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Debbie53

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I hope I am posting this in the right room. I have had epilepsy since I was 18 years I am now 53. I have been told that it is Juvenile Myoclonic. As I am with a new neurologist he has not got my full history. I am sure that I have Tonic Clonic as well as I had a big one in 2012 where I had a lot of jerking and then loss of consciousness. I always get a warning where I have a stomach ache or my head "buzzes" or it is "fuzzy". This meant that sodium valproate needed to be increased to 800mg (400mg twice daily). I had taken sodium valproate for 30 years. So my mother said that I should come off it as if it had to be increased again I would be really sedated. My previous neurologist did not say to me that it was a good idea to come off sodium valproate even though it is well known by the medical profession that it is indeed a sedative. I know that it was controlling my epilepsy but no-one in the medical profession told me that my body could be used to this drug. I have got this information from this website. So I am really glad to have found it.

I am consulting a new neuro as the first one was, well, did not help me to stop taking zonisamide. I was having an absolutely awful time. My mother eventually understood that I was not myself - I was not laughing like I usually do.

I had a horrible Christmas 2016. I kept telling myself that I was ok. But really there was something wrong. Has anybody had the "aching" that is noted as a side effect in the product information leaflet that comes with the AEDs?

I live in the UK.

Is there anyone that is taking lamotrigine and an add-on? Lamotrigine is not working for me and one of the plans that my neurologist has suggested is using lamotrigine at a lower dose and also lacosomide. I don't know the strength of lamotrigine as 100mg did not work, nor did 125mg. Any help would be greatly appreciated. Debbie
 

Bernard

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Hi Debbie, welcome to CWE. :hello:

I don't have any answers to your questions, but I did want to welcome you. My wife had to transition off of Dilantin after taking it for many, many years and it was a horrible experience trying to find a new aed solution that works for her. All I can suggest is being patient with the process.
 

Nakamova

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Hey Debbie53, welcome to CWE!

Zonisamide messed with my moods too! I eventually switched to lamotrigine, which has been much better for me. I'm on 225mg per day. If you're only at 125mg/day of the lamotrigine, perhaps a higher dose would work?

I haven't tried lacosamide (Vimpat) but other CWE members have -- you might try a separate post about it (with lacosamide in the title) so folks will see it and respond.

best,
Nakamova
 

Porkette

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Hi Debbie53,

Welcome to the forum! Years ago I took Depakene (valproic acid) and it worked great until my body got used to. A couple of yrs. ago I started Lamotrigine but I broke out with
a rash after 4 days on the med. I hope it works well for you. Everyone here has been a great friend and a big help to me and I've learned a lot even though I've had seizures
for 46 yrs. Here's wishing you well and May God Bless You!

Sue
 

Debbie53

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Hi Debbie53,

Welcome to the forum! Years ago I took Depakene (valproic acid) and it worked great until my body got used to. A couple of yrs. ago I started Lamotrigine but I broke out with
a rash after 4 days on the med. I hope it works well for you. Everyone here has been a great friend and a big help to me and I've learned a lot even though I've had seizures
for 46 yrs. Here's wishing you well and May God Bless You!

Sue
Hi Porkette, I don't know if it was you but I posted something a while back and you answered saying that you were also on lamotrigine and another drug. I was unable to reply as I was having trouble login in on for some reason. I wonder if it was my anti virus protection.

I am really sorry to be rude and not answer you.

It was lovely to hear you also took valproic acid (us English call it sodium valproate) for many, many years. More than me! The first neuro was so arrogant. To tell you truth you would think that he thought he was better than us as he had the learning of medical knowledge. My second neurologist was the only one to tell me that I should not have taken that AED for 30 years.

Have you ever had to consult a neuro who never wrote a statement that was categorically right or wrong. He would say in his letters to my GP and me "I think" or "unlikely". My GP, who I would trust with my life, said that it isn't very helpful. What is the point of this neuro being a doctor when he won't impart his knowledge which took him many years of hard work and some long hours. I know it will be a fear of being "sued" but that is not an excuse.

As you can tell that I still hate this man. Now I am able to get on with my life as I wrote a lot about this neuro to my new neurologist as he did not help me stop an AED. I feel better that someone knows what a horrible time I had. I can only hope that I have embarrased this neuro in front of my different neurologist.

Yes I agree with everything you have said. A lot of people have given me a great deal of help on this website. After and because of what has happened I have done a lot of research about the many different types of Epilepsy there are. I was diagnosed with Myoclonic Epilepsy. My new neuro told me it was Juvenile Myoclonic Epilepsy. I think I have Tonic Clonic as well. I have had a few seizures just before I was diagnosed at age 11 so I think I will tell my neurologist when I next see him.

Can you tell me if I am right. I get the feeling in my stomach that I am going to be sick only I know it is a warning. Then my head buzzes. Then I fall and I am unconscious. The bus driver and my sister both said I jerk and it looks like what is shown on the TV.
Debbie
 

Debbie53

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Hi Debbie, welcome to CWE. :hello:

I don't have any answers to your questions, but I did want to welcome you. My wife had to transition off of Dilantin after taking it for many, many years and it was a horrible experience trying to find a new aed solution that works for her. All I can suggest is being patient with the process.
Thank you for welcoming me Bernard. It's lovely of you. I have had a lot of trouble especially as the first neurologist did not have any empathy for what was happening to me. So it is so lovely that I am getting loads of wishes from you all. You will have to excuse me as I get quite emotional.

I hope your wife is ok now.
Debbie
 

Debbie53

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Hey Debbie53, welcome to CWE!

Zonisamide messed with my moods too! I eventually switched to lamotrigine, which has been much better for me. I'm on 225mg per day. If you're only at 125mg/day of the lamotrigine, perhaps a higher dose would work?

I haven't tried lacosamide (Vimpat) but other CWE members have -- you might try a separate post about it (with lacosamide in the title) so folks will see it and respond.

best,
Nakamova
Hi Nakamova, Can I ask you what side effects you were getting? If you don't want to answer tell me. I will understand as I had a horrible time.
 

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Hi Debbie53,

It sounds like you and I have a little in common when it comes to Drs. and our seizures. I started having seizures at age 10 (56 in a couple of weeks). First it was absence seizures then by the age of 12 complex partial seizures also. A few yrs. ago I had myoclonic seizures and my Epileptologist which is a Dr. who specializes in epilepsy did a sleep study on me and found I was having seizures in my sleep which I couldn't even tell except I would wake up feeling more tired and I did some jerking around either when I first got up or when I went to bed then my Dr. put me on vimpat and the myoclonic seizures stopped. You
mentioned that you start to get a feeling in your stomach that you are going to get sick and then your head buzzes this could be a simple partial seizure which often leads into a full seizures. My Dr. told me yrs. ago that the moment I get the nervous feeling in my stomach to tighten up all the muscles in my body and make my hands into tight fists and if you do it in time it stops the seizure and take my word it has worked wonders.
Also my Dr. put me on the medical marijuana (CBD oil) and that has reduced my seizures a lot. If you haven't started to keep track of any seizures be sure to get a calendar and write down what time the seizure happens and the type of seizure you had by doing this the Dr. can sometimes see a pattern in a persons seizures. I always have them between the 18th and the 25th of each month. I have 2 or 3 seizures and that's all do to hormones changing. Another thing you can take note of is if you have any seizures when there's a low pressure in the weather because that can sometimes bother a persons hormones do to the air getting heavier and in turn trigger a seizure. What I found interesting is I have what is called "seasonal seizures" I have more in the fall and winter compared to the spring and summer and that's because there's less serotonin in the fall and winter so I have learned to sit around bright lighting and that helps a lot.
Take my word I've had my share of not so good neurologists. Then I started seeing an Epileptologist and I have gotten the most help with this type of Dr. they know more about epilepsy, how to treat it with the least meds and they also look into surgery if the person wants it. I had this done about 20 yrs. ago and my seizures reduced. If you would like to see a Epileptologist ask your primary Dr. to refer you to one and hopefully your seizures will be reduced much more. I wish you the best of luck and May God Bless You!

Sue
 
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Debbie53

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Thanks for the information Porkette/Sue



Hi Yes Sue I think I am exactly like you. I do keep some sort of track of my seizures but not about the weather. I will do that. It's more information for my neurologist.

You mentioned the word "Epileptologist". The neurologist that I first consulted was indeed a specialist in Epilepsy. In the UK there is a department called Neurosciences. The hospital here gave my name to a neurologist who specialises in Epilepsy. We don't use the term "Epileptologist". I now consult a neurologist who specialises in Parkinsons Disease and any other motor diseases. He has 4 exams (letters) after his name. He is a lovely man. It is ironic - I think that is the right word. I am getting more help from him than the actual clinician who is the specialist in Epilepsy. My new neuro asked me all about what happens when I have a seizure and explained what they are called. The other neurologist - specialist in Epilepsy - did nothing like that. I don't even think he looked at my medical records. In one of his letters to my GP he had written, "She describes occasional twitching or jerking episodes[ but I am not sure that these are seizures." I don't understand what this man was up to. He could not see that I was in withdrawal when I first went to see him. I was coming off levetiracetam (Keppra) and was nearly taking the full amount of zonisamide (100mg twice daily). He did not even ask me how I felt. He is a doctor and he is supposed to ask me these questions isn't he as that is how a doctor comes to his diagnosis.

Can I mention Sue that I think I was even hallucinating the first time I saw him! Something happened which should not have been there.

Thank you for telling me what happens to you as I too always jerk and twitch when I just get into bed. I am fully awake like you. It happened last night and I was a little upset. It's not a nice feeling. I know these are called seizures but they are so small that I feel daft in saying that word.

I was diagnosed when I was 18. I now remember things that happened when I was about 11 onwards having seizures like you. When I next see my neuro I will tell him these extra bits of information and I am going to see my GP too.

You mention vimpat. I've never heard of that before. I will mention that and ask him about it. I'm not asking him that I should start taking it I just want to ask him as he is a man who will listen. Just like my GP.

Thank you for listening and your help. It is really thoughtful of you.
Debbie

Hi Debbie53,

It sounds like you and I have a little in common when it comes to Drs. and our seizures. I started having seizures at age 10 (56 in a couple of weeks). First it was absence seizures then by the age of 12 complex partial seizures also. A few yrs. ago I had myoclonic seizures and my Epileptologist which is a Dr. who specializes in epilepsy did a sleep study on me and found I was having seizures in my sleep which I couldn't even tell except I would wake up feeling more tired and I did some jerking around either when I first got up or when I went to bed then my Dr. put me on vimpat and the myoclonic seizures stopped. You
mentioned that you start to get a feeling in your stomach that you are going to get sick and then your head buzzes this could be a simple partial seizure which often leads into a full seizures. My Dr. told me yrs. ago that the moment I get the nervous feeling in my stomach to tighten up all the muscles in my body and make my hands into tight fists and if you do it in time it stops the seizure and take my word it has worked wonders.
Also my Dr. put me on the medical marijuana (CBD oil) and that has reduced my seizures a lot. If you haven't started to keep track of any seizures be sure to get a calendar and write down what time the seizure happens and the type of seizure you had by doing this the Dr. can sometimes see a pattern in a persons seizures. I always have them between the 18th and the 25th of each month. I have 2 or 3 seizures and that's all do to hormones changing. Another thing you can take note of is if you have any seizures when there's a low pressure in the weather because that can sometimes bother a persons hormones do to the air getting heavier and in turn trigger a seizure. What I found interesting is I have what is called "seasonal seizures" I have more in the fall and winter compared to the spring and summer and that's because there's less serotonin in the fall and winter so I have learned to sit around bright lighting and that helps a lot.
Take my word I've had my share of not so good neurologists. Then I started seeing an Epileptologist and I have gotten the most help with this type of Dr. they know more about epilepsy, how to treat it with the least meds and they also look into surgery if the person wants it. I had this done about 20 yrs. ago and my seizures reduced. If you would like to see a Epileptologist ask your primary Dr. to refer you to one and hopefully your seizures will be reduced much more. I wish you the best of luck and May God Bless You!

Sue
 

Debbie53

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Vimpat

Hi Porkette,

I have just found out through another post, I think by Nakamoto, that vimpat is lacosomide. I think, as we are similar vimpat could work for me but as everyone's body is different the strength might be different.

Thanks
Debbie

Hi Debbie53,

It sounds like you and I have a little in common when it comes to Drs. and our seizures. I started having seizures at age 10 (56 in a couple of weeks). First it was absence seizures then by the age of 12 complex partial seizures also. A few yrs. ago I had myoclonic seizures and my Epileptologist which is a Dr. who specializes in epilepsy did a sleep study on me and found I was having seizures in my sleep which I couldn't even tell except I would wake up feeling more tired and I did some jerking around either when I first got up or when I went to bed then my Dr. put me on vimpat and the myoclonic seizures stopped. You
mentioned that you start to get a feeling in your stomach that you are going to get sick and then your head buzzes this could be a simple partial seizure which often leads into a full seizures. My Dr. told me yrs. ago that the moment I get the nervous feeling in my stomach to tighten up all the muscles in my body and make my hands into tight fists and if you do it in time it stops the seizure and take my word it has worked wonders.
Also my Dr. put me on the medical marijuana (CBD oil) and that has reduced my seizures a lot. If you haven't started to keep track of any seizures be sure to get a calendar and write down what time the seizure happens and the type of seizure you had by doing this the Dr. can sometimes see a pattern in a persons seizures. I always have them between the 18th and the 25th of each month. I have 2 or 3 seizures and that's all do to hormones changing. Another thing you can take note of is if you have any seizures when there's a low pressure in the weather because that can sometimes bother a persons hormones do to the air getting heavier and in turn trigger a seizure. What I found interesting is I have what is called "seasonal seizures" I have more in the fall and winter compared to the spring and summer and that's because there's less serotonin in the fall and winter so I have learned to sit around bright lighting and that helps a lot.
Take my word I've had my share of not so good neurologists. Then I started seeing an Epileptologist and I have gotten the most help with this type of Dr. they know more about epilepsy, how to treat it with the least meds and they also look into surgery if the person wants it. I had this done about 20 yrs. ago and my seizures reduced. If you would like to see a Epileptologist ask your primary Dr. to refer you to one and hopefully your seizures will be reduced much more. I wish you the best of luck and May God Bless You!

Sue
 

Sabbo

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Hi & welcome to the group. I have simple & complex partial seizures, and I've been on every AED out there.
I'm currently on 300mg Zonisamide & 400mg Topamax/day. I still get 1-3 breakthrough complex partial seizures/month. I was taking 400mg Vimpat but had to switch to Zonisamide due to insurance.
 

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Hi Nakamova, Can I ask you what side effects you were getting? If you don't want to answer tell me. I will understand as I had a horrible time.
Zonisamide made it hard for me to eat. It's an appetite suppressant, and it also gave me a sour (acidic) stomach, which made eating even harder. It's also the only med I've had cognitive and mood issues on -- while on it I had trouble with word-finding, and I became prone to anger and sadness (I'm usually very even-keel). I only stayed on it 6 months -- I was about to request a switch when I had a big seizure, brought on I think by the low blood sugar and dehydration that Zonisamide caused. Recovering from the seizure took much longer than from any other seizure I've had.

After I was on it, the FDA came out with a warning that Zonisamide can cause metabolic acidosis. See https://www.ashp.org/news/2009/02/23/fda_says_zonisamide_can_cause_metabolic_acidosis and the symptoms seem similar to what I was experiencing.
 

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Topamax causes short term memory and "word-loss" issues--so its nicknamed Dopamax. I will often know what I want to say, & can even 'see' it in my mind, as if it's written on paper, but my brain and mouth can't connect.
 

Debbie53

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Hi Nakamova, regarding the side effects of zonisamide. yep, I had found it really hard to eat - absolutely no appetite. I was unable to tell my mother and the medical profession that I wanted to stop taking it - a neurologist said that this means I was sedated. The UK only gave it a licence in 2012 so it is a new drug for us. I had a seizure with it too.

Did these side effects happen soon after you started taking zonisamide. Did the withdrawal symptoms not go away. I'm asking you this as the withdrawal side effects were awful for me. I felt like a drug addict going through "cold turkey". No I have never taken recreational drugs but I felt like I was. There was a of "wizzing about" all over my body. Of course this effect was not even stated in the information leaflet with the pills. It would have to be me that suffered side effects not even known.The side effects went away for 2 months then came back again. I stayed on it for 8 months but I should have come of it months ago. Was it the same for you?

Debbie
 

Debbie53

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Thank you Bernard for your explanation on my post being refused.

Haven't spammers got anything better to do?
 

Nakamova

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Hey Debbie -- it felt like the Zonisamide side effects gradually worsened over the 6 months I was on it. I tapered off of it slowly though (over about 3 months), because I was tapering onto Lamotrigine at the same time. The side effects from the Zonisamide didn't persist -- my appetite, mood, and cognitive abilities all recovered.
 

Debbie53

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Side Effects of Zonisamide

Hi Nakamova/Sue,

As soon as I decreased zonisamide by 50mg to 150mg - I was taking 100mg twice daily - the "aching" and low mood disappeared. The other things - burning patches and parathesia - disappeared after 2 months.

I am still having problems with lamotrigine so will be adding another drug. I hope it will only take a short time to sort things out.

I hope you are having a good day.

Debbie
 

Debbie53

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Zonisamide

Hey Debbie -- it felt like the Zonisamide side effects gradually worsened over the 6 months I was on it. I tapered off of it slowly though (over about 3 months), because I was tapering onto Lamotrigine at the same time. The side effects from the Zonisamide didn't I persist -- my appetite, mood, and cognitive abilities all recovered.
Hi Nakamova,
It only took me 3 weeks. Decreased zonisamide 50mg every week not every two weeks which was very strange. The neurologist said to do it every week. I just wonder if he could be bothered with me at all.

Right I must stop talking about the neurologist who did not help me as I need to forget him - he is pathetic. I am wasting far too much energy on that man.

Have a good week - I'm trying to.

Debbie
 

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Hi debs I on 200mg lam also uk gal are there any decent hospital that specialise up there.
 

Debbie53

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Which Hospital is the Best - NE of England?

Hi debs I on 200mg lam also uk gal are there any decent hospital that specialise up there.
Hi Seagull (what's your name, I feel silly signing that - good moniker though!)

A particular hospital I go to is ok - can I name the hospital? Probably not though. I used to consult a particular neurologist who did not help me and so I am now consulting a different neurologist who is a lovely man. He is actually a Specialist in Parkinson's Disease. He does have a really good knowledge of Epilepsy. He has gained 4 sets of letters after his name. Is that how you describe them? He is really friendly. You can talk to him as though he is a friend and not someone who is "up there with the gods".

To tell you truth I am really finding it difficult to stop thinking what a horrible man I used to consult and still is. I had to write a review of him as I will never be able to trust him again. Of course it was a bad one and I posted it onto the website "I want great care" It states that it isn't owned by the NHS but it is. If a bad review is written the clinicians are allowed to report them and straight away get them taken off. Its disgusting isn't it? The name of that website is a a misnomer or it is sarcastic as you cannot trust it to give you truthful views on who will indeed give you "great care". I don't advise you to use it. Am I able to use that term, Bernard? Or am I speaking to a robot :roflmao:

All reviews that are written have a place where you can click to say that you find it helpful. Well, the good one that is up there on this website has,wait for it, 76 clicks saying that the people find this helpful. Mine has 7. Can you tell me if that "76 clicks" is rather unrealistic. I have never seen a review that has that many clicks. It just show you what a pathetic man the consultant really is. He is obsessed with his personna on a website rather than how good he really is.

Anyway, Seagull, it is nice to speak to someone who is in my neck of the woods. It still is lovely to "speak" to the Americans of course. I have actually learnt all about caffeine on this website. The previous neuro told me not to drink coffee but did not tell me why.

Are you down South? I am on 250mg (125mg twice daily) lamotrigine. Was increased after 1 year of taking it as I started having seizures - very tiny ones - which was strange. I don't doubt that it was my Epilepsy. As it says in the Patient Information Leaflet in the box with the medication everyone reacts differently to any drug.

How is your Epilepsy doing? Are you still visiting your neurologist or your GP?

I must go to bed now as it nearly 1am.

Debs
 
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