Seizures....

I remember witnessing my neighbour’s daughter having a seizure. It was frightening. Her poor mother was standing by, just watching, as she has done many times before. In her case too, the Doctors could not identify the cause.
NannyG4 - how awful for you - I don’t know what to say really. That’s my only experience. I don’t see my neighbour that often, because I have moved, but I hear she still gets these episodes and have just learned to live with it, I suppose. Thinking of you

Thankyou crazyH.........

Just resurrecting this post as my DH had a nocturnal seizure yesterday. It was very scary and I couldn’t rouse him afterwards. We are in Brighton babysitting for the weekend but he ended up in the hospital. They couldn’t find anything wrong after taking scans etc but he has been referred to the epilepsy clinic at home. I am now scared he will have another and wondering how NannyG4 is getting on and if anyone else has experienced this.

My daughter has epilepsy, started in her 20s out of the blue despite all the scans no cause was ever found but it’s well controlled on medication. She has the occasional nocturnal seizure but no major ones. It’s been 25yrs now and she’s carried on a normal life, working and bringing up her 3 children.
It’s scary but people learn to live with the condition if it happens again make sure he’s in a safe place and afterwards he’ll be disoriented and drowsy and want to sleep. But if the seizure goes on for longer than a few minutes then consider calling for help.

tanith the problem was that I couldn’t rouse him after the seizure and his breathing was off. The ambulance was there within 10 minutes.

Well you did the right thing and they will get to the bottom of it at the epilepsy clinic and take appropriate steps.

dragonfly46... I've messaged you. Take care x

Nanny I was born with a rare hereditary neurological condition. As a child in constant pain in my legs and fell all the time my parents told it was growing pains and I was clumsy. Falls and pain got worse as I got older effected other things but I just thought it was weird.

1988 woke 1 morning unable to control my limbs . They did what I called jerking no warning it was going to happen and the movements didn't last long but violent and extremely painful. Pain got worse .

Cutting a long story short saw my first neurologist in 1992 at the neurological hospital London and they ran every test able at the time . Even when I had electrodes attacked to my head and videoed for 24 hrs even during the limb jerks my brain waves where normal.

Moved to the north west 2019 and my new GP sent me to see a neurologist but before him seeing him had 4 full blown seizures each lasting 8-10 hours and took my speech but thankfully it came after a few hours . It was one seizure per month. No warning just happened. And took weeks to get back to my normal before the next one hit.

Saw my neurologist beginning of 2020 he put me on Clonazepam 500 micrograms twice a day the lowest dose as he didn't know what was wrong but if that didn't work I wouldn't suffer withdrawal. But within 2 weeks my limbs where still after 32 years and the 4 seizures. And they have been still since.

My dose of Clonazepam was doubled to 1mg twice a day March last year as my legs felt like they had planks attached. And my legs felt better.

He had my blood taken to have my whole genome genetically tested when I saw him in 2020. But because of Covid the lab forgot to send the results so he only got them March 2022. I was born with hereditary Hyperekplexia gene mutation SLC6A5 type 3 which is a mutant gene in my brain receptors. And it turns out Clonazepam is the correct drug to treat some of the symptoms.HPX comes with a host of other symptoms . It's no wonder all the electronic tests where of no use it's in my DNA.

I would suggest that your husband asks his neurologist to have his whole genome genetically tested. It's a simple blood test can't remember how many vials of blood taken but think it was only 2. It was sent to Cardiff as they have a big genetics lab. The neurological hospital in London has one to.

I don't know what part of the country you live but my neurologist is at The Walton Centre. I was his only patient with this and none of his colleagues have ever had a patient with it. The rare disease society sent me a link to a Facebook group with HPX and because I talked about my neurologist. Someone in Chester asked if he would see her . Her GP sent a referral so he has 2 HPX patients but her gene mutation is different to mine as they are a few variations.

I am 66 now . But my life makes sense now and instead of thinking I am weird and alone . I am part of a rare group of people from all over the world with HPX because of them I know realise why my body did and does is normal.

During the limb jerks and seizures never lost consciousness or control of bladder or bowels.

No idea if this has helped . But I hope your husband gets help soon.

Sorry didn't realise this was was from. August last year . Hope your husband has help now and knows what is wrong.

Whiff I resurrected it because my DH had a seizure on Friday night.

It is more frightening for the onlooker, the person having one just feels as though they have fainted and often do not notice nighttime seizures. If the epilepsy is severe you will have a rescue remedy.

Go on epilepsy.org.uk for support and info.

dragnfly one of our friends started having nighttime seizures in his early 70’s, after some trial and error he’s on medication that works and is back driving, no further seizures.

dragonfly I know how frightened my daughter was when I had my first one . I never lost consciousness. I thought I was talking it was only when my daughter was crying and said my you aren't saying anything my lips didn't move. But I thought I was. Then I started to cry. When I had the other 3 I realise it took my speech. But like I said in my post Clonazepam changed my life and then to have my diagnosis my life made sense. Unfortunately my fit healthy husband died from cancer in 2004. But life isn't fair . But we have to live the best life we can no matter what.

If anyone is on sodium valproate for epilepsy please make sure you have regular blood tests to check your liver. I was put on it in 1992 along with carbamazepine to help with the limb jerks but didn't know about the fact either and both can cause jaundice. Only found that out in 2017 when long term use of both gave me jaundice and I should have died. As my bilirubin levels where that high my gastrologist told me people normally died with my levels. He also told me I should have been having 6 monthly blood tests from when they prescribed it.

dragonfly I hope your husband gets the help he needs. And remember to look after yourself as well.

Jaxjacky

dragnfly one of our friends started having nighttime seizures in his early 70’s, after some trial and error he’s on medication that works and is back driving, no further seizures.

That sounds encouraging.

I had a King Charles spaniel who had epilepsy. His fits were always at night. They were fairly well controlled but several times he had cluster fits and he died, aged only 8, from status epilepticus.
My vets seemed to know very little about epilepsy, I’m sure people get far better care than my dog did but he didn’t know the fits happened and lead a normal life otherwise.

My DH started having seizures as a result of autoimmune encephalitis at the age of 68. My heart goes out to anyone else whose loved one has seizures. Although I have witnessed it multiple times now I never get used to it, it is always terrifying. His tend to happen early morning when he is still in bed, but there have been a few at other times resulting in falls leaving in black and blue, so it is hard to truly relax especially if he is in the shower or whatever.

Now he is on Lamotrigine which is largely keeping it under control, and the intervals between seizures seem to be getting longer. He is 71 now, so I doubt whether he will be able to go back to driving.

As someone else suggested there are online resources for sufferers and their family. One site I regularly check is Health Unlocked which covers all sorts of different conditions.

Sorry, HealthUnlocked all one word.

When I was ten, I was fooling about with my fourteen-year-old brother in his bedroom one morning when he began to make strange noises. At first I thought he was playing, but after a while I realised he wasn’t. I was terrified and just ran to fetch my mother. I kept out of the way.

He was diagnosed with epilepsy, which he suffered from for some years but eventually grew out of. His school life was very difficult, but his adult life was quite normal.

I have had epilepsy since the age of 17. It coincided with a late diagnosis of glandular fever but scans showed no particular cause. I have taken medication ever since and following tweaks of the drugs I haven’t had a seizure since the late 70s - but I must take the medication for the rest of my life if I want to be able to drive and be sure of not having another seizure. Modern medicines are less aggressive than the ones I have taken for over 50 years, which can make you very drowsy until your body gets used to them. A seizure is frightening for the onlooker. The sufferer is just confused, probably has a headache and may have bitten their tongue. Hopefully medication will prevent further seizures for those whose loved ones are suffering but it is a matter of getting the dosage right.

I don’t know if my brother still takes medication. He’s 87 now.

Yes, I live with someone with traumatic seizures. Each seizure causes brain damage so it is important to see an epileptologist who can prescribe one or many anti-seizure medications. Keep a log - write down the time, the length and the intensity of each seizure so they can adjust the medication accordingly. Even if they cannot find the cause, they should be able to stop the seizures. The goal should be to have zero seizures.

watermeadow

I had a King Charles spaniel who had epilepsy. His fits were always at night. They were fairly well controlled but several times he had cluster fits and he died, aged only 8, from status epilepticus.
My vets seemed to know very little about epilepsy, I’m sure people get far better care than my dog did but he didn’t know the fits happened and lead a normal life otherwise.

Totally agree about vet comment! A beautiful mutt of mine, lost in 2022, was classed as an uncontrolled elileptic due to still fitting despite the drug cocktail she was on. My vets were fab, but its the casual "oh, it's only epilepsy it's nothing to worry about!!" ANYONE who says that to me, I will go for them! It IS something to worry about, its the brain, whether human or pet, they haven't mastered brain transplants yet! My retired vet once explained to me what epilepsy really was, re electric signals and tolerances, but he also said, quietly, the more they have, the more damage is done. My dog was literally chucked off beds due to the fits, even sent down the stairs one night, the upside being she was unconscious at the time and unable to stop herself, therefore preventing herself from breaking her legs, (hell of a noise though when she hit the wall, dazed too when she came round!)

Brilliant lap dog, one of the best. Collie X Rottie, little dog in big dogs (37kg) body.

Who was so cruel to your dog? You? Disgraceful treatment.

My daughter use to have them 6 days a week, quite often more than one. We had them in Tescos, the swimming pool, going to the airport and so on, they became part of my day. I learnt how to handle them, don’t panic, let her lie there on the floor and recover. In the supermarkets it was easier as they would bring a wheelchair and I would sit her in it to finish my shopping and for her to recover. At the airport once again a wheelchair was found so no problems. Talk to your doctor about them and how to act. Good luck and I hope you can become more relaxed when they happen