Hi everyone , I’m 38 and had my first ever tonic clonic seizure 🥲 a couple of weeks ago, it was such a shock to me and unexpected, ended up in hospital for a couple of days and am currently waiting to see a consultant, I haven’t had a diagnosis as yet. I’m just wanting to reach out to other people in the same situation to learn more about this also if anyone would have any advice on the any apps that are good for alerting family if I’m having a seizure, I have purchased a smart watch as I really want my freedom back as currently I’m feeling The need to be with family all the time in case I have another one.
Many thanks,
God bless 🥰
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Faith7
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I would wait to see your consultant, and then ask advice from them. If they are an epilepsy specialist/consultant put yourself if their hands, it really depends on a lot of things, if you do have epilepsy, what sort of epilepsy, there are quite a few🙄 do you have auras before a seizure? A CT scan and MRI might be in order, how many seizures have you had? if you are prescribed to take medication, what side effects might they have? and would they affect your everyday life? keep your family alert of your progress, they can really be of real comfort? Epilepsy Action are a good bunch available on this web site [plug, plug!] Get in touch with an Epilepsy support group in your area, your consultant should have local contact details! I have had Juvenile Myoclonic Epilepsy for over 50 years, things have changed 'a little bit' since then [boy has it changed🙃?] Getting in touch with a support group with people with epilepsy, can be a real weight lifter, might even make a few close friends? We are all normal human beings👍 A bit jealous of you affording a smart watch, an identity bracelet is a good idea, with relevant contact details. [I'm near retirement now, my present medication is pretty good, with one seizure since I started using them in 2018!] Good Luck! 👍
Hi Adlon57 thank you so much for your reply, I appreciate it 😊. Yes I’ll defo ask consultant too re apps etc. I really am hoping it was a one off seizure that so many people get, hard to know at this stage! My CT scan was clear and bloods clear, my sodium was low which can cause a seizure but can also be low due to the seizure 😩 so don’t know re that one! I’m hoping to see consultant in the next couple of weeks and will push for an eeg etc . Weird thing is my dad (who’s 70) suffered his first seizure 1 year ago and has since had 5. Have had lot stress looking after my dad etc who lives alone then I had a seizure 😩. I have 2 little girls too so really need to be healthy for them.
Aww I got my smart watch on offer! It’s apple series 3 ands got wee offer on very soon it I sat 129, was very happy with thy! The new one out is near 400 but I’m happy with older version! Thank you for advice too re bracelet I’ll get that too.
That’s great you have only had the 1 seizure in 3 years!
Hi I understand how you feel as last night it seems that my own brother had his first epileptic fit known and I'm now at the point where I believe giving permission for my medical records is going to give him the best answer than before because I asked him questions about this fit because my brother suffers from non epileptic fits but I myself have epilepsy and when the doctors done his test it came back inconclusive but my brother didn't know about me at the time so didn't know it was linked but last night my brother was explaining my fit's not his normal versions as I already have a meeting with his doctor I'm going to give my file up for this reason and ask for both an EEG and a vEEG to be on my brother and myself if it's needed to see if they can now get a answer for my brother I'm bringing to the doctor 34yrs of epilepsy and I am willing to do any new tests with my brother that his doctor working with my doctor asks of me my brother is shamed and afraid even though he knows I'm helping him I tell him we need the Dr to be sure and I can't see.
So the other poster is absolutely right about waiting to have the tests done and good luck to you.
Hi Wintersbite thank you very much for your reply, it’s good to meet likeminded people! Yes i will wait to speak with consultant and take it from there . All the best with your journey,
Good for you I have actually just come off the phone to epilepsy action and the advice I received is as always amazing when I informed my brother I was calling them I told him I was asking the big guns for advice and he smiled and said thank you this could be a help to you I've never received poor advice from epilepsy action only the best advice and the level of kindness is just as amazing.
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Hi yes of course you may use my comment please help yourself I was just trying to help others receive the best help in epilepsy I really didn't do anything ( I'm guessing you wish to use my real name not my id that is fine aswell but just so I'm sure may you reply me on which name you wish to use id name or true name?)
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Sorry to hear this, I also had my first seizure in 2018 at 42, after various tests & scans I was diagnosed & finally put on medication a month later. I feel you pain on this, I have a app on my phone which tracks me when out n about for my own peace of mind x
Hi Hidden many thanks forYour reply. If you don’t mind me asking, did you have any more seizures or did the medication work then? Also did you take time off work at the time ? My doc wants me to take 4-6 weeks off to rest, I don’t normally take sick and my boss is very supportive but thought this seem long? But maybe not? Sorry this is all new to me! Thanks 😊
Hey, the medication wasnt high enough so I’ve had 5 seizures between September 18 & March 19, March 19-March 20 a year free so got my driving licence back but neurologist have now lowered my meds n back to square one 🤦🏼♂️ I was off work September to Middle October and then December to following March, I was same as you desperately wanted to go back but after 3 seizures agreed to the additional time off and the March 19 phased in over a month, meds are trial and error until right level is found 😢 x
Hi, I am the same as you but aged 51.I had my first one on 22/09/21. I am still in shock & very scared. I’ve had a couple of MRIs and an EEG and have had confirmation that it is epilepsy from an old head injury (from when I was 7). They ha e put me on Lamotrigine which is ok but still getting auras (I think or it could be anxiety). I am so sorry this has happened to you. Big hugs from me ❤️❤️❤️❤️
I have a smart watch app called seizalarm. You can run a free trial for 2 weeks then it’s $14.99 USD a month via Apple Watch. I was having seizures in my sleep and feel better having this app. It can detect convulsions, elevated heart rate and alert emergency contacts that you set up to let them know you need help. It’s a great app and may give you some peace of mind. Only con to it is it burns up your watch battery significantly. I’m not sure what current legislation is in the UK for CBD oil but it wouldn’t hurt to try that as well until you see a specialist. The specialist is going to try and run tests, try different medications if you continue to have them or just try to pin point what may have caused it. If you continue to have seizures they will try to drug you up quite a bit ( my experience living in the U.S). I didn’t like what they had me on because of many negative side effects so I switched to cannabis instead which has been helpful and effective for my nocturnal seizures. CBG and CBD are great compounds in the cannabis plant that reduce seizure activity, but doctors don’t want to tell you or support this because of what they make off of big pharmaceutical companies. Stay positive throughout this journey because it is not easy and it can be scary but just stay strong and have faith ❤️
It must have been a shock to have had this seizure. It can be really helpful to share support and information so its good you've heard from others here.
If you need it at any point we have some information about alarms and monitors for seizures on the website. This explains a little about the different systems that are available and how they work: epilepsy.org.uk/info/daily-...
I hope you're able to get your consultant appointment soon. We have some information about what to expect at your appointment that you might find helpful: epilepsy.org.uk/info/diagno.... But if you have any questions you'd be welcome to call us at the Helpline. Our number is 0808 800 5050.
I had my first seizure during the night at age 32. Nothing was done until I had my second (apparently a lot of people have one seizure in their life and then no more). I had EEG and MRI. No clear reason, could only be attributed to stress. Since being put on meds have been seizure free (except for one further one when I had run out of meds and got a bit blasé about it. Serves me right!!). I feel very fortunate that I am stable. It is a horrible thing to go through but I am sure the experts will get to the bottom of your seizures and I hope you get put on the right meds straightaway. It is really scary and can make you feel very vulnerable initially but once things get sorted you should start to feel more like your old self. Wish you all the best.
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