New to CWE and so many seizures recently, am scared

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Hi all.

I'm typing this perched on the end of my BF's bed after apparently seizuring all day yesterday (I think complex partials) and feeling really slow and braindead so I hope this makes sense.

I moved to a new area several months ago and it turns out my previous doctor's have lost most of my medical notes, so whilst seizures are kicking my ass right now and causing lots of problems with work (so much time off and being sent home), it looks like I just have to wait for help. All in all my experience with the NHS (I'm in the UK) has been pretty bad (misdiagnosed and put on all sorts of wrong medications for a long time) but I can't afford private help.

I'm being referred to a dietician now though, in order to try out the keto diet. I've not had any success with meds in the past, so am hopeful this will keep things a bit more stable. Have many adults had success with this?

Till recently I'd been doing fairly ok with sz frequency, and I'm unsure what's causing them now. I'd been put on meds in the past but only had an increase in severity. It had been easier for me to deal with them unmedicated, as I was alone and combined with the other side effects I just couldn't function enough to take care of myself. I don't have any family who can support me and very few friends around, so I feel a lot of pressure to fix all this before it gets bad again like it used to be at one time.

I feel like there's lots of questions I want to ask. And I guess I need to vent a bit too. It's really hard to stay hopeful.

Looking forward to learning from you guys and hearing your stories.
 
E_M

First you are very welcome to CWE, you will find that everybody can answer some question at times so sit back and relax.

The seizures do tend to mess things up for you and mess you up as well so do not worry feeling slow and brain dead can go with it for some including me. Moving to a new area might not have helped you, you might not realise it but you could have been under stress packing and moving and the stress will not help you. You may have been fine all through it but now that you are relaxing and settling in you are paying the price, it can happen to someone.

Its not just the NHS and the doctors with you that can lose your notes, it happens in Ireland as well. Having to wait for appointments or to see a doctor is nearly worse than having a seizure.

As for the keto diet all I can say is it does help some people.

The thing with medication is there are so many different types its a game of chance at first.

Ask all the questions you want and feel free to use the padded room.
 
Hi E_M and welcome to CWE!

I have heard from others here that the UK medical system can be very backlogged and neurologists difficult to find in some areas. Have you ever had an MRI and EEG? If so, have they been done recently or were these years ago? These tests may provide answers as to why you are having the seizures.

The medication guessing game can be difficult to put up with at times. How many have you tried so far? Some adults can be helped by the keto diet as Fedup mentioned. Some adults have even resorted to trying the high CBD / low THC marijuana to see if that can help.
 
masterjen said:
Hi E_M and welcome to CWE!

I have heard from others here that the UK medical system can be very backlogged and neurologists difficult to find in some areas. Have you ever had an MRI and EEG? If so, have they been done recently or were these years ago? These tests may provide answers as to why you are having the seizures.

The medication guessing game can be difficult to put up with at times. How many have you tried so far? Some adults can be helped by the keto diet as Fedup mentioned. Some adults have even resorted to trying the high CBD / low THC marijuana to see if that can help.
Click to expand...

I've had a couple of EEGs that didn't show up anything. And a couple of MRIs. I remember the last came back showing "white hyperintensities" but the doctor said they weren't significant. Those were several years ago now.

I've tried a couple of medications for the seizures directly. But also was on about three different mood stabilizers that are also used for epilepsy that seemed pretty unhelpful. (During my teens I was misdiagnosed with bipolar and then psychosis. It seems that medication for those things made my seizures worse, and the seizures themselves may have created the mood swings and the psychosis? It definitely seems like there was a pattern. The seizures were mostly dismissed as panic attacks since I was 12 till 19 although they don't look/feel at all alike.) It feels like a complicated history but there must be similar stories.

Thank you for the welcomes :)
 
I wouldn't give up on the seizure medication trials just yet, as there are so many different ones out there. Perhaps by getting in to see a different neurologist he/she will have specific ones in mind that are known to help complex partial seizures. For what it is worth, I went through trials of 6 or 7 different medications before I finally found ones that helped.
 
E_M said:
I've had a couple of EEGs that didn't show up anything. And a couple of MRIs. I remember the last came back showing "white hyperintensities" but the doctor said they weren't significant. Those were several years ago now.

I've tried a couple of medications for the seizures directly. But also was on about three different mood stabilizers that are also used for epilepsy that seemed pretty unhelpful. (During my teens I was misdiagnosed with bipolar and then psychosis. It seems that medication for those things made my seizures worse, and the seizures themselves may have created the mood swings and the psychosis? It definitely seems like there was a pattern. The seizures were mostly dismissed as panic attacks since I was 12 till 19 although they don't look/feel at all alike.) It feels like a complicated history but there must be similar stories.

Thank you for the welcomes :)
Click to expand...
Hey there E_M, would you mind telling me what your seizures/panic episodes are like? I can relate a bit on the part about the bipolar and psychosis thing. Im interested to hear how you exeperience your seizure activity.
 
Hi E_M,

Welcome to CWE everyone here has been a great help to me. I've been on the ketogenic diet and it has helped reduce my complex partial and absence seizures. I've been on many different seizure med but nothing has really worked that well for me to stop my seizures until I started using CBD oil and since then my seizures have been reduced a lot. Another thing I do as crazy as it sounds is I put coconut oil on my skin twice a day and that helps build up ketones in my body which helps reduce my seizures.
If I may ask do you ever notice that you have more seizures at certain times of the yr. or if there's a low pressure in the weather? The reason why I'm asking is sometimes a person may have what is called "seasonal seizures" meaning that at certain times of the yr. a person has more seizures. I have more in the fall and winter compared to the spring and summer and it's all do to the lack of serotonin outside in the fall and winter. Also when there's a low pressure in the weather sometimes that can trigger a seizure do to the air being more heavy and in turn that effects a persons hormones and can trigger seizures sometimes. Take my word everyone here is great. I wish you only the best of luck and May God Bless You!

Sue
 
Since E_M is new to seizures I feel I have to jump in here again, and Porkette no offence intended to you and I'm glad your seizures have reduced but there is no evidence that coconut oil spread on the skin is going to penetrate the skin and raise ketone levels inside the body. If I missed a medical study that shows evidence that it does please post it as I would be very interested in reading it.
 
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My point is that rubbing the coconut oil on your skin is not going to get the coconut oil into your digestive system and from there be absorbed from the small intestine in a form that can be utilized by the rest of the body.
 
tom21 said:
Hey there E_M, would you mind telling me what your seizures/panic episodes are like? I can relate a bit on the part about the bipolar and psychosis thing. Im interested to hear how you exeperience your seizure activity.
Click to expand...

Hey tom21. Sure. I'll write down what I can think of...

I usually know a short while before anything happens - I feel off and a bit disorientated. Sometimes I get a feeling of something moving upwards inside me and my heart rate increases. Other times it's more like everything feels bigger than it is and really unfamiliar. People have said I go pale and glazed over and do movements with my mouth.

It seems like when I get longer lasting episodes I get a weird thing with textures or objects. It's like I can feel them in/on me when I look at them and can end up wandering around touching things. And I'll often have this overwhelming feeling of a palpable oneness with everything, but it's not a euphoric feeling that I've heard about.

I've noticed that up to a day or two before a seizure, I experience a low mood and irritability and can't attribute it to anything. Many years ago, when my seizures where almost daily, I was constantly up and down. I don't think I ever had any psychosis symptoms that didn't concur with seizuring at least 2 days before/after. But I could be wrong. I feel like my memory is pretty shot!
 
Porkette said:
Hi E_M,

Welcome to CWE everyone here has been a great help to me. I've been on the ketogenic diet and it has helped reduce my complex partial and absence seizures. I've been on many different seizure med but nothing has really worked that well for me to stop my seizures until I started using CBD oil and since then my seizures have been reduced a lot. Another thing I do as crazy as it sounds is I put coconut oil on my skin twice a day and that helps build up ketones in my body which helps reduce my seizures.
If I may ask do you ever notice that you have more seizures at certain times of the yr. or if there's a low pressure in the weather? The reason why I'm asking is sometimes a person may have what is called "seasonal seizures" meaning that at certain times of the yr. a person has more seizures. I have more in the fall and winter compared to the spring and summer and it's all do to the lack of serotonin outside in the fall and winter. Also when there's a low pressure in the weather sometimes that can trigger a seizure do to the air being more heavy and in turn that effects a persons hormones and can trigger seizures sometimes. Take my word everyone here is great. I wish you only the best of luck and May God Bless You!

Sue
Click to expand...

Hey Sue.

Thanks. Nice to meet you.

Good to hear that the keto diet has helped you. I've heard so much good stuff about CBD oil. Is it actually legal in the UK? I guess I'll look into it.

I've put coconut oil on my skin for years but not really noticed any change :/ I could definitely bear to have more in my diet though...

It's interesting you have more seizures in the fall. You may be onto something with seasons being a trigger. I remember having more just before thunderstorms :ponder: you've got me thinking!

Take care :)
 
Hi E_M, welcome to CWE!

I hope the ketogenic diet helps. There's also a less-restrictive diet called the Modified Atkins Diet which has helped some people. Both diets are best started with the help of a nutritionist and/or registered dietitian. You can read a bit about it here if you're interested: http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/modified-atkins-diet

It can be helpful to keep a seizure/symptom dietary — if you are able to identify particular triggers, that's always a plus. Fatigue is the #1 trigger, but triggers can take a lot of different forms, and vary quite a bit from person to person. Below are a few of the many CWE threads on the topic:
http://www.coping-with-epilepsy.com/forums/f23/seizure-triggers-17295/
http://www.coping-with-epilepsy.com/forums/f23/seizure-triggers-3240/
http://www.coping-with-epilepsy.com/forums/f27/hot-cold-weather-climates-seizure-triggers-6489/
http://www.coping-with-epilepsy.com/forums/f23/weird-seizure-triggers-do-you-have-any-1153/

best,
Nakamova
 
Hi E_M,

I'm not sure if cbd is legal in the UK but here in the U.S. I just started using it this past month and I only had 5 seizures and they all happened the same day. According to my Epileptologist the reason why I have more seizures in the fall and winter compared to the spring and summer is do to the lack of serotonin in the fall and winter some people are just the opposite. My Dr. calls them "seasonal seizures" I'm sure that with the holidays coming up and the winter weather that may cause more stress also which in turn will cause seizures for me.
If you are interested in the cbd oil go on line and check out healthy hemp oil.com and you can read about it and get info. from the group that sells it. I use the mouth spray with the taste of peppermint. I squirt it once a day in my mouth and I can see how it relaxes me much more. I wish you only the best and May God Bless You!

Sue
 
When I was first diagnosed with epilepsy I tried sooooo many different meds. Some helped, some did nothing and some actually caused me to have seizures.

After a few years of doing all this my neuro suggested getting a VNS, vagus nerve stimulator. It has helped a lot at reducing the number of seizures I have and they aren't as bad. I'm also still taking some meds.

I've never tried anything with my diet but I have to watch out how much caffeine I drink/eat because it's a trigger for me. CBD isn't legal here in PA.

My memory is horrible too. After my first seizure, which was very bad and ended up in the hospital for over a month, I forgot practically everything that happened for the 10 years before it. After this when I'd have a seizure I might have forget things that had happened a day or two before it. Now my memory seems to last about 6 months then things start to fade away. There is still stuff that stays up there.

Nice to meet you!
 
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