Sorry all, I am going to offload. I really need to
I am just soooo fed up , feel depressed and just don’t know what to do.😢I am really struggling with my seizures and they just seem to be getting worse, no medication 💊 seems to control them, I am now on probably my 8th medication change since 2019. I have lost loads of hair and continuing to, hair every where, 2 bald patches at the front and soo thin, I have gone from thick hair to whispery fine hair, I have tried everything but nothing works , this also causes me distress as I no longer have any confidence and self esteem. I have no social life as I feel too depressed, my work is just constant stress and I feel and look a complete mess😢. I am usually a real upbeat person but recently in the last few months I can’t seem to pick myself up. My new medication is now pregablin , which has its own side effects, I am sick of suffering all the side effects , another tablet another day! I feel bad about moaning when so much else a lot worse is going on around the world and I should be greatful, but I really , truly am so fed up. My husband is struggling to cope with it all, he’s an amazing person but I think everything has just got to him as he also works and is also looking after me when my seizures kick in. My recovery from seizures has now gone from 2 days to approx 7 for me to feel back to normal, and my seizure activity is a lot worse too. I just don’t know what to do anymore.
Ok moaning over, tomorrow another day, first day of me weaning on to pregabalin! Thank you for listening to me whinging , I actually feel a bit better. 🙂good health to you all x
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car67
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You have to vent! I'm 81 and had seizures for the first time at 15. I certainly can identify with your feelings. It took a lot of trial and error at that time, and I was a junior in high school. I missed graduating with my class because I was in and out of the hospital with tests etc. It was a tough time as you are going through now. I had trouble getting rid of the petit mal and had my last grand mal at age 35. Everything was fine, just on maintenance meds and after being diagnosed with GCA (2019) and put on steroids, I started having those strange and familiar 'warnings'. I was put on Keppra, 2000mg, and it has worked for me and calmed those feelings. Do you have a good neurologist? Do you have access to a teaching hospital for a full workup....you have probably been through all that. Let me know...if I could hug you I would. Control comes when just the right combo of meds comes for most of us.💕
What a lovely message, thank you so much for replying. I did feel better after venting.I do have a good neurologist but I think they are probably a bit fed up too! Also I used to have a funny taste or feeling in my mouth then would go into a seizure, but in the last few months it’s been different. I have these (well I can’t really explain it but I will try) funny little feeling every now and then in my head then I have seizures a few days later , this has been quite routine, but the taste doesn’t happen any more.
The neurologists are keen for me to have neurosurgery, I have a cavernoma on my left temporal lobe, and they want to remove it. When I get really down I tell myself and (anyone who will listen), that, “ yes ! I have had enough , I’m having the surgery” but I think they go deaf on me as a few days later when I’m better I become reluctant again. I have done extensive research into the surgery and there are pros and cons but really don’t want to out myself through that only to continue to be on the medication for the rest of my life!
You are an amazing person, to go through all that you have done, I hope I can become positive and upbeat again like you sound. Thank you and a big hug to you.🤗
You are amazing...think of it!!! My years of going through what you are are so long ago but I remember the uncertainty, anxiety, worry, weird sensations and trying various medicines. Trial and error...risk vs benefit and so on. It takes every bit of strength and faith you have to 'endure' what you must. You are having normal and healthy reactions and feelings. On top of what you are dealing with...no need to add beating yourself up.
I've had times where you could have wiped the floor with me, believe me, sometimes I didn't want to pick my head up. But, we do pick ourselves up and go forward. I have to have really good talks with myself sometimes but through the years I've learned that it is OK and normal for me to be down. Sometimes it takes a few days. I also think about how difficult others have it, like mothers with babies in the Ukraine or people who have lost hope.
I am familiar with the bad taste or even sometimes an unusual odor. How old are you if you don't mind me asking?
I did research cavernoma, I had never heard of that. Such a big decision but today the medicine is so different and advanced...I don't know. I can honestly say....NOT ADVICE.. that if it were me...get the rasberry out. I also wear a CPAP, love it, and the gentelman I was talking to about the equipment..oh, maybe 20 years ago had seizures. He was telling me about all the grand mals he had as he went through college! BRAVE, huh! Finally, he had surgery and they implanted some device in his brain and he was seizure free.
Thank your lucky stars you were born, now. In 1955 at Childrens Hospital in Boston I had a test called pneumoencephlograph. They did a lumbar pucture and drained most all of the fluid around the brain...then pumped in oxygen or helium...strapped you in a chair and put you in different positions to get a look at the brain. My parents had to sign a paper acknowledging the risks. I was unconcious for three days and had quite a headache, you can imagine. That was the old days and thank heaven things are so much more advanced. Archaic.
I sure did gab...but I can relate to you so. I'm here to tell you, if you have first class neurologists, you are very fortunate. I feel I did and yes, it took a few years but I'm OK and you will be too. As far as taking meds, you would if you were diabetic. That is the way I looked at it. Diabetics take insulin because of a malfunction. You and I take medicine because of a malfuntion and I'd take as much as necessary...and I know I'll take it all my life. That is OK with me. 🙄🙄Hope I don't sound like a lecture....sending another HUG...💕💕do stay in touch. xo
Thank you your reply, you sound like you had a pretty difficult time back in the day and yet you are so positive and here supporting me, thank you. How time and medicine and so forth has moved on. Unbelievably.
I am 50 but developed epilepsy when I was 39 so really did turn my life over.I have seen old footage of videos of children and adults with epilepsy years ago and how it impacted their life , and also how they were perceived because there was little or lack of understanding of it. We have moved on a bit more. If you mention you have epilepsy to someone , people automatically think your going to start fitting, there is still lots to learn from the different types of seizures.
I started my new meds yesterday , had 2 seizures early hours this morning and have a splitting headache. It’s trial and error so let’s see how long it lasts until new change. Hopefully this one will be longer lasting, tbh they generally are, it’s when either become immune to them or suffer terrible side effects ! Take care and once again thank you.😀
It is totally my joy! to 'talk' with you. It is a difficult period of trial and error. What you said about the perception of epilepsy is so true. As a teen some friends could not longer come to my house and in later work with the Epilepsy Foundation I met a couple who wouldn't let their 35 year old out of the yard. We had a large billboard which said, "A person with epilepsy is just a person....who has epilepsy."
For some a scary word, we occasionally have an electrical storm in our heads. Then they see we are like any other person. I sure hope these new meds do it!!! I did find there was a connection to hormone activity...from the teen year into my thirties. You aren't alone!!!
Please keep in touch and fingers are crossed. Believe...💕💕
How are you. Just thought I would check in. I hope you was able to take advantage of the lovely weather yesterday (Saturday 30th ).
I have started my new medication 💊 pregabalin , as always so far so good. I had my second increase Friday another 3 weeks to go to get to my dose before it’s looked at. It’s being going ok so far, tolerable, tbh. I will probably messaging you in a few weeks saying I can’t tolerate it! No , I’m going to message to say I can as I am going to stay positive🙂.
Take care and let’s hope the sun ☀️ comes shining out again, it amazing how a bit of sun can make you feel so happy 😃 x
Hi car67I've just joined. It's inspiring to read how people deal with their epilepsy. You sound very resilient. I'm struggling to accept my epilepsy but its no where near as debilitating as yours and other members but it does help to know I'm not on my own. I also feel guilty for feeling this fed up when there are so many people much worse off than me.But it's not a competition and we are allowed to be fed up and have a moan. 😃😃
Hi Owl 32 and welcome, thank you for your reply. 😀
Def not a competition and yes we are allowed to be fed up and have a moan. Since my last posting I have had a few more med changes and still back where I started, and surprisingly going through a heat wave too! A bit too hot for me!☀️
I am trying to stay positive but do have my down days 😩but drag myself through these.🙂
How are you coping with heat wave, does it trigger your seizures?
HiI'm sorry you're not making any progress. Just reading the posts on here it seems that people change meds more than I imagined they would. I'm considering changing from lamotragine to sodium valporate to see if the side affects are less debilitating. The alternative is to stay as i am and be thankful my epilepsy seems to be under control. I'm just worried that i am missing out on feeling better. My relationship with my husband is difficult at the moment. I think we are both realising this may be as good as it gets
😔I'm ok with the heat, like everyone else struggling to sleep at night. I don't know what has triggered the seizures. I've only had 3. the last one happened whilst I was on an online counselling session and having a good cry. 😆 so I try not to get into a full sob now which is hard sometimes.
How do you deal with day to day going out and about? Have you had a seizure in a public place? That is my main anxiety at the moment, I get the bus to work so I'm looking to see who is around me, who could I tell if I start?
Unfortunately I have had them in public places, but I never go out alone for this reason. I’m literally at home now due to seizure at work earlier on, had to take my rescue medication and have been asleep for about 5 hours.
If you can get medication that stabilisers your seizures you are on to a winner, good luck 👍🏽
Change your neurologist? I'm 66 had my first seizure aged 14 have had over 400 of the things, there is a better choice now of medications than when I started, I'm on Vimpat and Briviact, one seizure from when I started on them in 2018. Good Luck👍
I have been on brivact and vimpat for 4years but more recently in the last year or so they haven’t helped, it appears I have become immune to the, so the story begun with different meds, side effects etc etc. I have been through the majority of meds and am still having them, they seem to be lasting longer . I will muddle along as best as I can.
To be fair the neurologist is good, he listens but has no answers!!! Is that him or is that because there are no answers!?
Yep! certainly sounds familiar, have side effects of them, but at the moment other conditions ruling the roost? Have been through most of my epilepsy selections [some really wild side effects?]My neurologist, her heart is in the right place, but very limited now in her selection, actually I chose that particular 'selection' myself! I've had that condition so long, in reality we both agree, there is going to be no miracle cure for myself at my age? Sounds rather pessimistic but true🥴the brain probably the most delicate organ in the human body certainly as far as major medical breakthroughs the least likely of getting anything!
Lol , so true, and right now I also have selected my own meds and amount to how much I can tolerate . Sadly no cure for epilepsy only maintaining it, so I will continue to try and maintain until they start to ask me again for the brain op! Now it’s a def no as mentally I am too drained and worn out to even consider it , ironically from the onset it was a no, def no, but now I’m swaying more towards if it makes my life even a bit better than it is then I seriously would consider it! Let’s see 👍🏽
I’m on brivact 125 mg and 150 mg pm, I’m increasing to 150 briv am tomorrow. I have been on these two since 2018 but just increased a few months ago to higher dose in evening, 150 vimpat am and 200 pm
I seem to have become immune to these so no longer working , which is why I have had so many med changes since last year My seizures are worse by the day, I have had so many but none work as the side effects I suffer, maybe I should consider increasing vimpat,
While on transfer in 2018 just on Vimpat I had a double seizure, in the afternoon, [very violent, broke my skull, out for eight hours] in the health centre, had one seizure in early April 2018, late April on present medication, had one seizure in Dec. 2019 [that could be explained?] since then nothing. I have Juvenile Myoclonic Epilepsy. Do not change dosage without advice of your neurologist, doing so can cause damage to the signals sent to your brain, making the medication, in reality useless!
Hope you have some joy with your change, unfortunately going through early medication of PC at the moment, but have to be very wary of reaction of various medications for separate conditions🤞
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