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Anyone can help? Please.

Wed, 06/06/2018 - 14:55
Hi everyone! I'm 24 and I have seizures since 2007 but no doctor can help me, every diagnosis say that I'm sane. I don't know what I have to do... COURSE OF SEIZURES I have seizures a couple times for a year. After losing my mind I have convulsions, cramp. I hear many strange voices and sounds, feel numbness and tingling in my left leg just before it starts, my heart beats faster and harder. Every seizure lasts no longer than two minutes. Sometimes I heard only strange voices without convulsions and fainting, but I felt choke in my chest. MEDICAL TESTS I had EEG six times (once before started take pills, once after night without sleep) - no departure from norm. One time I thought that something started inside my head during EEG test - no departure from norm again, I'm fine. I had MRI of my brain three times, last in march. No suprise, everything is fine. CAT scan (4 times). The last scan from march was with blood contrast. Everything fine without small hypoplasia in Willy's Circle (RACA1 segment). Now I take vinpocetine for three months and there's no difference. Ultrasound imaging of carotid arteries, three times - everything is good, no way for blockage in any position. Tetany test - negative. Ultrasound imaging of heart - guess what. ;) Level of medicaments in my blood - everytime, everything is good. MEDICAMENTS At first I took VPA (depakine) with levetiracetam (keppra) but it didn't work. Doctor replaced VPA with topiramate. After this I started feel sick, so carbamazepinum (tegretol) replaced topiramate. I took carbamazepinum with levetiracetam for 9 years, during this time doctors changed only dosage (highest was 1600 mg of tegretol and 1250 mg of keppra per day). At the moment dosage is lower because I had suicidal thoughts (tegretol). PROBABLY REASONS OF SEIZURES Many of seizures was after fast running up stairs, during walking through mountains, sitting angled or while reading text in computer on white background. Sometimes physical exertion (engaging neck muscles) causes seizure. I told about everything a couple of doctors but no one can help me or simply they doesn't care. I have "epilepsy" because they don't know and don't want to know why I have seizures. Please, tell me. What specialist I should ask about it? What tests I should do? Maybe someone have similar situation like me? I don't want to pay for hearing phrase "please take more pills" beacuse another neurologist have no idea how to help me. Sorry for my english and thanks for answers.

Comments

I am so sorry you are going

Submitted by kristinspringman on Wed, 2018-06-06 - 18:21
I am so sorry you are going through this. I am still unsure about my own cause of my seizure, although when I do physical activity lately or get too hot and lightheaded I panic and feel like another one is going to come. It sounds like our stories are similar. I have no idea what kind of medication to get on, or if I should just get medication for panic attacks of the thought of HAVING one. Is medicinal marijuana legal in your area? I’m not sure if it’s marijuana or CBD oil that can help the most. I’ve read that CBD oil can help, I suppose it doesn’t hurt to try. I would keep trying medications until you find what works for you. There has to be something out there! Best of luck to you. 

Well you are not alone. The

Submitted by just_joe on Thu, 2018-06-07 - 17:57
Well you are not alone. The tests that neurologists use are generally An EEG and a MRI. Others for other things do not help since epilepsy is a neurological disorder. Meaning is what is happening in your brain. The EEG is a brain wave test showing the electrical activity in the brain. It is what was happening during the test only. Oh and I had about 25-30 different EEG's that all came back normal. It was a longer EEG that I fell asleep in that showed abnormalities which are waves, spikes, epileptiform and seizure activity. The test also shows where in your brain that came from. However the EEG does not go all the way down in your brain. So some areas the abnormalities come from may not show on the test. Many people never know what the cause of their epilepsy is. For me the abnormalities came from the left lobes of my brain. The neurologists then went and looked in those areas on the MRI and they found scar tissue in those lobes.As for going without seizures. I went days without one. I have gone weeks without one. I went 3 years without one. But I had one. I still have them. But today they are about 5 seconds long. I can have one and the people around me would not know about them.Now for your question "What specialist I should ask about it?" Your answer is a neurologist that specializes in epilepsy. Epileptologist is another name for them. As for no doctor can help you or they don't care. Or they don't have answers. Well doctors take an oath and they are to help treat their patient. If they see nothing on tests they can tell you that they don't and yes prescribe mediations which are created to stop seizures. Now you have tried several medications. A medication that works for one person does not always work for the next. The same goes for dosages. There are only about 60+ medications that are AED's. Which of those 60+ have you tried? I have only used about 20 medications or combinations of medications in the 50+ years I have been living and dealing with epilepsy. As for a cure to epilepsy. Well think a little Can you tell me how to keep an electrical impulse from hitting wrong in your brain?All a seizure is is an electrical impulse hitting wrong in your brain. That wrong hit causes a chain reaction. That chain reaction is the seizure itself.Ever see someone stand dominoes up on end in a line? Then see the same person tap the first domino? That domino falls into the next which falls into the next which falls into the next. Until they have all fallen. Now if the same person had a finger between the first domino and the second and he tapped the first it would be stopped by his finger. That finger is like a medication. That finger stopped the chain reaction so only one domino fell.Medications need to be taken as prescribed. If it says 2 times a day those times need to be the same times every day and they need to be as close to 12 hours apart as you can take them. Have your dosages been changed in the last few years? If you went some time without a seizure did you talk to your neurologist after that seizure, Understand that dosages need to be adjusted because your body changes in periods of time. I had to have mine changed5-6 times in about 18 months. YUP changing from a kid to a teen did have changes since I grew about 8-10 inches in height. That growth also added about 50 lbs to my body. The jeans I bought in august that were supposed to be for school in September I couldn't wear because I had out grown them.Your probable reasons for your seizures is something that do not exist you have many different things happening. I have done all of them too but I also played sports and use a computer. I climbed mountains. You name it and I have probably done it. Yes there are triggers to some seizures but there are others that are not on the list.So find you an Epileptologist (neurologist that specializes in epilepsy) and listen to them and always ask questions. For every questions they asked me I had at least one for them. Meaning they knew I wanted answers to them and I wanted results. I can now have a seizure without anybody knowing I had one. Today the neurologists say my seizures are controlled. Yes they are controlled meaning I do not have them at regular intervals. One now and then and with them I call Doc. If adjustments are needed we do discuss them before ever making them. That WE is a we. Meaning we talk about medications. dosages, possible side effects of medications during the change or we discuss staying on the medication as it is. It is both ME and my neurologist decision. Changes do not need to be made is I only had one seizure in a 3 month period of time. I hope this helpsJoe

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