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Everything posted by kayjay

  1. I developed high blood pressure with my first pregnancy. I now know it's because I had pots. I may have had it (or had some signs of Dysautonomia) prior to my pregnancy but the monitoring of my blood pressure was a measured problem. I wasn't diagnosed until years later (at least 10). With my second baby my blood pressure wasn't high but there was some blood pressure issue when I gave birth. Suddenly my room was full or people -I thought I was dying or passing out- something really wrong. It was 16 years ago so I don't have medical records etc. to help. If you are expecting now please know I had two pregnancies and two healthy children-. It's empowering to have a diagnosis. I can't think about it two much but had I been diagnosed k think things would have been better for me. Best wishes.
  2. Would some of you be willing to share titiles of exercise DVDs that work for you? My old ones are not good for pots. For example Jillian Michaels Shred and other DVD's with too much cardio or position changes.
  3. Thank you for responding. I think most of what you said applies to me and you are wise to have accepted what is best for you.
  4. I just had problems last night. I was at a church event (new church to us and closer to my home). Anyway long story short it was an unfamiliar group of people and everyone was standing and talking so of course I did too. I came home with a very sweaty top, massive headache and feeling like I could vomit. My blood pressure resign was 166/100 (this is once we got home and I had been sitting). It made me think of your post and the need to mention compression stockings and salt. I wasn't wearing compression and I'm sure it would have helped. I also suggest looking into a long acting Benzo. I've been on/off .05 mgs of Klonopin for years and at this point I'm ready to admit it really helps. I think it helps more than the beta blocker. The less I stand the better I feel. Somehow I'm dumb enough to try and act "normal" around people I don't know well and I'm paying for it today. If you can walk around do that as much as possible and don't be shy about sitting with your feet up. I was diagnosed in 2009 and still sometimes forget that lifestyle changes can be the most helpful.
  5. Mine is really uncomfortable to sleep in and the information is more "fun" than useful. I don't really monitor my heart rate any longer but it is much more comfortable than a strap around your torso. I think it's most useful for counting steps and I'm pretty depressed when I see how few I take most days. I'd say more fun toy and not so useful but I'm not exercising much these days. Mine isn't water proof but it might be fun for tracking exercise.
  6. Sorry for the slow response. I don't get on Dinet very often. I do not have flushing. I can't say that I never flushed but I don't think I do now. The nadolol seems to help by lowering HR and blocking some of what adrenaline does. I honestly never asked why I was put on it becuase at the time my blood pressures would get really high. My tilt table showed a heart beat increase of around 100 bpm.
  7. Your body is most likely dumping excessive adrenaline when you stand. It's compensation for the drop (that may happen so quickly you can't measure it). When I had my first tilt I had low BP and a qiuick drop in BP which almost immediately became high BP. It is not true that salt directly raises blood pressure so make sure you get enough salt, it helps you stay hydrated. I also take nadolol and Klonopin. Both help block the excess adrenaline. FYI I was diagnosed with Hyper pots in 2009. Mayo Clinic Rochester.
  8. I have a question for anyone inclined to answer. I also was diagnosed with hyperadnergic Pots. My worst symptom is chronic fatigue and I havebeen diagnosed with CFS (although it's going through a name change). Does anyone with CFS do better with exercise? I was very fit years ago and am now deconditioned for sure. Exercise makes me sick for a few days. That's a hallmark of CFS. Obviously there is a lot of overlap between POTS and CFS anyway. And to be clear by exercising I mean anything cardio. I can do mild yoga type things to a certain degree. I alos do well in a pool but again if I over do (like take 2 pool classes instead of just 1) I'm worse for days.
  9. I also was diagnosed with Hyper Pots by mayo clinic. Pheocromactoma was ruled out for me and I've been on nadolol since 2009. I was on 40 mgs at one time. Now I take 1/2 a pill every night (so approximately 10 mg)
  10. Totally agree. My son doesn't have celaic according to modern medicine but putting him on a strict gluten free diet healed all of his problems. If he accidently has any he gets sick (thankfully this has only happened a handful of times. He doenst have the genes for celiac but he had all of the symptoms and changing his diet really was a cure for him. His doctor put a diagnosis of "gluten Intolerent" into his chart. She has been his pediatrician for a long time and agrees that gluten free did the trick. The GI doctor was certain that he didn't have a problem with gluten. After 3 years of not thriving a diet change made a huge difference in less than a month. We are 1 1/2 years gluten free and prais God he is vibrant and healthy. excuse the pun but definitly "go with your gut".
  11. My vertigo was not related to movement or position. Even in bed I felt as though the room was spinning or rocking (like being sea sick) Vertigo is one of the symptoms I no longer have. I went on a 100% gluten free diet (and no oats) and I am convinced that my vertigo resolved over time due to the diet change. Your daughters are very blessed to have a mom advocating for them. My children thankfully do not have dysautonmia but they have had health issues. It's a job getting help for our kids some times. Good for you for not giving up!
  12. I'm plus one on the gluten free. I was first told to go gluten free at mayo clinic by Dr. Robert Fealy. Top neurologists are commonly ant-gluten. I understand why people are resistant, but my only regret is not doing it sooner. My second thought is provigil and focalin (adhd med) has also helped with my brain fog.
  13. Nymph- look for "exercise" shoes. I have MBT boots but I think they went out of business. Ant that claims to ingage more muscles.
  14. I was a teacher- not teaching now but most recently taught kindergarten. I'm not sure what kind of school you teach in my but last year I had two fabulous home room moms. They helped especially with holiday activities. If parent helpers are allowed I'd be selective I also suggest a regular chair on wheels if at all possible. I taught undiagnosed but I'd totally make use of compression stockings and shoes that are helpful- I do well with an unstable rocker bottom style. You can always keep a pair at school. I think the great thing about the younger ages (I'm certified K-12) is that you can often move when you need to and ususally sit when you need to. Are your students at individual desks or tables? definitely make use of job charts for the students- that's a win/win. I used lots of caddys- like a cleaning product carrier. I bought them at the dollar store and loaded them for different subjects or for each table. Hopefully that makes sense. Having a degree in exceptional education even when I was teaching " regular" Ed I seemed to end up with some children that other teachers found to be challenging. This also happens to new teachers I think. If your children don't have individual desks I came up with a great plan. I attached name tags to the tables with Velcro dots- the glue will come off at the end of the year. It was very helpful as a behavior management tool becuase I could change the seating order every day if needed or quickly move/separate students without a much disruption to the group. One year I had a class with about 7-8 undiagnosed/diagnosed learning differences and some behavior problems. It was exhausting so mixing things up really helped. That class was heavily male so I had to keep the girls from getting too exclusive. I'm sending you a pm
  15. I was very thin prior to diagnosis. I really couldn't keep weight on no matter how much I ate. Going gluten free resolved the problem for me as well as treating my pots symptoms. For me weightloss was absolutely a symptom. I would assume that excessive adrenaline would be quite a boost to the metabolism. Now I'm normal weight.
  16. I currently have 2 dogs and I love them. However they are quite a bit of trouble. I have a miniature poodle and a poodle mix at the moment. They actually are next to me as I type this. I have children and we got our poodle when our kids were young she is now 13 and I highly recommend the breed. I don't regret owing dogs for my children, however If I'm being perfectly honest, being dog-less would be better for me. My husband and I have actually discussed a future without dogs. I will love and care for the ones I have until they die, and I will miss them when they are gone (assuming I outlive them- Lord willing). Life would without them would be easier for sure. We had a rottie and I adored her. A year after her death I would still occasionally find fur when I was cleaning. My dogs don't shed but they certainly track in dirt. If you aren't cleaning up pet hair you have to take them to the groomer. We sometimes clip them ourselves but the hair in the ears is hard to deal with and I'm not keen on clipping nails- especially with black nails it's hard to know where to clip. I hurt my dog once by cutting a nail too short. She got over it but I havent. ? I'm allergic to cats but always had pets as a child. It seemed to me that a house without a dog isn't really a home. I've changed my mind. They always need something, a bath, a walk, food, water, wormer. They also bark sometimes and that's frustrating if I'm resting or have a headache. So my advice, if you aren't 100% sure consider waiting. My dogs are cute, fun, cuddly, and a lot of work. If I was lonely I'd feel differently, but this morning I was up at 5:30 to let them out. Yesterday one of my dogs vomited on the sofa. We don't have any housebreaking issues but if I leave the house or want to go anywhere the dogs are a consideration. For years I didn't leave my house that much. Now when I leave its a hassle to consider the dogs' needs. They can't be a little neglected for the day like an independent cat. So as horrible as it sounds- most of the time I regret having dogs. I've owned 4 different dogs (never more than 2 at a time) over the course of my illness and more than 10-15 dogs over my lifetime. Predicting personality is almost impossible. One of the worst dogs I've ever known is a Labradodle. She is a hyper nightmare. Our Rottie was lovely. Our poodle mix is a timid chicken and behaves more like a cat. Our poodle is super smart and basically the perfect dog. We had a Doberman that was neurotic. All dogs with the same owner in the same environment yet very different levels of "work" in terms of training and ownership. Another poster mentioned the care of an older dog. My poodle has lost most of her hearing an this point and has become more of a barker. Again now that I have my dogs I wouldn't trade them for anything, but my life would be easier without them. We are currently dog sitting a Bouviers de Flanders. He is a delightful clown of a dog- but completely disgusting. He will eat anything- and I mean ANYTHING. I will be happy when he goes home. Sorry for my long rant- if you do purchase a dog I'd also recommend a female. I've found the house breaking to be easier. Also as a general rule small dogs live longer. We don't own a large dog now because I get very attached and couldn't take the pain of losing another "friend". Our Doberman and Rottie both died young.
  17. Last time my D was checked it was over 100- intially it was very low and so I started suppliments. I would caution anyone who takes vitamins to follow up after a few months with a recheck. I am gluten free and no longer have IBS issues. As a result I belive it was very easy for my body to absorb D once my GI tract healed. Too much d can cause cardiac problems by increasing calcium levels. Incidentally my son's nephrologist told me last week that he is seeing kids with problems from too much D. I have to look for vitamins without it. I am convinced that when my D was low my fibromyalgia pain was much worse. Just proceed with caution. I don't avoid the sun and I no longer have IBS issues. In a very short amount of time my levels went from low to dangerous.
  18. I used to have vertigo. I don't anymore. I personally belive that my migraines and vertigo resolved as a result of eliminating gluten entirely from my diet.
  19. I'm sport of hijacking this post- can you please tell me what symptoms this drug helps?
  20. I too read this. I am %100 percent gluten free- From lip products, shampoo, medications- everything. I can't remeber if I went g free in 2009 or 2010. Now I can have dairy and other foods with no issue at all. I wanted to mention my food story because it's less restrictive. When I read about Ella, I wondered what was making her feel better and I wondered if her extreme diet didn't need to be so extreme to have results. For example if I had gone dairy free and gluten free initially I would have felt better and assumed that I needed to stay dairy free. In my case, gluten was the culprit and once my gut healed I was able to eat lots of other foods with no problem. It's really hard to be on a very restrictive diet and wouldn't want someone to give up on gluten free too soon. Thanks so much for sharing this! Diet has helped me more than anything else IMO.
  21. Have you ever broken your nose of have a deviated septum? I ask because once I had mine fixed I basically stopped having sinus problems. I do have allergies and stay on top of them which is also helpful.
  22. Timely topic for me. Yaz birth control made my dysautomonia so bad that I finally got a proper diagnosis. I was put on Kariva by Mayo clinic in 2009 and had no problems with it. I also have endometriosis. I stopped taking it last month to see how I did without it- I can tell you I'm absolutely going back to it. It's a generic of mircette? Not sure how it's spelled. mayo had me use Kariva also to suppress my period. I'd toss out the inactive pills for 3 months and begin a new pack. Edit to add- for me it's not birth control. I take it as a medication. I'm totally going back on this Sunday.
  23. This is me too. Gluten free has not cured me but it's been the best treatment.
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