Epilepsy Research UK
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My struggles

Oh I have not been on for a while I am drowning in my seizures and symptoms I feel suffercated and low I cant get any body to help me with my seizures I am not my self at all I have no g.p or neurologist any more I cant stand what has happened to me I am feeling all the time over whelming fear my seizures are becoming out of control my depression is getting worse I try and stop them as every body has had alot to say on that but nothing does does ii really had enough I am devestated that know one is interested in my welfare this constant circle seems to be getting bigger and I cant get any one to see sense .i feel alone and humiliated I feel so sad ii cant change a dam thing god I wish I could better I am so sick and tired of neglect I am so tired of being this shape sand leaving me to cope I am not even sure were I am in my life. I still got memory loss my seizures are so bad I am left with nothing god I wish I had a wand my life feels like its upside down all the nonsence I have heard nothing is with no truth and on top of that no one even bother asking me my symtons ever now I don't know wich way to turn I feel alone and in a bad way I wich I had controll I wish I could get treatment but I have no one I can trusted. Can any one help me please I feel so ill I am tormented any I feel so ill after 2 and half years of seizures and symptoms I don't know if there's drugs for me or not I could do with some help and support or advice.

9 Replies

I'm so sorry you are suffering.

Look at this healthunlocked.com/epilepsy... It may help.

Medical matters need to be discussed with a health professional.



Let's try and deal with the first issue first.

You do not state why you do not have a neurologist let alone a doctor. So as I said starting with the epilepsy. Please make it a top priority to get the ball rolling by firstly signing up with a GP on Monday. Once you have done that tell your doctor about your epilepsy, and your need to be referred to a neurologist, so that your epilepsy and other health issues and that includes your depression, can be dealt with.

Your new neurologist will send you for a series of tests to assess your epilepsy and the treatment for you.

In relation to your depression your neurologist will either ask you to see a therapist at their hospital or get your GP to refer you to one in the borough that you live in.

On Monday take post action by signing up with GP and let all happen from there.

I wish you well.



I agree with Richard, you really need medical help for both the epilepsy & depression. I was depressed for year when I learnt I had epilepsy back in 2008. I went to counselling which was arranged through my gp & it was the best thing I've ever done. Please, please try & get some help. There is support out there. Do you have a family member or friend you can turn to?


Hi, sorry to hear you are in this state. As Richard has said, contact a GP, get referred to a Neurologist and then get your depression seen to through a Therapist. One cannot be 'down in the dumps' forever... At least make an attempt to see a Doctor, Neurologist and more. You say you have had seizures for 2 years now, so you have had plenty of time to find help through the medical profession and to at least try some sort of medication. Understanding epilepsy takes time. There are many different types of epilepsy and each individual is treated differently. Have the patience and the willpower/strength to go forwards in life, not backwards.

People can give you advice, but the main aspect is for you to go out there and help yourself! Get enrolled with a GP... That's a start!




Hi thanks for all your replies. But right now I am here because of nerologists and my g.p I have been told awful things I went through every channel I I could do to try and get my seizures under control I am in this mess of no choice of my own.i have suffered torment over how they see seizures my Dr and nerologist are under investigation they did nothing but make things worse I am not a lucky one I am destraught what has not happened I have trusted them to help me they never even asked me any thing I have been suffering when I did not need to I have had no help because they chooses not to here me.I have been traumatised not depressed I cant say any thing right now I came on here to get support I am livid with the nerologist they tried to say I made animal noises they also said that I was suffering post dramatic stress disorder they also said I had not accepted my past this is why it is the way it is they also said my seizures will go on there own so please I am alone and saddened and living with something that I cant get treatment for because of there veiws so for me I struggling all this time I will be going to c.b.t to get help I would love to see me go 1month with out a seizure it make me so good but you do need a good support network if you cant get it your in trouble like me and,struggling and alone and untreated so for me I had to explain what happens when your not treated in the right way and what problems it causes for some one like me.



I am very sorry about your experiences. You know you can go and see a different GP. There is likely to be more than one doctor at the practice you are already enrolled in and you can request to see a certain one/not see a certain one, although you may have to wait longer. If this is not working for you, move to a different practice. So long as you live in a reasonable size town/city there will be another one nearby.

Not all doctors out there are awful. My epilepsy was mismanaged to begin with and I had some bad experiences with the doctor involved, but now I have a fabulous neurologist who I really like. You can tell he really does care what happens to me. When I was leaving after my appointment with him last week, he patted me on the back and wished me look!

Don't give up! There will be someone out there who can help you! Everyone on here supports you, we just don't all fully understand your situation.

Best of luck to you xx

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Hi thank you so much I just wanted you to know that I am going to take your advice I think that's a great idea and I hope some one will take my seizures serousley I want to ask you something I have no one to ask do you suffer bad symptoms i suffer head aches slurred speech sickness sweating dizziness sickness mood swings noise is something i react to i cant watch t.v because of the cameras i know my triggers i have been trying to stop them but i cant no matter how hard i try i feel like my life has been taken they say my seizures are non epilepsy but i have too many symtoms that are taking up my whole life they told me there was nothing they could do for me i have had these seizures for 2 and half years my body is out of control i hope you can share story i would like to talk with you many thanks julie


Really glad to hear you are going to see a doctor again :)

I don't have symptoms like that at all. Usually, the seizures I have are pretty typical epilepsy ones. It might be that you have something else as well as epilepsy, maybe migraines? I know they can have all sorts of symptoms, and can be related to epilepsy. Make sure you give the doctor as much detail as possible. Maybe start keeping a diary of what is happening and when. For example with epilepsy, syptoms can get worse when you have not slept well, when you have your period or when you are stressed at work. Of course these same things affect other illnesses as well.

Good luck :)


Thank you so much for your message I hope your well I don't sleep well at all mine two get worse I had to speak on the phone for 1 hour my head was awful I had bad dizziness it changed my mood .I was trying to talk about my seizures but ended up being something else my head is battered. I have,changed my attatude my foot is going down hard now thanks to you 😊 julie.

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