Can't seem to figure anything out. Anyone have the same issues?

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Dhesse88

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I've been having seizures since I was a year old, I had ecoli and I had febrile seizures some up to 20 minutes. I was on dialysis for 38 days and my kidneys rebounded which was an act of God. When I was 11 we found out I had high blood pressure, have been on blood pressure meds since. At age 26 I had my first grand mal seizure, which was during the night in my sleep. I had always drank heavy since high school, I'm from a small German community and it's pretty much a part of life to drink beer after work everyday. So after the first seizure we went to a neurologist and they put me on keppra which I hated by the way. It made me angry 24/7. I am also on Zoloft 100mg a day and have been for 8 years. I'm 28 now. So when I got my first prescription for seizures, me being stubborn I kept drinking like a fish. The next three seizures I had were during the night. I've had eegs' MRIs blood work sleep studies you name it. So eventually I switched over to lamictal 100mg q/12, still kept drinking still had seizures. I stopped drinking for 10 months, and I had two seizures in between, both were during the day. Dosage was upped to 200mg. I got married in October and of course me being an idiot I got drunk as shit. All of the times since the wedding I was taking my meds on time not skipping any. The following morning I had two more seizures one in the morning and one at night. Dosage was upped to 400mg. After that I quit drinking for good, it's been 4 months but anyhow...I have had 3 since my wedding in October. One in November during the day, I had thrown up my meds that morning and didn't take another pill. Well in December I had another one, during the day no explanation, dosage was switched to 400mg lamictal extended release. I had a seizure a few days ago Jan 11, 2017. I talked to my neuro and she upped my dosage to 600mg. I'm getting to the point not understanding why they cant figure this out. Now about the actual seizures I've noticed with the last few I feel weird days prior to me having a seizure. Just kinda lost, confused, taking longer to process things. But the day before I felt even weirder and had moments where my left arm tingled and went numb, I got a head rush, or like a whole body rush. Also that day later on I was sitting there and my hand started tingling again and I smelled a strange smell, it happened twice within a few minutes. Well I went home very tired and relaxed and went to bed, I got up the next morning and I felt like hell, just figured it was allergies, so I took a shower getting ready for work and I smelled the same strange smell again. I got out of the shower and I woke up on the floor.
 
! ! ! ! WELCOME TO CWE Dhesse88 ! ! ! !

Each time that you put a different medication into your body or a different dosage of a medication you were already taking your body reacts to it as something new that it has to get used to having in it. Each of these adjustment times is going to take time to take place. The time may be different for each person or it may be different for different medications. You also have to think of how each medication can take a different amount of time in each and every person.
E is something that has an almost unlimited number of differences that have to be taken into account for each patient. Many times a patient w/E may feel like a lab rat because of the many different medications that a doctor may try and the many dosages that doctor may prescribe of each of those medications.
This is something that you have to learn about and be willing to accept as a part of what can take place when a person has E.
If you have any questions about things like this, feel free to ask them of the members of CWE. We have many years of experience when it comes to dealing w/E. We are also very willing to help anyone who has questions that they need answers to!
YOU are now a part of CWE and you can ask any of the questions you need to.
CWE also provides a place(Padded Room) for you to vent if you feel the need to. The 'Kitchen' is the place to discuss something with the many people who use CWE. :ponder:

acshuman
 
Hi Dhesse88,

Welcome to CWE.

Just because a medication is called an anti-seizure medication does not mean it will stop your seizures. With anti-seizure meds 1/3 will get control, 1/3 will get a reduction and 1/3 will get no benefit.

I have tried 5 meds and none have helped, most made my seizures worse or had bad side effects.
 
Hi Dhesse88, welcome to CWE!

It can be frustrating not knowing what causes your seizures. But there's usually a primary cause of your lower seizure threshold (in the majority of the cases it's unknown), and then secondary causes (triggers that can play a role in provoking a particular seizure).

It's great that you've identified drinking as one possible secondary trigger. Alcohol consumption -- as well as the poor sleep quality, dehydration, and electrolyte imbalance that often result from heavy drinking -- is a common trigger. It may also interfere with the metabolism of your anti-seizure meds. So a good reason to stay dry.

Unfortunately, epilepsy has a nasty way of of escalating and changing. Triggers can change over time, plus you can just become more vulnerable to seizures. The more seizures you have, the more seizures you are likely to have in the future as the misbehaving neural "pathway" gets worn in. Once the seizure horses escape from the barn, it can be tricky to get them back inside.

For most of us, there's no "cure", just a matter of controlling the seizures to one degree or another, and learning how to cope with the consequences. As folks have noted above, it can be a process of trial and error to find the best treatment, and what works for one person may not work for another. I hope you and your neuro find a med and a dose that gets your seizures back in check.

You might want to take a look at this thread: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
It discusses the different kinds of stressors that can be seizure triggers, and ways to identify them. Paying closer attention to your overall health and lifestyle and finding ways to make beneficial changes can sometimes result in better seizure control.

Good luck!
 
Thank you everyone, I've got an appointment tomorrow and my neurologist said we have a lot to talk about. I really want to get this figured out, I just got married and have a baby due in August. It's really hard now that I can't drive and I feel like a burden on friends and family asking to hangout with me and picking me up and dropping me off. I also work for my family hvac business and I'm often on tall roofs and in attics, now that I've had all these seizures, it's becoming real! I'm actually nervous about going to work. I don't want to be on disability whatsoever. I'm 5'11 235lbs, I'm pretty muscular, and before when I was drinking daily I weighed 278. Also I was wondering if anyone has had anyone tell them that the medications could be metabolized too quickly.
 
Welcome Dhesse88,

Hormones can also effect seizures in some people and being pregnant effects hormones, as I'm sure you know. Stress is a big seizure trigger, so you want to find healthy ways of dealing with stress (e.g., meditation, yoga, exercise, etc.) and try to avoid unnecessary stress. Lack of sleep is also a big seizure trigger and with a newborn coming, be prepared. Hopefully, you have family help. I have a 25 year old daughter, but I remember having many seizures when she was a newborn b/c I was up all hours of the night feeding her.

As others have mentioned finding the best med or combination of meds can take time. It's trial and error. Personally, I find it's important to have food in my stomach when I take my meds else I can get really sick. Meds never made me seizure-free, but they reduced my seizures. Surgery in 2015 has stopped them so far. I only have auras, now.
 
Dhesse88,

It's great that you stopped drinking. Congrats! I was a big partier in my teen years and early 20s. I was diagnosed with epilepsy at age 21 and had to change my lifestyle. I actually had seizures all my life, but wasn't correctly diagnosed until I had the big one. I know it's not easy. It took me time to completely accept and change. Let's just say I'm lucky to be alive. I got pregnant just before turning 23 and that did it for me. I became a completely different person when I realized I was pregnant. I never partied again. I'm a heavy metal rocker and my music is a great stress release for me. If anyone ever pressures you to drink then they are not a true friend. You have to educate people about epilepsy.
 
Metabolism

Dhesse88,
Metabolism is the function that takes place in each and every person's body at a different rate for each person. The half-life of the AED that a person takes is determined by metabolism. If you have a high metabolism rate in your body the half-life of your AED(s) will be shorter than it would be for a person who has a low rate of metabolism. This happens even if the people are taking the same AED.
This is the reason that a doctor needs to know a patient's metabolism rate. This is so they can prescribe the correct dosages of an AED to keep the necessary level of the AED in the patient's blood to best treat the patient's E.
A person's metabolism rate can make a difference in many different ways when it comes to getting nutrition and vitamins into a person's body at the time they are needed! :agree:
If you can you need to ask your neurologist about how your metabolism affects many things that happen for you. The AEDs are the most important for a person w/E.

acshuman
 
Metabolism is the function that takes place in each and every person's body at a different rate for each person.

...and metabolism is governed by enzymes.

https://www.boundless.com/biology/t...tabolism-through-enzyme-regulation-351-11577/

http://www.nature.com/scitable/topicpage/cell-metabolism-14026182

All biochemical reactions are catalyzed by proteins called enzymes
http://www.biologyreference.com/Ma-Mo/Metabolism-Cellular.html

Cofactor (biochemistry)

https://en.wikipedia.org/wiki/Cofactor_(biochemistry)
 
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Welcome to CWE. People often never find out what is causing their seizures. I used to complain of 'weird feelings' in the back of my head since childhood. Nobody could understand what I needed--at one time, the doctors actually thought that I had a heart problem!! It wasn't until after I had some Tonic Clonics that the 'feelings' were diagnosed as Simple Partial seizures. Now I get Complex Partials, too.
Although I'm on both Vimpat & Topamax--400mg/day of each, I get breakthrough seizures--sometimes within hours of taking my meds!
 
. Also I was wondering if anyone has had anyone tell them that the medications could be metabolized too quickly.

Our liver, thyroid, pancreas, gallbladder, are all part of the metabolic system. When one of these is not working correctly, it offsets the metabolic system.

Some of the AEDs can offset the thyroid for some folks. Look it up in the side effects for that med. I do have hypothyroid. I also have Type 1 Diabetes and that definitely effects my pancreas. So my metabolic system is really screwed up. My endocrinologist works with my epileptologist because sometimes the seizure meds make my insulin screwey.

http://www.responsiblefoods.org/how_does_the_metabolic_system_work

Major players in the human metabolic system include:

The gastrointestinal tract is a long, hollow tube with specialized sections that each serve different functions. It begins at the mouth and ends at the anus. The mouth manually breaks down food, the stomach begins to digest and chemically break down food, the small intestine finishes digesting and begins absorbing food, and the large intestine absorbs the final nutrients, water, and sends the waste to the anus for excretion.

The pancreas provides the enzymes needed for the GI tract to digest different macronutrients. The pancreas also produces several essential hormones, two of which are glucagon and insulin. Glucagon is released when our blood sugars are low (when we are fasting). It tells our bodies that we need energy, and begins breaking down fat, muscle, and glycogen (the short-term storage form of glucose) to use for energy. Insulin is the opposite; it is produced when we are in a fed state. It tells our bodies that we are full, and to store the excess glucose (as glycogen or fat).

The liver is a multifunctional organ. It stores and breaks down glucose (in glycogen or triglyceride form), produces bile (the fluid needed to absorb cholesterol), produces and breaks down proteins, manages the cholesterol, triglycerides and lipoproteins (transporters of fat) found in our blood, detoxifies, and stores several vitamins, among many other functions.

The gallbladder stores and excretes the bile that was produced in the liver. Bile is essential to digest and absorb fats.

The thyroid produces T3 and T4, the hormones that affect the rate of our metabolism.

The cardiovascular system delivers blood (with nutrients) to all of the cells in our body. The heart pumps the blood, the veins and arteries are the highways that deliver the blood throughout the body, and the capillaries disperse the blood to each individual cell.

The hypothalamus receives the hormonal signals that alarm us when we are hungry or full. Leptin tells us that we are full and speeds up our metabolic rate. Ghrelin tells us that we are hungry and prompts us to eat; it also slows down our metabolic rate.

When any of these major players are not working harmoniously, our metabolic health is affected. Non-alcoholic fatty liver disease, high LDL levels, plaque formation in the arteries, and insulin blockage of the leptin pathway are all examples of metabolic disharmony.
 
So the doctors visit went okay, she put me on Ativan in case I get the funny feelings. And upped my lamictal dosage to 600mg a day. I forgot to mention earlier I smoke marijuana daily, and cigarettes as well. Cigarettes are maybe 3 a day. Why? I don't know either. Marijuana I feel actually helps keep my mind from going 3 million miles an hour. Any thoughts or inputs.
 
As I'm sure you are well aware, smoking of any kind (cigarettes and marijuana both) can cause significant respiratory problems. Nicotine is a stimulant, so there is a chance it may now be at least a partial trigger for your seizures. You say marijuana helps to slow your mind down, so perhaps part of what it is doing is reversing the effects of the nicotine stimulation.
My suggestion would be to stop/wean-off the cigarette smoking and try to get rid of the nicotine.
As for the marijuana, THC is typically a seizure trigger while CBD is the component that can reduce seizures for some people. Either way, I would encourage you to stop smoking marijuana and look into safer means of consuming the drug if you feel you want to continue to use it. I would also encourage you to look into the THC vs. CBD effects of cannabis on seizures before deciding if/how you want to continue to take this drug.
 
As for the marijuana, THC is typically a seizure trigger while CBD is the component that can reduce seizures for some people. Either way, I would encourage you to stop smoking marijuana and look into safer means of consuming the drug if you feel you want to continue to use it. I would also encourage you to look into the THC vs. CBD effects of cannabis on seizures before deciding if/how you want to continue to take this drug.


Marijuana is currently being studied for it's medicinal use in epilepsy. That is, the CBD effects. Like masterjen said, smoking isn't good or safe.
Here is info on the subject, presented by a doctor/epileptoligist at NYU:

https://youtu.be/WNw8jI-Cn28

And check this website:

http://www.epilepsy.com/learn/treat...ent-approaches/medical-marijuana-and-epilepsy
 
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Marijuana is currently being studied for it's medicinal use in epilepsy. That is, the CBD effects. Like masterjen said, smoking isn't good or safe.
Here is info on the subject, presented by a doctor/epileptoligist at NYU:

https://youtu.be/WNw8jI-Cn28

And check this website:

http://www.epilepsy.com/learn/treat...ent-approaches/medical-marijuana-and-epilepsy

Is cannabis avaible from all doc in uk.i got gulcoma inboth eyes back arm pain and e.as I understand cannabis good for all of it.i can throw all Meds I take and get normal life.i getting conflicting info from docs and feel like someone tying to score.It was fy on wall in gp surgery and each doc said proof it helped.If I could get medicinal cannabis be wonderfull and so stupid if not cruel to deprive it if works I don't want smoke it or in anyway get high as I gather addictive bit emoved I would eat catscrap if thought it worked..department of health should all get migraine once a week then maybe inteiigence may preveil.i thought can get med via Canada but that also conflicting is it just U.s can get it or rest f world
 
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