Epilepsy Anyone?

[tandrsc]

I've recently come to realise that the "waves" I feel go across my head when I'm dropping off to sleep or waking up might be seizures.

I've been experiencing this for as long as I can remember, and I'm beginning to wonder whether my ME is a result of uncontrolled seizures during my sleep. Especially since mine has been a long slow decline rather than a sudden onset.

Does this sound like anyone else?

I suppose I ought to get to a doctor to get them checked out, but I'm so tired of doctors just shrugging at me.

 

[Who Me?]

I don't have that but wanted to acknowledge your question

I'm not aware that seizures cause ME. Maybe get a sleep study to start and see if that turns something up?

Also I don't know, but it seems like if you did have some kind of seizure disorder, you'd have them other times too, not just when you are nodding off or waking up. But I'm not a neurologist so I have no idea.

What? You don't like go to multitudes of doctors and having them think you're nuts? What's wrong with you? Lol.

 

[TigerLilea]

I don't have that but wanted to acknowledge your question

I'm not aware that seizures cause ME. Maybe get a sleep study to start and see if that turns something up?

Also I don't know, but it seems like if you did have some kind of seizure disorder, you'd have them other times too, not just when you are nodding off or waking up. But I'm not a neurologist so I have no idea.

What? You don't like go to multitudes of doctors and having them think you're nuts? What's wrong with you? Lol.

Nocturnal seizures only happen when a person is sleeping. My youngest sister had them and wasn't aware of having them until she started having problems with unconsciousness and her partner realized something was wrong.

 

[TigerLilea]

I've recently come to realise that the "waves" I feel go across my head when I dropping off to sleep or waking up might be seizures.

I've been experiencing this for as long as I can remember, and I'm beginning to wonder whether my ME is a result of uncontrolled seizures during my sleep. Especially since mine has been a long slow decline rather than a sudden onset.

Does this sound like anyone else?

I suppose I ought to get to a doctor to get them checked out, but I'm so tired of doctors just shrugging at me.

If you think that you could possibly be having nocturnal seizures you should get an appointment with a neurologist. One of the risks of having a seizure disorder is that you can suddenly stop breathing while you are asleep. This definitely needs to be checked out.

 

[Who Me?]

As I said, I didn't know, just spit balling. I also never heard of seiziures causing ME.

I'm not a doc but a sleep study wouldn't hurt.

 

[TigerLilea]

As I said, I didn't know, just spit balling. I also never heard of seiziures causing ME.

I'm not a doc but a sleep study wouldn't hurt.

I agree; I've never heard of seizures causing ME either. A neurologist will try to provoke a seizure with testing. A sleep study would probably also be a good test to get done.

 

[tandrsc]

You're both right - I really should get it checked.

I had a sleep study done about 12 years ago (I was sleeping 14-16 hours a night at the time and my doctor begrudgingly agreed to refer me). They said my sleep was normal, but I think they were only looking for apnea and narcolepsy. And I suppose a lot can happen in 12 years.

I've been reading up and have found several herbals with anticonvulsant properties. I've been experimenting with combinations and amounts and this morning I didn't feel any "waves" and am feeling much better today. There is definitely a connection between how much I feel the waves and how I feel the next day.

If anyone is interested, these are the herbals I've been trying (I was already taking most of them).
Skullcap
Valerian
Mistletoe
Aniseed
Black seed (Nigella Sativa)
Turmeric
Ginger

I've also stopped taking the herbals that are contraindicated for epilepsy, these were:
St John's Wort
Ginkgo

And I've made a point of adding 1tbsp flaxseed to my diet everyday for the omega 3.

I found a page on the Epilepsy Society's website that described my symptoms as a simple focal seizure in the frontol lobe.

Frontal lobe - a strange feeling like a 'wave' going through the head or stiffness or twitching in part of the body.

https://www.epilepsysociety.org.uk/focus-simple-focal-seizures

 

[Merida]

@tandrsc
I had several seizures right after the injury that caused all of this -18 years ago. My entire body was shaking - always during the night. The seizures stopped but I continued to have odd electrical type body waves for years. I believe Neurontin helped stop these.

The more I was able to improve my neck, the better I got. But also, I was diagnosed with a " tight" spinal cord by a neurosurgeon expert. He told me that when I lie down the curves of my spine flatten and put more tension on the spinal cord all the way to the brainstem.

If you have scoliosis and/ or neck/pelvis problems these odd night time events may be related to structure.

 

[tandrsc]

Thanks @Merida that's interesting. I don't have any neck/pelvis problems that I know of but it's certainly something I can keep in mind.

 

[Merida]

@tandrsc
Another thing, I have read that a significant number of epilepsy cases can be due to a heart issue? Google that, and research will come up. Hope you find some answers.

 

[tandrsc]

Well well well. It looks as though I don't have ME after all but epilepsy. It's taken a while to get a diagnosis - my MRI is fine but my EEG is iffy.

The seizures happen in my sleep and it looks as though they have been happening for most (if not all) of my life. They are partial seizures and there are no outward signs, which is why no-one has ever noticed before - least of all me.

So after a lifetime of chronic sleep deprivation (due to seizures messing it up) it's no wonder I'm not well. It would also explain why I have slowly worsened over the years (it wasn't a sudden onset) and why stress does me in so badly (stress makes seizures worse).

I am now taking lamotrigine and am feeling much better. I need to increase the dose slowly to avoid side effects - but even with a small amount I am seeing a marked improvement.

So if anyone out there feels strange pulse, wave, jolt or fluttering sensations in their head when falling asleep or waking up - please consider epilepsy as a possibility. I'm sure I'm not the only one this could be happening to.

 

[Merida]

@tandrsc
Wow! Thanks so much for sharing! So happy there is a med that helps you feel better! I wonder how many of us are having undiagnosed seizure activity???

 

[Farmgirl]

@Merida , this is hard to describe, but before I took gluten out of my diet, I had what I would consider a mix of my breathing stopping while I slept and a lighting through my brain which then I woke, gasping for air. I felt it was seizure type activity. That all stopped once I took the gluten out...along with a ton of other symptoms and snoring ( husband happy!). I still get my eyes switching to the sides repeatedly sometimes when I am in a relapse. Seizures don't need to be grand mal to be a seizure as there are different types.

 

[Merida]

@Farmgirl
Thank you for sharing. I appreciate this information. I am in a whole new world. I live in Calif., but was visiting Manassas battle field, Virginia, in 2010. I got a single tick bite with a funny little rash. I asked my doc about this, he did Lyme test and it was negative.

Now, 7 years later I have strong IgG positive ( CDC criteria) Lyme panel. The first test was done too early to get positive immune results.
Been educating myself. Wow. Strange seizures, neuro symptoms are all part of this disorder. Think everyone should listen to the NorVect conference lectures - especially Dr. Joseph Burrascano.

 

[Merida]

@Farmgirl
I just listened to a lecture by Dr. Richard Horowitz, NorVect conference. Near the end he mentions that he finds Bartonella is associated with new onset of seizures. He treats it with the fluoroquinilones.

 

[Merida]

@tandrsc
Please read my note above to Farmgirl - actually was for you too.

@Farmgirl
Think you are describing "air hunger."

Again these symptoms are associated with Lyme and the various co-infections. Please check out the NorVect conference on this topic onYou Tube. Very important. Listen to Dr. Richard Horowitz first. I am still in shock - realizing how important this info is - and how relevant to me and many others.

 

[tandrsc]

Thanks @Merida but I don't have lyme. I have managed to fix all of my spurious symptoms with various herbals and it's only these seizures and crushing exhaustion that are the problem.

The severity and frequency of the seizures are directly related to how tired I am the next day. I think chronic sleep deprivation (caused by the seizures) is the most likely explanation of my poor health.

It wasn't a sudden onset for me - from a young age I have gradually worsened over the years which would correlate with untreated epilepsy.

 

[Farmgirl]

@Merida hi, thanks for that info. I like your name, by the way. Reminds me of that movie.(Brave?) I have Dr. Horowitz book here from the Library, but I am so advanced in my ME I am having a difficult time with reading and he is SO complicated and smart. I have watched a few of his videos on YT, but will look at more. My next step is to get a Lymes test next week I hope. I am already positive for EBV and 3 other viruses. I had a deer tick bite 2012 that I did not notice until day 3 of attachment.... so, we'll see.

Merida, do you have ME and Lyme's? I am sorry if you do.

I also am a strong believer that components in vaccines can cause seizures in susceptible individuals. My daughter is 21 and had a TB test for a routine exam and had a seizure within 12 hours. (Not my only reasoning)

Thanks for the info! I never thought I would enjoy this forum so much, but I am cuz it is nice to "meet" others who understand.

 

[Merida]

@Farmgirl
Yes, I have severe fatigue and multiple issues since 1998 when a chiro twisted and pulled my neck and pelvis. Bed ridden one year. But in 2010 I had a tick bite. I just got Lab Corp results which are CDC positive for Lyme - 5 bands. But my infectious disease doc did a PCR which was negative. So, he does not want to treat. I am so confused.

So I may have 2 issues contributing to my problems: pelvis/ neck injury alignment, then Lyme and coinfectiond from tick bite???

Look at the NorVect conference on You Tube. Wow. Lyme is only 1 problem. Hugs. I have learned so much in this forum!!