Hi Everyone, Partial Seizure query

[pty10]

Hi,

My name is Henry and I live in Australia. Started having seizures two and a half years ago. First two where tonic clonic (I then when on meds) the last four have been simple partials.

I have been on four different medications (Tegretol, Keppra, Lamictal and the current one, Dilantin)

None of them have worked. with all four of them I experience the same side effects (sudden rise of heart rate, diarrhoea, always hungry, shivers, strong goosebumps all over my head. sometimes they come and go, sometimes they can last for a few minutes, twitching)

When I first told my Neuro about the Goosebump feelings he wasn't sure what they where. I could be sitting in my desk, my heart rate would be 80 and the minute I get up and walke a couple of meters, my hear rate can spike to 90, 95. Goosebumps will follow to the point where I can feel my brain contracting, HR would be around 130-135, a seizure will follow so an elevated HR and strong goosebumps are my triggers.

I have medication now that helps me to bring my HR down and I used them when needed (Clonazepam and Atenolol) I'm also also taking anxiety med (Zoloft) daily.

Decided to go for a second opinion, currently seeing an epitologist. I have done all the test you can think of (MRI, CT scans, eeg's x5, ambulatory eeg, blood works, endoscopy and colonoscopy (they did find a polip which was benign) but other then that, everything kept coming back normal. Been to the cardiologist, gastro doc, all good! I have changed my diet as well.

So the epitologist not being sure if I actually suffered from epilepsy, scheduled a video eeg (you in hospital for a week with a camera looking at you, leads and in your head and they take you off all medications right away and data is recorded) within two days I had three seizures so they load me up on an initial dose of Dilantin then the regular daily dose (230mg twice a day)

Nothing has changed, still having the same side effects described above. Very frustrated. At least I can tell when i'm feeling sick and take care of it.

So finally my question is, does anyone suffers from Partial Seizures, the Autonomic type that controls bodily functions? If you do, which medication you taking? ( I know, meds act differently on everyone, just wanna know)

Thanks for listening to my rant

Henry

 

[Frink]

Hi Henry,
Welcome to CWE.

I have TLE with simple partial and complex partial seizures and my seizures affect my heart rate and give some digestive symptoms because the seizure activity goes down the Vagus nerve.

In TLE seizures it is common to see heart rate elevation as an early seizure symptom. My heart rate can go up or down, when it goes down I lose consciousness.

The increased heart rate and goosebumps sound to me like seizure symptoms not triggers.

No seizure medications I tried have helped reduce my seizures.

Having your heart rate go way up when you stand can be a sign of P.O.T.S. a form of autonomic dis-regulation.

*added- I will also get Deja Vu, nausea/epigastric rising, gooseflesh/piloerection, boiling hot and soaked in sweat and then freezing cold.

 

[acshuman]

! ! ! ! Welcome to CWE ! ! ! !

pty10,

You have come to a welcoming and helpful place!
I can't tell you anything as far a information about your condition, but I know that there are many other members of CWE who should be able to help you find some answers.
Seeking a second opinion is a very good thing for you to do. It shows that you really care about yourself and want to find out what is happening! :clap:

acshuman

 

[Nakamova]

Hi pty10, welcome to CWE! We have some Aussie members, though I don't know if they're in your part of the country.

I agree with Frink, some of what what you describe as side effects (heart rate, shivering, goosebumps) sound as if they could be partial seizures instead. At the time you switched off of each medication, how long had you been on a given med, and had you tried raising the dose? Often side effects will go away after a few months, and some seizure symptoms can be lessened or controlled on higher doses, so it's possible that you "gave up" to soon.

Zoloft can also trigger seizures in folks with epilepsy, so I suggest talk to your doc about possibly switching to a different anti-depressant.

Aside from that, do you have any sense of what triggered the initial seizures? Do you keep a seizure/symptom diary so you can track when your seizures occur? Sometimes keeping a diary can help you pinpoint particular stressors or triggers for your seizures that you can minimize or avoid. Triggers can be physical, emotional and/or environmental in nature, so keeping detailed daily notes can help. A diary can also help track if your symptoms are escalating in frequency, duration, or kind.

Best,
Nakamova

 

[Kgartner]

What you are dealing with sounds really similar to my daughter's seizures.

Like you, the first seizures she had 3 years ago were tonic-clonics. Those were controlled with medication for almost a year, but when we switched meds due to side effects the tonic-clonic seizures came back. After a bad week with 5 tonic-clonic seizures within 4 days, she started to have simple partials that did not progress. For her they have both a perceptual element (everything feels and looks "wrong" and "weird") and an autonomic element (heart racing, flushing followed by pallor, and shaking/trembling that can be very strong). The episodes are generally 5-30 seconds long, and currently she has them a few times a month. She also has other symptoms that we are not sure whether they are seizures, side-effects or something else (anxiety perhaps?) - hand tremors, periods of time when she has difficulty concentrating, episodes of depersonalization, etc. Epilepsy can be very confounding because seizure activity can have so many different manifestations.

These partial seizures do not show up on EEGs as seizures, but 2 years ago she had a video EEG and discontinued meds and 3 of these partial seizures progressed to tonic-clonics, so we know that they are seizure activity. They are just too localized or too deep in the brain to register on a scalp EEG. But since her EEG is inconclusive when it comes to partial seizures it is hard to evaluate exactly where they originate (important for possible surgery) and to feel confident about what "episodes" are actually seizures and what may be something else.

She has been on Keppra (discontinued due to side effects), Trileptal (allergic), and is currently on Onfi (right now 15mg/day - she's tapering off of it because it was never really effective for her) and Vimpat (400mg/day). The Vimpat has completely controlled her tonic-clonic seizures, and she hasn't had one since starting it 2 years ago. What my daughter's neurologist told us is that we will probably never get full control of the partial seizures with medication. Vimpat is a great med for keeping a small localized seizure from progressing, but not so great at stopping that initial seizure activity. She may start Lamictal once she is completely off of the Onfi to see if that helps, but currently we are just living with 3-5 partial seizures a month and consider that to be "pretty good."

When you say that you've had 4 simple partial seizures are those the heart-racing/goosebump episodes you mentioned, or something else? And how long do those episodes last? As others have said, those do sound like they could be seizure activity. Many find that is much easier to control the "big" tonic-clonics than the smaller partials

 

[valeriedl]

When I was first diagnosed with epilepsy I had tried so many meds. They either didn't work or the side effects were so bad that I had to go off of them. I was having nearly 20 seizures a month, usually complex partials but there were some grad mals too. I know I was also having simple partials but I didn't really knew what they were at the time so I didn't realize it was a seizure.

I don't know how many seizures you have but after about 4 years of all the seizures and doing the changes in meds my neuro suggested I get a VNS. Since doing this I'm only having about 4 seizures a month and they aren't nearly as bad. I am still taking meds too, not nearly as many and not as high of dosages.

I never had the rise of heart rate, shivers, strong goosebumps all over my head so I don't know if it would do anything for that. I do have some of the other problems that you described but I know it's due to the meds I'm on.

 

[pty10]

Hi Henry,
Welcome to CWE.

I have TLE with simple partial and complex partial seizures and my seizures affect my heart rate and give some digestive symptoms because the seizure activity goes down the Vagus nerve.

In TLE seizures it is common to see heart rate elevation as an early seizure symptom. My heart rate can go up or down, when it goes down I lose consciousness.

The increased heart rate and goosebumps sound to me like seizure symptoms not triggers.

No seizure medications I tried have helped reduce my seizures.

Having your heart rate go way up when you stand can be a sign of P.O.T.S. a form of autonomic dis-regulation.

*added- I will also get Deja Vu, nausea/epigastric rising, gooseflesh/piloerection, boiling hot and soaked in sweat and then freezing cold.

Hi Frink,

Thanks for the reply. I agree with you on the HR elevation and Gossepumps as sign of seizure symptoms. I only call then triggers because If l leave my HR to keep going up and my goosebumps to keep getting stronger in my head, It will trigger a seizure which is what has happen in the past. My seizure are the ones where my head start shaking from side to side but I'm fully conscious while it happens and at the end. I take Clonazepam (dose can vary depending where I'am and what I'm doing) and this symptoms will eventually go away. Which is a shame since you give medication to control this things but you end up taking a highly addictive medication to stop a possible seizure which makes you feel better.

Had a look in to P.O.T.S which again there's no definitive answer as to what causes it and I actually got Benzodiazepines and Beta blockers if I need to use them. Can I ask how long you been on meds for epilepsy?

 

[pty10]

pty10,

You have come to a welcoming and helpful place!
I can't tell you anything as far a information about your condition, but I know that there are many other members of CWE who should be able to help you find some answers.
Seeking a second opinion is a very good thing for you to do. It shows that you really care about yourself and want to find out what is happening! :clap:

acshuman

Thanks Acshuman

 

[Frink]

Hi Frink,

Thanks for the reply. I agree with you on the HR elevation and Gossepumps as sign of seizure symptoms. I only call then triggers because If l leave my HR to keep going up and my goosebumps to keep getting stronger in my head, It will trigger a seizure which is what has happen in the past. My seizure are the ones where my head start shaking from side to side but I'm fully conscious while it happens and at the end. I take Clonazepam (dose can vary depending where I'am and what I'm doing) and this symptoms will eventually go away. Which is a shame since you give medication to control this things but you end up taking a highly addictive medication to stop a possible seizure which makes you feel better.

Had a look in to P.O.T.S which again there's no definitive answer as to what causes it and I actually got Benzodiazepines and Beta blockers if I need to use them. Can I ask how long you been on meds for epilepsy?

I do not take any seizure medications since none of the medications I tried provided any reduction in seizures, some made the seizures worse and the rest just added side effects to my seizures.

 

[pty10]

Hi pty10, welcome to CWE! We have some Aussie members, though I don't know if they're in your part of the country.

I agree with Frink, some of what what you describe as side effects (heart rate, shivering, goosebumps) sound as if they could be partial seizures instead. At the time you switched off of each medication, how long had you been on a given med, and had you tried raising the dose? Often side effects will go away after a few months, and some seizure symptoms can be lessened or controlled on higher doses, so it's possible that you "gave up" to soon.

Zoloft can also trigger seizures in folks with epilepsy, so I suggest talk to your doc about possibly switching to a different anti-depressant.

Aside from that, do you have any sense of what triggered the initial seizures? Do you keep a seizure/symptom diary so you can track when your seizures occur? Sometimes keeping a diary can help you pinpoint particular stressors or triggers for your seizures that you can minimize or avoid. Triggers can be physical, emotional and/or environmental in nature, so keeping detailed daily notes can help. A diary can also help track if your symptoms are escalating in frequency, duration, or kind.

Best,
Nakamova

Hi Nakamova,

Tegretol: 3 months
Keppra: 18 months
Lamictal: 3 months ( at 125mg/twice a day besides having the usual other symptoms, I developed sensitivity to noise and light.
Lamictal/Keppra: 3 months (Epitologist decided to do video EEG since all tests kept coming back normal.
Dilantin: since Sept 2016

While on Keppra I had seizures at 500mg twice a day and at 1000mg/twice a day when the dose was increased. Not sure if increasing doses would stop the seizures and I think would make my side effects even worse. My understanding is that your body should get used to the medication within 2-3 weeks. If you still having side effects months after of using the same medication, you might be on the wrong med.

I only started taking Zoloft 3 weeks ago so I don't think is related to my symptoms. Urge to do # 2, being hungry after just eating something 15 mins ago, shivers, elevated HR for no reason and goosebumps in my head will eventually trigger a seizure if I don't take care of those symptoms. I do have a diary of what I eat, what time I take my meds and how I'm feeling as the day goes by. They are autonomic seizures the type with bodily functions but as mentioned before hard to find the right med or combination.

Thanks,

Henry

 

[pty10]

When I was first diagnosed with epilepsy I had tried so many meds. They either didn't work or the side effects were so bad that I had to go off of them. I was having nearly 20 seizures a month, usually complex partials but there were some grad mals too. I know I was also having simple partials but I didn't really knew what they were at the time so I didn't realize it was a seizure.

I don't know how many seizures you have but after about 4 years of all the seizures and doing the changes in meds my neuro suggested I get a VNS. Since doing this I'm only having about 4 seizures a month and they aren't nearly as bad. I am still taking meds too, not nearly as many and not as high of dosages.

I never had the rise of heart rate, shivers, strong goosebumps all over my head so I don't know if it would do anything for that. I do have some of the other problems that you described but I know it's due to the meds I'm on.

Thanks valeriedl, will look into it

 

[pty10]

What you are dealing with sounds really similar to my daughter's seizures.

Like you, the first seizures she had 3 years ago were tonic-clonics. Those were controlled with medication for almost a year, but when we switched meds due to side effects the tonic-clonic seizures came back. After a bad week with 5 tonic-clonic seizures within 4 days, she started to have simple partials that did not progress. For her they have both a perceptual element (everything feels and looks "wrong" and "weird") and an autonomic element (heart racing, flushing followed by pallor, and shaking/trembling that can be very strong). The episodes are generally 5-30 seconds long, and currently she has them a few times a month. She also has other symptoms that we are not sure whether they are seizures, side-effects or something else (anxiety perhaps?) - hand tremors, periods of time when she has difficulty concentrating, episodes of depersonalization, etc. Epilepsy can be very confounding because seizure activity can have so many different manifestations.

These partial seizures do not show up on EEGs as seizures, but 2 years ago she had a video EEG and discontinued meds and 3 of these partial seizures progressed to tonic-clonics, so we know that they are seizure activity. They are just too localized or too deep in the brain to register on a scalp EEG. But since her EEG is inconclusive when it comes to partial seizures it is hard to evaluate exactly where they originate (important for possible surgery) and to feel confident about what "episodes" are actually seizures and what may be something else.

She has been on Keppra (discontinued due to side effects), Trileptal (allergic), and is currently on Onfi (right now 15mg/day - she's tapering off of it because it was never really effective for her) and Vimpat (400mg/day). The Vimpat has completely controlled her tonic-clonic seizures, and she hasn't had one since starting it 2 years ago. What my daughter's neurologist told us is that we will probably never get full control of the partial seizures with medication. Vimpat is a great med for keeping a small localized seizure from progressing, but not so great at stopping that initial seizure activity. She may start Lamictal once she is completely off of the Onfi to see if that helps, but currently we are just living with 3-5 partial seizures a month and consider that to be "pretty good."

When you say that you've had 4 simple partial seizures are those the heart-racing/goosebump episodes you mentioned, or something else? And how long do those episodes last? As others have said, those do sound like they could be seizure activity. Many find that is much easier to control the "big" tonic-clonics than the smaller partials

the heart-racing/goosebump,urge to move my bowels episodes are the ones that could cause me a seizure if I ignore the symptoms since they will only get worse. I use clonazepam and it gets read of the symptoms and I'm back to normal in some ways but my heart will stop racing and the goosebumps will mainly go away. The only Drawback is the clonazepam can be addictive and make you drowsy. my episodes could last up to 90 secs.

And between a tonic clonic and a partial, I prefer a partial I think tonic clonics have more impact on your day to day life.

 

[masterjen]

Hi pty10 and welcome to CWE,

You commented above that you've heard/read that one should be used to the medication in 2-3 weeks, but based on my experience and what several here have said (and what my seizure specialist says as well) that this process can take 6 weeks and sometimes a little longer.

Also, increasing the medication dose should cause what you term "side effects" - which in fact is possibly an aura (which in itself is a simple partial) to which a stronger simple partial can occur - should decrease. So in my opinion, trying a higher dose is worth a try. If it is the right med or med combo an the "side effects" go away, then your "side effects" are very likely auras/small simple partials. If they do not go away it will be hard to tell if the med dose is incorrect, the meds are not the best ones for you, or what you're experiencing are only side effects!

 

[pty10]

Hi pty10 and welcome to CWE,

You commented above that you've heard/read that one should be used to the medication in 2-3 weeks, but based on my experience and what several here have said (and what my seizure specialist says as well) that this process can take 6 weeks and sometimes a little longer.

Also, increasing the medication dose should cause what you term "side effects" - which in fact is possibly an aura (which in itself is a simple partial) to which a stronger simple partial can occur - should decrease. So in my opinion, trying a higher dose is worth a try. If it is the right med or med combo an the "side effects" go away, then your "side effects" are very likely auras/small simple partials. If they do not go away it will be hard to tell if the med dose is incorrect, the meds are not the best ones for you, or what you're experiencing are only side effects!

Hi Masterjen, thanks for the advice. that's the tricky thing, the right med and the right dose. at some stage I was on Keppra (500mg/twice a day) then got bumped to 1000mg/twice a day and still had seizures. horrible neck pain and headaches among other things so not sure if increasing the keppra dose would have got rid of the headaches and neck pain. So maybe is the case that I need to combine other med to ease the side effects of the other one.