Epilepsy Or Dysautonomia?

[blueroses79]

Hi Everyone! I'm new! I'm curious whether anyone else has had a similar experience.

I've had dizziness and fainting during heat, humidity, and standing up since I was 6 (outright fainted 2 or 3 times before college, always standing up someplace hot or humid). My pediatrician didn't think it mattered, so I ignored it. I still have it, of course. It's much worse in the mornings. (I'm an extreme night owl, too; and the feeling that comes on when I get sleepy is definitely a low blood pressure feeling--I feel weak and a little nauseous and don't want to stand up.) The fainting 'prodrome' can be really long, though; I might have dizziness on and off for 15 minutes, on one occasion a few hours. In those circumstances I feel like I have a fever--hot (humidity alone makes me feel 'overheated' like this, btw), and a little queasy. When I do faint, I'm unconscious for 30 sec. to a few minutes, don't move or lose control of anything, am not conscious, and have extremely low blood pressure. The last time I fainted my blood pressure by the time the EMS arrived (when I was feeling better) was 70/50.

What's complicating this is that one of the more recent times I fainted, I took up the EMS on their offer to take me to the hospital for testing, since I'd never pursued this medically. The only abnormalities were low potassium, OH, and suspicious temporal lobe activity on my EEG (which was basically a sleep deprivation EEG as I hadn't slept--being a night owl is hard). To me, it seems like the EEG is a red herring, as I can feel the blood pooling in my limbs when this is going on. I've just started seeing a cardiologist (tilt table test next week) and have been referred to a neurologist for further testing. But I'm worried neither of them will hit upon the weird intersection of neurology and the cardiovascular system that is dysautonomia. (Or I suppose it could be a weird migraine phenomenon, as I have those too; but dizziness and migraines rarely seem to overlap for me.)

The cardiologist has said that it's uncommon for cardiovascular fainting to have such a long 'prodrome,' and rarely starts at such an early age. So I'm wondering, does anyone here have dysautonomia that started early in childhood?

[Noreen]

I have the same history. I think I am considerably older than you - I am 53. As a teen I had a couple episodes which they attributed to seizure disorder. I now feel these were misdiagnosed as they happened after sleep deprivation. I could not stand up for long without feeling off and this affected my career choice

Good luck trying to get a doc to take you seriously, though.

Do you have any connective tissue issues like Ehlers Danlos? I have heard similar stories from those with EDS.

[blueroses79]

Good to know! I don't have Ehlers-Danlos that I know of, though I am extremely flexible. I guess it's a good thing that I'm not exactly suffering--so I don't plan on taking any anticonvulsants until I'm truly convinced that I need them. The biggest problem this causes for me is dizziness when I have to teach or take classes in the mornings (which I mainly avoid). My tilt table test is at 8am, so it should be all kinds of weird.

[firewatcher]

Welcome!

I could have written a lot of your post myself. I have a circadian sleep disorder called Delayed Sleep Phase Disorder; basically I am a genetic nightowl (hence the name and avatar.)

I'm also very flexible but not hyper-mobile. I have had most of my dysautonomia symptoms since I can remember, the earliest is age 6. Sleep deprivation does WEIRD things to me too, so yeah, your tilt is going to be fun.

[Guest tearose]

Welcome to the family.

You sound like "one of us" and that is only my little opinion.

I tend to have more difficulty in the mornings until I get my bp up and get into compression. Heat is hard on most of us too.

It will be a learning process and you may find the doctors need to learn as well. Hopefully the medical team will do their research and guide you back to a stronger place.

Just wanted to let you know you are not alone and you will find much support here!

best regards,

tearose

[yuliya]

I have been diagnosed with POTS today finally after searching all my life. My mom tells me that she thought that my heart rate problems have been around since she can remember. I really believe that it could be something you have had since childhood. Good luck with getting the correct diagnosis, we all know to well how hard it can be.

[blueroses79]

Firewatcher, do you think your dysautonomia is related to your DSPS? I'm curious whether mine might be.....

[firewatcher]

Firewatcher, do you think your dysautonomia is related to your DSPS? I'm curious whether mine might be.....

My Sleep doc doesn't really know. My Mom and Grandma both have DSPD too, but don't have any overt POTSy things going on. I also have been said to have a pineal cyst that has taken over the pineal gland, but they are very common. Since starting a morning beta blocker (which destroys melatonin) and then supplementing with 1.5mg melatonin at bedtime, I've had some of the best sleep I've had in my life! It is still almost impossible to get up early though. We can get to sleep at a decent time, it is the waking part that is hard to change.

[gackedo]

I was diagnosed with POTS a couple years ago though I have had symptoms for years. Last year I went to see a neurologist for significant memory issues. As part of the neuro workup I had a 72 hour ambulatory EEG which showed temporal lobe epilepsy (TLE). If you do research on line you will find that TLE can cause autonomic dysfunction-among other things. When I started taking the anticonvulsant Keppra my POTS symptoms improved significantly. In fact, my autonomic specialist thinks the TLE is the cause of my POTS and I am his second patient that fits this pattern. My recommendation is to find a neurologist who specializes in epilepsy (an epileptologist).

[blueroses79]

I was diagnosed with POTS a couple years ago though I have had symptoms for years. Last year I went to see a neurologist for significant memory issues. As part of the neuro workup I had a 72 hour ambulatory EEG which showed temporal lobe epilepsy (TLE). If you do research on line you will find that TLE can cause autonomic dysfunction-among other things. When I started taking the anticonvulsant Keppra my POTS symptoms improved significantly. In fact, my autonomic specialist thinks the TLE is the cause of my POTS and I am his second patient that fits this pattern. My recommendation is to find a neurologist who specializes in epilepsy (an epileptologist).

Interesting! I would be willing to believe this if this is what my docs decide is going on. Thanks!

[masumeh]

hi,

I'm also concerned about overlap between POTS and epilepsy or other seizure disorders. It's an unanswered question for me. But I have been investigating this issue for some years now, and I have seen very good specialists in neurology and cardiology. My EEGs are normal, but my syncopal attacks appear very much like seizures with prodromal symptoms and aftermath effects such as insomnia. I get pain in very specific parts of my head, my hand quivers/convulses, my breathing becomes shallow, my eyes roll back, it hits me any time and posture, triggers include classic seizure triggers such as sugar intake, lack of sleep, and exposure to lights and sounds (screen time included). So all of this indicates seizures regardless of EEG results. At the same time, I have swings in blood pressure and heart rate (very high, very low), GI tract problems, constant nausea, liver probems, and other issues that cannot be epilepsy and are classically related to POTS. So did the same damage that caused my seizures also cause my POTS? Did my POTS cause my seizures? Are seizures a possible but not universal feature of POTS?

I don't know the answers to these questions. But for treatment, I've found over the year (9 years!) that I need to address POTS in one way and seizure prevention in a different way. If I ignore either, then my health will go down.

For POTS, I need to do conditioning (cardiovascular and skeletal muscle with focus on leg muscles involved in venus return), exercise my lungs and control my respiratory rate to be very low, avoid "down time" or laying down time even if or especially if sick with something else, stay hydrated and increase salt intake, regulate my own heat environmentally because my body can't, watch my diet in terms of avoiding milk and difficult to metabolize foods and increasing antioxidants, and try to avoid stress including anger and excitement. All of this has had a learning process and many failures along the way to developing correct and effective coping mechanisms for my individual symptoms. But it's all pretty much unconscious now, like just the way I live and I don't have to think about it.

For the seizures, I need to stay away from sugar, get enough sleep at night, be careful and aware of insomnia related to hormonal changes around my menses, avoid lights and loud sounds (especially flashing lights or complex sounds), and stay away from caffiene products. I also "fall proof" my house (carpets everywhere and not a lot of sharp edges) and I don't risk my life or others when I have the beginning of a headache (i.e. I don't take a bath, drive a car, etc.).

I wish you a quick road to recovery and effective management. My biggest advice is to just do what works for you and don't worry too much about what doctors call it. Where this gets difficult it in deciding about medications. I took POTS meds, tried everything and tolerated nothing in the end but was helped greatly by Midodrine for a couple years. I never took AEDs (anti-epileptic drugs) because my POTS doctor and many other specialists and doctors told me that AEDs are dangerous and even if you DO have epilepsy, they are most likely to make you sicker rather than healthier.

good luck!

[blueroses79]

Results of my Tilt Table Test:

I passed out immediately when the table was tilted up, probably prompted by the IV, which they refused to do the test without. (Needles inserted while I'm lying down still prompt that response, though I can have my blood drawn sitting up with no problem.) My blood pressure dropped by half. My heart rate increased (I *think*). And the cardiologist said my eyelids twitched a little. It was like I was dreaming while I was unconscious. This cardio apparently doesn't do diagnoses of POTS, or anything more complicated than OH or NMS....the last of which she's suspicious about because, as I've said, I feel weak for a long time before I faint (I was feeling 'likely to faint,' this morning), which she says doesn't fit with a "cardiogenic" phenomenon. She prescribed Florinef. That's about as much as I can hope for from a non-dystautonomia specialist, I guess.

Of the blood tests she did, she's only reported that my potassium was low and my aldosterone normal.

I hope the neurologist I'm seeing next month knows something about dysautonomia....