New here / different 'strength' seizures???

[Rev-Rog]

Hi everyone :0)

New/first time post, with an important (to me) question.

I've been on Prednisone for the last 10 months - for Inflammatory Bowel Disease - and I/Neurologists don't think it is the cause, but I had my first seizure around 3 months ago which resulted in loss of consciousness and a nasty tongue bite. Since then I've been having around 3 smaller/generalized seizures each day, and a few of them resulting in breaking whatever it is that I was holding, and hitting my head on hard ground.

However, around 2 weeks ago I had a cluster of over 50 Temporal Lobe Seizures within a 3 hour time frame (horrible acrid smell - that wasn't 'real) - accompanied with fainting/loosing control of my body.

I've seen two specialist, and they have put me on 1000 mg Sodium Valproate. The medication appears to be working, as I haven't had any seizures that cause me to loose consciousness (well, just one seizure 6 days ago).

However, I think I might still be having the seizures, but on a smaller scale. So, my question is, can this medication 'control' my seizures, but not stop them entirely, perhaps until after my meds are increased? I have been getting the 'smell' and slightly faint, but not as strong as before. So could these be smaller seizures of before?

Thank for your time in reading this post, and in appreciation of your response :0)

 

[Fedup]

Rev-Rog

Everybody is different and so reacts different to all medication, there is no guarantee with any medication that you will get full control, but will give partial control. The amount of control you receive and the amount of medication will depend on you and your neurologist.

Yes medication can control your seizures but not full so still allowing some seizures, but increasing the dose taken does not mean you get full control.

 

[Rev-Rog]

In denial / & my wife has had enough of my health issues :0(

Thank you for your helpful advice :0)

I am also struggling to accept that I have epilepsy, and think I am in denial.
I keep telling myself that I am making it up, and that it is not real. And that if I want to, I can stop the seizures. BUT the times I have fallen with no reason, and had no control over it, and also the cluster of over 50 that I had - are not able to be denied. I suspect this reaction (of denial) is experienced by others?

I am also in the midst of a two year diagnostic/treatment for a chronic digestive illness (IBD) for which I had major surgery 20 years ago. Only in the last 9 months of steroid treatment have I been in remission, but due to the side effects (seizures?) I am having to wean from these toxic meds, and the remission is ending - resulting a full flare which is horrific.

The above is really hard on my family, espeically my wife, who has had enough of it all :0(

 

[lindsayschu2]

Did the doctor do full blood work? If not, I would also ask them to run a full blood panel including electrolytes and B vitamins. Long-term oral steroid use isn't considered a risk factor for directly causing seizures--but it can have other side effects, such as lowering your potassium levels, that can effect seizures. If they haven't already done full blood work, including an electrolyte panel, I'd definitely ask for one since many doctors aren't as focused on the side effects of medications and it could have some indirect role here. You also have inflammatory bowel disease which could be affecting absorption of nutrients--lots of severe deficiencies can actually cause seizures in their own right, such as any of the electrolytes and a couple of the B vitamins. You would probably have other symptoms as well though if that were the case, such as muscle spasms, shortness of breath, or a list of other things, but can't hurt to cover off that base.

 

[Rev-Rog]

Did the doctor do full blood work? If not, I would also ask them to run a full blood panel including electrolytes and B vitamins. Long-term oral steroid use isn't considered a risk factor for directly causing seizures--but it can have other side effects, such as lowering your potassium levels, that can effect seizures. If they haven't already done full blood work, including an electrolyte panel, I'd definitely ask for one since many doctors aren't as focused on the side effects of medications and it could have some indirect role here. You also have inflammatory bowel disease which could be affecting absorption of nutrients--lots of severe deficiencies can actually cause seizures in their own right, such as any of the electrolytes and a couple of the B vitamins. You would probably have other symptoms as well though if that were the case, such as muscle spasms, shortness of breath, or a list of other things, but can't hurt to cover off that base.

LOL, I have to keep looking at what forum I am on, either the Epilepsy or IBD :0) Yes, it can be difficult with two different health issues, and specialists for each, but none that cover both conditions. However, I think (as you suggest), that it is my local GP who will be able to gather information, side effects and repercussions of treating the two, and I will make sure to ask him when I see him in a few weeks - and hopefully might get some indication of when I might be allowed to to drive, as I am finding that really restrictive :0)

 

[BIGMAN131307]

Having to deal with both Epilepsy & IBD is a lot to handle. But you can possibly lower the amount of seizures you have by getting a better handle on your IBD.

I'm in a similar boat as you. I suffered from CPS, along with Irritable Bowel Syndrome (IBS) and Colitis. When my IBS & Colitis would flare up, it would stress me out. This would cause me to have more CPS. But when my IBS & Colitis was in check, I had fewer CPS. Even when my IBS & Colitis, and CPS seemed to be stable, stress would ruin everything. It took some time to adjust to this life, but it can be done. In my case I opted for RTLS for my seizures. Which so far has worked. But I still battle with my IBS & Colitis daily. For that I try to eat a healthy diet, exercise, and avoid stressing out. Some days it works, others are a tuff. On those really bad days I take meds to help me deal with the IBS & Colitis. But they can sometimes make you feel worse. So I use them sparingly.

With the right combination of diet, lifestyle, and medications for Seizures & IBD you can have better quality of life. It's just going to take more effort on your part. You could also ask you speak with a nutritionist that specializes in IBD.

An increase in dosage of your current AED may help more. Or a possible additional AED, could help. AEDs work differently in everybody. You need to discuss those changes with your neurologist. Make sure your neurologist understands your IBD situation. Some AEDs can make IBD worse.

I hope you can find the right combination of treatment.

 

[Rev-Rog]

Cool, thanks BIGMAN131307, Quite a paradox with IBD and Epilespi. With my IBD I have spent the last 20 years trying to get GI Specialists to take me seriously - until finally I've started on this two year diagnosis period that started with Pill-Cam last Friday. When it comes to Epilespi, I am trying to 'down-play' it as much as I can, as I just don't have room in my life for another illness :0(

Interesting you have IBS. Since I had major surgery 20 years ago for GORD (Nissen Fundoplication) I have struggled to get GI Specialists to change their diagnosis of IBS. It wasn't until my local GP allowed me to start on Prednisone, that I have had any release. In fact, after 3 days I was in complete remission - after a 20 year flare that ruined my life. Trialing Prednisone was my last resort, as I had stopped eating and was prepared to die from malnutrition. Due to this amazing reaction to Pred (as IBS does not respond to Pred), I have been accepted for Public Funded Health Care to replace Pred with safer steroid treatment :0)

 

[ron.spector]

Hi Rev-Rog:

I was just wondering what diet you follow for IBD? Have you eliminated Gluten completely?

 

[Rev-Rog]

Hi ron.spector , if I am on a dosage of 30mg or greater Prednisone, I can eat absolutely anything. Although before Prednisone I have trialed food elimination and diet exclusion and inclusion, total diary ban, gluten ban, or fructose, vegetarian, Low FODMAP etc.. etc.. When I am a 30mg Pred or higher, I have zero food intolerances, and can eat as much diary, milk, fructose or food I want. I went from 62kg to 82kg on Pred. It is a miracle medication, but very nasty side effects. The difficult part now, is what can replace the Pred that is not as toxic. When I wean from Pred, I go back to a chronic flare, can not eat any dairy, most fruit causes chronic intestinal issues, I lose weight and have constant stomach pain, nausea and cramps. I take around 25 to 50 Loperamide (used for Gastroenteritis), as well as Buscopan, AntiNause and Loperamide. I can't - and won't go back to how I was before Pred, as quality of life is so diminished. I think I'd rather have 10 years of relative symptom free, than 20 years of how life used to be before Pred :0) Most people have experienced a nasty Gastroenteritis bug, with nausea, cramps, pain, diarrhea and vomiting. I pretty much lived with that constantly - every hour of every day, for 20 years, and now that I have found something that allows me to be completely symptom free - has been amazing!

 

[BIGMAN131307]

Cool, thanks BIGMAN131307, Quite a paradox with IBD and Epilespi. With my IBD I have spent the last 20 years trying to get GI Specialists to take me seriously - until finally I've started on this two year diagnosis period that started with Pill-Cam last Friday. When it comes to Epilespi, I am trying to 'down-play' it as much as I can, as I just don't have room in my life for another illness :0(

Interesting you have IBS. Since I had major surgery 20 years ago for GORD (Nissen Fundoplication) I have struggled to get GI Specialists to change their diagnosis of IBS. It wasn't until my local GP allowed me to start on Prednisone, that I have had any release. In fact, after 3 days I was in complete remission - after a 20 year flare that ruined my life. Trialing Prednisone was my last resort, as I had stopped eating and was prepared to die from malnutrition. Due to this amazing reaction to Pred (as IBS does not respond to Pred), I have been accepted for Public Funded Health Care to replace Pred with safer steroid treatment :0)

I know how you feel. It took me several years to figure out why I was having so much stomach pains, constipation, diarrhea, etc. It took several tests colonoscopys, endoscopy, ultrasound, etc. The pain was so bad I ended up in the hospital a few times.
At one point it felt like I was having a heart attack. My road to IBS actually started because of my Epilepsy. Many of the various AEDs I was on over the years really wrecked my digestive system. They cause problems like kidney stones, gallstones, IBS & Colitis. Eventually I needed to have my gallbladder surgically removed. To deal with my IBS & Colitis I take two different medications. For my stomach pains before or after I eat, I take Levsin. This is a antispasmodic drug that keeps your stomach and intestines calm so you can digest your food. It also helps to prevent diarrhea. If I do have a bad bout of diarrhea I take Lonox (Lomotil). This is a Rx anti-diarrhea medication much stronger than OTC Imodium. IMO one Lonox works like three OTC Imodium. So I take those sparingly, because they cause constipation. One or both of these lost there FDA approval so I pay cash for them. But they help me, so I use them carefully.

At least five years after having that surgery I still have problems. It's a balancing act between diet, exercise, stress, medications to keep my IBS & Colitis in check. My primary goal is to keep a regular routine. Once or twice a day would be great. It's getting the length of time in there lowered that's the problem.

You need to get the right medications that work for you. Once you understand how your body works with these medications, you can get better. The very least a better version of your current self. Remember the the stress caused by your IBD can bring on seizures, or seizures can effect your IBD, etc.

Hopefully you can also get a hold, or at least a better control on it.
Feel better.

 

[Rev-Rog]

Quick update. Just seen my GP, and he has suggested increasing Sodium Valproate to 1500mg p/d, as I was still having smaller seizures each day. I started the increase a few days ago, and seem to be ok, with the worse side-effect being a very dry mouth and metallic taste. Had one seizure at the cafe across the road, where I had to hang-on to the counter, and might have had a larger one today because I can't remember what happened, but was upstairs in my room to use the bathroom and woke up on my bed with a hit to my eye and bent/buckled spectacles. I might have blacked out??? I just don't know. When I had my first seizure - I didn't - and still don't know what happened, just that I found myself dazed with a huge bite to my tongue :0)

 

[Rev-Rog]

Arg. Happened again. Went to a movie with my lovely wife, and had a seizure as we were leaving our seats. Bit through my top lip :0(

 

[Blonde Angel]

Hi there Rev-Rog
hang in there you are definitely going through a battle ATM, but it seems you are a fighter.
I can relate to what Bigman is posting about medication suitability & the bowel issues. My Girl has IBS which is diet controlled.
Write a list of what you're experiencing don't be afraid to ask any qns no matter how dumb and be an advocate for yourself.

Yes, it's hard on family members but love does conquer the crap with epilepsy.
Remember every drug has a side effect & it's a process of trial and error to find what works for YOU. Drugs don't cure seizure but control its severity & frequency.
All the best.

 

[MAB]

Hi everyone :0)

New/first time post, with an important (to me) question.

I've been on Prednisone for the last 10 months - for Inflammatory Bowel Disease - and I/Neurologists don't think it is the cause, but I had my first seizure around 3 months ago which resulted in loss of consciousness and a nasty tongue bite. Since then I've been having around 3 smaller/generalized seizures each day, and a few of them resulting in breaking whatever it is that I was holding, and hitting my head on hard ground.

However, around 2 weeks ago I had a cluster of over 50 Temporal Lobe Seizures within a 3 hour time frame (horrible acrid smell - that wasn't 'real) - accompanied with fainting/loosing control of my body.

I've seen two specialist, and they have put me on 1000 mg Sodium Valproate. The medication appears to be working, as I haven't had any seizures that cause me to loose consciousness (well, just one seizure 6 days ago).

However, I think I might still be having the seizures, but on a smaller scale. So, my question is, can this medication 'control' my seizures, but not stop them entirely, perhaps until after my meds are increased? I have been getting the 'smell' and slightly faint, but not as strong as before. So could these be smaller seizures of before?

Thank for your time in reading this post, and in appreciation of your response :0)

I'm on lamictial and it partially controls my seizures. I used to have phantom odors that would last for hours or days.Now I may occasionally get a whiff of something that I know isn't real, but it's very brief. As for the other symptoms, such as a heaviness in my left arm, it's almost as bad as ever. Getting rid of the phantom odors is a big deal for me.