Grand Mal Vibrations

[MrKap]

Hi, new here, long story short.

I had a grand mal spiritual awakening a few years back, and I totally didn't know it was a seizure, and I sort of went delusional afterwards.

Was diagnosed bipolar and totally neglected to mention the grand mal to the psychiatrist.

I went on meds, healed up, felt pretty good, then one year later, hit with frequent vibrations that last through the day, and are most annoying during waking from sleep, and falling asleep.

Now I'm making my own EEG which hopefully will work and prove my vibrations are epileptic rather than psychogenic, or all in my head as some say.





A few more details...

I found this place while searching for feverfew information in relation to epilepsy. It says, "tranquilizer" on the package, so I figure it might be good to get me to sleep. Low THC marijuana, high content terpene seems to work very well with me, but I've discontinued temporarily to experiment with other options. Gin and tonic is on my list tonight. I hate alcohol with a passion but it seems to work. I've got Valerian root to try next, and I was on the valproic acid. Doctor has proscribed neuroleptics, but I hate tranquilizers and hold them in reserve for bad nights that are restless. It was only a few months ago I thought I had Sjorgens Syndrome, but in reality may have just been really far gone and panicking. I was chewing boatloads of bee propolis straight from the bee keeper when my current run of constant seizure activity set in, so I haven't ruled out that substance as being the main aggravating thing in my system, as a sort of weak auto immune disorder catalyst or something. It is all alot of guesswork, trial and error, and consultations with the doctors. Some times I will get a headache after a lengthy vibration and I associate that with memory loss and future confusion or general very very minor impairment, so I am doing what I can to avoid vibrating too much, but I will let a vibration continue for 5 to 10 minutes or more sometimes because I just lose my wits and surrender. Oh yeah, and sometime vagus nerve stimulation indeed works for me, and the only forewarning signal I sometime get is a squeezing noise of decompression in my nasal cavities, which is a clear signal vibrations are going to set in immediately and consistently preventing sleep. Oh and I've also tried nasal cortical steroids, and it seems to work, but they worry me, so I use them sparingly. I could rant forever on symptoms and other things, but this is a good generalization.

Forum looks good and am looking forward to digging around deeper.

 

[Kgartner]

Now I'm making my own EEG which hopefully will work and prove my vibrations are epileptic rather than psychogenic, or all in my head as some say.

I'm not sure what you mean by "making your own EEG" but epilepsy and seizures are not something you can diagnose on your own. It sounds like you are doing quite a bit of self-medicating as well.

Please reach out to the medical professionals you work with as soon as possible. If your condition is changing or you are having some type of seizure activity, they are the ones that will need to guide you through your treatment. Good luck to you!

 

[Nakamova]

Hi MrKap, welcome to CWE!

Oh yeah, and sometime vagus nerve stimulation indeed works for me.

Not sure what you mean by this. VNS technically refers to an implant that can be activated via an external magnet. Do you mean meditative deep breathing? (See http://www.newsmaxhealth.com/Headli...e-stimulation-brainstem/2014/09/15/id/594746/)

Be careful when self-medicating/treating -- let your doctor know (even if you think he or she will disagree). Research any supplements and other meds very carefully. Be aware that many OTC herbal supplements may not contain any of the active ingredient and may contain potential allergens not listed on the label. If you decide to try something, go slowly with small doses so that you can get a sense of how your body reacts.

It can help to keep a seizure journal to track when your episodes occur and if they are changing. If you also track things such as diet, sleep, activity and stress you may be able to identify triggers that you can potentially eliminate or avoid (such as the bee propolis). See http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ for more information about this approach.

A question: By vibrations do you mean a sort of shivering or twitching? Is your whole body involved or just some areas? Does it seem to be inside your skull? Does it involve sound?

 

[MrKap]

The vagus nerve is located behind your artery on your neck. If you press the artery it stimulates the vagus nerve. It was an 19th century discovery. It works for me sometimes, but not all the time. I think sometimes I might not stimulate it correctly.

I'm not sure what you mean by "making your own EEG" but epilepsy and seizures are not something you can diagnose on your own. It sounds like you are doing quite a bit of self-medicating as well.

I've sound engineering, and electronics and programming courses. I'm simply looking for synchronous wave forms, and some experts informations (which I found while searching for feverfew) on these forums.

I love the information age. It is very empowering. Might keep me out of intensive care an extra few years. Know what I mean?

A question: By vibrations do you mean a sort of shivering or twitching? Is your whole body involved or just some areas? Does it seem to be inside your skull? Does it involve sound?

It is all internal pressure. It is very difficult to explain. It feels like shaking without moving. Sometimes the frequency is so fast it is like a buzzer, and other times the vibration is slow like a wobble. It initially happened in my kidneys, but that has not recurred in that area for months now. It is also in my chest at times, and in my head/brain. Sometimes my throat. Sometimes my arms, and / or legs. My grand mal shook me everywhere and happened before any propolis, but tbh, my memory/understanding is only starting to come back to me now, so reconciling all the pieces is pretty all over the place.

It is not currently recognized by medical professionals as a symptom of anything known to my understanding.

So really it could be all in my head, or psychogenic as they say, that's why I'm going my own route. I passed blood urine and other tests at ER a few months back, so technically there is nothing wrong with me, and yeah, there doesn't seem to be any epilepsy dedicated services for hundreds of mile around me, and no doctor yet has suggested looking inside my brain via EEG or MRI or anything, so I keep them updated, but the next time I go in, I'm going to simply ask for the drugs I want with their advise, because I am starting to get to a better understanding of what is happening.

That topomax looks like I really want to try that, or something that will fix a calcium influx, but I am still learning as to what, if any food sensitivies I have, and whether additional calclium in my diet make any difference at all.

I was doing so well, for about a month, then I ate these date squares at Christmas, and whoa, they just came back in full force. I didn't think anything of the date squares at the time. However, about a week later, I ate more and they hit me hard again. So... I think I may have some type of strange food allergy. I didn't make the date squares so I don't really know what was in them.

I have tried the keto thing a while ago and that seemed to work, but I am not that desperate at the moment to do that again, but I am keto aware, and have been making big changes with the diet. The thing is, I can reduce them with marijuana and other drugs, but then it's like the diet doesn't matter to me anymore, so that's why I am jumping between medications and no medications to learn more. I think I'd rather know what is wrong and do the preventative thing at times, rather than medicate. Especially if the medication is not healing, but instead is masking. I'm all over place, so...

Be aware that many OTC herbal supplements may not contain any of the active ingredient and may contain potential allergens not listed on the label.

Yeah, totally, I got valerian root coming in as an alternative to my valproic acid, but it's coming via drop shipper, so it's like, who can trust that, right?

If your condition is changing or you are having some type of seizure activity, they are the ones that will need to guide you through your treatment. Good luck to you!

It is always changing, so... what can I do. I only just came too enough within the last few months to know that I had a grand mal. I think the anti-psychotics really punched alot of me, and tbh, I have to hold in reserve that some of the medications may have made my situation worse. Or they may have been major contributors to my current state.

 

[Nakamova]

You might want to check out the the threads linked below for info/discussions about marijuana-based treatment:
http://www.coping-with-epilepsy.com/forums/f20/nocturnal-seizures-cannabis-24766/
http://www.coping-with-epilepsy.com/forums/f22/marijuana-722/

 

[Cint]

The vagus nerve is located behind your artery on your neck. If you press the artery it stimulates the vagus nerve. It was an 19th century discovery. It works for me sometimes, but not all the time. I think sometimes I might not stimulate it correctly.

The vagus nerve is the tenth cranial nerve and arises from the medulla, one on the right and the left. For E, the Vagus Nerve Stimulator is implanted on the left side. It's like a pacemaker, except the wires are wrapped around the vagus nerve. So when ever I feel a seizure coming on, I can take my magnet and swipe it over my "pacemaker" and it will stop the seizure from advancing.

I've sound engineering, and electronics and programming courses. I'm simply looking for synchronous wave forms, and some experts informations (which I found while searching for feverfew) on these forums.

I love the information age. It is very empowering. Might keep me out of intensive care an extra few years. Know what I mean?

Yes, I know what you mean. But I take some of what I read on these forums with a "grain of salt", know what I mean? Some of it is too good to be true.

So really it could be all in my head, or psychogenic as they say, that's why I'm going my own route. I passed blood urine and other tests at ER a few months back, so technically there is nothing wrong with me, and yeah, there doesn't seem to be any epilepsy dedicated services for hundreds of mile around me, and no doctor yet has suggested looking inside my brain via EEG or MRI or anything, so I keep them updated, but the next time I go in, I'm going to simply ask for the drugs I want with their advise, because I am starting to get to a better understanding of what is happening.

You really think that you can ask for the drug you want and the dr. will give in to your request? I really think you need to have an MRI/EEG before that will happen. The dr. needs to know what is going on and have a better understanding before he/she will prescribe just any meds.

That topomax looks like I really want to try that, or something that will fix a calcium influx, but I am still learning as to what, if any food sensitivies I have, and whether additional calclium in my diet make any difference at all.

Topomax is also called Dopemax because it can make a person really forgetful and feel stupid.

I have tried the keto thing a while ago and that seemed to work, but I am not that desperate at the moment to do that again, but I am keto aware, and have been making big changes with the diet. The thing is, I can reduce them with marijuana and other drugs, but then it's like the diet doesn't matter to me anymore, so that's why I am jumping between medications and no medications to learn more. I think I'd rather know what is wrong and do the preventative thing at times, rather than medicate. Especially if the medication is not healing, but instead is masking. I'm all over place, so...

Ok, you want to be healed, so you think by jumping from medication to medication is going to do the job? Really?! I hate to burst your bubble, but that will only make seizures worse. It can actually cause one to go status. And that can be very dangerous. Plus medication are not going to heal, only help control seizures. And as for the marijuana, read the posts that Nakamova posted.

Yeah, totally, I got valerian root coming in as an alternative to my valproic acid, but it's coming via drop shipper, so it's like, who can trust that, right?

onder: Who can trust the valproic acid or the valerian root?

It is always changing, so... what can I do. I only just came too enough within the last few months to know that I had a grand mal. I think the anti-psychotics really punched alot of me, and tbh, I have to hold in reserve that some of the medications may have made my situation worse. Or they may have been major contributors to my current state.

Probably the reason it's always changing is because you're not wanting to change your ways. Plus, if you're taking anti-psychotics on top of all of this, they can add to the seizures. It would be better to decrease that (anti-psychotic) medication than to stop the AEDs. And the anti-psychotic meds can/do cause diabetes. Been there, done that, too!!

 

[masterjen]

I have to reiterate the general messages here, which is to get yourself under the care of (a) a physician who can guide you with regards to all your medication trials, an (b) a physician who specializes in epileptic seizures. You say there are no such specialists around your area; I know how expensive it is to fly, but it would be well worth saving up for a trip to an epilepsy center to get the diagnostic testing done and determine the most appropriate treatment.
The only thing new I have to add is not of great significance in the overall scheme of what your medical issues are, but dates eaten in large quantities are known to get things, er, moving. If it were an allergy to something you would have been more likely to have had hives or skin rash, itching, tingling tongue, etc. That's not to say, though, that there may not have been some kind of contaminant in the dates, for example, that triggered a GI reaction. The gut is good at recognizing something it doesn't like, and will get rid of it as fast as it can!!

 

[MrKap]

onder: Who can trust the valproic acid or the valerian root?

True. I am contemplating whether or not there is a synergy with the plant based medicines as opposed to the abstract. Maybe some of the natural ingredients work in different ways. Hippocrates used the stuff, and I am thinking maybe there is some truth to patenting and extraction methods and perhaps profit. Potent does not mean more effective.

However, I never heard of him mention valerian root in his "On the Sacred Disease" essay.

The dr. needs to know what is going on and have a better understanding before he/she will prescribe just any meds.

That's why I have my fingers crossed on the DIY EEG

Probably the reason it's always changing is because you're not wanting to change your ways. Plus, if you're taking anti-psychotics on top of all of this, they can add to the seizures. It would be better to decrease that (anti-psychotic) medication than to stop the AEDs. And the anti-psychotic meds can/do cause diabetes. Been there, done that, too!!

Oh I am changing my ways. I switch to and from drugs so often as it's the only way to learn. I'm off all drugs right now and watching and recording my food triggers in a log.

What really sucks is all the people who take offense to the foods which I abstain from due to epilepsy triggers. People are truly obnoxious and take offense to picky food eaters.

What is truly bizarre is I have no sensitivity to refined sugars. They are a safe bet each and every time with me.

I'm off the anti-psychotics and have been off them for a while now. It is really nuts, because 5 months ago I was thinking to myself, I totally dodged a bullet and had recovered from bipolar with psychotic episodes (mostly), then wham, hit with nearly constant epileptic activity. If it is getting better, which I think it is slowly, it is seriously taking a long time. I still get the occasional echo of a voice, or I find myself thinking a little delusional, or I find myself locked in giggle spurts (manic bouts of laughter for hours on end), but compared to way back when, when I started the anti-psychotics, it is a huge improvement. The epileptic activity surprisingly doesn't aggravate my bipolar symptoms that much and when it does it seems temporary, and mostly along the lines of delusional thinking. But the style of epileptic activity is low amplitude compared to the initial grand mal. The grand mal was just insane by comparison.

I have to reiterate the general messages here, which is to get yourself under the care of (a) a physician who can guide you with regards to all your medication trials, an (b) a physician who specializes in epileptic seizures.

Genuinely what I feel I need at this point, or did need was a nutritionist, and an EEG tech who would take me in on a sleep study. The last thing I want is to bury my symptoms under a barrage of constant drugs to have a situation fester underneath them.

Last time I went to the doctor I thought to myself, pretend you are going in for an EEG and try and trigger yourself so your activity would show up on a machine. Alas, nothing. So I am cruxed and sort of sectioned off in the mental illness part of the process. Only time will tell.

 

[Kgartner]

There's more I could say, but I think I will just make 2 comments for now:

1) My father is bipolar, and by taking yourself off of anti-psychotics and self-medicating you are really playing with fire. I have seen my father do that more than once, and it always ends in a major psychotic break. Even if you are doing OK right now, things can go downhill fast. Please get yourself back under a doctor's care.

2) I am having a very difficult time picturing what you mean by a "DIY EEG." I honestly cannot imagine what you would be doing that would give you any meaningful information. And even if you are an engineering genius and can fashion (or borrow) something that works like an EEG, interpreting EEG results is very very difficult. It takes a lot of specialized training, and most neurologists who don't specialize in epilepsy are unable to do it. In particular, it is challenging to distinguish normal background artifacts from true epileptiform activity. You will not be able to either diagnose or rule out seizures with an "EEG" you make and interpret on your own.

If you are truly concerned that you are having epileptic seizures you need to get a full neurological workup and stop being your own doctor! This is more than you can handle on your own. "Switching to and from different drugs" is not a good way to learn when you are dealing with either bipolar illness or epilepsy - instead it is a good way to get yourself very very sick.

 

[MrKap]

Hello Kat,

An EEG Do-it-Yourself style is basically a very sensitive amplifier. I can't link yet or I'd show the plans. A few years back Obama pushed a neuroscience agenda and there was a race on the web to build various neuroscientific devices. So I am resurrecting one of those projects. There are a few, some working out of the box ready to buy and affordable all things considered.

The body is giving off electrical signals, which can be picked up by electronics. The one project that is the most developed or of the most interest may be, "OpenBCI: An Open Source Brain-Computer Interface For Makers", however I am unsure if it is strictly an EEG machine, or what. The one I am working with is ALOT simpler, with fewer parts, but probably not as nice. For more information on Obama and his neuroscience agenda, searching "BRAIN Initiative" may pull up some results. The wiki has an article. Ebay has used EEG machines, but last I looked they start at $800 and that is out of budget range, especially seeing as they are professional setups with all the bells and whistles and could be overkill and way too much for me to maintain or fix down the line.

I do understand the concern about the psychotic break possibilities. I hope by the end of all this that I can apply for an honorary PHD in epilepsy (only kidding).

I am seeing a doctor. Of course I am seeing one. I am not stranded in a desert. Thanks for worrying though. It's been long road so far and with any luck I think I can have this beat. It really is nothing more than narrowing down possibilities through trial and error and then honing on what the problem is exactly to eliminate it. That's the way I see things.

I really believe there is a possibility this is all somehow linked to my lymphatics, tbh.