Cholesterol Lowering Yogurt Triggered Epilepsy?

[craigside]

Hi

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!

[BoytjieD]

Hi Craig,

My epilepsy was diagnosed when I was 11 years old - 31 years ago. I was on several medications which was changed many times by neurologists. I was in the UK for almost 10 years, & after a very serious car accident which required for a helicopter to fly my to hospital & be shocked twice for my heart to start beating again - & being in a coma for over 2 months & paralyzed. I've been back in SA for just about 9 years, & seizure free for over 2. One thing that I learned extremely well, especially these last 3 years - Our Heavenly Father & His Son will ALWAYS be by your side. You should never stop giving up on you faith & not yourself.

A much better food diet worked out for me by a professional who deals with people on neurological medication(s), has helped me very much. I lost so much weight & have more energy for every new day. I'm positive every day & will not give up on life - no matter what.

[Hidden in reply to BoytjieD]

Hi BoytjieD , do you have the contact of your dietician? I could do with a specialist line this.

[lgd333]

Hi, I've had epilepsy now for 46 years and was on Tegretol and Phenytoin, until recently when I was changed over to Vimpat, but still take Phenytoin. My cholesterol was always high. I tried 3 different types of Statins which all had a negative impact on my body. The main side effect was sore leg muscles (thighs) but it didn't affect my seizures. I have tried cholesterol lowering oats and low fat/cholesterol yoghurts, but these still don't affect my cholesterol levels which are higher or my seizures.

[G1na]

I’m sorry to hear your experience. I’m sure the yogurt may have played a role and could have been a trigger of some sort. People who have epilepsy have different triggers, and some are foods. I’m glad you didn’t go ahead and listen to your doctor right away and that you are trying to figure out what is going on. It’s great to hear that you are taking all the right steps to be healthy.

I do think it’s important to make appointments for those scans. To me it sounds like you may be experiencing petitmal seizures. I experience those and the dynamic of them has changed over the years. I’ve had them since i was 14-15 and am now 29. The dynamic completely changed about 5 years ago. I also think that as a teen I did not understand, so it was easy for me to accept it. as an adult it has become harder to accept my condition although I am not in denial. It’s hard because it has affected my life in many areas/ways. I lived “in the closet” for about 10 years. Lying about my job status because I was afraid of being judged, and I am judged.

I know I am over medicated, have VNS therapy (a pacemaker like) and I still experience these episodes. My triggers are: lack of sleep, emotional stress, hot showers, menstrual cycle, and I’m sure there’s more. I do experience them after my brain finally gets a break from my busy life. Although I have 150-200 seizures a year, interestingly enough I have never experienced an episode on vacation. My longest vacation has been a month. This shows me that stress plays a huge factor. My suggestion to you would be to jot down the day/time/duration/symptoms/foods you consumed/stressors/ etc. of the seizure. This will help you find patterns to your seizures. If you are able to find patterns you can then work on eliminating or adding certain things to your lifestyle.

The reason why I’m glad that you have not yet been medicated is because I strongly believe that we should be the ones in control of our health and not Drs. That being said, I still believe it’s important to get scans done, listen to what they have to say, go home and think about it and make a decision. I was very young and my moms first language was not English. We had full trust in my neurologist. I did not start advocating for myself until I was in my early 20’s; my neurologist didn’t like that. I do wonder often who I really am without these drugs and it’s a very sad feeling.

The good thing I see in your case is that if you’re against medications you can choose the natural route (foods, liquids, herbs) yoga, meditation. In my case if I miss a dose, I will most likely have a seizure the next day. Who is to say that the medicine is not what keeps me sick. The long term side effects have also made a dent in my lifestyle.

I finally took the steps necessary to seek a second opinion and should see them in May. I should have done this many years ago. My CAT scans, MRI’s, EEG’s, WADA test, psychosocial test, have all come back normal. The symptoms I experience are definitely epilepsy-like and I have also experience convulsions; I have learned that there are many other health conditions that look like epilepsy.

Hope all this helps!

[craigside]

Hi

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.

Thank you and good luck.