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 🙂
I have been examined a dozen times the last 24 year, a total of 6 neurologists, 5 family doctors, 1 rehab center and 2 hospitals. So far no doctor can tell me what is going on or is able to diagnose me, and I don’t think they ever will be. There are several problems we are facing on this one. Neurologists can’t diagnose you with this because the attack is different every 30 minutes. My attacks do come like “Periodic Parkinson Disease” (non existing disease yet) to get rid of the attack asap I have to take potassium. And after a few hours the “Periodic Parkinson Disease” is gone or at least almost gone. Neurologists can’t diagnose you with Parkinson disease either because it comes and goes and it is potassium related.
Further problems to get diagnosed is that my potassium level in my blood is normal, and the EMG is normal too. I do get paralyzed after the “Periodic Parkinson Disease” part of the attack but for this one we face another problem.
Here in Germany and in the Netherlands when the neurologists examines the patient the moment the examination takes place is the image the condition they use to diagnose you. Even if you get paralyzed 15 minutes later still in the doctors office that doesn’t count. Just because it isn’t during the examination. Even you if you can’t move 15 minutes after the examination takes place they will send you home. When you are lucky the neurologist will help you to get in the wheelchair and put your coat on but will not write anything about this in there report (happened to me twice). Also when you are moving normal on your way to the neurologist and film this and show it to the neurologist it won’t count in there final report. Unbelievable you think, it happened to me twice..
The people who are suffer from this are not the problem but how a neurologist think is the real problem. It is proven that all the people who are diagnosed with Parkinson Disease a stunning 22% seems to be misdiagnosed when they look at the brains after the patient died (in the Netherlands).
I know a man with the same condition as I have, same reaction on potassium who was diagnosed with Parkinson Disease in Germany. On day they send him to a rehab center and the physiotherapist from the rehab center send him home because he said you don’t have Parkinson Disease and I don’t have a clue what it is…. And there are thousands of people with similar problems without a diagnosis and no one helps them.
Unfortunately it seems Neurologist stop thinking when they start learning, so we have to wake them up..
DISCLAIMER: Potassium Related Periodic Parkinson Disease is a name I have made up it is non existing until now!
At 12/17/2018 the neurologist wanted to see me at it’s worst. After 24 years of dealing with attacks I know exactly when to expect the attack coming.
Normally and before the previous visits to the neurologist I take potassium because it keeps the attacks longer away. I rest before I step into my car so the attack is less severe. And I use a wheelchair to get from my car to the doctor. This way I am able to have a normal conversation with the doctor.
This time I didn’t rest and didn’t take any potassium and didn’t use the wheelchair. And see the result in the video. When I stepped out of my car after the 50 minutes drive I felt a little stiff. During the walk from my car to the elevator in the car park the attack sets in. In the hallway I sit down for a moment rest, resting always makes the attack worse. Once in the waiting room I have to sit for 20 minutes to wait for the doctor and that made the attack complete. Unfortunately that’s not on the video above because my wife needs to help me at this point. She helped me into the wheelchair and did all the talking for me. This attack was one of the heaviest attacks I ever experienced. I was not able to move my feet and legs, couldn’t sit upright, couldn’t hold my head up and I was not totally aware of the surroundings and couldn’t talk.
The neurologist didn’t know what to do, helped my wife to put my shirt and coat on and send us home. My wife lay me down in the car and drove home. It toke 3 hours before I was able to walk slowly again and 4 days before I felt relatively normal again.
If you are a neurologist and you recognize the situation as in the video and you have an idea where to look for please let me know!!