CasaHouse

I'm still in the diagnosis phase, but my cardiologist thinks I may have POTS. I normally have a low resting heart rate, 54 - 60bpm. My first Holter monitor showed my hr dips into the mid-30's when I sleep and the dr's were not concerned at all. When I'm awake and my heart rate drops in the high 40's, I get really nauseous, sweaty, etc. I'm waiting for my second monitor results now. I really don't worry about mine at night. I'm just happy when I can easily fall asleep.

Sorry I didn't see your responses until tonight. So, here's my story. Sorry it's so long. I've always had tummy issues, primarily constipation. My mom told me I had it as an infant. I remember my potty training and my mother pleading with me to go. As a toddler/small child, I had these weird visual sensations - where numbers or letters would look funny to me. I never mentioned it until I met with a doctor going over my son's case and he told me I was having visual migraines. I have them yet. Fast forward to 10 years old, and I get konked on the head at school. That afternoon, I had a seizure. A very long seizure. I had a CT scan an EEG and they found nothing. The cardiologist said I had a slight heart murmur, but that I'd grow out of it. They thought the seizure was a fluke, sent me home and told me to get in touch with the neurologist if I had another. Six months later, I had one in my sleep. They put me on phenobarbital until I was 18. I've also had severe motion sickness my entire life - the kind that requires 24 hours of rest before I feel better. At 14, I had mono. I've never felt the same. I've had fatigue since that point on. After a few months from stopping the phenobarbital, I had another seizure in my sleep. The neurologist isn't convinced I was really having seizures and I never saw him again. At 26, I have my son. At nine months old, he was dx'd with Leigh's syndrome, a mitochondrial disease. They did any blood, tests and a muscle biopsy but never found the genetic flaw that caused his illness. He died at 21 months. I met with Dr. Cohen at the Cleveland Clinic in search of answers so we could decide what to do about future children. He reviewed my son's records and my history. He thought my history was interesting but he couldn't rule in or out a mito disease in me. I had nine vials of blood drawn and they tested me for as many of the mito diseases they knew how to test me for, but found nothing. I divorced and remarried years later. My second husband and I tried having more children. I was in my 40's. I got pregnant without a problem, but miscarried at 6 weeks. We tried again a few months later and I got pregnant. I lost that baby at 20 weeks. I had placenta previa. The baby had trisomy 21 (Down). We continued trying. In all, I had seven miscarriages. Not too cool. My reproductive endocrinologist started running all sorts of tests. My Lupus readings were slightly off, but when the final test with the snake venom was done, the coagulation came back as normal. My protein s and c were off. They found I have two bad copies of the MTHFR C677T gene. I had insulin resistance and sub clinical hypothyroidism. I took metformin and was ill from it so I stopped it. The levothyroxine for the thyroid made my already low blood pressure and pulse worse. It never improved after stopping the med. that's when I went to the cardiologist and they ran the TTT and Echo. The echo was normal. After the horrible TTT, I had the flare - debilitating fatigue, sleeping 14 hours/day, almost passing out regularly, vertigo, brain fog and what I call "brain blows", where I get a split second feeling like my brain is compressing. I had raised white patches on my tongue off and on. I had some hand tremors when they prescribed pindolol. Those resolved after stopping the medicine. My joints were stiff and sore. It resolved in three months and I was back to my old base. 18 months later, I had some extreme stress, losing two close friends in an airplane accident. A few months after the accident, I had a second flare/episode with all of the same symptoms as the first time but I also developed nodules on each of my pinky finger second knuckles. I have what I think is Raynauds. I've always had problems with the cold, but it was last winter and I had a terrible time with it. My bp would drop and I'd be nauseous. All of it resolved in three months. I saw two rheumatologists who thought I had something autoimmune but it didn't fit with anything. The neurologist I saw "wished all of his patients were as healthy as you are". Of course, by the time I could get appts with these docs, I was out of the flare. I had many tests for autoimmune issues. and nothing was out of order. 12 months later, it started again. I'm a month into it. It's not as bad as the first two times, but this time my cardiologists have been more active. The one (who just joined the practice) has suggested POTS. I'm still waiting for the results of my last Holter monitor and Echo. So, I discovered this week that I do better wearing a light compression sock. No brain blows, no jump in heart rate. I walked for hours around Washington yesterday with no problems at all, which was great. I only have one pair though so today was not so good, lol. I just have had this nagging feeling since my son was diagnosed that I have a mito problem too. But the sad part is, if I do have it, there's not a lot of things I can do to treat it. At least not right now.

Hello. I've had problems with hypotension most of my life but have only had a few instances of passing out. I'm being followed by two cardiologists for the past three years. My real troubles began when I had a tilt table test in 2012. I passed out in 64 seconds and my heart stopped for ~14-18 seconds. I was given no meds to induce the syncope nor to start my heart. From that point, I had a three month episode of extreme fatigue, light-headedness, memory problems, brain fog, a feeling of my brain being compressed dozens of time each day along with various other problems. I had a second episode of this 18 months later lasting about three months. It appears I'm falling down the rabbit hole a third time now. I've been checked for various autoimmune diseases, all negative. My cardiologist suggests I may have POTS and/or complex migraines. He's starting a new round of tests - echo, holter monitor. My question is how can they diagnose POTS when the patient can't withstand a tilt table test because of OH? I've read where people have both POTS and OH, but I haven't heard of anyone with as a severe reaction to a TTT as I had. I also had a son who died from a mitochondrial disease but we never found the gene flaw he had. We are unsure as to whether I also have a mitochondrial disease.