This page is part of an conversation you can find on YouTube at: https://www.youtube.com/watch?v=O9-7OKyJmGw
After a surgery back in 1994 I was in a constant attack for almost 2 years. Doctors told me I was in a very bad condition and I needed to work on it. So I went to a rehab center and that made it even worse. What nobody knew than and the most still don’t know is the exercise and the food I had to take to build up my strength kept me continuously in an attack. After I and the doctors as well gave up things started to get better.. The attacks toke as long as three days up to two weeks and the better periods were getting slowly better.
So from that period of time it was clear I had to do with attacks, the only thing that helped me a little was taking 1800mg to 2400mg ibuprofen. A specially on the mood swings I have when the potassium is low. What I didn’t understood was that attacks could be totally gone in 30 minutes. So like I had an attack for 3 days and than at once on the third day completely out of nowhere the attack was gone… completely mind blowing. I experienced attacks in minutes caused by cold also completely mind blowing and no doctor believed me.
The last 5 years (I am 55 years old now) my muscles are getting weaker so the attacks come faster after less exercise. During the winter 2015/2016 we had a stressful period and I got a major attack that lasted for 3 months. During that attack I did a lot of Googling on this subject. The best thing I found was that ibuprofen raises the potassium level in your blood. From that moment on I knew it must have something to do with potassium. Soon after that I have found the existence of HYPOPP a disease I recognize my situation for 100% in. All the triggers are spot on.
I ordered “Kalium Verla” on Ebay and tried 1 bag every day but didn’t noticed much. So I went to my doctor with my first video and she instantly said Oh oh Parkinson disease until see saw the video than she said no it’s not, I think you are right with your potassium related disease. From that moment on I get the Kalium Verla (potassium) from the doctor. Kalium Verla contains 2157,8 mg Potassium citrate that’s 20mmol potassium=780mg). At this moment I take up to 8 or 9 bags a day to avoid attacks. I really suffered from attacks every morning. So I go out of bed at night at 3:00 to eat and drink something and take 1 bag potassium. In the morning I take 1 bag potassium and eat before I get out of bed. Since than I have no attacks anymore in the morning. I am faster out of food because I have no large bowel..
When I have an attack I take 4 times every 15 minutes 1 bag potassium and sleep, after three or four hours the attack is mostly gone. Light has no effect on me I think, for me it is cold, stress, waiting to long to eat something, exercise and carbohydrate rich meals. I have tested it myself several times. So I am now able to avoid attacks ( I am right now 10 days without attack) but I can’t go out I have to stay in and around the house. I can cook a meal, do the dishes and take care of our animals but after about 45 minutes I have to stop. I don’t drink coffee anymore, less fast carbohydrates like sugar, etc. I tried potatoes and bananas to raise my potassium but they are to high in carbohydrates so didn’t help at all and even made things worse.
Until now I haven’t seen a neurologist who understood what is going on even after watching my videos and seeing me having an major attack and I have seen many. Maybe I am living on the wrong continent 🙂