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“It’s not POTS!” Mom

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About “It’s not POTS!” Mom

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  1. Hi! Your infusions if LR caught my attn and I want to share the quick version of my story..... I am a mom of four who since I was a teenager had symptoms of PCS but thought it was normal. 3 years after my fourth c-section and not pregnant I began having more of the textbook PCS symptoms. They did an ultrasound and did not tell me that they saw varicose veins around my uterus. Fast forward two years and I’m a complete medical mystery that the only label they can give is POTS. I am medical and so is my husband. I saw every specialty that was available. My BP went up when I needed fluids. If my Potassium was even 3.4, I would have severe bradycardia until they corrected the level. I would be tachy when standing, but never stayed that way. My body had reached a point of blood pooling in my pelvis that I could not function. Lying down, I felt amazing. My heart was so stressed that I would present with episodes of bradycardia 20’s to 40’s. Almost constantly had chest pain unless I had just received fluids. The low potassium was from cystitis due to the amount of pelvic varicose veins that caused everything I drank to immediately be peed out. I was told to eat lots of salt, and drink lots of water. It did nothing. I was incapacitated with four young kids. 4-11 y/o for 9 mo. They recommended cardiac rehab for POTS. I didn’t meet the typical POTS criteria but began anyways. I could never stay strong long enough due to the lack of blood flow to my heart and brain. I would have to think about the ages of my children, couldn’t remember how old I was, would have to pull over at times on the highway when I was lightheaded while driving, would squat when out in public to keep from passing out. It was a true nightmare to not know why. I discovered at one of my hospitalizations that 2 liters of LR made me feel normal again. First, my lower abdomen would become bloated, then I would feel it hit my brain, it would actually tingle, and I could think clearly, speak quickly, feel witty, and normal again. Teasing my family and laughing again. Somehow, IV Lactated Ringers stayed intravascularly for about 2 days. It would be a slippery slope downhill after that. So, I became a regular at the local ER for fluids, at times not knowing my heart rate was in the 30’s. I was told I was crazy, asked why I had so many needle sticks (as if I was a drug abuser), told to get a massage and acupuncture and so much more. I applied to be seen at Stanford and The Mayo Clinic and was turned down. Finally, I read an article of a male who had the same symptoms as I did and he had pelvic varicose veins as well as May-Thurner Syndrome. I immediately called my ob and asked him to look at the ultrasound done 2 years prior and he told me there were visible varicose veins. These should not be visible unless you are having an internal ultrasound with the Valsalva maneuver. They collapse when you are supine. This led to the correct diagnosis. I did have May-Thurner but my iliac vein was not completely occluded yet. At the time of my first venogram, the camera (IVUS), showed that it was 1mm. A 14 mm stent was placed. They also coiled and embolized both backflowing Ovarian veins. The last part was sclerosing nests of pelvic varicose veins. I had relief for 2 months. Then the symptoms returned due to altered blood flow pathways forming a loop directing blood flow back to the pelvic varicose veins and pooling instead of up to my heart and brain. We found the guru of this problem and she did another venogram and shut down that pathway as well as many more pelvic floor varicose veins. They can only use so much sclerosant in one go. I am three weeks out from that and doing well. Not needing IVFs. I still need at least one, likely two more venograms to sclerose the many pelvic varices still remaining. There are so many that blood still pools. I don’t require IV fluids, but can function at about 75% now. I get tired.... This was an extremely disconcerting experience until we found answers. I never had the chronic pelvic pain that most women have. I had pain, but chalked it up to a couple of hernias I need to have repaired. I am a small person who carried 4 babies and that is how the doctor said this happens. I am also very veiny and have many valves. My baseline prior to this was akin to the energizer bunny. Always working on something, conquering the next thing, chasing kids, etc. I look forward to being at baseline again. I need to tell my story because so many women suffer from this and are told they are depressed. I am the opposite of depressed! By the end of the first 9 months I was situationally depressed, but give me some LR and I was back to baseline! No one could figure it out. I was asked if I was bipolar? No. I have ADHD, but love having the ability to hyperfocus. It also helps me understand my kids who have it too. I hope this helps someone. Don’t settle for POTS as a diagnosis. It is a cluster of symptoms for which there is a cause. Few doctors understand the causes. MALS, PCS, EDS, Nutcracker syndrome, etc. There are many reasons and finding the reason is a big undertaking. In my opinion, PCS is overlooked. I remember near the beginning asking my regular cardiologist if pelvic congestion syndrome could cause my weird symptoms and she laughed and said that we all have those issues as we get older. I’m 41, 105 lbs, and was active and healthy prior to this. Not your typical patient with three different cardiologists because they couldn’t figure it out. Don’t stop asking questions, be cautious with the exercise if you are hypovolemic. I ended up losing hair and developing stress vitiligo from that. One needs adequate blood volume to exercise. I hope they have all the answers and the next venogram or two will finish off these life sucking pelvic varices. I’m ready to be able to hike some mountains with my four kids! As a side note, I do not have leg varicose veins, am homozygous for MTHFR, and have a history of superficial blood clots so was unable to ever try birth control or hormones as a treatment. Let me know how your journey goes........it has definitely been quite the road for me and my family. It’s a good thing I am doggedly stubborn and determined. I hope for answers and the best for all who are suffering. Sincerely, Misdiagnosed, mischaracterized, and once again mischievous “It’s not POTS!” Mom.
  2. Potsdad, I am a mom of four who since I was a teenager had symptoms of PCS but thought it was normal. 3 years after my fourth c-section and not pregnant I began having more of the textbook PCS symptoms. They did an ultrasound and did not tell me that they saw varicose veins around my uterus. Fast forward two years and I’m a complete medical mystery that the only label they can give is POTS. I am medical and so is my husband. I saw every specialty that was available. My body had reached a point of blood pooling in the pelvis that I could not function. Lying down, I felt amazing. My heart was so stressed that I would present with episodes of bradycardia 20’s to 40’s. That stemmed from a slightly low potassium from cystitis that caused everything I drank to immediately be peed out. I was told to eat lots of salt, and drink lots of water. It did nothing. I was incapacitated with four young kids. 4-11 y/o for 9 mo. They recommended cardiac rehab for POTS. I didn’t meet the typical POTS criteria but began anyways. Like your daughter, I could never stay strong long enough due to the lack of blood flow to my heart and brain. I would have to think about the ages of my children, couldn’t remember how old I was, would have to pull over at times on the highway when I was lightheaded while sitting, would squat when out in public to keep from passing out. It was a true nightmare to not know why. I discovered in one one of my hospitalizations that 2 liters of LR made me feel normal again. First, my lower abdomen would become bloated, then I would feel it hit my brain as I could think clearly, speak quickly, feel witty, and normal again. Somehow, IV Lactated Ringers stayed intravascularly for about 2 days. It would be a slippery slope downhill after that. So, I became a regular at the local ER for fluids, at times not knowing my heart rate was in the 30’s. I was told I was crazy, asked why I had so many needle sticks (as if I was a drug abuser), told to get a massage and acupuncture and so much more. I applied to be seen at Stanford and The Mayo Clinic and was turned down. Finally, I read ah article of a male who had the same symptoms as I did and he had pelvic varicose veins as well as May-Thurner Syndrome. I immediately called my ob and asked him to look at the ultrasound done 2 years prior and he told me there were visible varicose veins. These should not be visible unless you are having an internal ultrasound with the Valsalva maneuver. They collapse when you are supine. This led to the correct diagnosis. I did have May-Thurner but my iliac vein was not completely occluded yet. At the time of my first venogram, the camera (IVUS), showed that it was 1mm. A 14 mm stent was placed. They also coiled and embolized both Ovarian veins. The last part was sclerosing nests of pelvic varicose veins. I had relief for 2 months. Then the symptoms returned due to altered blood flow pathways forming a loop directing blood flow back down into my legs instead of up to my heart and brain. We found the guru of this problem in our city and she did another venogram and shut down that pathway as well as many more pelvic floor varicose veins. They can only use so much sclerosant in one go. I am three weeks out from that and doing well. Not needing IVFs. I still need at least one, likely two more venograms to sclerose the many pelvic varices still remaining. There are so many that blood still pools. I don’t require IV fluids, but can function at about 75% now. I get tired.... This was an extremely disconcerting experience until we found answers. I never had the chronic pelvic pain that most women have. I had pain, but chalked it up to a couple of hernias I need to have repaired. I am a small person who carried 4 babies and that is how the doctor said this happens. I am also very veiny and have many valves. My previous baseline was as the energizer bunny. Always working on something, conquering the next thing, chasing kids, etc. I look forward to being at baseline again. I need to tell my story because so many women suffer from this and are told they are depressed. I am the opposite of depressed! By the end of the first 9 months I was situationally depressed, but give me some LR and I was back to baseline! No one could figure it out. I was asked if I was bipolar? No. I have ADHD, but love having the ability to hyperfocus. It also helps me understand my kids who have it too. I hope this helps someone. Don’t settle for POTS as a diagnosis. It is a cluster of symptoms for which there is a cause. Few doctors understand the causes. MALS, PCS, EDS, Nutcracker syndrome, etc. There are many reasons and finding the reason is a big undertaking. PCS is overlooked, in my opinion. I remember near the beginning asking my regular cardiologist of pelvic congestion syndrome could cause my weird symptoms and she laughed and said that we all have those issues as we get older. I’m 41, 105 lbs, and was active and healthy prior to this. Not your typical patient with three different cardiologists because they couldn’t figure it out. Don’t stop asking questions, be cautious with the exercise if she is hypovolemic. I ended up losing hair and developing stress vitiligo from that. One needs adequate blood volume to exercise. I hope they have all the answers and the next venogram or two will finish off these life sucking pelvic varices. I’m ready to be able to hike some mountains with my four kids! As a side note, I do not have leg varicose veins, am homozygous for MTHFR, and have a history of superficial blood clots so was unable to ever try birth control or hormones as a treatment. Let me know how your journey goes........it has definitely been quite the road for me and my family. It’s a good thing I am doggedly stubborn and determined. I hope the best for your daughter and family. Sincerely, Misdiagnosed, mischaracterized, and mischievous “It’s not POTS!” Mom.
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