This morning because of an epileptic seizure I have been prevented from attending my local Salvation army here in Lockerbie.
I didn’t want to miss out on Sunday worship however so I tuned into Bellshill Salvation Army live stream on YouTube.
Category: Epilepsy
Care Call systems
Has anyone got care call similar to this
I have one mainly used for my Epilepsy, except rather than have the pendant I have the bracelet.
If you haven’t got one the principal on the way they work is if the disabled person is in the house on their own there are up to two people they can call and they are called Main & Second caller. My Main Caller is my wife and the second caller is my daughter.
Now I have had this system for quite some time now and what i’m about to tell you has never happend before.
On Tuesday night going into Wednesday morning I couldn’t sleep and it was about 2am when i was lying flat on my stomach with wrist that hand bracelet on.
All of a sudden I heard this voice and living in an area where there are lots of houses I thought it was the sound of police radios, next thing i hear is my wives mobie ringing.
Yep you guessed it! it was care call to say I had pressed buton on bracelet
Zonisamide – Zonegran
What is zonisamide?
Zonisamide is used together with other medicines to treat partial seizures in adults and teenagers at least 16 years old.
Zonisamide may also be used for purposes not listed in this medication guide.
Warnings
Taking zonisamide can cause permanent vision loss. Tell your doctor right away if you have any eye pain or redness or any changes in your vision.
Some people have thoughts about suicide while taking zonisamide. Stay alert to changes in your mood or symptoms. Report any new or worsening symptoms to your doctor.
Before taking this medicine
You should not use zonisamide if you are allergic to it.
You may not be able to take zonisamide if you have ever had a severe allergic to a sulfa drug.
Tell your doctor if you have ever had:
- liver disease;
- kidney disease;
- high levels of ammonia;
- stomach flu or illness causing diarrhea;
- a growth disorder;
- a bone disorder that causes soft or weak bones or low bone mineral density;
- depression, or suicidal thoughts or actions;
- if you have ever had metabolic acidosis (too much acid in your blood); or
- if you have been on a ketogenic diet (high-fat, high-protein, low-carb).
Some people have thoughts about suicide while taking zonisamide. Your doctor will need to check your progress at regular visits. Your family or other caregivers should also be alert to changes in your mood or symptoms.
Zonisamide may harm an unborn baby. Use effective birth control to prevent pregnancy, and tell your doctor if you become pregnant.
If you are pregnant, your name may be listed on a pregnancy registry to track the effects of zonisamide on the baby.
You should not breastfeed while using zonisamide.
Zonisamide is not approved for use by anyone younger than 16 years old.
How should I take zonisamide?
Follow all directions on your prescription label and read all medication guides or instruction sheets. Your doctor may occasionally change your dose. Use the medicine exactly as directed.
Zonisamide can be taken with or without food.
Swallow the capsule whole and do not crush, chew, break, or open it.
While using zonisamide, you may need frequent blood tests.
Do not stop using zonisamide suddenly, even if you feel fine. Stopping suddenly may cause increased seizures. Follow your doctor’s instructions about tapering your dose.
Do not share zonisamide with another person, even if they have the same symptoms you have.
Store at room temperature away from moisture, heat, and light.
What happens if I miss a dose?
Take the medicine as soon as you can, but skip the missed dose if it is almost time for your next dose. Do not take two doses at one time.
What happens if I overdose?
Seek emergency medical attention or call the Poison Help line at 1-800-222-1222.
Overdose symptoms may include slow heart rate, feeling light-headed, fainting, and slow or shallow breathing.
What should I avoid while taking zonisamide?
Avoid driving or hazardous activity until you know how zonisamide will affect you. Your reactions could be impaired.
Drinking alcohol with this medicine can cause side effects.
Zonisamide side effects
Get emergency medical help if you have signs of an allergic reaction: any form of skin rash, hives; fever, swollen glands, feeling weak or tired, severe muscle pain, unusual bruising or bleeding; yellowing of your skin or eyes; difficult breathing; swelling of your face, lips, tongue, or throat.
Report any new or worsening symptoms to your doctor, such as: sudden mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), depressed, or have thoughts about suicide or hurting yourself.
Zonisamide may cause serious side effects. Call your doctor at once if you have:
- eye pain or redness or any changes in your vision;
- decreased sweating, feeling very hot;
- signs of metabolic acidosis–confusion, vomiting, lack of energy, irregular heartbeats;
- symptoms of a blood cell disorder–fever, chills, body aches, flu symptoms, sores in your mouth and throat;
- symptoms of a kidney stone–severe pain in your stomach or lower back, blood in your urine;
- increased or worsening seizures;
- the first sign of any skin rash, no matter how mild; or
- severe skin reaction–fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
Common side effects of zonisamide may include:
- drowsiness, dizziness;
- problems with memory or concentration;
- feeling agitated or irritable;
- loss of coordination, trouble walking; or
- loss of appetite.
Zonisamide dosing information
Usual Adult Dose for Seizures:
16 years of age and older:
-Initial dose: 100 mg orally once a day
-Titration: After 2 weeks at 100 mg/day, the dose may be increased to 200 mg/day as either a single or divided dose (100 mg orally 2 times a day) for at least 2 weeks; it can then be increased to 300 mg/day, then 400 mg/day either as a single daily dose or divided into 2 daily doses, with the dose stable for at least 2 weeks to achieve steady state at each level
-Maintenance dose: 400 mg/day
-Maximum dose: 600 mg/day
Comments:
-This drug may be taken with or without food.
-Capsules should be swallowed whole.
-Because of the long half-life of this drug, up to 2 weeks may be required to achieve steady state levels upon reaching a stable dose or following dosage adjustment.
-The prescriber may wish to prolong the duration of treatment at the lower doses in order to fully assess the effects of this drug at steady state (noting that many of the side effects are more frequent at doses of 300 mg per day and above). Although there is some evidence of greater response at doses above 100 to 200 mg/day, the increase appears small and formal dose response studies have not been conducted.
Use: As adjunctive therapy in the treatment of partial seizures
Usual Pediatric Dose for Seizures:
Less than 16 years of age: Not recommended
16 years of age and older: See adult dosing
Detailed Zonisamide dosage information
What other drugs will affect zonisamide?
Taking zonisamide with other drugs that make you sleepy can worsen this effect. Ask your doctor before taking zonisamide with a sleeping pill, narcotic pain medicine, muscle relaxer, or medicine for anxiety or depression.
Other drugs may interact with zonisamide, including prescription and over-the-counter medicines, vitamins, and herbal products. Tell each of your health care providers about all medicines you use now and any medicine you start or stop using.
My Epilepsy Drugs
Sodium Valproate Chrono 300MG
Epilim Chrono is basically Sodium valproate. This medicine comes in 500 mg, 300 mg and 200 mg. Its is widely used mood stabilizer. Epilim Chrono contains Sodium valproate which stabilizes electrical activity in human brain. Epilim Chrono is used to treat:
- Epilepsy
- Panic attack
- Anxiety disorder
- Posttraumatic Stress Disorder
Epilim Chrono should not be used by women during pregnancy as it can cause birth defects.
Epilim Chrono Weight Gain Tablets
Epilim Chrono tablet’s major side effect is weight gain. That why some people try to use it as a weight gain tablet. betterhealthfacts.com strongly suggest you to use these tablets only after consulting a doctor.
Epilim Chrono Side Effects
Epilim Chrono is known for its side effects from past few years. Some of its common side effects are
Tiredness
Sedation
Gastrointestinal Disturbances
Tremor
Reversible Hair Loss
Living with epilepsy and a learning disability
Safety and risks
Safety
There are many different things to help a person with epilepsy and a learning disability stay safe. These include ways to avoid injury inside and outside the home, seizure alarms and helmets.
SUDEP
People with epilepsy and a learning disability are more likely to die early than other people. So it’s especially important, for you as a carer, to know about sudden unexpected death in epilepsy (SUDEP).
Here is the NICE guideline that underlines that: 1.16.3.7 Healthcare professionals should be aware of the higher risks of mortality for children, young people and adults with learning disabilities and epilepsy and discuss these with them, their families and/or carers.
The most important thing to know about SUDEP is how to reduce risks. One of the biggest causes of SUDEP is night time convulsive seizures. If the person you care for has these types of seizure make sure the doctor knows. Reducing the number of night time seizures is one of the ways to reduce the risk of SUDEP. If the person you look after is still having night time seizures you might also consider getting some sort of bed alarm or listening device so you know when the seizures are happening.
Education
Schools now have a legal responsibility to support children with medical conditions. This includes making sure that:
- Everyone is able to participate fully in the life of the school
- The staff understand epilepsy and are able to support students with the condition
- All students who need one, have an individual healthcare plan (IHP)
Epilepsy Action has information on the responsibilities of schools, an IHP template and information on support for children with special needs
Mencap, an organisation that supports people with learning disabilities, has a range of information on education.
The equality laws
The person you are caring for is protected under the equality laws. You are also protected because you’re caring for someone covered by the equality laws.
If the person you are looking after is being refused access to a place or a service, you will need to check if the organisation has done an individual risk assessment. If they haven’t, they need to do one. And then if they do identify any actual risks, they will need to consider what reasonable adjustment they may be able to put in place to make it possible for the person to access the service. They can only refuse access if they cannot identify any possible reasonable adjustments.
Epilepsy Action has more information on the equality laws.
Social care
As a full time carer it’s not always easy to find the time or the energy to look for the information and resources you may need. Your Community Learning Disability Team could be a good first local point of support for you. Your local council should be able to tell you how to get in touch with them.
Below is a list of topics on the NHS website. It’s a good source of information on social care. We are sorry there isn’t enough space to print it all out here. But if you don’t have access to the internet your local library may be able to help.
Website: nhs.uk/conditions/social-care-and-support-guide
This information includes:
- Getting the right social care for adults
- Getting the right social care for children
- Help with challenging behaviour
- How to get adaptations and daily living aids in your home
- Finding respite care
- Finding the right accommodation
- Finding residential care
Financial support
The NHS website is a good source of information on financial support for a carer of a person with a learning disability.
Website: nhs.uk/conditions/social-care-and-support-guide
This information includes:
- Carers allowance
- PIP
- Direct payments
- Personal health budgets
- Continuing care
Vagus nerve stimulation (VNS)
Overview
Vagus nerve stimulation involves the use of a device to stimulate the vagus nerve with electrical impulses. An implantable vagus nerve stimulator is currently FDA-approved to treat epilepsy and depression. There’s one vagus nerve on each side of your body, running from your brainstem through your neck to your chest and abdomen.
In conventional vagus nerve stimulation, a device is surgically implanted under the skin on your chest, and a wire is threaded under your skin connecting the device to the left vagus nerve. When activated, the device sends electrical signals along the left vagus nerve to your brainstem, which then sends signals to certain areas in your brain. The right vagus nerve isn’t used because it’s more likely to carry fibers that supply nerves to the heart.
Why it’s done
Vagus nerve stimulationOpen pop-up dialog box
About one-third of people with epilepsy don’t fully respond to anti-seizure drugs. Vagus nerve stimulation may be an option to reduce the frequency of seizures in people who haven’t achieved control with medications.
Vagus nerve stimulation may also be helpful for people who haven’t responded to intensive depression treatments, such as antidepressant medications, psychological counselling (psychotherapy) and electroconvulsive therapy (ECT).
The Food and Drug Administration (FDA) has approved vagus nerve stimulation for people who:
- Are 4 years old and older
- Have focal (partial) epilepsy
- Have seizures that aren’t well-controlled with medications
The FDA has also approved vagus nerve stimulation for the treatment of depression in adults who:
- Have chronic, hard-to-treat depression (treatment-resistant depression)
- Haven’t improved after trying four or more medications or electroconvulsive therapy (ECT), or both
- Continue standard depression treatments along with vagus nerve stimulation
Additionally, researchers are studying vagus nerve stimulation as a potential treatment for a variety of conditions, including headaches, rheumatoid arthritis, inflammatory bowel disease, bipolar disorder, obesity and Alzheimer’s disease.
Risks
For most people, vagus nerve stimulation is safe. But it does have some risks, both from the surgery to implant the device and from the brain stimulation.
Surgery risks
Surgical complications with implanted vagus nerve stimulation are rare and are similar to the dangers of having other types of surgery. They include:
- Pain where the cut (incision) is made to implant the device
- Infection
- Difficulty swallowing
- Vocal cord paralysis, which is usually temporary, but can be permanent
Side effects after surgery
Some of the side effects and health problems associated with implanted vagus nerve stimulation can include:
- Voice changes
- Hoarseness
- Throat pain
- Cough
- Headaches
- Shortness of breath
- Difficulty swallowing
- Tingling or prickling of the skin
- Insomnia
- Worsening of sleep apnea
For most people, side effects are tolerable. They may lessen over time, but some side effects may remain bothersome for as long as you use implanted vagus nerve stimulation.
Adjusting the electrical impulses can help minimize these effects. If side effects are intolerable, the device can be shut off temporarily or permanently.
How you prepare
It’s important to carefully consider the pros and cons of implanted vagus nerve stimulation before deciding to have the procedure. Make sure you know what all of your other treatment choices are and that you and your doctor both feel that implanted vagus nerve stimulation is the best option for you. Ask your doctor exactly what you should expect during surgery and after the pulse generator is in place.
Food and medications
You may need to stop taking certain medications ahead of time, and your doctor may ask you not to eat the night before the procedure.
What you can expect
Before the procedure
Before surgery, your doctor will do a physical examination. You may need blood tests or other tests to make sure you don’t have any health concerns that might be a problem. Your doctor may have you start taking antibiotics before surgery to prevent infection.
During the procedure
Surgery to implant the vagus nerve stimulation device can be done on an outpatient basis, though some surgeons recommend staying overnight.
The surgery usually takes an hour to an hour and a half. You may remain awake but have medication to numb the surgery area (local anesthesia), or you may be unconscious during the surgery (general anesthesia).
The surgery itself doesn’t involve your brain. Two incisions are made, one on your chest or in the armpit (axillary) region, and the other on the left side of the neck.
The pulse generator is implanted in the upper left side of your chest. The device is meant to be a permanent implant, but it can be removed if necessary.
The pulse generator is about the size of a stopwatch and runs on battery power. A lead wire is connected to the pulse generator. The lead wire is guided under your skin from your chest up to your neck, where it’s attached to the left vagus nerve through the second incision.
After the procedure
The pulse generator is turned on during a visit to your doctor’s office a few weeks after surgery. Then it can be programmed to deliver electrical impulses to the vagus nerve at various durations, frequencies and currents. Vagus nerve stimulation usually starts at a low level and is gradually increased, depending on your symptoms and side effects.
Stimulation is programmed to turn on and off in specific cycles — such as 30 seconds on, five minutes off. You may have some tingling sensations or slight pain in your neck and temporary hoarseness when the nerve stimulation is on.
The stimulator doesn’t detect seizure activity or depression symptoms. When it’s turned on, the stimulator turns on and off at the intervals selected by your doctor. You can use a hand-held magnet to initiate stimulation at a different time, for example, if you sense an impending seizure.
The magnet can also be used to temporarily turn off the vagus nerve stimulation, which may be necessary when you do certain activities such as public speaking, singing or exercising, or when you’re eating if you have swallowing problems.
You’ll need to visit your doctor periodically to make sure that the pulse generator is working correctly and that it hasn’t shifted out of position. Check with your doctor before having any medical tests, such as magnetic resonance imaging (MRI), which might interfere with your device.
Results
Implanted vagus nerve stimulation isn’t a cure for epilepsy. Most people with epilepsy won’t stop having seizures or taking epilepsy medication altogether after the procedure. But many will have fewer seizures, up to 20 to 50 percent fewer. Seizure intensity may lessen as well.
It can take months or even a year or longer of stimulation before you notice any significant reduction in seizures. Vagus nerve stimulation may also shorten the recovery time after a seizure. People who’ve had vagus nerve stimulation to treat epilepsy may also experience improvements in mood and quality of life.
Research is still mixed on the benefits of implanted vagus nerve stimulation for the treatment of depression. Some studies suggest the benefits of vagus nerve stimulation for depression accrue over time, and it may take at least several months of treatment before you notice any improvements in your depression symptoms. Implanted vagus nerve stimulation doesn’t work for everybody, and it isn’t intended to replace traditional treatments.
Additionally, some health insurance carriers may not pay for this procedure.
Studies of implanted vagus nerve stimulation as a treatment for conditions such as Alzheimer’s disease, headaches and rheumatoid arthritis have been too small to draw any definitive conclusions about how well it may work for those problems. More research is needed.
Living with hidden disabilities
In the UK alone, 1 in 5 people has a disability, with 80% of those having an invisible disability.
What is an invisible disability?
A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).
Invisible disabilities, also known as Hidden Disabilities or Non-visible Disabilities, are disabilities that are not immediately apparent. Typically, they are chronic illnesses and conditions that significantly impair normal activities of daily living.
Living with these conditions can make daily life more demanding for many people. They affect each person in different ways and can be painful, exhausting, and isolating. Without visible evidence of the hidden disability, it is frequently difficult for others to acknowledge the challenges faced and as a consequence, sympathy and understanding can often be in short supply.
Examples of Hidden Disabilities
While this list is by no means exhaustive, some examples of hidden disabilities include:
- Autism
- Brain injuries
- Crohn’s Disease
- Chronic pain
- Cystic Fibrosis
- Depression, ADHD, Bipolar Disorder, Schizophrenia, and other mental health conditions
- Diabetes
- Epilepsy
- Learning difficulties, including dyslexia, dyspraxia, dysgraphia, and language processing disorder
- Lupus
- Rheumatoid Arthritis
- Visual and auditory disabilities. These could be considered visible if the person with the disability didn’t wear support aids such as glasses or hearing aids
During the COVID-19 pandemic, invisible disabilities have become a talking point, which is why it is important to raise awareness of them.
Epilepsy
Epilepsy is a common condition where sudden bursts of electrical activity in the brain cause seizures or fits. There are lots of possible symptoms of epileptic seizures, including uncontrollable shaking or losing awareness of things around you. The main treatment for epilepsy is medicine to help prevent seizures. It’s often not clear what causes epilepsy. Sometimes it runs in families or is caused by damage to the brain from trauma such as a severe head injury.
Useful Resources
Seizures and me: Charlotte’s story
Epilepsy Action – Free online course What to do when someone has a seizure
How we can help
Assistive technology can promote a sense of independence for those living with epilepsy, whilst providing peace of mind and reassurance for loved ones and carers.
Epilepsy sensors are used to monitor people with epilepsy while they are asleep in bed. Patented sensor technology detects a person’s movement in bed and is able to differentiate normal movements from epileptic seizures enabling tonic clonic seizures to be detected the moment they occur. They help carers respond quickly when needed, and avoid disturbing a person’s sleep when they are not. The sensitivity of the sensor can be adjusted to best suit the person’s requirements.
This sensor is suitable for use with children as well as adults.
Outside the home
Our GPS falls detector recognises when a person falls and connects straight through to our alarm response centre – ensuring help is on its way when you need it most. The alarm can be set up to alert an emergency contact or we can request an ambulance right away – the plan can be tailored to your individual needs.
This is a great solution for teenagers or adults with epilepsy. In many cases a parent or carer for someone with epilepsy will undertake regular checks or need to be on hand 24/7. This means constant worry for the care giver and a loss of independence for the individual. Our Footprint device will automatically raise an alert if it detects a fall, (no need to press a button) as well as being able to locate where you are. This enables appropriate care to be provided quickly, without the need for manual checks.
A Helping Hand
Our products and plans are tailor made to help you or your loved ones stay safe. Explore the range below and see how Progress Lifeline can assist those with Epilepsy.
Epilepsy bed sensor
These are used to detect seizures whilst in bed. They are able to detect movements that are associated with a tonic clonic type seizure.
Footprint GPS Alarm & Falls Detector
The Footprint is a GPS location device, pendant alarm & falls detector all-in-one.
Falls Detector
The Falls Detector can be worn as a pendant or as a watch. When a fall is detected, the device automatically connects the wearer to our alarm response centre – no need to even press the button.
Key Safe
A KeySafe can be installed externally to allow safe and secure emergency access to your home. (A code is used by contacts that you approve to help in an emergency).
Emergency Home Response
Add our Emergency Home Response service to any alarm package for just £11 per month. Our responders provide 24/7 assistance to you at home if your family and named contacts can’t get there.
Disablities & Mental Health Issues 