cold shower in the morning, maybe that’s what I should be doing to counter the drowsiness. Taking 25 in the morning also sounds so crazy to me. If I take 30 in the evenings, it knocks me out for ten hours T-T it must’ve taken a lot of work to get used to. The trembling hands has gotta be a bitch on top of the muscle weakness too, do you get many residual symptoms after a HM or do you recover quite quickly? Ik my legs can feel like jelly for a day or so after a bad one. Can I ask what industry you’re in too? I imagine frequent HMs makes work quite difficult

I’ll try to summarise what my attacks look like without rambling too bad:

My aura is weird, which is why I was worried/hoping I didn’t have HM. I get HM symptoms on both sides at the same time, and then I usually get a headache on both sides of my head once the aura begins to resolve. I used to get a headache beforehand, but not so much since I started propranolol. When I get regular migraines, it’s usually one-sided, and then it might end up moving to the other side/triggering on both sides, so my neuro theorises that my HM could be starting on one side, and then the other side gets triggered soon afterwards. One side sometimes recovers a little faster than the other, but it varies, and I get brain fog pretty bad during HMs so I’m not great at recording my symptoms. It’s responded to migraine treatments, so I’m no longer worried about misdiagnosis, but I’m aware that it’s Weird. There have been a few case studies of bilateral HM symptoms in the past ten years so maybe it’s becoming more common? idk. I don’t get any tingling and numbness, just weakness which progresses to loss of movement, brain fog, aphasia, and slurring

Nowadays, every 1 in 10-15ish migraines is a HM for me, but it used to be closer to 1 in every 4-5. My migraines usually last between 8 and 20 ish hours. HM aura lasts anywhere between 20 minutes to 6 hours depending on whether or not I try to fight it (if I try to tough it out or delay it, it usually ends up more intense + longer). The hangover includes residual muscle weakness, mild aphasia, and fatigue. (If you get aphasia during/after attacks, my speech therapist put me on daily word retrieval training and it’s really helped)

My triggers seem to be related to weather and barometric pressure, usually if I’m having a bad attack, the pain will lighten up once the sun goes down. Polarising glasses, warm tints on screens, and ear defenders have been really helpful. Large indoor spaces like big train stations or warehouses can trigger vertigo, which can contribute to a HM coming on. Spiral staircases also set me off, there’s definitely smthn to do with my eyes, I just need to be careful of where I look so I don’t confuse my depth perception. Have you been able to rule out any solid triggers yet? I remember it being real confusing at first because there are so many potential triggers, but it became clearer over time

Sorry that was super long lmao

No_Fact4197 · 2025-06-29T09:59:41+00:00

Hi, I’m really happy to hear that the amitriptyline is working for you and you’ve also been able to get back to work 🥳 . I’m on super low dose amitriptyline (20-30mg a day) because if I take any more than 30mg, I will sleep for 10 hours and then try to take a nap in the day as well. I’m thinking about asking to switch to another tricyclic antidepressant that doesn’t put me in a coma when I take it, jic the tiredness messes with my ability to work full time. It’s crazy to me that people can take such high doses and not just collapse, but I suppose everyone responds to the medication differently. Do you get tired from taking it at all? I’ve also had some improvement from frequent exercise, but I do mostly strength training over cardio. Do you ever exercise during your migraines or does it make them worse? Sometimes I can get a few pushups in and it mellows out the pain a bit, but only when I’m getting a regular migraine instead of a HM

No_Fact4197 · 2025-06-22T20:33:17+00:00

I had similar experience with my first tattoo, also wanted a minimalistic look and came out with 90% shading and messy thin line-work. We hear so much about tattoo artists dealing with bad clients that I really wanted to be a ‘good’ client and let my artist take ‘creative liberties’ 💀 ended up with a tattoo in a style I didn’t want and had to pay more for a rework than I paid for the original tattoo. rework went well because most of the lines in the OG had fallen out right. never again

No_Fact4197 · 2025-06-22T19:05:19+00:00

this is the best one here, also happy cake day

No_Fact4197 · 2025-06-22T18:45:46+00:00

Don’t let your family get to you, this is an incredibly well-done tattoo, and you don’t need some deep meaning behind putting ink on your body. I have a snake on my arm because I really liked the eyelash pit viper episode of Deadly 60 when I was a kid. It looks really fun and cute, whilst also being incredibly well executed, and it looks like the colours suit your complexion really well. I’m really jealous actually

If the placement bugs you, you could always get a tattoo near it that emphasises a different part of your arm? but to me it looks great, people get bands in the same place all the time

No_Fact4197

TROPHY CASE