This is my 1st post on this forum, I’m sorry it’s so long, but I’ve a lot of time to think about my problem and I’ve just today discovered this forum...
I’m 58 years old, non smoker, quite fit and strong – I visit gym several times a week for past 30 years, healthy lifestyle, good diet, moderate alcohol consumption.
4 years ago my doctor checked cholesterol test and said I was getting a bit high at 6.5 and I might “have to go on Statins”. I don’t have any medications and I don’t really want to take statins if I can avoid it. I started having the cholesterol lowering yogurts every morning, as well as having oats every morning.
However, around 8 weeks after I initially started having these cholesterol lowering yogurts daily I started to experience periodic ‘funny turns’. Quite scary at first, a kind of seizure from my head down my right arm to right hand. Pupils dilated, pale face, cannot think or speak. It passed after maybe 5-10 seconds, and then a couple of minutes later I was ok, but my memory was jumbled up. I do however make a full recovery.
Anyway, these things happened periodically and when my Wife saw it, I then booked to see my GP, he examined me, send me for MRI scan, heart checks, neck arteries scan. Results came back ok and GP said it was “probably stress”.
3 1/2 years later these episodes are still occurring daily but are milder, however it shouldn't be happening and so 6 months ago I went to see a Neurologist who said it was ‘petit mal seizures’ that will require medication for life... This shocked me tbh, I didn’t expect epilepsy.
I told the Neurologist about the cholesterol lowering yogurts affecting me, and that I wanted to try stopping them to see if it cleared up my problem. He said it wasn’t that. I also cancelled the scans/tests he had booked me in for.
Since May when I stopped the yogurts, I’ve felt different. After 3-4 weeks a ‘brain fog’ cleared and my mood and general mental clarity started to come back to normal. I didn’t realise how much those yogurts seem to have affected me.
It’s now 6 months. I’m back functioning pretty much as I was 4 years ago... BUT I’m still having episodes.
However they are very much milder with less effect as 6 months ago, and not as frequent (but still a few times each week). They never happen when I’m busy doing something (eg. working, walking, concentrating, etc).
It occurs when I feel a bit tired (it used to happen almost every morning when getting up).
I take various supplements, I avoid salt and sugar and we eat healthy. I am doing my best to try and get through this, and wonder if anyone has any ideas. Is there something I’m missing? Is there something these plant stanols can deplete or affect?
If you’ve read my problem to the end, I Thank you!
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craigside
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You are taking a positive approach which is excellent and obviously a healthy way of life too. However, I would suggest that the scans/tests would do no harm and your neurologist would then be able to advise you further. It is not unusual to develop epilepsy in later life and it can be eased with medication. This would, in turn, improve your current quality of life. I wish you well.
Hi,
It isn’t easy as you are trying everything & analysing all things but I do fully agree with Beansheen that there is no harm in having a MRI scan & discussing your options.
I’m always analysing everything I do, like you I have a healthy life style fitness etc.. but stress & lack of sleep can have a puck impact as my neurologist calls it ‘Over flow dam’ - stress then relief/ relax .
Just remember everyone is different but we are all here & have diff meds 🙃
Thank you for these replies. I’ve come a long way with this and feel I’m getting closer to ending these persistent, but still (I feel) diminishing little episodes.
I’m reluctant to just take the medications, because in my case I feel pretty sure that my taking the plant stanol/sterol yogurts caused this to start. Since stopping the yogurts I feel remarkably different, I hadn’t realised just how much these products had affected my mood, thought capability and mental clarity, it’s quite shocking to be honest.
Also since stopping the yogurts my episodes have reduced in severity and frequency. I’m now almost able to know when it might occur - when feeling fatigue (evenings, my age, etc) and an almost intangible sensation in my head. When it happens it’s quite brief and doesn’t affect me as deeply as they used to, so I recover more quickly. I also notice that I feel ‘refreshed’ with a clear head after an episode.
A month or so ago I started taking a Vit B6 supplement supposed to be good for muscles etc., when weight training. Within days of starting these my episodes noticeably increased/worsened, so after a week I stopped and then they calmed down and went back as before.
I’m suspecting there is maybe some subtle nutritional element (vitamins, mineral, amino acid etc) that would possible correct the imbalance that is the cause...
I am really pleased to hear that you are trying to avoid the medication route.
However, as someone who has lost 2 close friends to SUDEP, the second was buried just this week, I think the tests are essential.
Epilepsy has to be taken seriously and finding the cause for you is really important.
You could well be correct in thinking that there is a simple imbalance of some vitamin or mineral but for the sake of your family please reconsider the tests
Have ad Epilepsy all my life. What I find triggers it really is a combination of things. Lack of sleep, hunger, dehydration (alcohol related) and stress. Wrapped into one and you wake up in hospital. Riding racehorses for a living was not a good choice!!
your seizures sound so similar to mine. They happen when i'm sleepy or spaced out or when i haven't gotten a good night sleep and have to get up early, never when i'm involved in mental or physical activity, more like when i'm in the shower, or just daydreaming. They begin with a sensation of Deja Vu then escalate until i'm in a partial state of consciousness, don't know my name can't talk etc. The whole thing is over in 20 seconds. I had them for two years as a teen, then they went away for 15 years and started again in my 30's. I thought they were panic attacks ( in fact, i was told as a teen they were panic attacks) but they are seizures. I did an mri, eeg etc. These are seizures, no they aren't debilitating, but they are simple partial seizures triggered by hormones and sleep deprivation and they need to be treated as such. I am on 750 Keppra for six months now and they have disappeared, they are totally gone and i feel better then ever. I'm a writer and i can finally write again, no more brain fog and i physically feel better. Good luck on your journey, please don't take medication off the table, it can improve your quality of life immensely.
I haven't updated my experience for some months, but I hope my report may help others suffering from the same problem.
I have been waiting to be sure my 'epilepsy' problem had cleared up naturally before I replied.
In Dec' 19 I visited my GP about something else. I don't go to the GP very often and I was jumped upon re' my epilepsy diagnosis from 7 months earlier. I explained what I'd done, etc., and was told I had to see an NHS Neurologist to check me out and update my medical records. So, in June '20 I had a consultation with the NHS Neurologist, he listened to my explanation of my experience but didn't believe my explanation that these cholesterol lowering yogurts are the cause. I believe they are. I keep a diary, and I know when I started to feel different and when I started to have seizures. He wants to see me again in 6 months to follow-up.
This is a recap;
At the time of seeing the Neurologist in May '19 I was having 2-3 mild episodes per day. I stopped taking the cholesterol reducing drinks in May '19. After 2 weeks I started to experience moments of ‘fresh clarity’ (best way I can describe), and after a month or so the ‘muzzy head’ feeling (not unlike a mild hangover) cleared completely. I didn’t fully realise this ‘muzzy head’ feeling I was living with 24/7 because it had crept up on me slowly over some time after I started taking these drinks. It was as if I’d been suffering a mild hangover and had these funny turns particularly when stressed. When trying to tackle a technically challenging problem, a complex spreadsheet, a programming challenge, an engineering challenge, etc., I struggled with all these things that I’ve been doing fine for all my adult life. Attempting these challenges was a real struggle for me whilst affected with this ‘muzzy head’ feeling.
Over the following months my ‘funny turns’ reduced in intensity and frequency dramatically and they have disappeared completely some months ago.
I’m perfectly fine now. I am now handling all sorts of technical challenges successfully as well as producing my artwork. I have been told by 2 Neurologists that these products won’t have this kind of effect on someone, and I can understand the reasoning.
I have however done a little research and new studies (published Nov'19) suggest that these products, ie. Phytosterols could cause issues. In a recent publication by “Current Medicinal Chemistry” called “The Impact of Phytosterols on the Healthy and Diseased Brain” ... abstract;
"The central nervous system (CNS) is the most cholesterol-rich organ in mammals. Cholesterol homeostasis is essential for proper brain functioning and dysregulation of cholesterol metabolism can lead to neurological problems. Multiple sclerosis (MS) and Alzheimer’s disease (AD) are examples of neurological diseases that are characterized by a disturbed cholesterol metabolism. Phytosterols (PS) are plant-derived components that structurally and functionally resemble cholesterol. PS are known for their cholesterol-lowering properties. Due to their ability to reach the brain, researchers have started to investigate the physiological role of PS in the CNS. In this review, the metabolism and function of PS in the diseased and healthy CNS are discussed."
I suspect that these 'Phytosterols' (ie. cholesterol reducing yogurts) affected me. Within weeks of stopping taking them I started to feel better. Gradually over 8 months my epilepsy 'fizzled out' and I returned back to 'normal'. It was the overall subtle feeling in my head 24/7 that affected my whole self, that seemed to build up to an episode then reduce for a little while before building up again. This has completely gone and I feel great.
I’m grateful I went to see the Neurologist because the shock of being told I had epilepsy and the possible consequences of his pre-test diagnosis prompted me to review my history and take the action I did to try and resolve my problem without medical intervention. Which fortunately has worked for me, and I am grateful for that. I realise I been fortunate, but I have been logical, organised and truthful. My Wife suffered the worry of seeing some of my episodes but I'm grateful she trusted my belief, and eventually she could see I was getting better.
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