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kayjay

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Everything posted by kayjay

  1. I was undiagnosed when I had my children so I had to give this some thought. I would ask about saline- often during labor you are only permitted to suck on ice chips. Maybe you should ask about staying hydrated. I also found that the epidural lowered my BP. You may want to discuss all possible medications. I had pitocin which is pretty common. My big question would probably be about anesthesia in case you have an unplanned c-section. Also I was induced with my first child. It might be an option for you. I was on bed rest and having a set induction date made things more manageable.
  2. Heat does a number on me. I actually adjust my meds a bit seasonally. I don't know if that is something you could consider asking your doctors about. I suspect many of us have more pooling in the summer heat. I was going to second the cooling vest idea but it sounds like it's not for you so I have 3 other suggestions. I've actually been able to attend little league games in mid summer with a silly little fan/squirt bottle my husband found a Walmart. It has a neck strap and runs on a battery. It was super cheap and really helpful. I also have bandana type things that were recommend by another member here. They are filled with some type of gel beads that absorb water. When you wear it around your neck it has a cooling action. If you are interested I can try to find out the brand name. I have a pink one and a blue one My third little trick is a wide brimmed white hat that has a gel filled ring around the inside. When you soak to in water it can keep your head cooler.
  3. I am going to plus one on the Mayo suggestion. I've only been to the Rochester and Florida locations, but they both have been very helpful for me. Mayo is very inconvenient for me because I'm in the north east. I went at the urging of my local doctors. I can't overemphasize how much Mayo helped me. Good luck!
  4. Sue- any tips for gluten free bread machine recipes? Mine keeps making bricks. Also Udi's bagels are pretty good also. Tinkenyada (spelling?) makes really good lasagna noodles. Hubby can't tell the difference.
  5. I'm so sorry to read this TCP. I am getting better. Or at least doing better. It's been a very slow process for me but finally in 2009 I was able to get to the Mayo Clinic and get diagnosed. I hope that you are able to make some positive progress. Ive been sick for at least 15 year but only diagnosed for 5. Progress has been very slow and although I'm not expecting to be cured, I have a better quality of life today than I did 5 years ago.
  6. best thing I've done for my health. I went gluten free on my doctor's suggestion. It was really hard for me mentally so I did get genetic testing. I do not have the IBS I was diagnosed with. It's gluten. I am 100% gluten free. It took me several months to notice a difference. It's been about 4 years for me. I only wish I had done it sooner.
  7. A beta blocker has been the most effective for me for blocking adrenalin. I made out ok on cymbalta but it wasn't prescribed for pots. It was for fibro pain. I tried Wellbutrin and would never take it again. Sorry I can't help on the Effexor. I do suggest that if you try one of these drugs to start out at the lowest possible dose.
  8. First of all congratulations! I had two healthy babies with undiagnosed POTS. I did Pilates after my children were born. It was ideal. Pilates and walking are really the best suggestions. I have Pilates DVDs. It was easy to take 20 mins when my children were napping and to a quick mat workout. I'm guessing maybe this is your first baby? You may want to have a plan for very basic walking or things you can do at home while the two of you adjust to sleep/feeding schedules. It's a very exciting time. I know it's scary, but it's really a blessing that you have a diagnosis and will know what to do.
  9. Not sure of I'm answering your question about D, but it is a fat soluble vitamin and it's not uncommon for people with gi issues to be deficient for that reason. It's really more of a hormone that can be made by our liver. When you don't feel well it's hard to get enough sunshine. I was deficient in D and other nutrients when I had "IBS". Of course my IBS was a problem with gluten. When my D was low I had more fibro pain, and I think my hair was shedding too much. deficiency can also increase migraine pain, cause weight gain, and affect sleep. It's one thing that you can easily overdo with supplementation so I'd suggest a blood test before taking too much. If you do supplement you want the D3 form not D2.
  10. I should clarify- yes it is normal for ALL people to have blood pressure spikes. Not just hyper pots people. It's not healthy to have 24 hour a day high blood pressure. It essentially wears out organs and can damage vessels. We all are designed (human beings, not just pots people) to have fluctuations in our blood pressure. It's pretty Interesting actually to see 24hour ambulatory blood pressure results graphed. In a person (like me) who doesn't have a high blood pressure problem just hyper pots, my BP drops nice and low when I'm sleeping. If a person has high blood pressure from renal artery stenosis or something that causes essential hypertension, they will also have high blood pressure when they are resting. So I'm beating a dead horse I suppose, I just don't want anyone to have needless anxiety and fear. I'm sure we all have lots of other things to worry about
  11. Also- tachy, I wouldn't want you to think that my opinion is biased on MY opinion if you know what I mean. I continue to be a mayo clinic patient and have local doctors who are experts in blood pressure. I'm just repeating what my neurologist(s) cardiologist(s) and general internist have told me. It's always wise to rest and retake in 15 mins if you've had an unusually high blood pressure reading. Also know the signs of a stroke. F.A.S.T. Face drooping. Is one side of the face numb? Can the person smile? Arm weakness. Ask the person to raise their arms. Does one arm drift downward or feel numb Speech difficulty. Is speech slurred? Is it hard to understand the person or are they unable to speak? Time to call 911. If any of these symptoms are present get the person to a hospital.
  12. No June- but for those of us with Dysautonomia, episodic high blood pressure is par for the course. POTS can be very scary and I'm sure none of us want to scare other people needlessly. It's very important to realize that no one's blood pressure remains the same thought the day. Stress, activity, and many other factors cause blood pressure spikes in completely healthy people. I used the examples of athletes spiking 400/250+ blood pressures as an example to show it's not deadly. Our bodies are made to handle the fluctuations. I've no doubt that if a person was being chased by a tiger they would spike high blood pressures. We can have that physical response without the tiger and without running . Episodic high blood pressure isn't what causes strokes. I am blessed with doctors who are experts in dysautonomia and blood pressure. Most of us lay people don't really have a good understanding of appropriate blood pressure fluctuations. Iwould encourage anyone with high blood pressure to speak to a doctor well versed in autonomic dysfunction. It can be very comforting. According to most of what's online I should have had a stroke at some point in the past 15 years I've had hyper pots. Sustained high blood pressure is a completely different animal than the spikes many of us deal with. Conventional medical blanket statements often do not apply to us.
  13. Also -June just in case you might also want to get parameters from your doctor to make sure you have a comfort zone. Just incase you ever have a spike. It's completely normal to have Bp spikes- it's just not normal for it to happen without exertion.... Unless you have POTS. I just realized your children have pots. My teen son just had a Bp reading of 146/90 at the doctors. They waited about 15 min and retook it. Totally normal (actually low) with the second reading.
  14. Hoping to make you feel better- your blood pressure is nothing to worry about unless it is sustained for a long period of time. You'd be amazed at the high blood pressure spikes professional weight lifters and other athletes experience. At this point a spike of 160/100 doesn't worry me a bit but the first few times it happened I was very scared. I have experienced exactly what you described. I also have had vision issues and Bp with migraines. Could you have had a "silent" migraine. I don't mean to sound as if I'm belittling your experience. It is scary but resting was the right thing to do. If your blood pressure stays high for a prolonged period when you are resting, you should call your doctor. Also your numbers are no where near "stoke level". It might be a good idea to talk with your cardiologists. I've had bps over 200/170+. Talking to my doctor about it really comforted me.
  15. I agree with the 3 months thing...at least. I have been gluten free for several years and highly recomend giving it a try but it is by no means a "quick fix".
  16. I have have fine straight hair and totally hear you on the morning shower thing. I do have a bit of a solution. My husband installed a shower head with a hose so I can wash my hair seated. I used to have a shower seat but it was ugly, bulky, and generally annoying. A few weeks ago I bought a Rubbermaid stool at Target. It was with the cleaning products. It suits my needs perfectly. I also got a shower rack thingy (sorry don't know what to call it). I hung it over the part of the shower that turns it on. (Again so sorry for my lack of "good" words). I'm able to sit on my stool which is almost cute and has a non slip type top. I use the sprayer and have my products at eye level (seated). Easy peasy. Wish I had figured it out sooner. It can't hold water or grow mold. I also dry my hair seated. If you want to know what specifically I'm using send me a private email. I can look everything up on amazon so you can see what I mean. I've also been known to skip the shower opting for a bath instead with dry shampoo and an updo.
  17. I take extra c. It's water soluble so I'm not worried about having too much. If you can get it from food sources that's aways the best option. Getting a virus on top of a Chronic illness certainly is no fun. I don't get sick often but when I do it's pretty bad. Make sure you keep up your salts and fluids. I tend to drink chicken broth when I'm sick. Feel better.
  18. I agree with Kitt- absolutely call and talk to Mayo. I'm not claiming to be a Mayo expert- but I've been to Rochester 3 times and will be going to Jacksonville for my 5th Mayo visit. My only mayo regret is that I didn't go sooner.
  19. First of all "YAY YOU!" For going. I know it's hard but you don't want to quit life. Yes- excitement and anxiety can feel the same. My daughter does not have pots or autism. She was in a musical in her highschool recently and felt terrible the nights leading up to opening night. What she felt was normal but she was getting worried and stressed. I explained to her that she wasn't feeling fear or anxiety. She was excited with "butterflies in her stomach" . Reframing her feelings as a positive really helped her. She had a wonderful time and can't wait to try out for next years production. Any time you can take a positive view I would encourage you to do so. Excitement is better than anxiety- so think of yourself as excited! Feelings of excitement can reminind us of how good life can be. I hope I made sense and I am proud of you for putting yourself in social situations. I'm fighting the inclination to become a hermit because it's easier. We should all live our lives as best we can even when we feel nervous!
  20. Natops- that doesn't sound right. mayo doesn't operate like a normal hospital. The doctors get a salary and do not get paid more for seeing more patients. I've never spent less than an hour and a half with my mayo doctors. EACH and every time. I think you should call someone and complain. That's really unusual and not ok!
  21. I don't have too much to add except that I 100% recommend a mayo trip. I've been to Rochester 3 times and this year went to a satellite location just because it was easier traveling. I am not "cured" but mayo by far was the most helpful, worth while medical intervention I've had. I left with a clear definitive diagnosis and a plan. My first visit was 5 years ago and I credit them with enabling me to have a better quality of life.
  22. Forgot to mention- if your blood pressures are lower when resting- that's a good sign. If these numbers are sustained when sitting or resting you should consider it an emergency. Also now I'm being a total nag- but if you are up for it please check in to let us know you are ok.
  23. I've had higher numbers for 15 years and have not stroked yet. If this is new for you you should at least call your doctor. You should get it checked out but those numbers are not foreign to me. If you do have hyper pots a beta blocker can be really helpful. It also may be helpful to get a 24hour blood pressure cuff. It was good to kow that my BP drops when I'm sleeping. It's not the same as having primary hypertension. Two other thoughts- my BP has been the highest when my salt was too low. Once my potassium got high - decreasing my sodium. That was really horrible. It's pretty easy to get a check on your soduim/potassium. Also as mentioned on another thread you might want to consider seeing an endocronogist to rule out adrenal tumors that cause blood pressure spikes. Hope you are feeling better soon. It's miserable and scary.
  24. Anyone would have a high stress response during a tilt table I would think. I had mine at mayo. Where were you tested Krystal?
  25. Hyper pots is pretty uncommon but pheos are rare. I just mentioned it because any hyper pots person with episodic high blood press that I know of had adrenal tumors ruled out. I think headaches are common for pots but I had pretty horrible headaches.
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