Feeling really low

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Kdrw

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Hello,
I am new here, I wanted to reach out to others with epilepsy. My seizures started about 4 years ago, it started very small with an eye twitch in my right eye. It started to get worse where when it happened it was like I wasn't there for a few seconds, I would zone out. Sometimes people noticed and sometimes they didn't. Then the loss of bladder control started coming with the eye twitch. It is humiliating to say the least but luckily it wasn't noticeable and I was able to hide it. I didn't know what was going on and was terrified to see a doctor so I (stupidly) didn't. I was only able to finally tell my long term boyfriend what exactly was going on about 2 years after it started (he noticed the twitch but didn't know about the loss of bladder control until I told him). In spring of last year I had my 1st grand mal, my boyfriend and I were asleep and he woke up to me making choking noises and my entire body convulsing. I went to the ER and they did a CT scan which they said looked normal. At that point I was uninsured so my options were limited.
I had 4 more grand mals after that. The eye twitch and everything that went with it continued. In the summer I saw a nurse practitioner at a walk in clinic. I described my eye twitch and she literally said "huh that's weird" and prescribed me Keppra for the grand mal activity and sent me on my way (not that I thought there was a whole lot they could do).
Finally this year I got insurance and could see a neurologist. He said I likely have partial epilepsy and he was hoping to pinpoint where the seizures were starting in my brain (where the abnormality causing the eye twitch was located). I had an MRI which looked normal and I spent 4 days in the hospital on restrictive bed rest while hooked up to an EEG which showed "no significant electrical changes" in my brain despite several eye twitch events occurring while I was there. So basically my brain looks totally normal but I still have this condition that has made me totally dependent on others seeing as I can't drive until I am event free for 90 days. My neurologist raised the dosage of my Keppra and added Lamictal to my meds that I've had to raise the dosage of every 2 weeks.
The last raise in dosage was recent and I noticed right away that the frequency and severity of the eye twitch decreased by a lot. Normality seemed within my reach. That was a huge relief. I'm too young to be having bladder control loss. And it felt like I was getting better. But the last couple of days I've been experiencing it again and it is so frustrating. I hope it's not but it feels like a huge setback. Again.
I came here to this forum because I am feeling so low and hopeless. I see my doc again in a few weeks and I just want to get better. I haven't had a grand mal in almost 6 months (knock on wood) but the eye twitch seizures and what follows has me feeling like I'm losing my mind. I just want to be normal again. I am lucky to have loving, supportive people in my life but there are still so many times I have felt alone and lost. And humiliated. I'm sorry for the lengthy sob story, I know I am lucky in lots of ways and so many have it much worse than I. I don't know what I'm expecting to gain from this but I wanted to try reaching out to others with epilepsy. It affected my life greatly and I just want to feel hope that it will get better. Thank you for listening.
 
Hi Kdrw,

Welcome to CWE. Sorry you are going through all of this and I hope you get some relief.
 
Hi Kdrw,

Welcome to CWE everyone here has been a great help to me. I'm sorry you are having grand mal seizures. I've had epilepsy for 44 yrs. and there has been a time or two where I lost control of my bladder but all of that is do to the seizure that's happening. Just like you my neuro couldn't find all of the brain damage on me until he did the depth electrode e.e.g. where they put 7 electrodes directly on my brain, they did this because I wanted to have surgery done to reduce my seizures.
You may want to watch what you are eating they have a diet called the Ketogenic Diet which has been around since 1927 this diet is high in fat but low in carbs and starch foods and the diet builds up ketones in a persons body which in turn often helps reduce the seizures. You can see a dietician about the diet if you are interested I know it helped me a lot. I also found out that anything with NutraSweet in it triggered seizures for me because the NutraSweet causes more electrical activity in the brain.
If you haven't started keeping track of your seizures get a calendar and write down what time any seizure happened along with the type of seizure you had, also be sure to write down when you start and stop your monthly cycle because often that can cause seizures for many women do to the hormones changing each month. I would always have seizures 7-10 before my cycle then I started taking Diamox 5 days before my cycle and the seizures reduced greatly. Another thing that has helped me a lot is taking vitamin B12 once a day along with putting coconut oil on my skin twice a day. The B12 calms the nerves and the coconut oil builds up ketones in my body which in turn reduces the seizures for me. I wish you the best of luck and May God Bless You!

Sue
 
! ! ! Welcome to cwe ! ! !

Kdrw,
WELCOME to CWE!!!!
The members of CWE have many of years experience when it comes to dealing with living your life while having E. We can be a big asset for a new member, so ask any question you may have about E and what to do to make your life easier to live. We also have big shoulders and like to listen to members vent if they want to!
I have had E for 50 years. There are other members with extensive histories with E of many types, so we should be able to help you! :e:

ACsHuman
 
Welcome to CWE Krdw,
You will find lots of great people here. Seizures can be aggravated by things like lack of sleep, not sticking to a regular sleep schedule, alcohol, caffeine, stress, insufficient food intake, some medications and recreational drugs. Determining your personal triggers can be difficult, but may help control your seizures better.
 
Hello..I agree the twitches can be more than irritating it is possible even common for tiredness cause twitches you stressed out makes it worse and you may never have another grand mal again.Have you had sleeping ecg.I was given strong sleeping pills then hooked up for three hours I can not remember what results were so long ago.
You are on keppra so I guess it doing the job but I can understand your frustration
 
I get eye twitches and muscle cramps/ spasms but when I take a decent magnesium supplement they all stop, and my arrhythmia gets much better.
 
Must admit since started magnesium things look more positive that really works
 
Welcome, Kdrw! The beginning of the epilepsy journey can be scary and lonely, so don't feel bad for sharing your story. It is disappointing to feel like you were headed in the right direction, only to have a setback. Hang in there. Being without insurance sucks, glad you're on it and seeing a neurologist. Sounds like s/he is headed in the right direction with the testing, even if the EEG showed no significant activity. Have they ordered a MRI of the brain? That sounds like it may be in order. Are you seeing an epileptologist (neurologist who specialized in epilepsy)? If you don't find answers from your neurologist, you might want to look for one. They can usually be found in most major cities with a medical school and/or teaching hospital. Since it sounds like you were in the epilepsy monitoring unit, I would imagine you could find one in your town.

Again, welcome! You won't feel alone here!
 
Welcome Kdrw,

Like you, I have always had support from family and friends. But, I still felt alone when it came to my epilepsy until I started communicating with others who have E a few years ago. I, no longer, feel alone when it comes to my my E. We are all here to support each other and I have also learned a lot from others who live with E. They helped me make my decision to have surgery.

Living with E can be frustrating, scary, and challenging and it can take time to adjust. But, you can overcome the challenges and live a normal or close to normal life. I went through undergrad and grad school as a single-mother living with E. It can also take time to find the best med or combination of meds. Like others have mentioned, sleep and stress are very important factors. It's extremely important to get a good night sleep. Getting stressed can trigger or increase seizures. It's important to have healthy ways of dealing with stress (e.g., meditation, yoga, exercise, etc.) and trying not to get stressed out. I have done some self-therapy b/c I used to get very stressed out. I try to remain calmer and more relaxed these days. Also, listening to music relaxes me. A seizure trigger for some people, like myself, that I don't think was mentioned is flashing lights. For example, I have to always turn my head the other way when emergency vehicles have their lights going.
 
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Any strobe lighting finish me.yes they right about lighting don't look at it.
 
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