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My little mascot…

Last night I really struggled to get some sleep. On Friday, while walking from a shop to a taxi, I lifted my left leg to take a step and I felt a twinge in my lower back. Then, when I went to lift my right leg to do the same, I nearly crumpled to the floor as an intense cramp went through the entire of my lower back. I managed to hobble my way to the taxi and got myself home.

I’ve been using heat pads and an anti-inflammatory gel and it’s given very little relief, but I persevered. Then, last night at around midnight I had a POTS episode whilst I was on my way to the bathroom before bed. I fainted and hit the floor hard, according to my mum. I’m just glad I wasn’t conscious when I hit the floor because I can only imagine the pain I would’ve felt.

After the episode, I really struggled to get up, get to the bathroom and get to bed. But I managed it. I took extra painkillers but I just could not get comfortable. I tried lying on my side with a pillow between my knees, I tried lying on my back with a cushion under the curve of my spine. Nothing was working. Eventually, I gave up and pulled out my laptop to do some more notes on my novel.

As usual, Loki was sticking to my side. Like he normally does when I’m unwell or in pain. He came up for lots of cuddles and fusses. Until he settled behind my fan, and slowly crawled up until his head was peeking at me from behind the screen. He looked so cute, I had to take a photo. My little mascot. Somehow… He always makes me feel better. And I feel like he really does love me back.

Anyway, I spent the night just tapping away on my laptop, listening to quiet music while I made my notes and tweaks. I just wanted to show you all how much of a good boy he is. Don’t worry - he was given lots of treats and belly rubs.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #EhlersDanlosSyndrome #EDS #PosturalOrthostaticTachycardiaSyndrome #Jointpain #Fainting #BackPain #cramps #Pain #InterstitialCystitis #BPD #NAFLD #LiverDisease #FattyLiverDisease #Diabetes #Migraines #Cats #Animals #TherapyPet #TherapyAnimal #therapycat

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How do you say no to your little nieces, nephews and children?

I’m currently a first time aunt (although my sister is 21 weeks pregnant right now) to an absolutely gorgeous and clever little boy named Oskar. He’s 22months old, and I absolutely love playing with him. I chase him, I crawl towards him on my hands and knees. I play rough with him (he loves this), and I tickle him until he’s belly laughing.

He is truly the light of my life - since he was born I’ve refused to self harm and I’ve really started taking better care of myself. But sometimes when we’re playing, I start to get pain or get really exhausted and I have to tell him no and sit down for a bit. But then he comes over, grabs my hands and tries to pull me up and make me follow him.

It really breaks my heart because I know he doesn’t really understand and he thinks he’s done something wrong. How do YOU communicate that you need a break? Is there a way to do it so he understands? He can get quite upset. Aside from his dad, I’m the only person that really plays with him and makes him laugh.

Any and all advice would be greatly appreciated!

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Jointpain #Diabetes #InterstitialCystitis #Migraines #Depression #Fatigue #Children #Advice

32 reactions 9 comments
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Joint Pain

Hey, everyone. I hope you’re all doing a lot better than I am.

For the last four days it’s been about 30°C and I’ve had enough.. Tomorrow it’s meant to hit 32°C.

I’m doing everything I can to stay cool and hydrated - I’m drinking between 2 to 3 litres of water/squash. I have a fan on me 24/7. Somehow, I’m managing alright overall - I haven’t fainted or blacked out. And at night time I’ve pretty much been falling asleep very very quickly when I get into bed.

HOWEVER… My joints are killing me. They’re a little swollen, very achy and sometimes even feel like they’re creaking, if that makes sense? It’s mainly my wrists, fingers, knuckles, elbows, knees and ankles. If I squeeze my fingers together or squeeze my wrists it makes the pain better. Which is weird but that’s what happens. But I can’t exactly sit here and squeeze every joint. I don’t have enough hands, haha!

Does anyone have any advice for it? It’s far too hot to wear my compression stockings - I’ve been keeping my feet elevated a little bit instead. Is there anything else I can do?

Thank you all in advance

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #Jointpain #SoreJoints #PainfulJoints #Heatwave #toohot

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Since you all loved the photo of him the other day… I present - Loki being cute.

As I said, you all loved my beautiful Loki the other day. Today, he’s been curling up around my feet cus my blanket was too warm for him. I’m feeling much better today - the antibiotics have done their job, as have the heavy painkillers.

Thank you all for wishing me well. I hope you all have a fantastic and easy week ahead of you!

#chronicillnesswarrior #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #InterstitialCystitis #ic #bladderdisease #BladderPain #ChronicPain #Kidneyinfection

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Animal Intuition - He Knows.

So, I’m in the middle of an Interstitial Cystitis flare and possible kidney infection and I’ve been in so much pain with it and I’ve been utterly miserable. Mostly just curled up on my bed with a heat pad on my bladder area.

Loki has been the sweetest kitten/cat. Whenever I’m unwell he does tend to stay close to me. But earlier while I was half laying down, he just shuffled up to me, and laid right across my lower belly, nuzzling me and every so gently padding at my belly. He has completely melted my heart. He’s been doing it all morning. If I get up to get a drink or use the bathroom, he sits and waits and then when I’m back, he comes back and lies across my belly. 🥹

I love him so much.

#chronicillnesswarrior #ChronicPain #InterstitialCystitis #BladderPain #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #BPD #Depression #Anxiety

69 reactions 15 comments
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Therapy Ending...

Therapist tells me that we may be done with goals on the plan by the end of this month which means it will lead to a discharge... if I'm ready.

Am I ready? That is the question.
Do I think I need more work? I don't know.
If yes, where am I needing the work? I'm not too sure.

I've been on this journey for 2 yrs now. There's moments I feel I'm "healed" then there's those days of where I'm not...

How do ppl continue this journey for yrs?! Yes, we all have different stories. Different wounds. But, how do y'all stay on this journey for so long?

I've had 3 therapists these last 2 yrs. & now, I may be seeing none. I need to sit with this & see if I really need to continue this journey..

#Anxiety #Depression #Migraines #Insomnia #Trauma #Therapy #PTSD #undiagnoised #Healing

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1st headache in a couple weeks

While I am grateful to have found a daily med that has taken me from 3-4 awful headaches/ #Migraines weekly to the first one in 3 weeks, I almost forgot how to troubleshoot one/remember which health aids I have available (cold cap, caffeine, Aleve, something to eat, electrolytes/water etc).

Currently feelings frustrated 🥴 as it feels like a setback, even though I know it's progress.

Anyone who knows this feeling?

#Headache #CheckInWithMe

3 reactions 1 comment
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How do I explain myself to my dentist…?

So, when I was 7 years old I had a pretty horrific dentist experience. Basically, I had to have a tooth removed. But the dentist said that because it was a baby tooth, I wouldn’t need any numbing injections. He was dead-fricking-wrong. I remember some nurses holding me down, my mum shouting, and what I can only describe as a pair of pliers. I remember screaming, and there being a lot of blood.

So for years I’ve been terrified of them. I couldn’t even walk on the same street as a dentist’s office without having a panic attack. In the last couple of years I’ve had to have my GP give me diazepam (Valium) just so I can sit in the damn chair. I’ve slowly built trust with my dentist, and I don’t need a huge dose to get me in the chair anymore.

Anyway, late last year I finally got to a point where I no longer needed to have any more work done. I’ve had four teeth removed (thankfully back ones), and several fillings. At least 9 of them. Since I started going regularly a couple of years ago, I’ve learned how to brush and floss properly. And according to the dentist at my last appointment last year, since brushing and flossing properly, I’ve managed to reverse the remaining decay I had left. Or, the start of the decay that was there.

But here’s the thing… The last 3-4 months have been so so stressful. I really stopped taking care of myself. I stopped washing regularly, I stopped eating properly and consumed loads of sugar (I’m type 2 diabetic), I stopped brushing and flossing my teeth, I barely took my medication… I was spiralling into an abyss. I felt angry and hopeless literally 24/7…

Then 6 weeks ago I spoke to my GP who then increased one of my antidepressants. Finally, a few weeks ago I started to feel a bit more like myself and I started taking care of myself better.

I’m overdue for a dental checkup and I’m just so scared. I’m worried they’ll be mad, and lecture me or judge me. And I’m also worried that I’m going to have to have more teeth removed… Any time I think about making the appointment I panic all over again and get really overwhelmed… What should I do? How do I explain myself in a way they’ll understand?

Any and all advice is greatly appreciated and welcomed.

#AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #POTS #EhlersDanlosSyndrome #EDS #jointhypermobility #NAFLD #LiverDisease #BPD #BorderlinePersonalityDisorder #Diabetes #Migraines #InterstitialCystitis #IBS #GERD #AcidReflux #Dentist #mouthproblems #Advice #Depression #Anxiety #panic

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