I had a horrible #trigeminalneuralgia flare up last night, lasted until around 7:30am. I will never get used to this shit and it's been almost 6 years since being diagnosed.

#chronicillness is really something else. I was eating pain meds like it was candy and only getting a mild buffer. So thankful that today is a better day.

In 2020 I had my first experience of constant nerve pain in my face. It lasted for around 3 months and I was diagnosed with atypical trigeminal neuralgia. Defo worst pain I've ever experienced.

I was relieved when it appeared to be a one off.

Two days ago it started again. I could cry.

It could easily pass in a few days. Let's hope for that.

#TrigeminalNeuralgia #ChronicPain

Full on #TrigeminalNeuralgia. So today is an Eleanor Roosevelt day: “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”

I can not do this. But apparently I am.

The quote sounds so noble, but there's no choice here. It's just fucking happening. It's being terrified that there is no relief, it's being scared that friends will get fed up, coz you are such a bloody flake, + you must be rotten company moaning all the damn time.

Also, TN usually improves for me in warmer weather, so I'm so disheartened atm, it's possible that things have deteriorated.

When you struggle with #chronicpain it's so important to stay in the present moment. Because when you're finally having a good pain day it's easy to not even enjoy it because you're anticipating/anxious of when the pain will come back. Or sad over what you weren't able to accomplish while you were in it.
To be present, you have to learn to flow like water and embrace each pain free day/moment fully. And it's hard to do sometimes...
#trigeminalneuralgia #blackmastodon #blackfedi #health

[Automatic repost https://twitter.com/dystobot/status/1659643869112287233]

RT @HeartBravoFl: I am sure #EhlersDanlosSyndrome is not helping any of this. I was so embarrassed. My daughter was yelling not to call ems this normal. My normal sucks.#NEIS #Dystonia #Trigeminalneuralgia #OccipitalNeurgia #hemifacialspasms

[Automatic repost https://twitter.com/dystobot/status/1659642683965448204]

RT @HeartBravoFl: All this flared up my Neuro problems. My husband had to come get me. I can not walk well. Arm and face is spasming. Which hurts since I have #trigeminalNeuralgia My foot keeps twisting so I can not walk well #dystonia. My voice is impaired. Head hurts #occipitalneuralgia. PT3

These are the #CBD gummies btw (or rather, the company that makes them).

https://moonwlkr.com/?afmc=34n

Full disclosure that's an affiliate link. I think it does 10 bucks. They have vapes, and tinctures too, also some with #delta9 THC. Pretty much the only thing that helps with my #TrigeminalNeuralgia or my insomnia. Also helps with nerve pain in my joints and limbs. Flavors are pretty good too.

I'm in pain real bad right now, and don't have anymore, hence the help request above 😭

Why is it ok to make such a song + dance about how much weight I've lost?! My secret? It's this One Weird Trick called having #TrigeminalNeuralgia + not eating enough. Oh + ta for making me realise what you REALLY thought of me before. I take ZERO joy in your 'celebration'.

f.o.

*cries*

I recently discovered an app for micro #podcasting and finally recorded my first one. My voice is a bit groggy from pain meds (FU #trigeminalneuralgia) but if any night owls are up for a #tarot and #oracle reading or just have 5 mins to burn— check it out! https://www.swellcast.com/t/STapBzSID2nDdHD

#divination #podcast #tarotreading #latenight

Hello loves, I realise I've committed a bit of a Mastodon faux pas and not done an #Introduction so let me offer you a belated one.

Recently aquiring a #disability/ #chronichealth condition in #TrigeminalNeuralgia has upended my life. To that end I was 'rescued' by my forbears in the shape of the 200+ love letters they left behind - so I turned them into the #podcast 'My Love Letter Time Machine' and now spend large chunks of my life in the 1880s. Mainly to escape the pain, but also in the hope that it might eventually keep me and the cat fed. I love #gardening when I can manage it, bit of a #coffee snob, and adore #music. Learning to play the #piano and have a mild (cough) #fanfic addiction. I love playing #Zelda and #jrpgs. Recently divorced. I live in West #Wales and can get by in #Welsh. I'm bi, and #TransRightsAreHumanRights

V happy to chat and make new friends.

#Intro #TwitterMigration #mastodonintro

Canceling appointments and plans because you’re too ill to make it to them is self-care - not something to feel guilty for.
💙
#trigeminalneuralgia
#NEISvoid #DisabledinSTEM #selfcare #hidradenitissuppurativa #Chemo #autoimmune #disability #SelfCompassion #accessibility #spoonie #chronicillness #POTS #EDS

Sorry I haven’t been on much as of late. Been dealing with TN attacks again. It feels as if my face is being kicked in with a steel toe boot. Been trying make an appointment with my GP, but with the kids being sick I can’t find the time. I hope that when I do manage to get one he doesn’t prescribe #carbamazepine since I took a severe allergic reaction to it.

#trigeminalneuralgia

Como otros años, durante el mes de Febrero daré visibilidad a diferentes enfermedades raras, ya que es el mes de las #enfermedadesraras.

La #NeuralgiadelTrigemino una #enfermedadrara del Sistema Nervioso Periférico, también conocida como #dolorsuicida por causar el #dolor mas intenso que se conoce

https://somosdisca.es/que-es-la-neuralgia-del-trigemino/

#neuralgias #neuralgia #trigeminalneuralgia #salud #dolorcronico #dolorsuicida #Somosdisca #gentetitanica #febrero #febreroraro

Brain tumor headaches are horrible. 😖

#NEISvoid #DisabledinSTEM #BrainTumor #TrigeminalNeuralgia
#Neurology #Pain #Disability #Neuro #Migraine #Tumor #BrainTumor #chronicpain

Chronic illness things - the only shot glass I own. Its sole purpose is to contain the magnitude of medications I have to take to barely "treat" my chronic illnesses.

#Spoonie #HidradenitisSuppurativa #chronicpain #neisvoid #DisabledinSTEM #Sepsis #CPTSD #trigeminalneuralgia #rheumatoidarthritis #disabilitymastodon #autoimmune #POTS #HS #TBI #dermatology #endometriosis

[Automatic repost https://twitter.com/dystobot/status/1611372084008976384]

RT @LunaRivera96: Sending Hugs To All Chronic Illness Warriors!
#SLE #lupus #Fibromyalgia #LymeDisease #MultipleSclerosis #arthritis #rheumatoidarthritis #epilepsy #CRPS #Dystonia #Dysautonomia #sjogrens #diabetes #Chiari #trigeminalneuralgia #diabetes #migraines #thyroiddisease #sarcoidosis https://t.co/0sMVrZ651S

Personally I think I look absolutely adorable but somehow my kids would prefer I don’t wear an heating pack wrapped around my head in front of their friends.

Teenagers are weird.

#MultipleSclerosis

#TrigeminalNeuralgia

[Automatic repost https://twitter.com/dystobot/status/1611014794072539139]

RT @LunaRivera96: Chronic Illness Grief Is Real!
#SLE #Fibromyalgia #lymedisease #pancreatitis #depression #arachnoiditis #migraines #thyroiddisease #sjogrens #sarcoidosis #endometriosis #gravesdisease #diabetes #trigeminalneuralgia #dysautonomia #CRPS #epilepsy #crohns #COPD #LongCovid #dystonia https://t.co/NyR0VDlwOf

If a disabled and/or chronically ill person purchases something (assistive devices, etc) to help make their lives less painful, don't make fun of them. 😔

#Ableism #ActuallyAutistic #NEISvoid #DisabledinSTEM #Chronicillness #Migraines #Autism #trigeminalneuralgia #Overstimulation #photosensitivty #Chemotherapy #HidradenitisSuppurativa

If a disabled and/or chronically ill person purchases something (assistive devices, etc) to help make their lives less painful, don't make fun of them. 😔

#Ableism #ActuallyAutistic #NEISvoid #DisabledinSTEM #Chronicillness #Migraines #Autism #trigeminalneuralgia #Overstimulation #photosensitivty #Chemotherapy #HidradenitisSuppurativa