Ich hab keine Ahnung, ob das in diesen Subreddit passt und ob das das richtige Flair ist, entschuldigt, wenn das nicht so ist.
Ich bin auf der Suche nach einer kompetenten Neurolog*in (Epilepsie sollte irgendwo auf der Website stehen) mit Kapazitäten und würde mich sehr über Hinweise freuen.
Gerne auch im weiteren Umkreis. Ich nehm alles lol
Ich danke euch!
Hallo zusammen,
Ich suche eine Neurolog*in im Namen meiner Freundin, die an me/cfs leidet.
Sie ist bettlägerig und kann keine Arzttermine wahrnehmen und kann auch nicht selbstständig nach Ärzt*innen suchen.
Sie hat ein support system, das derzeit 24 Ablehnungen von Neurologen erhalten hat.
Sie kann an einem Online-Termin teilnehmen oder ihre Mutter kann zu diesen gehen und für sie sprechen.
Ihr geht es um Hilfen bei starken Schmerzen und Schlafstörungen.
Kennt jemand eine Neurolog*in für me/cfs in Deutschland? Bzw jemand, der me/cfs nicht leugnet (gibts anscheinend leider - wtf)?
Oder wie können wir so jemanden finden?
Gerne auch andere Ärzt*innen/Spezialist*innen, die für die Themen geeignet wären.
Danke für alle Infos!!
<3 viel Liebe an alle Kämpfer*innen hier!
Hello fellow people,
I’m searching for a neurologist in the name of a friend who suffers from me/cfs.
She is bed bound and cannot attend any doctor appointments and cannot search for any as well.
She has a great support system that has currently gotten 24 refusals from neurologists.
She can attend an online appointment or her mom can go to these and speak for her.
Does anyone know a neurologist for me/cfs in germany?
Or how we can find one?
Everything is highly appreciated!!
<3 lot’s of courage and hugs for every warrior here
Hello fellow people,
I’m searching for a neurologist in the name of a friend who suffers from me/cfs.
She is bed bound and cannot attend any doctor appointments and cannot search for any as well.
She has a great support system that has currently gotten 24 refusals from neurologists.
She can attend an online appointment or her mom can go to these and speak for her.
Does anyone know a neurologist for me/cfs in germany?
Or how we can find one?
Everything is highly appreciated!!
<3 lot’s of courage and hugs for every warrior here
I don‘t know what to do anymore. I’m angry and frustrated.
I switched to lamotrigine (from lacosamide), because it didn’t work 100%. But it was pretty good. No side effects and way less seizures, but not zero. Doctors suggested changing.
Since I started lamotrigine, everything is worse.
Side effects: insomnia, lots of more seizures, can’t keep my balance when bending down, constantly having some sort of period (interaction with my pill),…
And because of the frequent seizures, my cognitive ability is as bad as before any medication.
All I hear is: be more positive! If you are that negative, it will work less…
Let’s wait a few more weeks… (I started in april)
It is such a good medication… normally it works really well…
I had a few “emergency” phone calls because of that and my real appointment is in the end of juli.
I’m done. Really. I hate, that no one cares and it goes downhill. I want the old medication back.
I know it’s not the perfect way, but I’m really considering to change the medication by myself again (back to how it was in the exact order, and with these steps, so that nothing goes wrong).
Why don’t they believe me, when I tell them this isn’t the right medication??
I have eating epilepsy with focal aware seizures and myoclonic seizures.
My first medication worked really well, but not 100% - now we’re trying another one. Not bad, but not good as well. Anyway…
My seizures happen several times a week (lunch or dinner).
And I start to hesitate when it’s time to eat or I get hungry. I have no big fear or sth, but thinking about eating gives me the “oh no” and the “do I have to or can I wait?”.
(I will absolutely eat - no worries!)
But it starts to drain me.
I don’t think that there is big advice, besides maybe going to therapy.
I’m searching for understanding from people who get it and maybe some people who go through the same issues and have developed some sort of strategy.
Thank you guys
Hello friends,
English is not my first language so excuse any mistakes.
I am hypermobile… no doubt, BUT I show some signs of hEDS but some things, that are typical for hEDS are not happening for me.
hEDS is not sth you want and because I am not really bothered by it, I’m asking myself:
When should I seek a diagnosis and why?
I hope you understand what I mean. Is it important to know, because of early treatment? Or is the state now, the state I will have forever (I’m 22f)?
Is getting a diagnosis so hard, that will few symptoms it’s impossible?
I feel pretty fine in my every day life. I guess?!
Some hip “pain” in specific situations now and then. And I sit like a shrimp, because sitting up right hurts my back… but I’m onto it. I wouldn’t “need” any diagnosis. But I was wondering if it’s still “necessary” because I would benefit from treatment later in life.
I hope you know what I want to say. I hope it’s not rude to ask this.
Thank you in advance!
I am a person needing a little tiny dose of every mediaction for it to work and do it’s job. More is always screwing up my system.
I started lacosamide a while ago 100-0-100mg what was the highest dose for me. 150-0-150mg made my heart do weird things, my mind was blank all the time and I talked gibberish.
I heard and read about people taking waaay more. But it’s like this all the time.
This is not the important part - but the backstory
Now I started with lamotrigine. The plan was to increase the dose and when the dose is reaching the final step, I decrease lacosamide.
Within 50-0-50mg I started to have issues with my balance and also fell a few times. (I increased the dosage really slowly).
It got worse and I felt some “seizury stuff” for up to 5 seconds increasing with the dosage.
When I reached 100-0-100mg, which was supposed to be the final point, I felt so so bad. I had visual disturbances, my balance was really bad and I felt terrible.
A few days later I had a seizure triggered by things that were normally really well controlled by lacosamide on it’s own.
I was basically (it’s complicated) seizure free for months beforehand. With the new med we hoped to bring it to zero.
I decreased the dosage again, to the last step.
Did you guys experienced sth similar?
Does stuff like this happen because of the combination?
Or because the dose was too high?
I had an “emergency” appointment with my doctor, but she just told me to decrease it to the last step. It was a 2 minute phone call. Next appointment in the end of juli.
I take both meds rn and am not sure what to do…
I know you guys aren’t doctors, but I am interested to know if someone had seizures because of a dose that was too high or a combination of 2 medications.
Thank you!!
I may have asked a similar thing already, but I don’t remember - sorry, if this is the case
I have some small situations (5 sec maybe), where I react really emotional over sth really small.
Eg there is a certain rule if you arrive at a crossroad in my country, that (often) the right vehicle is allowed to go first. So in this example the right one lets the left one go first and this small gesture makes me really emotional out of nowhere and I start to feel so happy and sad and really like I watched a sad movie and feel everything so deeply.
It comes like a big wave and goes away so quickly. I sometimes really cry, but at least make a weird face like I’m really empathetic or sth (hard to describe).
It’s not always in this exact situations, it varies… like this reaction is overreacting at it’s finest?! but it doesn’t seem like over reacting in this moment. I do this and directly after I’m like: what the f?
I also had it in trigger situations (food triggers seizures) but not exclusively.
My seizures are under really good control (I just have some food seizures now and then, but rn they’re at zero) just this is happening.
Does someone have this?
Is this my brain being not 100% stable (regarding epilepsy)? Is this a side effect of meds? (I take lacosamid and lamotrigin, but had it also happened with just lacosamid)? What the F is this?
Every time it happens I feel like a fool. It’s like someone takes control of my emotions for a few seconds.
Thank you a lot for reading this.
I have focal aware seizures, sometimes turning to myoclonic ones, while I eat.
I am really looking forward to drive again and the meds are working really well. Today I had a mini version of the focal aware one while eating a lot of the specific food, that is triggering a lot of seizures (before taking the meds).
I wasn’t allowed to drive because of the focal unaware and TC ones I have as well. But the food related ones are the ones happening far more often. I was told, I also primary wasn’t allowed to drive because of the myoclonic part in the food seizure thingy.
Now I didn’t have it, and the focal aware was really really light.
Does still count? (I’m gonna ask my epileptologist as well, but I’m not seeing him until the end of juli)
Maybe someone else had the same issue and knows the answer.
I really really want my license back.
Hopefully it’s a “no” for the question above🥲
Thank you guys anyway!