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Pots And Epilepsy


Elenapap11
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I had an EEG today and i saw a neurologist who was on the list of Dysautonomia doctors in Greece. He told me that i had three seizures during the test(!!!)and that i need antiepileptic treatment.He also said that maybe my POTS crisis and all the symptoms are not because of Dysautonomia but because i have epilepsy.If i start antiepileptic treatment i have to stop my beta blockers because he said that Zanax,Ladose and all this type of drugs make the problem worse!

What on earth am i going to do?I was supposed to see this doctor today in order to get tips about my POTS and he gave me a completely different picture.He seemed pretty confident about his diagnosis.Has anyone ever done an EEG and did it show abnormal brain activity?He told me that memory problems,distraction and breathing problems may be related to the seizures.I m still waiting to be called for a sleep study(to check for apnea and other disorders)but until then what?He said that i urgently need to start treatment.

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No i didn't feel a thing.I had two major seizures 9 years ago where i collapsed and i was unconscious for at least 3 minutes but it was during a stressful period and my eeg was not as bad as it is now.I think i would have understood it if it was an epileptic seizure since i've had two before.I felt fine during the eeg except from fatigue and difficulty in breathing.I was diagnosed with Dysautonomia from two major hospitals.I have all the symptoms of dysautonomia and i wonder if my POTS and sleep deprivation has caused the abnormal activity in the EEG.Or is it vice versa?I don't know.I'll get a second opinion tomorrow but i m curious to know if any of us in this forum has abnormal EEG.

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Hi Elena,

My heart aches for the confusing time that you are having right now.

Michael spent many years with a mis-diagnosis of seizure disorder. They had a hard time locating the precise focus inside his brain, but one neurologist said, looking at his EEG... if this is a normal child, this is a normal eeg; if this is a child with a seizure disorder, (pointing to a spot on the eeg) this is the site of the seizure. I think that's when I started called neurology "voodoo medicine". And I'm a nurse ;-)

Michael did have abnormal brain scans, CT, pet and spect. The MRI was normal. The abnormal ones said there was decreased perfusion and metabolic activity. At the time, they decided that must mean that they had found the source of the "seizures", which they were planning to remove with a pretty dramatic partial lobectomy. Luckily, we didn't go with that option....

Of course, I have no idea if you have seizures or dysautonomia. I'm sharing this story to point out that there seems to be some confusion in the area. And Michael's experience was at the epilepsy center of a top private teaching hospital in Chicago.

Good luck to you with your diagnosis. This isn't easy, that's for sure.

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Boy oh boy ... we have tons of experience with this issue!

When it comes to epilepsy and dysautonomia I can easily see how one could be mistaken for the other. Seizures can cause autonomic symptoms and autonomic symptoms can cause seizures.

Ava has true epilepsy and her seizures always cause autonomic symptoms and there is an actual seizure type called an autonomic seizure (there is also an epilepsy syndrome called Panayiotoplous syndrome which is a syndrome of aut seizures). Autonomic seizures can cause all of the same symptoms we deal with the dysautonomia (nausea, vomiting, tachycardia, bradycardia, flushing, pallor and so on ...).

Last spring we saw a neurologist that specializes in autonomic disorders he explained a lot of this to us. Our problem is we don't fully know what symptoms belong to what disorders and we are now dealing with abdominal migraines to make things even more confusing.

When my dysautonomia was at it's all time worse 10 years ago, it triggered seizures (most epilepsy specialists with tell you the other way around occurs). If you truly have dysautonomia ... I would be sure to continue with the treatment. As far as Xanax goes, benzodiazepines can be helpful in treating seizures, it is the withdrawal that can trigger seizures. We are actually considering klonopin nightly for Ava as it we know it will help with ab migraines, autonomic issues and seizures.

What we are doing is seeking out treatments that are known to help with all three disorders.

Anyway, it is very possible you have both conditions ... many folks do. If that is the case, I would also wonder about an underlying disorder typing the two together such as mitochondrial disease.

Here is some info on autonomic seizures, from this link http://emedicine.medscape.com/article/1184384-overview :

Autonomic simple partial seizures11

* Abdominal sensation phenomena

o These are common in mesial temporal epilepsy but can arise from the operculum and occipital region.

o Symptoms include nausea, pain, hunger, warmth, and "epigastric rising" sensations, and may be associated with piloerection (ie, gooseflesh).

* Cardiovascular sensations12

o The most common cardiac manifestation of any seizure is sinus tachycardia with arrhythmias, with bradycardia occurring infrequently.

o Some patients have chest pain or a sensation of palpitation that mimics cardiac disease.

o Respiratory inhibition has been reported with electrical stimulation of the temporal regions.13

* Pupillary symptoms - Miosis, mydriasis, hippus, and unilateral pupillary dilatation

* Urogenital symptoms

o Seizures from the superior portion of the posterior central gyrus can result in genital sensations, while sexual auras arise more from the limbic or temporal regions.

o Ictal orgasms have been reported, although rarely, in association with seizures arising from various cerebral locations.14

* Other autonomic symptoms - Rarely perspiration, lacrimation, ictal enuresis, or flushing

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Just make sure you get a second opinion before you do anything. I was first diagnosed with epilepsy before being diagnosed with NCS. I was on seizure medication for a month before I went to a teaching hospital and they told me I didn't have epilepsy. The doctors there said that EEGs can be interpreted slightly differently, because of the sensitivity of the test. ---Pat

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JJB- I am thankful for your post and wondering what other information you could give me. I just discovered this past year and half that I have POTS and fibromyalgia that were mistaken for anxiety disorder. My 20 year old daugther has struggled since she was 14 with migraines and epilepsy. (Elena...the doctors can tell on the EEG when you would have had a seizure as well as when you really have one...my daughter shows a brain irregularity every 30 seconds). The partial seizures really haven't happend for 3 years (that we know of) although her EEG's are still not clear. She takes Keppra to control them. She has many migraines which are not controlled and other symptoms that seem similar to mine. I have been wondering if there is a connection.

How did you find out what was going on for your daughter? We've been to so many neurologists (perhaps we'll take her to the one I found that works with dysautonomia) and had very little help...especially with the migraines.

Thank you-

Tessie

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Patty can i ask you a question?how did you react in antiepileptic treatment.were there any side-effects?did you get better or worse after taking it?

I can tell you about my experience. This doesn't mean it will happen to everyone. My experience was horrific. I was on Keppra to stop seizures that I wasn't experiencing for one month. The dosages were high (1000 mg to 2000) and changed every week. It caused severe panic attacks that included shaking, uncontrollable crying, overwhelming emotions and other severe medical symptoms. At times, I thought I was dying. With my last attack, my family called the physician and the physician told me to take another Keppra. This landed me in the local hospital and from there they sent me to the teaching hospital that told me I did not have seizures. They took me off the medicine and my severe side effects ceased. After this experience, I am very hesitant about taking any medications. I am glad you are getting a second opinion. If you have any other questions, just ask----talk to you soon, Pat

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Good luck with your 2nd opinion. Just wondering if they will offer you a 3 day 24 hour video EEG which can be done in your home or hospital. It tells them more AND they can SEE them not just the EEG.

Is this neurologist a specialist with epilsepsy? Wouldn't both POTS doc and the seizure doc consult with one another?

best to you..Warmly

Jan

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I had a 72 hour ambulatory eeg to rule out seizures. I have a POTS diagnosis but there was not evidence of any seizure problem. 2nd opinion sounds very reasonable. Hope you get an answer soon!

Brye

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I got a second opinion yesterday.The doctor told me to do a 24 hour eeg which i will take at home-i'll walk around with cables on my head!-and he also asked me to check my thyroid again.He also gave me some tubes where i will have to give a sample of saliva and they will send it to a laboratory in Germany which will check glutamate,catecholamines and some other things which i cannot remember.When we get back all the results we will decide upon treatment.

About the seizures,i had taken Depakin and Lamictal 9 years ago when i had two grand mal seizures but i stopped the medication because i also got bad migraines and acne.I was twenty years old then.I haven't had any grand mal seizure ever since and last years eeg was pretty normal.I m also very sceptical about taking antiepileptic treatment because in my case change of lifestyle helped me improve.Ofcourse now i do have problems but i think it is reasonable since dysautonomia leaves me sleepless,i cannot eat properly and i m exhausted all day.If they decide that i need antiepileptic drugs i might seek advice from a homeopathist.Maybe they can give me a remedy which is not as harmful as Depakin.Has anyone ever tried homeopathy?

Thank you all for your wishes.

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Good luck with your 2nd opinion. Just wondering if they will offer you a 3 day 24 hour video EEG which can be done in your home or hospital. It tells them more AND they can SEE them not just the EEG.

Is this neurologist a specialist with epilsepsy? Wouldn't both POTS doc and the seizure doc consult with one another?

best to you..Warmly

Jan

Jan there is no POTS doctor here in Greece.The one i saw on Monday is a neurologist who claims to have worked with dysautonomic patients.He is specializing in MS and has done significant discoveries in that field.He also deals with epilepsy.However i wasn't convinced about his knowledge in dysautonomia.The other doctor is a famous pathologist in Athens who cooperates with a neurologist and pulmonary doctor to solve difficult pathological problems.He cooperates with a lab in Germany to run tests that we are not able to do here in Greece.He is also researching on preventative medicine and more natural methods of curing illnesses.I've lost count of how many doctors i have seen and each one is focusing on a different symptom but noone is looking at the whole picture.The one i saw yesterday gained my trust but i don't want to be overoptimistic.we'll see...

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I got a second opinion yesterday.The doctor told me to do a 24 hour eeg which i will take at home-i'll walk around with cables on my head!-

Hi Elena! The 24 hour eeg is great! When I went to the teaching hospital I was hooked up to an eeg machine for 48 hours. I believe this will give you a definite answer. I'll be thinking of you---Pat

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  • 2 weeks later...

Elena11,

I was recently diagnosed with epilepsy on top of POTS also. At first I was very skeptical because I know how fainting can be misconstrued as a seizure, but since starting medication I am starting to feel much better. I had a prolonged eegs and veeg both of which where abnormal and showed that I have complex partial seizures so I guess I can't really argue with that. I really hope that you get to feeling better and hopefully you don't have seizures, they certainly aren't any fun! Take care and if you need someone to talk to please feel free to contact me! Please give us an update to let us know how you are doing! :lol:

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Elena11,

I was recently diagnosed with epilepsy on top of POTS also. At first I was very skeptical because I know how fainting can be misconstrued as a seizure, but since starting medication I am starting to feel much better. I had a prolonged eegs and veeg both of which where abnormal and showed that I have complex partial seizures so I guess I can't really argue with that. I really hope that you get to feeling better and hopefully you don't have seizures, they certainly aren't any fun! Take care and if you need someone to talk to please feel free to contact me! Please give us an update to let us know how you are doing! :D

Hi Niki.I'm sorry to hear that you were also diagnosed with epilepsy.The good news is that meds have helped you.I am feeling better these four days and i haven't taken any medication.I'm just resting and sleeping a lot.I am waiting for some test results and this week i will finally do the sleep study so i'll let you know if i have any news.I wanted to ask you a couple of questions.What type of seizures did you have?Did the POTS symptoms go away when you started antiepileptic treatment?I am very resistant to the idea of taking meds for epilepsy.I'm afraid of the side effects and the possibility of making pots symptoms worse.

Have a wonderful symptom-free day! :(

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Hi Elena,

I hope that your test results will be helpful in revealing what is going on and can help you in getting an accurate diagnosis! I was so scared to take the meds, but my doctors is very supportive and started me off at a very small dosage and is gradually increasing it. Once we get up to 75 mg he is going to do another veeg to determine how well it is working rather than just judging by how I feel so that we know for sure how well it is working and can keep the dosage as low as possible. I feel so much better since starting the meds and it has taken away a lot of the POTS symptoms or at least the symptoms I thought were caused by POTS. The type of seizures I have are complex partial seizures. Did the doctor that diagnosed you tell you what type he thought you had? If your afraid of the medication see if your doctor will let you start out with at a low dose so that it is less likely to cause symptoms and allows your body to get use to it a little at a time rather than overloaded for the start. It has been really helpful to me. If you have any more questions feel free to let me know I will answer what I can! Good luck with all of your test! I hope you get to feeling better soon! :)

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