[Info] Long term effects of Keppra & Vimpat

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Hi all,

I ran upon this forum while searching through google. Please bare with me while I explain my situation.

In 2010 I was placed on Keppra as a last ditch effort to stop seizures that suddenly landed me in intensive care 3 months after the birth of my child. My dose had to be steadily increased to 4,000mg over the course of 3 years. I am still on it.

In 2013 I was admitted for a video EEG which discovered partial seizures and finally ended with the grand-mal out of camera range because I had went to the bathroom but it was caught on the monitor. Thankfully the nurse saw the wave change and raced into my room before I hit the floor. They realized my seizures was affecting the whole right side of my brain and entire frontal lobe. I wasn't a candidate for brain surgery so I was fitted for a VNS. They implanted it in the summer of 2013.

After my vns I began the dark road of medicines and the words "Well we can try this.." Topamax caused kidney stones and severe hallucinations. So bad I thought water coming out of our bathroom tub was gold. Freaked my spouse out to the point he thought I had lost my mind. So, the Dr put me on Vimpat. Finally, I stabilized on 800mg of the treatment in 2014. My seizures went from 17 partials a day and a complex once a month to no partials and one complex every 3 months or so. After the seizures slowed down my family urged me to start exercising and "get back to life". So, I did. I ran a marathon in 2015, and did cross fit 5 times a week. During that time I started to feel sick. I cannot explain it, but it took everything in me to exercise everyday, and my belly started to distend if I my anxiety level raised. Which started to be a lot, so much so, I couldn't walk through Walmart without having a panic attack. My life went down hill from there, and I started having this sense that death was chasing me. I couldn't explain it.

In January 2016 I was reorganizing our home after Christmas when I suddenly came to a crashing halt. I was rushed to the ER with chest pain, and there my stomach distended so much they believed my intestines had perforated. They did a round of tests and discovered I was extremely constipated, septic, and suffering from numerous blood clots in my lungs. My family was told that night I was going to die. They rushed me to radiology placed a IVC into my back, and from there I was rushed into the ER where I lost my entire colon, and given a ileostomy. Once out of surgery I spent a week on life support. Somehow I survived. I wished my story ended there, but it doesn't.

After, this occurred the surgeon who performed the emergency surgery told my family that the scars on the creases of my arms, from the multiple ambulance rides and IV's I have had from epilepsy, was from me doing drugs. It's hard for me to even write that! So, when I was extubated the Dr came in and I reached out for her to thank her for saving my life, and she wouldn't accept my appreciation. Instead she stood there yelling at me to tell her about this "drug habit" and when I told her I wasn't on anything she told me I was. I was absolutely so confused I just started crying and told her to check my hair that I was not on anything. She shouted at me to "SHUT UP" and seek psychological help. When her colleagues did their rounds one asked me if I would talk to a psychologist and I agreed. He came in we spoke for about 2 hours and he left. The next surgeon to come into my room that evening said he read the psychs report and toxicology readings and saw that I was of sound mind and showed no signs of drugs. This didn't help matters at all, because this horrid Doctor had my entire family at my home tearing the house apart to find whatever it was I was suppose to be on. I pretty much spent that time alone in the hospital trying to piece together what in the heck happened, and started to ask each different Dr questions. One thing they all kept repeating was my white count. They couldn't figure out why it was so low. My heart was being abnormal so they chalked it up to the VNS. Check ups after that I was staying anemic, still running fevers off and on, blood in my urine and lower back pain that has completely debilitated me. Since then my health has declined drastically. I cannot get off the couch, because I'm tied to a heating pad. I have repeatedly complained to my primary about this back pain, all the want to do is send me to physical therapy. I tried to explain to them if I cannot bend over, walk up stairs, or touch my toes I cannot do physical therapy. (Now remember I ran a 5k just a year prior) They look at me like I am lazy, depressed, or drug seeking. The last part makes me want to throat punch them all. I don't sleep and when I do sleep the pain in my back wakes me up. I'm terrified to even ask for pain relieving medicines because of how I was treated when the surgeon did the surgery.

I am beginning to think these two specific drugs, especially the high doses I am on, are the problem behind these problems. How can a person go from being a vibrant full of life person to a anxiety house bound lifeless human being! I am 34 years old! The ileostomy doesn't bother me because the pain I felt in my stomach for the year prior has been a relief! However, I still get distended in my stomach if I get upset. I'm not constipated, but I keep diarrhea. I have lost over 50 pounds since this surgery, and I am constantly being put on steroids for the lower back pain, and skin that is so dry it bleeds even with lotions! All I want is my life back. I'm tired of the assumptions from the medical community, and I am tired of being shot down whenever I try to advocate for my own health! What has me so perplexed about my heath is I was finally able to get my medical records, and that night my intestines never ruptured, but there major damage to the outside of the intestines, and it showed my gut had been dying for a long period of time. My research has showed "possibilities" of intestinal ischemia, but no one has been linked directly to this/these drugs for it. I am almost positive the wretched back pain I have suffered SILENTLY with is linked to Vimpat. I am a mother of 3, and I feel absolutely hopeless. I have lost all confidence in the medical field, and any or ALL hope that someone will actually listen to me. That surgeon, who abruptly left, has completely ruined my life. I don't even want to participate in life because of all that has happened. Just trying to type this out has been difficult because my brain is so foggy I can't seem to get the sentences put together right or the words for that matter. I hope somebody on here can help give me some kind of information, because I'm tired of trying to prove to people what I am feeling is real and what she said I am, I'm not. I feel like my body is just slowly disappearing, and everyone around me just doesn't care to listen. Help..
 

Topcat

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Welcome to the Forum.

Have you thought about a Malpractice lawsuit?

Just a thought.
Sometimes I will say something like, "Hey I'm just the victim". . . "Um I mean patient."
It sure can get frustrating.
I felt really weird twice last summer that was caused no doubt (in retrospect) by common Trileptal side effects. At the time though I thought something was really wrong. So in both cases I went to the emergency room.
The people at the emergency room , doctors, nurses, what have you didn't know squat. None had heard of a VNS.
Very frustrating.
I have been going through this for close to 14 years. (My seizures are caused by a closed head injury.)
I don't know what to tell you, all I can do is sympathize.
Many of us here have had Keppra problems (rage).
Whether they (Vimpat & Keppra) have long term effects see what your neurologist has to say.
If you don't like it you can always get a new neurologist.
Hang in there. Best of luck.
 
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Nakamova

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Hi cheekymonkey,

first of all,

:hugs:


I can't believe all you've been through. The medical problems are bad enough, but to have a doctor sabotage you is absolutely horrific.

That said, there are good doctors out there, and the trick is to find them. If it's at all possible, seek out second and third opinions. Start fresh with new docs and a new hospital. Bring an advocate to any medical meetings and keep records of what is discussed. If your family and friends are unable to accompany you, perhaps there are patient advocate services in your area. A social worker might be a good resource as well.

Don't give up hope!
 

Nakamova

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Cheekymonkey, a few more thoughts:

1. Definitely have a doctor take a close look at the medications you are on. Since you have been on Keppra the longest, I would start there. It can cause lower back pain, so it may be a contributing factor, even if your other meds have also played a role. Since other conditions such as kidney stones or issues with the liver and pancreas can also appear as back pain, it's important try and nail down the primary cause (rather than rely on pain relief with steroids, which are heavy-duty meds in their own right).

2. Vimpat can cause bloody urine, lower back pain, fevers, and irregular heartbeat. If you are continuing to suffer from these symptoms, it may be a contributing factor.

3. Bloody urine is a serious symptom all by itself -- you should be evauated by a kidney specialist if this is an ongoing issue.

4. What was determined to be the cause of the blood clots in your lungs? Given how physically active you were at the time, the usual risk factors for pulmonary embolisms weren't present.

5. Were you prescribed vitamins post-ileostomy? A relatively common post-surgical side effect is B12 deficiency. If untreated, it can lead to anemia, as well as fatigue, shortness of breath, faintness, brain fog, and irregular heartbeat. Deficiencies or malabsorption issues with vitamins A, E, D, and K are also common post-ileostomy, and can lead to things like dry skin.

6. The diarrhea and weight loss may also be a result of the ileostomy and absorption issues related to the damaged area. Kidney stones can also result, so your back pain should be monitored keeping that in mind.

7. The exercise routine you adopted in 2014-2015 could have contributed to your development of intestinal ischemia: Vigorous exercise (such as the 5x/day crossfit) and long-distance running can make an individual more vulnerable to intestinal ischemia. Excessive constipation is also a risk factor. So it would be difficult to pin the ischemia solely on Keppra and/or Vimpat. The Topamax could have contributed as well, esp. if it had lasting effect on your kidney function.

8. Given that you may be at risk for kidney issues, and given the absorption issues that can occur post-ileostomy, it might be a good idea to talk to your neuro about adjusting your AED meds. A dietary evaluation could also be helpful to look for nutritional adjustments and nutritional supplements that could improve your energy levels and overall wellbeing.
 

Cint

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Hi cheekymonkey,

Sorry to hear of your living nightmare. I believe it could be meds, too. There are many side effects to all medications so speak to your pharmacist. Don't let any doctor intimidate you to the point of sabotage. Take him to court if you have to!
I went thru H#(( with numerous medication changes and depression, too. With the change in meds for depression, I ended up with Type 1 Diabetes. So now in addition to my AEDs, I have to give myself insulin with every meal and in the morning/bedtime. I also have the VNS because of the failed brain surgery. The lobectomy made my seizures worse, so I tried many meds..... ALL DO HAVE SIDE EFFECTS..... some worse for me. I couldn't take several because they lowered my WBC, others made me suicidal, the list goes on and on. I am now taking Keppra and a low dose of Topamax because that is what works for me. Initially, the Topamax made me such a space cadet, I couldn't remember yesterday, so that's why I'm on such a low dose now. But the good side of Topamax for me, I LOST 20 lbs. initially!

So as Nakamova said, get another opinion. See an epileptologist who know/specializes in epilepsy. Keep searching until you find someone who LISTENS! A doctor's motto is "First DO NO HARM".

Read here for more info about AED side effects:
http://www.epilepsy.com/learn/treat...y/seizure-and-epilepsy-medicines/side-effects
What unpredictable side effects can occur?
Many side effects are unpredictable and are not related to the dosage or level of medication in the blood. They may also be called ‘idiosyncratic’ side effects. These can include:
~Rash
~Problems with the liver or pancreas
~A serious drop in the number of white blood cells in your body (needed to fight infection)
~A serious drop in the number of platelets in your body (needed to control bleeding)
 

Topcat

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Seems like pills work differently for a lot of people.
Keppra has the worst reputation it seems like with the "Keprage."
That kind of snuck up on me though. I didn't know at first that was what was causing me to be so crazy/mad.
At first I didn't even realize that was happening to me.
Topamax made me act really mad right away and I knew it.
Vimpat did nothing to help me . It just cost me a lot, there was no generic for it then.
The Aptiom they have me trying seems to not have the drowsy effects of Trileptal, but isn't helping me any better.
There is no generic for that so if my insurance won't cover it I will need to respectfully recline from taking that.
Depakote worked well enough but was starting to damage my liver.
Pheno barbital was really putting me on Cloud Nine.
It's very frustrating, very hit or miss.
 

Elsie

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Topcat, that's interesting that you say the Trileptal makes you drowsy. Any doctor I've ever had has denied that my Trileptal makes me sleepy. They all look at me like I'm nuts.

Don't y'all wish these doctors would have to be on this stuff themselves for a while...wonder what they'd say then?

CheekyMonkey, I hope you get some help and feel better soon.
 

Cint

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Elsie, maybe the dr. is telling you that Trileptal doesn't make you drowsy because it is also used as a mood stabilizer. I was on that drug also. It didn't do a thing for my seizures or my mood. However, it did cause my sodium level to drop too low, so I was taken off that drug. Being too drowsy and lack of energy, headache, confusion can be symptoms of low sodium. If they continue, ask your dr. to check your sodium level.

Like I've said before, talk with your pharmacist about the side effects of the meds. They can tell you more about drugs than the docs.
 

Topcat

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Elsie: my neurologist agreed thus the Aptiom trial.
 

Sabbo

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Hi. Sorry to hear about all the problems you've had. I'm currently on Topamax & Vimpat, 400mg/day of each. I still average 1-3 breakthrough simple and/or complex partials a month. I have tried almost every AED out there.
 

gymrat827

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those are some, hi, hi and hi doses.

I never went past 400mg of vimpat and half your dose of keppra. Ive been on 3 seizure drugs for at least 4yrs.

Tegtrol, Vimpat, then either keppra, topamax or zonismade. + Klonapin & a VNS
 

Sabbo

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My neurologist said 400mg/day is the maximum dosage for Vimpat. I take that much of both Vimpat and Topamax daily along with 1mg folic acid.
 
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