My migraines have become truly unbearable. A few days ago I got a weird tingly feeling in my crotch. It felt like menthol had been rubbed on it. At first I thought i was having some kind of allergic reaction. After hours the feeling spread down my right leg, then the next day into my right arm and finally into the right side of my face. I finally managed to get seen by a doctor who diagnosed it as a hemiplegic migraine, a migraine that affects one side of the body.
This is my second hemiplegic migraine but i didn’t recognise what it was as the first one presented differently. The last one, I felt dizzy and like cold water was being poured down my face and lost the movement in my right hand. I thought I was having another stroke that time and went to hospital but it was a hemiplegic migraine.
anyway this time after the diagnosis I took a migraine med that got rid of the problem… temporarily. Today it’s back. My crotch is again tingly and mentholly, it feels horrible and annoying and it’s spread into the right side of my face again. The right side of my face is not only numb and tingly but now paralysed. and of course I have a horrible headache that won’t go away.
On top of all my other issues, I’ve had enough. I want to go to dignitas for assisted suicide but where will I get the money? The first thing you have to do is join dignitas which costs almost £300 (for the joining fee and annual membership), at least it would be the first step to making it happen. I’ve heard that they even give discounts for people on low incomes but you have to join first before they’ll even discuss it.
Do you think it’s worth asking in mutual aid for someone to pay the joining fee for me? Obviously I wouldn’t expect anyone to say that’s what it was for - they could just say it was an easter gift or something. I am just so desperate for this to be over. I know earlier on I was relieved my foot surgery is over but these migraines just keep getting worse and worse. I’ll never have any relief. On top of the thyroid cancer and the issues from the stroke, the fact that I’m now partially sighted etc it’s too much to cope with but the migraines are worse than all the other things put together.
I don’t know if it would even be against the rules here to ask for donations towards an assisted suicide. What do you think?
I’m sorry to hear that you have to go through that.
On an individual level, the one true freedom we have is to choose whether we go on or not. I am not going to sit here and tell you to go one way or another. As long as it is an individual decision and not outside social forces trying to murder you, I do not see anything wrong with asking.
I’m just worried they’ll remove my mutual aid post or something. When i spoke about this at lemmy the only response I got was someone basically telling me to go away because it’s not the place to talk about this.
I figure if things are bad enough it needs to be an option but only for the person in question to decide. Perpetual health issues are the worst and I don’t think the healthy will ever fully understand this.
Migraines are evil, I get auras/visual issues with mine and it makes me afraid to drive at night. Its light and scent triggered for me if I go to the eye doctor I always get one, or if I smell vanilla for some reason. Did the paralysis stay? Migraines staying bad enough you’re at risk of developing Belly’s Palsy, my mom had that and had to constant mouth-facial therapy to get it to not be so bad.
Probably placebo, but I’ve found 500mg of ashwagandha seems to help reduce migraine frequency, they’re still guaranteed for me with the right triggers though. Also caffeine and wormwood, though with the other conditions you have going on I’m not sure if those are good options.
The paralysis lasted for a few hours this time, that at least seems to be going now although the tingling in my face and crotch are still quite intense, and I don’t seem to be able to move my right foot properly. Mine are often scent-triggered too and that’s something I have no control over. My landlady doesn’t gaf and uses scented shit in the house and if I go outside and someone’s wearing perfume or whatever, it happens. There is no escape. And sometimes they just happen with no obvious trigger.
Get a carbon activated air filter asap if you can. A normal 10 buck merv 13 air filter duct taped to a box fan can also help. I have a similar trigger, HEPA certified masks can help too
You can also get h11 filters and tape a computer fan to it.
I am not a doctor and I’m not one of those “psychedelics solve everything they’re special natural medicine” hippies, but I knew an extremely straight edge guy (didn’t even drink) once who got the worst migraines, he eventually heard that microdosing magic mushrooms worked for him! Might be worth looking into, I know nothing about why it works or whatever, maybe it was just a placebo for him.
Good luck comrade, hope you can find some relief.
I used to do them a lot but they’re impossible to get hold of now. Even tried growing my own on several occasions but it didn’t work out.
I’ve had similar atypical migraines and relief is possible! My doc initially started me on topiramate daily which wasn’t very effective for me. She then added amitriptyline which has been very effective for me at preventing migraines. I’m now taking 50mg of amitriptyline nightly and have started taking a monthly shot called Emgality. I hope to be able to stop the daily pills and just take the shot once per month. It’s really expensive but there’s financial aid available so I just pay $35 instead of $700+ per dose. I also have rescue meds if I should get an aura (such as a tingling in an extremity). I started with Sumatriptan but my neuro also recommended that I switch to compazine and Benadryl with these types of atypical or hemiplegic migraines. This has been effective as well but I haven’t needed the rescue meds in months. I still carry them with me on my keychain. The only expensive drug that I’ve mentioned is the Emgality shot which was not necessary for me to attain effective relief. I’m not a doctor but I’d be happy to chat about this! You don’t have to die to get relief!
I am literally on both of those drugs right now. They have done nothing. I’ve had every drug from topiramate to amitryptaline, to rimegapant to sumatriptan to rizatriptan, as well as other meds i can’t even remember the names of now, I’ve had nerve blocking injections in my head, supplements and dietary changes. Nothing works.
Also these migraines are not my only issues, I’m also a cancer and stroke patient and having serious issues with those things. it’s great that you got relief but I’ve struggled on long enough.
I’m sorry to hear that. I also have had cancer (medulloblastoma). Treatment for this is what seemed to cause me to start having these atypical migraines. I hope you can find relief somehow.
