u/miss_t_drinks_tea

Didnt change the frequency at all (I have no migraine free days) but it gives me more energy and movement ability which I desperately need due to my heavy fatigue! Wanted to share in case it helps someone else. Will keep taking it and maybe it will do more!

Right now I do 4g/day.

Made a drink with lime and the vinegar and it's so goooooood 🍓🍋‍🟩

-1 ice cube frozen lime super juice (around 15g)

- Splash of the vinegar (mine is more thick and like a jam so it was more like teaspoon to tablespoon, but I think it really depends on the vinegar. Mine is also very sweet!)

-1:1 simple syrup as you like, I did same amount as the lime

-fill up with fizzy water and BOOOM yummy drink!!

Quick history about me: daily migraines, tried all meds, am now therapy refractory. Most debilitating symptom besides the headaches is fatigue for me.

I wanted to get a paper signed from my doc so I can apply for a caregiver (Europe) since the first application got denied I need to do it again since I completely rely on my husband.

Then he makes the entire appointment about how this status quo is not okay (I've kinda made peace with how it is since I cannot change it anyways) and that fatigue and leg aches are not a migraine symptom and a case like mine he has never seen in 30 years. HE DIDNT SIGN IT. (I'm applying anyway since I need the help!!!) And now said I should look for other reasons like MECFS (which is not curable as we all know so wtf)

I want to know your experiences here (not pro or post migraine) and if a doc ever said stuff like this? I've been browsing the sub before and seen a study that we do experience fatigue. But my fatigue is disabling me. And I don't know how bad the fatigue is in these mentioned experiences / reports.

I also wanted to VENT. Bro sign my paper, don't tell me I am too young to need a caregiver. Even if I go to a fatigue clinic I still need the help now. I still cannot magically work?! Even if you are a wizard and zap my fatigue away I can't work?! I need AT LEAST 50% pain free days and that is already a hustle. Even with 5-8 days a month and calling in sick is a hustle.

Ich habe seit über einem Jahr tägliche Migräne und bin daher auch arbeitsunfähig. Meine Neurologin hatte nachdem ich sagte wie extrem ich durch fatigue eingeschränkt bin einfach in meinen Bericht CFS geschrieben, was ich erst im Nachhinein gesehen habe.

Jetzt ist meine Frage: wie gehe ich da ran zu gucken, woher die fatigue kommt?

Ich konnte bisher PEM nicht eigenständig feststellen und wollte daher ein Aktivitätstagebuch starten. Insgesamt ist meine ganze Symptomatik super zufällig und ist extrem Tagesform abhängig aber ich bin sehr auf die Hilfe meines Mannes angewiesen (daher beantrage ich grade eine Pflegestufe)

Außer dem habe ich keine Spannungskopfschmerzen sondern nur Migräne Kopfschmerzen.

Mein Hausarzt meinte ich soll jetzt direkt nach einer Reha Klinik mit ME/CFS spezialisierung gucken (Schmerzklinik Kiel war mein bedenken, dass die ganzen Aktivitäten mir nichts bringen)

Ist das überhaupt sinnvoll? Ich hab zwar theoretisch eine Diagnose aber belegt kein PEM und dann direkt in ne Klinik zu gehen, wenn ich nicht Mal weiss ob es das ist?

Wo kann ich jetzt hin? Was kann ich selber machen?

Ich habe den ersten Antrag abgelehnt bekommen mit 0 Punkten. Ich lege jetzt Widerspruch ein und hoffe das klappt.

Die fatigue ist so ein krasses Problem bei mir das in punkten Mobilität und Selbstversorgung krasse Einschränkungen bestehen. Dazu kommt ja auch nochmal, dass es nicht jeden Tag gleich ist. Ich habe auch Mal gute Tage wo ich alleine raus kann und 3 Sachen machen kann. Genau so Tage wo ich 100% bettlägerig bin und mir das Essen geschnitten und in den Mund gegeben werden muss. Der Durchschnitt ist aber auch extrem scheisse.

Ich finde es so schwer das bei einer so flexiblen Erkrankung anzugeben?!

Hat jemand noch Erfahrungen damit?

I don't know if this sub is right for this but I don't know where else to put my feelings.

Because I GET the sentiment as in not caring about the gender and just loving the baby no matter who it will turn out to be and what life they will choose. But at least it's healthy kind of gives me the shivers as in: what if it's not?? Then it's not worthy!?!

I have daily migraines and am seriously thinking about pregnancy and all that stuff tied to parenthood and this theme of what if my child gets it too is also present here.

Just putting health on a pedestal as a measurement for determining the worth of humans is what is already done on this planet so much. If you can't work you basically don't matter. And this is what this statement reminds me of, even if it's meant differently. I just hate it.

But what else can you say??? I hope the birth goes as you want it is what I say to the mothers.

Maybe someone else is feeling like me?

It is okay to stop when you feel too sick. Some examples for me:

Just realized, listening to an audiobook, that I don't have to get every single thing. I can rewind if I am very confused but I don't need to actively hear every single thing. It is okay that my concentration is garbage and that I can't really do things.

I wanted to help my husband with laundry. (If I feel okay and not severe I put on the machine and turn it off get the laundry out and he hangs it up afterwards and does everything else lmaooo) so I put up the socks and after like 15 I was huffing and puffing and was like girl. You don't need to finish this. It doesn't matter. It's great that I tried. But cancelling my action here is better for me and I still did things!! Yesterday I wanted to do some super super super easy creative stuff (literally only measuring every inch and putting a mark down was my goal here) and I got my supplies and was like I can't anymore. And I continued today.

You can also stop cleaning mid task. It is still cleaner than before!!!!!

It is okay.

I just mentally processed this and it clicked that it is okay!?!?

I want to make a crafty session focused on making itself, not on the result itself. Just for the purpose of fun. Do you have some inspiration for me? I already browsed Pinterest and googled but this sub always has so cool ideas I thought I can maybe ask here too :)

Trying to find out symptoms after a small traffic accident is not that easy when you have a daily migraine?????

I was checked in the ambulance and was fine to go home but I am still so nauseous and my headaches got stronger and Im like well migraine?? Is that you?? I'm just chilling at that point and will look how I feel tomorrow, it is the weekend anyway.

(I do not want/need medical advice here, I am stating that I have to look into my symptoms differently because it's all mixed up. My husband is looking after me also)

Also the abrasions hurt soooooo bad. My pain tolerance is so incredibly low. As if I don't have enough going on already 😭 but I have to say the 10 seconds I was unconscious where so chill, like a nice dream. 10/10 for the painlessness. Also all the people were so incredibly nice and kind. I was in very good hands. I really need to have trust into the medical field in general and that was great today. Positive things do happen here!!

I went to club yesterday (sitting 80% of the time, dancing was like very mild because I was huffing and puffing haha) and I had the time of my lifeeee.

I was there in the evening not even at night and just 3hrs but mentally I was so so so happy. Sunglasses and earplugs did their things and WATER. Genuinely so so happy.

I was in pain the entire time before and was better before I went. And when I came home it was worse again. So I just used my window of the day where pain and symptoms are milder. And God knows I will not leave my house for another week. Nor will I do anything else in my house.

What I am saying: was worth preserving my energy and preparing the entire day for this.

I mean it's still sad because I only used to need an hour for eating and getting ready. Now it's a DAY and I'm still not fine.

But things like this keep me SANE.

I have daily migraines and otherwise healthy eyes. Lately I’ve noticed that sometimes the only thing that eases the pain is not only sunglasses but just laying with a sleeping mask eyes open or closed. Can this be harmful on the long run? I tried to google but couldn’t find anything.

I only brush my teeth at night and want to find an alternative for the mornings. I don't want to before eating because then I won't eat because of the taste (I already switched to a low mind herbal version, normal mint numbs my mouth lmao) and I just wont do it after breakfast because I feel so bad.

I only get up once with help to go to the loo and that's mostly before eating.

I don't want to handle liquid in my bed so I thought maybe some sticks to chew on or dry brushing as a manual cleaning? Anything that I can do in my bed on my own. Thankful for any advice!

Have some old oolongs that lost their flavour a noticeable amount. Now I cold brewed them and it's really a game changer for me. Usually I think cold vs hot brew that cold brew is on the milder side compared. But here it really extracts the flavours better. I don't know why but I'm working with it!! Missed the flavour of them and can enjoy them again. Even tho it's not gongfu now.

My pharmacist was asking me how it's been since I've been their customer for almost 10 years. And now she asked me how my career is going because we chatted and I was so sad telling her that I can't work since one year. And then she asked me how my migraines are now how often they are, and I said everyday. And she was so shocked and still caring. And this realisation hit me again. It's not about how other people react, it's that I block out how serious my situation is and that I'm therapy refractory.

Relative to my situation im handling it pretty well, I have a support system and a social life. I'm doing every day what's possible and am happy when I can load the dishwasher once.

When I told my husband he said, that it's okay to be sad because it IS SAD. And that's so true.

Wanted to share this feeling. Maybe some can relate.

Daily migraine queen asking. Because honestly I don't have any clue anymore what makes me feel better and what doesn't.

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I tried to push a sleep schedule which didn't work. Now I'm trying to just go to bed early so that if I have appointments in the morning that they don't kick me out of my body as much as they do now. I need at least 3 hours after waking up to be mentally present and able to leave my bed.

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But I'm still wondering, of too much sleep can hurt us people with migraines? When I was episodic I used to sleep it off and then that's that. But now I a) don't want to sleep 23 out of 24 hours because I also need to eat and drink??? and b) am wondering how it actually affects me. I also have insane fatigue and when nothing goes I nap because it just won't work. But besides that, I don't know how to operate elsewhere?? Is it worth trying to keep me up after 9 hours??? I used to religiously sleep 9hours every night.

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I'm therapy refractory so please no medication advice thank you!

I swear the heat isn't the problem. In Thailand I am FINE because it is STABLE. Also doesn't jump around that much for NIGHT. Ugh I hate it.

I mean, I have daily migraines this shit won't do much but I still DISLIKE IT.

Maybe someone is interested so I wanted to share 💖