Does this sound like epilepsy? the "kundalini syndrome"

[mike134]

Hi people, I'm new here I have registered here in the hope that someone will read my story and figure out what is happening to me and my body, and I think that it just *might* be related to seizure activity. I seem to have some symptoms that overlap with a particular seizure disorder, temporal lobe epilepsy, but I figured that it's best to let you seasoned veterans decide. I would really appreciate any insight

I am in my 20's and was previously totally healthy. I never had seizures before, ever, and no head injuries. One night last year I went to bed feeling totally fine, but I abruptly woke up, feeling completely agitated, my heart was palpating, and my mind was racing ("racing thoughts). It felt like I HAD to think think think, and it was extremely agonizing. Over the next few days I experienced severe insomnia; sleeping only 2-3 hours a night, and I began to have small muscular twitches all over my body, from head to toe.

Fearing that I had developed some kind of thyroid or metabolic disorder, I visited the ED where they did some basic tests. Everything came back normal. But that was of no consolation to me as the insomnia was getting so bad that I simply could not fall asleep without pills. I returned to the hospital for more extensive testing, and they did a very thorough workup, including a brain MRI, lots of very obscure blood tests for rare conditions like pheochromocytoma and heavy metal poisoning, and I had a 24-hr continuous EEG. Everything, including the EEG, was again normal. I received no diagnosis was told to see a psychiatrist.

The next few months were simply awful. The insomnia was unbearable, and I was so exhausted that I had to quit my job. But at the same time I was completely agitated, pacing back and forth, fidgeting, my mind racing at 100 mph. I felt like a prisoner in my own skin, ready to burst out. The twitching continued, and my neck started to spasm. This was a truly awful symptom, because it always spasms *just* as I finally start to drift off to sleep, waking me up all over again! And I also developed vibrating, buzzing electrical sensations in my fingers and feet, and my ears occasionally rang.

Then I developed my most dramatic symptoms. One night I went to bed and actually fell asleep and started to dream, but then (within the dream) I started seeing lots of bright, psychedelic colors, and then BOOM!!! I had a mystical experience. I am unreligious, but it felt like I was one with god and the universe. And it was so powerful that I was completely overtaken by it, but yet at the same time it felt like I was identical to it. It's tough to explain to someone who's never experienced this before, although I believe the same feeling can be achieved through drug use, specifically LSD. I had this several times over several nights, and I also started having out of body experiences (OBE's), where it feels like I am literally floating outward from myself, drifting off into space.

I also started experiencing lots of heat in the body. It can happen from head to toe, but I mostly experience it at the very top of my head, the middle of my chest, and my lower back. Strangely, I can direct the heat to most parts of my body simply by thinking about it. Like if I focus on my left arm I can actually heat it up. Very weird!! But thankfully, once I started feeling the heat, my insomnia and agitation (finally) came to an end, and now I am sleeping okay. Currently I am close to my baseline state of health; I still have some heat here and there, but I'm used to it by now. One major no no is bending my back too much. If I lift heavy weights or twist my back it actually causes rapid thoughts and insomnia! Finally, my personality is different from before. I used to be very type A, with lots of enthusiasm and energy, but now I have a lot of apathy and indifference to things.

So now I ask the question: what exactly is happening to me? I came across a condition called "kundalini syndrome". Reading the list of symptoms on its wiki page (I can't post links yet ), I fit this syndrome perfectly. But I am not happy with this "diagnosis", because it is not a scientific, medical explanation. If you read about kundalini you'll find that it is associated with all kinds of indian religious and new age spiritual dross, and things like chakras, yoga, chi, etc, that make zero sense to me. I want a real explanation from MD's and PhD's, not new age charlatans!!!

Then I started researching epilepsy. Specifically, I found that *some*, but not all, of my symptoms coincide with temporal lobe epilepsy. Such patients are known to have out of body experiences, "God consciousness", and even electrical sensations. I am aware that some TLE patients can undergo personality changes as well. However, I never have auras, hallucinations, feelings of deja vu, lip smacking, chewing, etc. And I never, ever had an actual seizure. When I feel heat going along my spine, I am totally conscious and might be running, driving, thinking, whatever. And of course my limbs don't convulse. Again, my 24 hour EEG was normal, and two sets of neurologists could not diagnose me with anything.

So does this sound like a possible case of epilepsy to you guys? I would especially love to hear from the people with real TLE. Could this be a rare varient of temporal lobe epilepsy? Or do I have some unknown illness which has not yet been elucidated by modern medicine, and thus I currently have no other choice but to call it "kundalini syndrome" for now??

Thanks!

 

[Fedup]

mike134

I am no doctor but your post did interest me, however having a epilepsy seizure does not mean your limbs convulse whether you have temporal lobe or not, everything you read about it is guidelines, people who have tonic clonic/ Grand mal seizures are the seizures best known where your body convulses and limbs move. A normal EEG is not to say you do not have epilepsy, generally it determines were the seizure starts but it is not able to detect this if it is to deep in the brain when it starts. Every person is different and the symptoms are different for each person. There are thousands of different types of seizure, ok epilepsy is put into categories. Me I have Grand Mal epilepsy, if you find somebody else with Grand Mal/Tonic Clonic a lot will be similar but not all. It might be worth looking for a second opinion.

 

[mike134]

Thanks for the response, Fedup. Yeah I know that a normal EEG doesn't exclude a seizure because you might not not be currently having an ictal episode. But what is strange about me is that I have no "episodes" of anything. When I am awake, my consciousness is completely normal. I take no medications, and for the last few months, after my insomnia and agitation ended, and I have felt mostly fine. I figured I must be either a very unusual, atypical case of TLE, or else I have some new and previously undescribed condtion.

 

[KarenB]

Has your psychiatrist given you any sort of diagnosis?

The insommnia and agitation sound more like manic episodes to me -- the sort of thing that goes along with bipolar disease.

I don't know about the heat thing, because I'm not the one having seizures in my family (my son, who is non-verbal does have temporal lobe epilepsy).

The psychedelic religious episode could be something going on in the temporal lobe.

The interesting thing is that a lot of the same meds that treat seizures also treat bipolar.

 

[mike134]

Hi Karen.

That's a good insight on your part. I saw two psychiatrists, and they were uncertain, especially about the physical symptoms. Bipolar disorder can cause racing thoughts, agitation, and insomnia, but not feelings of heat or electricity going up the spine !! And usually I don't hear people with bipolar disorder having out of body or mystical experiences. I have no mood swings. I actually tried several anti-convulsants as empirical therapy, perhaps on the assumption that a diagnosis will emerge if I respond to treatment. These medications did nothing whatsoever.

So bipolar disorder is out of the picture. My question basically is: does my story sound like a possible case of epilepsy, however atypical it might be?

 

[KarenB]

I'm not sure if a seizure would cause feelings of heat or electricity going up the spine -- would have to let some of the others weigh in on that.

The tingling sensation on the fingers and feet is sometimes a symptom of diabetes. It is also a side-effect of some of the seizure medications.

I do know that manic episodes can sometimes be associated with seizures -- my son (who as I mentioned, has temporal lobe epilepsy) will have manic periods from time to time -- these often lead up to a tonic/clonic (grand mal) or tonic seizure -- so they may be a sort of simple partial seizure in and of themselves. The manic behavior (in our son) has actually been exacerbated by certain seizure medications: Trileptal, Diazepam, and Keppra.

As mentioned above...seizures are not always convulsive in nature. You could have an absence seizure, where you simply sort of zone out for a few seconds or even minutes. I'm not sure if people who have these types of seizures are aware they are having them -- it's my understanding that they just suddenly become aware of lost time -- and that it's usually family members that notice it. Also...you mentioned that twitching -- that could possibly be a type of myoclonic seizure.

Just for the record -- you can have a completely normal EEG -- even a 24 hour one -- and still have epilepsy. That has been the case with our son. He's had numerous EEGs throughout his life, but actually only two showed abnormalities -- one when he actually had several seizures while hooked up, and the other a couple months ago when he was having 2 or 3 seizures every night.

So...epilepsy can be hard to diagnose, and with some patients (about 40%) very hard to treat effectively. Our son has been through 9 medications -- most of which did not work. I'm a bit curious -- did one of the neurologists you saw prescribe the anti-convulsants you mentioned? I'm assuming that if you went through several AEDs, that this took a period of perhaps 3 to 6 months, because of the time it takes to titrate up, and then the time to wean off. So...wondering where those drugs fell into the timeline you mentioned above, since AEDs tend to cause a wide range of side effects (including the tingling sensation in fingers and toes, personality changes, etc.).

I'm still wondering if you're not having some sort of psychiatric issues though...it almost sounds like the by-product of recreational drugs (perhaps laced with something a bit nasty)

 

[KarenB]

OK, just did a quick search and found "Parietal Epilepsy"
http://epilepsy.med.nyu.edu/epilepsy/types-epilepsy/partietal-lobe-epilepsy

This rare type of epilepsy usually presents with what is called "somatosensory" seizures, which can include the symptoms of heat, electricity, and tingling that you mentioned.

Patients with this type of epilepsy usually have normal EEGs unless they are in post-ictal stage (just after a seizure). However, abnormal MRI in 60% of patients with Parietal lobe epilepsy (usually some sort of lesion).
http://professionals.epilepsy.com/page/parietal_lobe_epilepsies.html

But...the articles don't mention anything about the insomnia (which is very common in many types of epilepsy) or manic episodes as being associated with this type of epilepsy.

However, discharges from the parietal region of the brain can spread to the temporal or frontal lobes, and thus cause some of the other symptoms you mentioned.
http://eprints.ucl.ac.uk/143959/

 

[mike134]

Hi Karen,

Thanks for your insights as well as the links. I got different AED's from different specialists (both neuro and psyc). I had blood levels of them measured and it was in the therapeutic range, but it did nothing for my symptoms. I was even having out of body experiences while on the meds. I have been off of all medication for several months now (I took them only for a month), and despite that I still have daily heat in the body, and frequent buzzing, vibrating, and electrical sensations. It is worse when I bend or twist my spine. (which, strange as it sounds, is consistent with the so called "kundalini syndrome", since yoga, a back exercise, can cause or exacerbate it) But the important thing is that I can now sleep and I'm not agitated, so I feel fine and can function. No, I have never done drugs and I am a very high functioning person with no psychosocial issues or emotional baggage. All this just happened out of the blue with no warning !

No I don't have absence seizures. I don't blank out or stare. I don't have discrete episodes of events. I can be concentrating 100% on a difficult and delicate task, or working out heavily in the gym, or driving, or doing any other activity, and at the same time feel heat in my body or electrical sensations. It's happening right now even as I type.

 

[KarenB]

Well, as I mentioned, 40% of people with epilepsy are intractible to meds -- of all the 9 drugs that our Jon has taken, only 2 have really worked (sort of). So...just because seizures meds didn't help your symptoms doesn't necessarily mean you don't have epilepsy. Also, different meds are more appropriate for certain types of seizures, so the meds you were prescribed may not have been the best ones for parietal seizures (if that is what you have).

Some of your symptoms (heat, electrical sensations, tingling) sound like the parietal lobe seizures -- but these are often associated with tonic or tonic/clonic seizures, and other symptoms that you don't seem to have. However, if your symptoms continue to trouble you, you might want to go back to the neurologist and request an MRI with special attention to the parietal lobes.

 

[mike134]

Right now they don't really trouble me. I feel pretty much fine, but I would like to know what exactly it is I have, if only for prognostic purposes. It's very frustrating when some of my symptoms fit one disorder, and some fit another, and some fit a third, but I have other symptoms that don't fit, and all of those conditions are typically characterized by symptoms that I simply do not have. And the only disorder that fits 100% of my symptoms is the false and unscientific condition called "kundalini syndrome." Total frustration.

 

[Nakamova]

Hi mike134 --

It's possible that you have temporal lobe epilepsy, even if your symptoms didn't respond to medication, since treatment is often elusive for TLE, and finding the best medication can take quite a bit of trial-and-error. In addition, one month is an very short time to evaluate the efficacy of an epilepsy medication.

That said, there could be other things going on, particularly since many of the symptoms have decreased or lessened. Although you were completely healthy prior to the onset of your symptoms, are there any factors whatsoever that you can think of that might have played a contributing role? (Things like fatigue, or dietary sensitivities, or unusual emotional stressors).

Did the multiple tests you underwent reveal anything at all? Any infections or nutritional deficiencies? Did you undergo a lumbar puncture? The symptom of heat and electrical sensations sounds like "Lhermitte's sign", a sensation which can be associated with several conditions including MS. See: http://en.wikipedia.org/wiki/Lhermitte's_sign

Best,
Nakamova

 

[KarenB]

Good thoughts Nakamova.

There's also the possibility that you may have more than one disorder.

Another thing to remember is that you don't have to have ALL the symptoms of a certain disease -- usually (depending on what it is) if you have 2 or 3 of the common symptoms, there's a good likelihood that you may have it (or something similar).

Getting back to bipolar -- this isn't always characterized by lots of mood swings. I had a neighbor and colleague with this disease who was high functioning. She was a teacher and an artist, and able to keep up with all her responsibilities, and didn't exhibit depression or other moodiness -- I was not even aware that she had bipolar, even though I saw her everyday, and worked with her on a big performance. It wasn't until she had a rare manic episode, where she went for several days without being able to sleep, and she needed me to take her to the doctor, that I became aware of her diagnosis (she had stopped taking her meds).

 

[KarenB]

Kundalini sounds like the Chinese "Qi" to me. My understanding is that the symptoms of "Kundaline Syndrome" are associated with trying to channel this "force" through a sort of yoga. Chinese try to channel "Qi" through the slow dance of Tai Qi and certain breathing and mental exercises, and also Chinese and Thai traditional massage and acupuncture are working with this concept. While many (including myself) have found this helpful for pain relief (it's essentially the basis for Lamaze breathing during child birth), inner harmony, good health, etc., there is also a dangerous side. Those who become quite expert in this practice tend to go over to the "dark side" -- often descending into mental illness and other symptoms (which sound like Kundalini syndrome) and even becoming suicidal (self-immolation the favored method). In fact, China even banned one type of "Qi" meditation because of these suicides.

The effects of some recreational drugs can mimic the above symptoms (and I believe that Indian yoga sometimes combines certain drugs with meditation).

However, since you have no interest in "New Age" stuff, and haven't been using recreational drugs, there's probably a good medical explanation for your symptoms unrelated to the mystical.

 

[mike134]

Nakamova: I guess I'll never know about the meds. Not much point in experimenting with meds now which will reduce my functionality down to 50%, when I am currently functioning at 95%. I remember having really bad side effects on them especially loss of memory and severe lethargy. How ppl tolerate AED's is beyond me!!

are there any factors whatsoever that you can think of that might have played a contributing role?

Well, I was exercising a lot and eating very healthy. I was told by some new-agers that severe exercise can trigger or exacerbate the so called kundalini syndrome. But others tell me it is helpful for it, lol. But I do know for certain that exercise will help bipolar disorder. No I didn't get a lumbar puncture and all those vitamin tests were normal. You are very resourceful with wiki But I don't think it's Lhermitte's either. Nothing happens when I push down or flex my neck, and the spinal sensations either stay constant or they flow upward, not downward.

there's probably a good medical explanation for your symptoms unrelated to the mystical.

That's what I'm hoping for !! But I know it won't be easy. Because whoever finds out a good medical explanation for me will also have solved the case of the mysterious "kundalini syndrome" That is no mean feat given that there are dozens of websites out there with competing and contradictory theories on its biological cause.

What you say about the possibility of having a disorder without necessarily having all its symptoms is very true. In fact it is expected. But I do believe that every condition has its "core" symptoms. Like euphoric mania in bipolar disorder, which I don't have. I suppose it could be a mixed state dysphoric mania, but that's rare, never mind all the other stuff that I do have which bipolars don't. So it seems like I have some "peripheral" signs and symptoms of several different conditions.

I believe that Indian yoga sometimes combines certain drugs with meditation

Yep.... Cannabis Indica Did you know that meditation can actually cause epilepsy?

uhhhhh..... still can't post links I tried to link a case report in NCBI about a meditator developing epilepsy...

That's why I stay far far away from this eastern spiritual stuff (which is bad for the brain and also condones drug use) and I'm looking for scientific answers

 

[KarenB]

I hadn't heard that eastern meditation could cause epilepsy, but it doesn't surprise me. It's believed to be helpful in resolving seizures, and it probably can, simply through relaxation and stress reduction. However, as mentioned, there is a dark side when one goes too deep that can lead to mental disease. Most Indian yogis and serious Qi practioners believe that simply using "Qi" or "Kudalini" for relaxation or improving health is a waste of the "power."

I wonder if some of those with the so-called "Kudalini Syndrome" don't have Parietal Lobe Epilepsy (or Temporal Lobe)?

 

[cazzy]

it a form of yoga and i thought and aimed at women..it surppose make the earth move for them..two of my friends did it and it worked,did sod all for me though

 

[mike134]

I wonder if some of those with the so-called "Kudalini Syndrome" don't have Parietal Lobe Epilepsy (or Temporal Lobe)?

And that is the million dollar question !!!!!!!!

 

[KarenB]

I wonder if a nutritional approach might resolve your remaining symptoms? Even if they aren't seizures, it does sound like some sort of malfunction of the central nervous system.

My son is on the Ketogenic Diet for Seizures. It gave him a year of being seizure free, after 6 medications failed. And he was able to be med free for a about 6 months, which was wonderful (you've learned about how nasty those meds can be). Unfortunately, however, his illness appears to be progressive, so we're having seizures again. But...the diet has worked wonders for numerous individuals (mostly children).

The Ketogenic diet for seizures is high fat, extremely low carb, and moderate protein. It's usually used for children, because the high fat can be an issue with adults. However, Johns Hopkins and some other medical centers are working with adults on a sort of Modified Atkins Diet, and seeing good results.

Since you're young and healthy (other than the wierd stuff) and get regular exercise, you could probably work with a sort of Ketogenic diet, especially if you got most of your fats from healthy vegetable oils (like olive and canola) or things like olives and avocado.

But you might not need to be so strict. You could experiment with eliminating some things from your diet, one at a time, and see what happens. If it were me, I'd start first with eliminating gluten, and after that eliminating sugar and reducing carbs to about half of what I normally eat. You'd have to increase your fat a bit to get enough calories -- could increase protein slightly, but too much protein isn't good.

Might also want to try some supplements. Magnesium and calcium supplements would probably help insomnia (worked wonders for our Jon). Also, deficiencies in these can cause seizures and other symptoms connected with the central nervous system. Other helpful supplements would be B6, fish oil, and selenium. You might want to try adding those in one at a time.

 

[jemsister]

Just a quick weigh-in--I have simple and complex partial seizures. Simple partial seizures manifest in various ways, as you pointed out--and seizure auras are actually a kind of simple partial seizure. But the reason I'm posting is that I also get the electrical feelings and the feelings of heat when I have a simple partial seizure. The feeling starts as a sensation of my head being filled with bugs (like my brain has been replaced with a crawly bug feeling). Then my teeth start screaming like a bad toothache, which causes me to bite down hard (as a reaction to the pain, not an uncontrolled motor response). After that, I get feelings in my feet and hands like they are literally on fire. It is very painful. The burning feeling goes up my legs and takes over my body. If it takes over everything, then it develops into a complex partial seizure, where I lose consciousness and have weird motor manifestations and say odd things and so forth. But I often get simple partial seizures without them developing into a complex partial. If my seizures are well controlled (as well as they can be on meds anyway, which for me isn't ever 100%), I mostly get simple partial seizures rather than complex partial seizures, and the simple partial seizures are less severe and don't progress as far as they do when things are bad.

 

[mike134]

jemsister, thanks for sharing your experience. I also had sensations in my head, at the very top, it felt like tingling. My feet and hands too, they don't usually burn, but several times it felt like there were 1000 lines of electrical wire running down my hands to my fingers and I was being plugged in to a power station! Major difference with me is that my symptoms, while currently at a very low grade, are continuous. I have heat in my body right now as I'm typing! Perhaps I have some kind of continuous 24/7 aura? Is that even possible??

It gets worse at night when I'm laying still trying to fall asleep... I feel it in my body, buzzing, zapping, tingling. And while it never leads to loss of consciousness, sometimes this strange thing happens: I've had several episodes where I was laying down, half asleep, and suddenly my ears start ringing and my body starts to vibrate and tremble (on the inside, not outside). Then I feel myself being sucked out of my body, and I start floating in space. This is called an "out of body experience" and is a documented occurrence in patients with temporal lobe epilepsy, although sometimes I start zooming through a tunnel and my entire body feels like there is electrical current running through. The funny thing is that I can willingly terminate these experiences at any time, although I rarely do because they actually feel pretty good And once in a blue moon these experiences ultimately lead to "god consciousness", another well documented TLE symptom.

I wonder if a nutritional approach might resolve your remaining symptoms? Even if they aren't seizures, it does sound like some sort of malfunction of the central nervous system.

That's a good observation, and thank you for the tips. I didn't do the ketogenic diet, but I've tried others, including raw vegan and it's opposite, lots of meat, cheese, eggs, and nuts. I haven't noticed a difference. I used to take a lot of vitamins and supplements and I actually stopped them all because I thought maybe there was an occult toxin or allergen that I was ingesting in one of the supplements, but that didn't make a difference either. And seeing how I'm functioning at 95% nowadays I guess I won't really bother trying new stuff, but thanks anyway!