Dear Nicricho, as I read your post, took time digesting each word, by the end of your posts my heart was moved, broke but extremely angered at these doctors/Neurologists. I'm a 64 year old man and reading your post, for me, was more like reading a letter from my own daughter that's hurting, not only physically but emotionally, mentally, who's scared, anxious, upset that the medical community has not been able to help her and she's crying out for help. Nicricho, I'm not a doctor or associated with the medical community in anyway, but I will do my best to answer your call by the experience I've gained from my own health conditions. Over the past few years I've had multiple strokes, diagnosed with what's called Complex Partial Seizure Disorders and Simple Partial Seizure Disorders, I have Cerebral Small Vessel Disease, Cerebrovascular Disease. My seizures are pretty much under control by use of daily intake of medication, I don't have some now and then whenever I become stressed or made upset due to an argument or altercation. I have Chronic neurological disorders, that means they continuously occur, 7-days a week 24/7, they never go away, the only thing about them that does change is their intensity, there are four (4) of them and they've always been grouped together, why, I have no idea. I use my own scale from 1 to 10 on how good to how bad they are, and that can change from day to day or hour to hour, there's no way to predict, I can get up in the morning and they can be around a 4 then by noon they are a 7 then 30 - minutes later they can be a 10. The four (4) are DIZZINESS, BALANCE ISSUES, FALLING DOWN & HEADACHES. My dizziness isn't like normal kind of dizziness, it's like when a person is dreaming and in their dream they start falling and like in slow motion, my dizziness is similar to that. I never dealt with headaches my whole life but when this all started it kicked my butt. My wife has migraine headaches and her description lines up pretty close with what I've heard and read, my headaches are not migraines. Yes they can get intense to the point that they have kept me up for up to three (3) days. To describe them I can't and do them justice. There's only one thing different about my headaches, let's say I'm having an ok day and the four (4) horseman (that's my nickname for them) are riding at about a 5 but my spoiled 6 - year old begins screaming playing his video game and he doesn't stop and it goes on for half hour or longer, it could, not always, but it has triggered all my headache to go from a 5 to a 9, if it increases then all other 3 - horseman goes up to and if that happens I could, and it's happened, could send me into having a seizure. The Neurologist I saw last year said to me that he does not know why I have these 4 disorders. But because of new neurological symptoms that I've been having my wife and I pulled out and read the paperwork he gave us over again more thoroughly. He wrote in their a statement regarding my Gait. This was something we overlooked the first time but it was the Neurologists responsibility to go over and explain everything to me and take the time to answer all questions I had. He diagnosed much Gait (walking) as:
Wide-Based Ataxia. We researched what that meant. It means that a person who is diagnosed with this Gait resembles a person who has Cerebellar disease. So I took it a step further and looked up the symptoms for Cerebellar disease and I don't remember if there were a lot of different symptoms but four (4) of them sure did get my attention and they were, Dizziness, Balance Issues, Falling Down & Headachecs.
Nicricho, I wrote all of this for a reason, to give you some comfort that there are others who are going through similar health situations and have also had our share with doctors, neurologists, nurses etc who should find a different career path. But for right now this is about you. I'm glad to hear you will be having an EEG performed because I'm wondering if you are having seizures and if you are what type of seizures are you having. Epilepsy is another label for seizures as well. Also, as you said, you know your body better then anyone else. If you see any Neurologist or Medical Specialist and inside you don't feel comfortable with anything they are telling you continue to search out one that is willing to go through distance to turn over every rock to find out what's going on with you. You are young and have your entire life ahead of you, don't allow someone to steal that away from you because they are not willing to put in the time and effort into your case. Everyones created different so a one-diagnosis-fits-all is not the remedy. Please keep us informed of your progress.
I was hoping you were feeling better.