Keppra

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

jen40

New
Messages
2
Reaction score
0
Points
0
Hi everyone I have been on Keppra for the last 10 years and started on it when I started to suffer different seizures then before. I have been ill for the last 11 years and recently got a diagnosis of an antibiotic resistant infection pseudomonas aeruginosa and got the antibiotics I needed. I had an appointment with my neurologist last week who admitted that the infection was the cause of the massive increase in seizures I had and sclerosis of the hippocampus. I had previously had epilepsy surgery in 1996 and all my symptoms were put as psychological until I had an ear swab taken that showed the drug resistant infection. Whilst there I asked about some symptoms I was still having when I wake up in the morning and if I dont get up and go to the toilet my body jerks if I try to go back to sleep. This has been going on since I started on the keppra but because I had other health problems this was ignored. The neurologist suggested I come off the keppra. Has anyone here had this problem from keppra. I have also noticed small amounts blood in my urine and my test from gp came back normal. I am just reducing keppra from 100mg bid and will see my neurologist in 6 months. I went onto keppra as I had been on other epilepsy drugs always highest dose to give my liver a bit of a rest. I also take pregabalin for nerve pain, tegretol and frisium.
 
There is a piece here which might be of intrest to you its called " Blood in urine" the piece is in the kitchen. Blood in urine can usually indicate an infection related to the kidney or the bladder.
 
Blood in urine can usually indicate an infection related to the kidney or the bladder.

And anyone with kidney problems need to be extra careful as Keppra can increase the risk. And IMO, those jerks you have when trying to get back to sleep sound like myoclonic seizures, so make sure your neurologist knows about them as well.

I take 3000 mgs of Keppra and also had surgery for seizures and have a sclerotic hippocampus. The main side effect of Keppra for me is the depression, but that is taken care of.
 
Blood in the urine should always be checked by a urologist for starters. They can do an examination of the bladder to rule out cysts etc. in the urinary tract and bladder that may be causing the bleeding. From there, other referrals or tests may follow. A simple urine test (which I assume is what your gp did) cannot identify all causes of blood in the urine. If your gp also did an ultrasound this would also have been helpful but I'm not sure it would be as accurate as an actual look inside. In the end everything may very well turn out normal and probably will be, but nice to know for sure :)
 
Last edited:
Thanks for your replys. I got the dose of the amount of keppra I am taking wrong, I am currently taking 1000mg twice a day.

The professor who I am under said to me that I need to come off the keppra because of these jerks I am getting in the mornings. I know they are not seizures as after treatment for the infection the nocturnal jerks I was having stopped and this happens when I got a full bladder in the mornings. The neurology professor did give me a name for it but I will have to wait until my letter comes back from the hospital to see what it says.

Clint I had surgery in 1996 and had sclerosis on left temporal lobe but what I have now is sclerosis of the remainder of the hippocampus that I didnt have before I could actually feel swelling and shrinking when I became ill so have had a double whammy. I was originally on 3000mgs keppra but reduced it down to 2000mgs about 6 years ago.

The main reason I wanted to see if anyone else had these problems was because before I became ill I had been in hospital with appendicitus a few years before and had complications where I picked up a hospital accquired infection that they didnt know what at the time. I ended up having a urine catheter and nasal gastric tube and was only after this that I started to suffer with urine infections. I am wondering if I could of got pseudomonas when I was in hospital then and as it antibiotic resistant that never got rid of it completely and this is cause of infecton that has spread to the spinal cord brain. I have been to see an ENT specialist who said it not malignant otitis externa you would of had menengitis and all sorts but neurology hospital has disagreed with the ENT hospital. I puzzled neurologists for last 9 years who couldnt explain what was wrong with me. I am currently struggling to get the right treatment neurologist doesnt seem to want to put it in writing to my gp that this has caused epilepsy again event though he told me at my latest appointment that this is what has casused the sclerosis.

I am going to reduce the keppra this week and see how I get on once my hospital letter comes back.
 
Eliminate seizures with Coconut oil

My 9 year old son had two 3 hour long grand mal seizures and the doctors could not control it even after pumping lot of medicines in my son's body. My son has not had any kind of seizure in last 6 months. He does not take any medicines and I am 100% positive that he will never again have seizures in his life. This is what worked for him:

(1) Get cold pressed organic coconut oil. I pay $16 for 56oz jar of coconut oil. Mix coconut oil in everything that you eat, Try to consume 8 tablespoons of coconut oil every day - 4 in morning and 4 in night.

Coconut oil works by producing ketones in your body and maintains ketosis. Ketosis controls seizures even where medicines fail to work. (This is the only oil in world which has this ability. Just remember to get cold pressed organic coconut oil). There is no cholesterol in this oil. Increase the consumption slowly to make the body used to it. Sudden more amount of coconut oil can cause stomach ache and diarrhoea.

www DOT hindawi.com/journals/crinm/2013/809151 - Vanderbilt University Neurology department research where they used MCT (coconut oil) to reduce seizures in a 40 year old man by 97%

onlinelibrary DOT wiley.com/doi/10.1111/j.1528-1167.2008.01870.x/epdf - Randomized double blind study of MCT oil in hospitals in London (United Kingdom) (group size - 145 children)



(2) Get raw turmeric from grocery store. I pay $4 for one pound of turmeric. Peel outer layer of turmeric and eat it. Keep daily consumption between 10-15 grand mal.

Turmeric has 150 different ingredients which repair and build new neurons and neural circuits.



(3) Eat avocados. It provides almost 15 different kind of amino acids.

American diet is highly deficient in Omega-3 fatty acids while brain is 70% fatty tissues. Avocados have high levels of Omega 3 fatty acids and numerous vitamins and minerals and about different amino-acids.



(4) Eat garlic, onions, chicory root etc. These are excellent source of prebiotics and provide nutrition for good bacteria in your gut.


(5) Substitute cow milk with goat milk. Goat milk contains Medium chain fatty acids which is very nourishing for brain.


(6) Take magnesium supplement.

American diet is highly deficient in Magnesium but Magnesium is required in more than 400 chemical processes happening in body. Just imagine what will happen to food in refrigerator if I turn off electricity for 24 hours


(7) Take supplements for GABA and L-Carnitine


( Always get at least 9-10 hrs of good sleep.




Things to avoid

(1) Stop eating food in fast food and other restaurants. Most of the fast food have MSG which is responsible for causing slow death of brain neurons.


(2) Remove consumption of bad carbohydrates such as bread.
 
Last edited by a moderator:
Coconut oil is pure saturated fat. Having Type 2 Diabetes, I cannot have coconut oil or coconuts of any kind. I am glad that it works for you.

I am on two medicines that cause kidney problems. They are two of my main medicines. Neurontin (gabapentin) and Keppra.

I started off with pain in my abdomen and right and left side. I thought it was time to see my gynecologist. She ordered a test for me that covered my whole abdomen and pelvic and all of my organs. She told me that I had to drink 4 cups of water and hold it during the CTscan w Contrast.

I told my GP about the test and he thought it was a good idea. So, he had the test done. It shows up any problems in any organs, colon, pelvic etc. It showed up that I had a scarred kidney.

I saw my neurologist and she told me that 2 medicines that I was on, cause kidney problems. She is starting by taking me from 6 Gabapentin to 4 a day.

That has taken the pain away. When I do to much, the pain comes back. Then I have to rest.
 
Jay1

Do not be surprised, Aloha has already mentioned this topic, Coconut oil, but you must remember what works for you does not mean it will work for me, so saying it "Eliminate seizures with Coconut oil" is wrong because if it did I would have tried it already.
 
Jen, I just want to inquire about whether you are in the United States? And to tell you to take care of yourself!
 
Back
Top Bottom