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roelse

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Everything posted by roelse

  1. First, I will pray for you tonight and when I think of you. Second, can you put your son in a daycare temporarily, till you get through this hump? Third, could you take an incomplete on your classes? I've had to do that before. I know it would be terrible when you're so close to graduating. I feel so bad for you. I wish I lived closer so I could help you with your baby as I'm doing good right now. I know the above thoughts are not what you want to hear but sometimes it's better to step back a bit so that you don't lose it all. I had to quit my part-time job last year and also had to drop a couple classes because of my POTS. I freaked out a couple times when I had some bad spells and couldn't even talk but I got through it. I think my fear was more that I wouldn't get through the spell. Also, if I may say so, the panic-attack like feelings you have may not be you being stressed but may simply be your autonomic system malfunctioning which then provokes everything that goes on physically during an actual panic attack. I had major problems when the pharmacy gave me meds in the regular formula instead of extended release. After a couple days I managed to call the doctor and the nurse told me that for POTS patients and this med it must be extended release or you run into big trouble and she called my pharmacy right away. They re-did my meds and I recovered but it was scary. I feel bad and will pray for you. Wish I could help. Sarah
  2. I live a little over an hour south of Cleveland. I was diagnosed at CCF by Fouad and also have Stillman as a doctor.
  3. It's encouraging that they didn't automatically label you high risk and insist on all that goes along with that. I have been wondering about labor. I have read that when midwives are involved studies have shown that both the baby and the mother are healthier afterwards. Part of me thinks that if they label you high risk because of POTS and take care of you in that kind of facility you're going to be more stressed because of it which could add to the problems. But on the other hand, they'd be there if anything went wrong. I guess my experience is that there really isn't anything they can do medically to prevent your blood pressure dropping anyway, except the extra fluids with the IV. So that's why I wonder if it wouldn't be better to go the more laid back route of using a midwife.
  4. I like to joke that I'm a carpet and tile inspector. I've inspected flooring all around the world, in Holland too, actually but in the extreme southwest.
  5. One of my recent moments was when I was taken from my home to the ER by the paramedics. After I had recovered and could talk and walk again (listed in order of importance), the nurse who was discharging told me I could remove the hospital gown and leave. . . well, I didn't have a stitch with me! When I told her, she got real quiet and I could see her thinking I was a streaker or worse. (I had collapsed in the bathroom.) I put her mind at rest. She allowed me to go home in the gown.
  6. Tylenol is a problem for me too! Aleve is the best for me. Sometimes I try aspirin. Sarah
  7. Well, I sure appreciate all the replies you ladies have given me. It sure is comforting. I found the other topic on POTS and pregnancy which was helpful too. I have gone through my POTS alone. I don't currently have a POTS doctor. I was diagnosed up at Cleveland Clinic by top-notch specialists but their strong point is not patient education. So, I'm on my own again. It is wonderful to have people to actually talk to who understand. It's like a luxury for me. I think that since this last pregnancy was abnormal that may have been why I had so much trouble with my POTS. A normal pregnancy may be just fine. My hormone levels were double what they should have been for how far along I was. I have read several places that when POTS is passed on hereditarily it is mostly from mother to daughter. I was sad about the miscarriage but not like someone might be if they had been trying and trying to get pregnant and then miscarried. The pregnancy was a shock though I was very excited for the day or 2 I knew about it and thought things were okay. I was somewhere between 3 - 6 weeks we think but they couldn't tell because everything was messed up. The hard part is thinking about the future. I want to consider my husband's concern about the possibility of it being life-threatening because if he had to take a risk that might endanger him I'd be concerned too. That might be putting it mildly, I'd probably be scared to death. However, the only reason I have gotten better in the past when I was very sick with POTS is because I ignored some of doctors' advice. Sometimes you just have to take risks. I really would like to have children. I guess in the long run the best is to remember that there can always be blessings in disguise. It's not the end of the world if you can't have kids (though it might feel like it if that's what it comes to), and I will just open my doors to other kinds of people that I might not otherwise reach out to. Sarah
  8. Humor is a life-saver for me. It helps me out when I've been stuck on the floor for hours unable to get up, or stuck in bed for days. It also helps with all the medical procedures and people I had to endure before finally being diagnosed. I tell my friends I'm not a stand-up comedian; I'm a "lie-down" comedian. Sometimes I think of the most hilarious things when I'm lying there but can't tell anyone because I can't talk then. When I finally get up, I forget all my really good lines. My humor is gravitational. Maybe it's another POTS symptom. : ) Sometimes I just wish doctors could see with what "professional skill" and efficiency I handle my episodes. I've had them my whole life and was a closet episoder so never told anyone or brushed it off until just a few years ago. Because of that I became very good at entertaining myself mentally while I was "stuck" (on the floor, unable to open eyes or talk). If they could only get a mike hooked to my brain at those times, I know I'd become famous. I tell myself some wonderful stories. : ) I like to occasionally imagine doctors bestowing me with a medal for handling my episodes so excellently. I'm convinced if they knew what really went on during my episodes they'd fall back in their chairs from shock or they should. There's nothing like imagining doctors humbly impressed and stupiefied by one's suffering to cheer you up. Nothing like a good ol' self-pat on the back to getting you going again. If you don't cheer yourself on, who else is going to do it? Well, I apologize for my present warped humor, but, you see, I'm sitting up. Sarah
  9. I have seen an automatic BP cuff on TV recently. Because I have most of my episodes at night, I am seldom discovered by anyone who can check my BP. I am curious if there are any automatic cuffs out there that can be easily slapped on and that read your BP for a minute or so and then remember it. I'm probably dreaming but it would help so much for some of us if we could walk into a doctor's office with "statistics". Of course, the unknown would be whether a person who has warning signs before an episode could get the cuff on in time. Mine almost always occur in the bathroom as that is where I run to because of getting sick, so I would put mine there.
  10. I am a 32 year old female with POTS and I just had my first pregnancy and miscarriage. Does anyone know if POTS increases miscarriages? Also, is pregnancy dangerous for POTS patients? I had an episode during this pregnancy although medication normally keeps me under control now. Something went dangerously wrong during the episode and it felt life-threatening. I have had POTS my entire life and am accoustomed to episodes and passing out for hours but have only had a few life-threatening episodes, the last time being 8 years ago. I was diagnosed 2 years ago and put on medication which cut my episodes down to only one every couple months. I am a newlywed and my husband, who is a neurophysiologist, believes pregnancy is too dangerous for me. Are there any doctors who have experience with POTS patients and pregnancy? The thought of not being able to have children is tough. We cannot afford to adopt and my husband does not feel it would be good to adopt special needs children because of my POTS problem though we would otherwise have been open to that. My family lives overseas and my husband's family is far away. It is hard to think of not being able to have any children whether naturally or through adoption. If you have any information about POTS patients and pregnancy, I would appreciate it.
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