đRead my story about my 5 years with POTS.  Super personal and in-depth story about my search for answers. I am not sharing this to get sympathy but I tell my story so others may find some leads and a sense of not being alone with this illness.  I also share how my treatment is today.Â
My 5 years of POTS
I think my POTS symptoms really got worse around 2015, when I was 25. My inflammation was at its worst and I was really sick at that time from ankylosing spondylitis and migraines. I can remember I had an airway infection for almost a week, I lost my voice and was coughing a lot. My throat was dry and itchy. The type of fly infection we all have some times. It could be that that started my POTS symptoms but I must say that I have always had trouble with low blood pressure and palpitations. Sulfites gives a reaction like that too and I know through DNA testing that my body cannot process sulfites well. I cannot exactly pinpoint when POTS started. Along with the POTS diagnoses came the CFS/ME diagnosis. It might be that my POTS/ME is a mitochondrial problem but the researchers are not done with examining my cells yet.Â
Symptoms
My symptoms are light headedness, breathlessness, air hunger, palpitations, fatigue every day, brain fog, dizziness, , deep achy pain in muscles all day every day, flu like feeling, abnormal temperatures, warmth and tingling sensations, digestive issues, hormonal issues, blurry vision, tremors, weakness, problems with wordfinding and speaking and brain for, memory issues and concentration issues and did I mention brain fog?
The horror
The horror of POTS is that it makes me feel like I am balancing on the edge of life and death a lot of the time. Not enough blood reaches my brain to control the rest of my body. I feel weak, lifeless, dumb, stupid and anxious. Let me say first that POTS is not caused by anxiety. Studies show that a people with POTS do not have more anxiety than ânormalâ people. But when you feel you are about to faint every moment, it brings along a certain worry. A worry like:  Can I walk that long and stand that long in the store or at an event? A worry like:  Can I speak out the words that I want to say out loud? Can I drive my car safely? A worry if I donât delete any important files from my computer during brain fog moments. The blanket of clouds can overrule me every moment of the day. And there is no escape from it. The only thing I can do is rest, pace my activities and make sure I am safe. I have been in the car while having pre-syncope and I must say that I donât want that ever again. It is as dangerous as driving a car drunk. A normal reaction for me was to hide my symptoms and not mention it to others because I was scared everybody would say it is just anxiety and stress. I didnât feel like I was super anxious but I still considered it as a possibility but I just didnât want them to say that to me. So, that was a hard time to figure out what was going on. I thought I was losing it and I just couldnât understand. Now I know what is happening and still feel afraid to suddenly pass out while standing. I never really actually fainted though but I have been super close. Now I know what to do and that alone is already a big improvement. In the past, my gut feeling told me to lie down and that worked every time and now after 5 years with POTS I know why.Â
My legs donât go as red and I donât faint but my heartrate can reach 168 during a shower and my average heartrate during a shower is 140. Thatâs pretty high and feels like a workout. After showering I am exhausted. When I stand still itâs an average of 110-130 and on hot days itâs even higher. Luckily we donât have a tropical climate in Holland but the summers can be terrible.
My story on how I found out about having POTS is similar as my CFS/ME story. You can read it here âŹď¸
Mitochondrial research before knowing about POTS/ME
Because I was looking for the root cause of my inflamed SI joints and my aching head, I had done a commercial DNA test in America. By that time, I already been to so many doctors and nobody had a clue what was going on, that I decided to spend lots of money on my own testing. I could do that because I had to sell my house and the positive thing was that I sold it with profit. I had to send my saliva to America and after 6 weeks the results came back as a code; a raw file. I had to send this raw file to a guy here in Holland to make it into a readable document. This took another 6 weeks. The waiting was tedious. But it was worth it! It brought back a lot of information and it was a bit overwhelming to understand it al. Some genes were marked in red, orange or yellow. It indicated the influence of the mutation on the body, so the test said. Days and nights after researching the internet on specific genes, I found a lead to mitochondrial diseases. Those genes: mt-ND2 and mt-ND5 were listed in orange. This looked to me, that those could have a very negative effect on my health. I researched more about mitochondrial diseases and A LOT of symptoms were listed that I also suffer from. This was a big discovery for me because maybe all my problems came from a faulty metabolism?! And also, maybe, this could be a hereditary problem which means that my mom and twin brother could have the same issue?! They were also experiencing debilitating symptoms like fatigue and muscle aches and brain fog. I thought I had seen the light!Â
I scraped all the information together and I also had to do extra testing like an OAT. That stands for âorganic acid testâ. They check the urine for certain metabolites and it says something about your metabolism. Our test, I also got one for my brother and mom, showed some abnormalities in fatty acid metabolism. I was super happy to find these results. I made a showcase with all the test results and all the health problems we were experiencing and I had to convince my general practitioner to refer me. I was super tensed about it but it needed to be done. I had the same general practitioner as my mom and brother so he also checked their statuses and I managed to get a referral to THE specialist hospital in mitochondrial diseases.Â
Waiting and intake
The waiting time again was very wearing, a couple months before I had the first appointment. The doctor was very kind and he ordered a lot of testing right from the first appointment. That made me feel unreal that this was so easy at this point! I was ready to put up a fight again with the doctors to get what I wanted but it was not necessary. After seeing so many doctors and telling my story for the 1000sth of time, I was in a fighting mode. I had to wait 2 months to get the results from the DNA testing and OAT.Â
Results DNA testing
He came back with positive results. He also found the genes that my commercial test was showing but he also found one mutation that they had only seen in one male before. This male was not experiencing sickness. This was reason for further testing and I had to do a muscle and skin biopsy to check the mitochondria under the microscope. The OAT test didnât show anything that was very unusual according to the doctor and the mutation that I found was nothing to worry about âitâs like you have blond hair and I have brown hair, the metabolism is just different but it doesnât make you sick.â At that point I was pretty annoyed with the WWW⌠Why does internet tell me it could be making me sick?! But alright, I have got to trust this doctor over the internet even though it was hard for me to subside it, haha!Â
Muscle biopsy
The results of the muscle biopsy came back with positive results. It showed 20% abnormal mitochondria. Which is not that much, but they know basically nothing about this rare mutation so it could still be that that is making me sick. The doctor could not rule it out yet so my family had to help. That made me very happy because I thought they would definitely find the mutated genes in my brotherâs or momâs urine but it was one big disappointment. I really wanted to find the reason why we all had so many health problems that were so similar but I had reached a dead end.  They didnât find the mutated genes in my relatives urine.Â
Single cell sorting
Next step was single cell sorting. The lab grows the abnormal cells to a big clump and does all sorts of tests on them to see how they function. It was supposed to be done in 6 months but it has now been a year and I am still waiting for the results. The doctor told me to keep on searching for the right treatment so I would not rust. âResting rustsâ. He referred me to the Chronic fatigue center in Amsterdam. CFS/ME and mito are very similar and are treated the same way basically.  He said itâs very difficult to show mitochondrial disease and that I might had to accept to never really find out what the real cause is. So, I made an appointment with the CFS/ME center eventually. This was an expensive intake because in Holland there is no compensation for CFS/ME treatments. I think I have spend a couple thousands by now for all the testing.Â
MRI to rule out Multiple sclerosis
Before spending lots of money again, I wanted to make sure it was not MS. Certain symptoms were also signs of MS like; fatigue, warmth and tingling sensations, weakness, concentration and speaking problems etc. âI went to the neurologist and she ordered an MRI to confirm if it was MS or not. The MRI showed nothing and MS was ruled out. This was good but also very annoying because now I still didnât know anything and I had to spend more money on the intake at the CFS/ME center.Â
Intake CFS/ME center Amsterdam
I didnât had to wait long for the first intake. Because of the corona pandemic I had an intake by phone and later on, I also had a physical examination in their practice. The doctor said my issues could come from ME or also from POTS so he wanted to do the tilt table test. The hand power test was done instead of the two-day bike test. This was just to exhausting for most people and it was unnecessary he said. I had to do an eye test and a concentration test. đ
POTS
I had heard of POTS in the social media groups but it never got me to investigate it further. It was just something that was unlikely for me to have but after reading more about it, it sounded very accurate to what I was experiencing. Online they explained situations where POTS people have the most complaints and that made me realize later, that I had the most complaints in those same situations also! So, I started to analyze my symptoms even better and I bought Hr monitors. I did the poor manâs table test from my own bed and my Hr monitor showed 30+ extra beats from laying to standing. And this did not happen once, it happened every time and sometimes even 40+ or 50+ beats. This diagnose suited me before I even got it from the doctor. The official TTT showed a 35+ extra beats and a lower heart blood volume of 40% in standing position. I was diagnosed with POTS.Â
CFS/ME
The results from the hand muscles showed a poor strength and slow recovery. I started with 19 kilo and ended with 14 kilo the first round and after one hour the second round I started with 18 and ended with 12 kilo. The normal starting point for a woman of my age is 25 kilo to begin with. You see why I have trouble opening pots an cans ?!Â
Then the concentration test showed a very slow focus and it scaled me at an age of 70-80 year old person. Such a poor ability to focus, it shocked me on one side but on the other⌠it took a lot of effort to drive my car or read pages so it also felt ok to have this on paper. The doctors see this all the time and I was not going crazy. Â
Treatments
The doctor started the treatment with 2gr of carnitine and alpha-lipoic acid. ALA gave me terrible headaches and I had to quit. I thought it had to do with my CBS gene mutations, I have trouble metabolizing sulfur and ALA is a sulfur product. So, I switched to 200mg ubiquinol as a detoxifier in stead of ALA. After a couple of weeks, I noticed nothing much and we started Low dose Naltrexoneđ§Ş. I will do a video-vlog about my startup with LDN because that is a subject I want do dive deeper in but itâs to much to share all of that on this page. You can find it on my you tube in the future! I am currently on 2,75 mg and canât say that I feel the benefits yet. It sounds like a miracle drugs if you read the stories online but I donât seem to have those effects yet.. maybe it will come later⌠I will push through. To treat POTS, I have bought some compression stockings, to the waist up. I really had to get used to them because I have a very sensitive belly and I donât like the tightness from the leggings. Some days I just canât wear them. My bed is lifted 10 cm at my heads-end. This is supposed to train the body against gravity so the blood vessels stay strong. I eat way more salt then I did before and I make my own capsules. That will also be a video in the future. I am implementing all these treatments as good as I can but nothing is really working for me yet. At least, I do not feel I am there yet. It might be that without the treatment I would feel worse. My heart keeps racing and I still feel faint and weak all the time. POTS and CFS/ME are a horrible beast taking over my life.
After the diagnoses
I have found some ease in these diagnoses in the sense of being recognized and knowing I am not the only one experiencing this. It could still be that my root cause is from mis formed or misfunctioning mitochondria, then it will be called mitochondrial myopathy but CFS/ME is also thought of a mitochondrial dysfunction in some studies. Some studies show inflammation of the brain/nerves system.Â
Maybe I have it because I had the Epstein Barr virus?! Maybe all my symptoms come from my dirty genes like MTHFR, COMT, BHMT and CBS?!
I have to stay patient and wait for the results of the Radboud hospital Nijmegen, for the final decision on the mitochondria.Â
In the end it doesnât matter how the beast is called, the only thing I really want is to find a treatment that works and to make my life better and nicer again. In the meantime I try to fulfill my life with art, food, dogs, my loved ones and try to pace myself every day and I hope that someone will catch me if I faint or step on my own toes because of my clumsiness and jelly legs.Â
If you want to hear my story in person you can watch the video here âŹď¸
If you liked reading this page, you might also like my depression story. You can read it here âŹď¸