Undiagnosed and new to the forum.

[Divine Euphoria]

Hello to you all,

Currently undiagnosed and not part of any support group or chat group in real life or online.

My experiences seem to fit with partial seizure-like events. The last memorable event I felt like I lost control over my body and left my body and travelled to another dimension. I remember that my level of consciousness changed so I was somewhat aware of what was happening.

It felt like I was rushing backwards from the ground into the sky at the speed of light. It was scary and exhilarating and afterwards I felt the highest level of euphoria and like all the barriers and blockages (detached, disassociation) had been obliterated.

Before that I went through a few cycles of going from a dreamy detached state to jittery anxious state when it felt like a tremor or shaking/strong vibrating inside my core of my body.

I have also had a weird rising sensation a number of times with a sensation that gravity has changed and I am being pulled to the floor.

In the process of working with my GP to see if I can get referred back to Neurology to get tested again.

Not sure that it is going to happen anytime soon as I have an appointment coming up with a psychiatrist, probably thinks I am a crazy person who is attention-seeking or having PNES/NEAD events due to past history of mental health issues.


A few people over the years have made comments to me about daydreaming and not paying attention which could be absences in memory or consciousness.

Will add more later when I have more time.

Hope you are all doing well.

 

[seagull]

I not in anyway dismissing you have e but surely your dr could arrange a few test like eeg and or Mir scan.
I have not myself felt gravity missing but I do have idea which I will mention at end of post.From my point of view you not describing usual e but that not to say it not e.You do describe a mild over breathing and day dreaming I think whole population do a peti mall is different when you kno what looks like you can tell difference between that and day dreaming.Yes it true some people have euphoria to the point of panicking bc so intense and others have alter sate of consciousness but you not quite explaining it as I know it and I do have that but that is controlled with meds.
I think I would ask doc for few tests before you sure it e.

The gravity thing I was going mention this on another thread but don't want people think I nut.
On news yesterday bbc world service serious channel and not given talk about airy fairy stuff and if you want you can download or read yesterday broadcast.It mention earth had moved on its axis significantly in last 15yrs the scientist was asked if anyone would feel difference given weather conditions have changed and some people with e are sensitive to weather conditions it do make you wonder.the other thing billions light years ago two black holes colided the waves of this have just reached this solar system again you have ok it up I think Morgan Freeman narrated that bit.Well I have wonder if this has or could affect people who have electrical malfunction in brain.It way out but it do make you wonder and fact no one could prove or disprove it.My son a dr thinks I raving mad and only believes in imperical science but I would advice you not tell GP that bit about black holes and planet axis.In fact I look barcking mad even mentioning it

 

[Frink]

Welcome to CWE!

 

[masterjen]

Welcome to CWE Divine Euphoria! I have never experienced seizures like yours so will leave it to others on the forum to comment on that part. I will say, though, that one can have epilepsy with normal EEGs and MRIs. If your neurologist is putting you off, I would ask your family doctor about a referral to an epileptologist (neurologist who specialized in epilepsy). This would be the best person to help determine if you are are having actual seizures or if they may be psychogenic.

 

[valeriedl]

When you 'stay awake' and know what's going on sound like they could possibly be simple partial seizures. Some of the time people get odd feelings, see or hear things that aren't there and other things that you described.

When people say you are 'daydreaming' could be complex partial seizures. During some of mine I'll just sit and stare, not responding to anything that's going on. I might do things too. When I come out of the seizure I have no memory of any of it happening. Unless someone is there to tell me that I did whatever I did I didn't even know I did it. After these too I might forget things that happened hours to days before hand.

I've gotten a lot of help from CWE on how to deal with things and how to get help when it's needed because people have had to go through it themselves.

Nice to meet you!

 

[Nakamova]

Hi DE, welcome to CWE!

I have also had a weird rising sensation a number of times with a sensation that gravity has changed and I am being pulled to the floor.

This is a fairly common partial seizure sensation, so definitely let the neuro know when you get an appintment. If you can, keep detailed notes about what symptoms you experience, how often, how long they last, etc. That will the docs in making a diagnosis.

Some of the other sensations you describe can arise from activity in the temporal lobe areas of the brain, so it's important to get checked out. Hope you can get some answers soon.

 

[seagull]

Maybe good idea get the person who knows you well go with you to doc ,make little diary of what you think is happening.
I took my husband although he was useless wish took friend

 

[valeriedl]

Maybe good idea get the person who knows you well go with you to doc ,make little diary of what you think is happening.
I took my husband although he was useless wish took friend

It's a very good idea to keep a seizure diary of what went on.

I write down for each seizure:
- When the seizure happened, date and time, and how long it lasted.
-What happened before the seizure, like a simple partial or if I was acting weird in any way. Sometimes I just go right into the complex partial or TC so there's nothing to put in that slot.
- What I did during the seizure. Maybe just sat and stared, walked around the house, talked, did something (loaded the dishwasher once) or anything else that went on.
- What happened after the seizure. Headache, tired or anything else.
- Add anything else that you think you might be important pertaining to the seizure.

I also put any questions or concerns on it that I want to talk to my neuro about it. That way when I get home from the visit I don't say "Shoot! I forgot I was going to ask him about whatever"

I type all this out and keep a copy for me and give one to my neuro. He loves it. This way we don't spend almost the whole office visit trying to remember all this stuff and can just go into discussing it and see if there's anything that we should be doing. Like med changes or adjusting my VNS.

My husband comes with me to all my visits and luckily he's a good help. Since most of my seizures are complex partials I don't know what happened during them but he does because he sees me have it. He can also let the neruo know if I've been acting any way that isn't normal. Not eating, eating everything in sight, sleeping all the time, having trouble talking, memory problems are some examples. I may not realize I'm doing this.

 

[Topcat]

Welcome, there are some great people here. Always remember we have gone through the tribulations (so to speak) of epilepsy.

 

[Divine Euphoria]

Thanks for the good advice. I will put that to good use.

Currently looking into Electromagnetic Hypersensitivity as I have had a few occasions in the past during and after using or being in a room with computers and possible invisible wireless Internet fields of feeling head pressure and spaced out.

 

[Porkette]

Hi,
Welcome to CWE everyone here has been a great help to me and been very friendly. One thing your Dr. can do to see if you are electromagnetic sensitive is do a e.e.g. on you
and run electronics at the same time. I found out I was cell phone sensitive a few yrs. ago whenever I'm around a lot of people who are using cell phones at the same time it will trigger a seizure for me. My Dr. told me this was all do to the frequency the cell phones use.
You may want to try taking vitamin B12 1000 mcg. once a day I have found it does wonders reducing my seizures. I wish you the best of luck and May God Bless You!

Sue

 

[Divine Euphoria]

I have read in a number of places about valerian and passionflower supplement tablets having natural anticonvulsant properties. Is there anyone on here with experience of taking valerian or passionflower that has positive results from it?

Got an appointment to see a Psychiatrist coming up soon at my local health centre to discuss my mood issues which were triggered off when I had a seizure-like episode at the Learn Direct training centre. Rushing backwards at the speed of light to meet the oldest and wisest entity in the entire universe. I guess after that I will know if I am similar to a box of frogs or bats....

 

[seagull]

I also read be careful sz activity if use St. John's wart...I have used Passion flower and valerian over the years but no difference.
some people take coconut oil and tumeric magnesium Get health shop capsules I using some of those things I think magnesium maybe working with head aches but I had one lastnight got one now praying won't be migraine ..I have read bout wild lettuce but think you need get advice on that one.
I agree about electro magnetic things.People who do not have e often feel spooky or place haunted if in close range of that.
I have learnt a lot on here and grateful for so I sure between medic and forum you get answer or at least opinions you can ponder on

 

[Divine Euphoria]

A week ago my GP referred me to see a Mental Health Nurse and the Nurse seems to think that I have Dissociative Identity Disorder. He gave me some questionnaires to fill out and suggested that I get a book on Dissociation either from the library or from online.

 

[Nakamova]

Hi DE --

Some people experience both DID and epilepsy. We have a few threads about that in the archives. See http://www.coping-with-epilepsy.com...epilepsy-dissociative-identity-disorder-8461/

As far as passionflower and valerian go, they are ingredients in a supplement I take on occasion to help me sleep (called SuperSnooze). I haven't used passionflower or valerian for seizure control, but the supplement does seem to work for my sleep issues.