Lamotrigine causing disabling side effects?

CDC funded page

Not a CDC funded Page

Hi Everyone, I'm posting on behalf of my mum and If anyone has any thoughts, ideas, suggestions or advice we would be so grateful. My mum had her first seizure around 5 years ago, but due to a reaction to the medication, the doctor and neurologist decided she was relatively low risk and didn't have to continue to take anything. She remained seizure free up until a year ago. First she started to get migraines that were accompanied by stoke like symptoms (which went back to normal in a couple of days) but this was soon replaced by seizures. After the seizure she would have right sided weakness accompanied by speech and memory problems. Again, this would return to normal within a couple of days. After the last seizure she had, her doctor put her on a low dose of Lamotrigine 50mg. A couple of months later, she displayed the usual pre seizure symptoms but where as within a couple of days, she would bounce back, her mobility on the right side and her memory/speech was still slightly effected. Over the last year, she has had no more seizures but is now unable to walk, unable to use her right had and her memory and speech is severely effected. She knows what she wants to say but the words don't seem to come out. This is all beyond frustrating for her and as her daughter, it's breaking my heart to see her like this. She has had MRI scans on both her brain and spine which has shown nothing. After some research, I noticed that her symptoms *could* *possibily* be a side effect of the Lamotrigine? The doctor and neurologist have no idea what could be causing her issues so have advised her to reduced the dose to 25mg and gradually taper off completely. She has now been taking 25mg for 3 weeks and her speech and memory is the worst it's been. My question is, could it be possible that the reduced dose is causing this in a 'gets worse before it gets better' type way? I might be clutching at straws but everything only seemed worse when she started the Lamotrigine and if so, the side effects of it has basically disabled her, not the seizures! ANY thoughts or encouragement welcomed! Thank you :) Lisa

Comments

Hi, Thank you for posting, it

Submitted by Anonymous on Thu, 2019-12-12 - 09:57

Hi, Thank you for posting, it sounds like you all have been going through a lot. Treatment and how the body may react to certain medications varies for each individual.The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. We cannot determine what is causing her speech, memory or mobility issues, which may be related be related to several things from seizures, her epilepsy, or a separate issue. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition,visit: https://www.epilepsy.com/learn/challenges-epilepsy and learn to more about the medications she’s taking, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsIt’s important that you all are continuing to follow-up with her healthcare team to address these challenges and if she continues to experience changes in symptoms, behaviors, moods, sides effects and seizure frequency/types, to determine what individual treatment plan is best for her. If you have not already, you may want to consider having your mom see an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistAdditionally, you all may want to consider keeping a journal or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team. It is common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may be helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Or contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

Hi, Thank you for posting, it sounds like you all have been going through a lot. Treatment and how the body may react to certain medications varies for each individual.The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. We cannot determine what is causing her speech, memory or mobility issues, which may be related be related to several things from seizures, her epilepsy, or a separate issue. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition,visit:  https://www.epilepsy.com/learn/challenges-epilepsy and learn to more about the medications she’s taking, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsIt’s important that you all are continuing to follow-up with her healthcare team to address these challenges and if she continues to experience changes in symptoms, behaviors, moods, sides effects and seizure frequency/types, to determine what individual treatment plan is best for her. If you have not already, you may want to consider having your mom see an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistAdditionally, you all may want to consider keeping a journal or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team. It is common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf  It may be helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Or contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

Hi, Thank you for posting, it sounds like you all have been going through a lot. Treatment and how the body may react to certain medications varies for each individual.The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. We cannot determine what is causing her speech, memory or mobility issues, which may be related be related to several things from seizures, her epilepsy, or a separate issue. Cognitive problems - problems with thinking, remembering, paying attention or concentrating, finding the right words, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition,visit: https://www.epilepsy.com/learn/challenges-epilepsy and learn to more about the medications she’s taking, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsIt’s important that you all are continuing to follow-up with her healthcare team to address these challenges and if she continues to experience changes in symptoms, behaviors, moods, sides effects and seizure frequency/types, to determine what individual treatment plan is best for her. If you have not already, you may want to consider having your mom see an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistAdditionally, you all may want to consider keeping a journal or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team. It is common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may be helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other. Contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Or contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline

What is oxygen concentrators

Submitted by Iceacea on Sun, 2019-12-15 - 20:57

What is oxygen concentrators?An oxygen concentrator is a kind of equipment which can provide oxygen treatment to patients at a concentration far higher than the ambient air concentration, and can keep the oxygen level in patients' blood stable. This is a medical device that compresses the air around the patient and delivers it to him/her in a purer form. Oxygen supply is continuous. Unlike the oxygen tank, as long as a battery power supply or compressor is plugged into a power socket, it will never run out. We have a variety of top oxygen concentrators from experienced manufacturers. These devices, also known as concentrators or concentrators, provide a continuous flow of oxygen-enriched air and provide cost-effective, most preferred methods of treatment at home or in transit. <a href="https://www.weathersavvy.com/collections/oxygen-concentrator/">portable oxygen concentrator</a>

Lisa I hope that your mother

Submitted by JoseGerardo on Wed, 2020-01-08 - 21:40

Lisa I hope that your mother is doing better; I’m sorry to hear about everything that you all have been through. I had my first seizure seven years ago and about 3-4 years later I started experiencing the same speech problem that you described your mom having. Note: I was not taking any medication other than CBD. The problem was acute and would go away within a day but I have noticed over the years that my speech is becoming a bit slurred. It’s not really noticeable to others but I attribute it to having so many seizures since, like I said, I was not taking medication until recently. Keep your head up and let me know if you learn any new insight as to what has caused this to your mom. Thanks, Jose