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Everything posted by worththewords

  1. I have been pretty stable for awhile with my POTS but in November I ended up getting mono and since then I have had a bunch of new POTS symptoms. I don't think my original POTS was caused by anything post viral but I definitely think this particular flare up was caused by the mono. My current cardio/neuro believe it to be the same but they just aren't sure what to do for me. I recently had a holter monitor and my HR is all over the place - more so than usual. They wanted to prescribe something to control that but they are running out of ideas. Are there any medications that have been better for patients with post viral POTS? I'm getting ready to start pursuing an appointment with a pots specialist. Just thought I'd ask to see if anyone had any suggestions that my doctors and I haven't already considered.
  2. If you are going to go to Mayo Clinic Jacksonville I would highly recommend seeing Dr. Fred Kusomoto instead.
  3. Just curious on the latest on this medication.. I know it still isn't available in the US and Canada but just wondering if anyone was able to get it anyway from their doctor? I know there are ways around those things. And for those in the UK and Australia.. Are you still finding it helpful?
  4. I highly recommend Dr. Kusomoto at Mayo-Jax. I saw him and he was fantastic! If you decide to see him, make sure your actual appointment is with him and not someone else. You may need to ask a previous doctor for a referral.
  5. My POTS acted up once at 16 weeks (fainting episode) and then when I got to 34 weeks my resting heart rate was in the 120-130's. I ended up having a c-section at 38 weeks because of that. I was really just told to take it easy and rest as much as I could. I felt extra tired since my heart was running a marathon without the rest of me. I can't take BBs but it was briefly looked into a little more to see if there would be some benefit. Is your cardio working with your OB? Maybe they could talk. It sounds like you are doing everything else right. If it helps, my daughter is 10 weeks old now and my POTS is missing. My average heart rate is in the 70s now. It wasn't even like this pre-pregnancy. I'm not sure how long it is going to last but I'm enjoying it while it does. I'm in Florida too so I understand your concern about the weather. I've been known to hibernate in the A/C when my POTS is flaring up.
  6. What a beautiful little girl!
  7. Congratulations on your baby girl! I'm glad you had a positive experience. I'm having a c-section next week so you couldn't have posted this at a better time! It's very reassuring so thank you for sharing. I hope your incisions heal up quickly.
  8. Very interesting although I would like to read it on a different site than Wikipedia since anyone can add information to that site.
  9. Wow, sounds like you have a great team of doctors to work with! That's neat that they discussed all the options with you and let you choose. I am a little confused now about the whole water thing. It seems that warm/hot water can be hard for POTS people to tolerate due to vaso-dilation... so is it only water that is at a neutral temp or cold that is good for us? Do you know? I know that some hospitals in the USA now having birthing pools (I think it's over 100). Being in a hospital setting might be good. I'm not sure about the whole water birth either. You make a good point about warm/hot water being a potential issue. I think it is VERY important to be in a hospital setting when you have any type of pre-existing condition. You never know what will happen. For those that were talking about insurance, my c-section was scheduled at my appointment yesterday and on the part of the paper work that asked for the reason for insurance purposes my doctor wrote in POTS.
  10. Congrats! I'd love to hear about your c-section experience when you are feeling up to it. Hope you have a speedy recovery!
  11. I will be having a scheduled c-section in January. You CAN just ask to have one but your doctor will probably fully educate you on the recovery process. I have no idea about insurance and that hasn't even come up. I would assume having a condition like POTS can make it easy for the doctor to write it as a medical necessity. My OB and cardiologist kept going back and forth on what would be better for me. I have had a pretty smooth pregnancy. We all did our homework and put a lot of thought into the delivery. My OB told me he was going to leave it up to me. I could have a c-section or I could try labor and if it was too much then I could have a c-section. He did warn me that going into labor and then needing a c-section really takes a lot out of a patient and he also warned me on the necessary recovery after a c-section. I decided to have the c-section and everyone is on board and seems to prefer it since I will be more closely monitored in the operating room. As for the water birth, that is an interesting thought since most POTS patients do well in water but I would wonder about pain management. And a typical hospital where you could be closely monitored may not have that as an option. Personally with POTS I would prefer to be in a hospital setting.
  12. Are you fainting at all? If not, I wouldn't be too concerned. Is the baby active? Let that be a reassurance. I'm 8 months pregnant and was told if I fainted to go straight to L&D to have the baby checked but otherwise to not be concerned. Soon you'll start counting kicks and that will make you feel better.
  13. Definitely get a second (maybe even a third) opinion. I had undiagnosed POTS and had an ablation. It was the worst decision I ever made. Prior to the ablation my POTS could have been easily managed with medications had my EP had a clue about POTS. I became so much worse after my ablation and had full blown POTS. It's taken a long time to get back to a good place. It is a decision I will always regret but I didn't know that I had POTS and I was told the ablation would make all of my symptoms go away.
  14. I take Cerefolin NAC, which Dr. Grubb prescribed for me. It's not a miracle drug but it does help with concentration and fatigue. It's a prescription vitamin (B6, B12, folic acid, and some others I'm forgetting). I haven't experienced any negative side effects from it.
  15. I took it a few weeks ago when my husband and I got the swine flu. I have POTS and I'm pregnant. It gave me a little bit of a headache but it helped kick the flu fast. Everyone is different but I tend to be sensitive to meds and Tami Flu was no big deal for me. ETA: My husband was given Relenza (another anitviral) and he had the swine flu way worse than I did. It knocked it out of his system way faster than TamiFlu did for me. We'd rather take the meds than suffer through the flu, fever, and potential pneumonia.
  16. I think it's really important to find another doctor. I'm not sure where you live but check DINET's physicians list to see if anyone is nearby. Worst case scenario, open the phone book and start calling around to see if any doctors (cardio, EP cardio, neuro) are familiar with POTS. I would NOT have an ablation without getting another opinion and exhausting all other options. I failed my tilt table test but the EP cardio did not know how to interpret it correctly. I ended up having an ablation, which was supposed to "cure" my problem and it made me SO much worse. Later I was finally diagnosed with POTS and the ablation is one of my biggest regrets.
  17. I live in South Florida so cold weather is rare here. This climate really isn't kind to my POTS. I lived in Vermont for a year and did so much better. The cold allowed me to be out and about more. I was able to walk all around downtown without getting symptomatic. Most of my symptoms really eased up. It was a blessing to my POTS but too cold and miserable too many months out of the year for me. I need to move somewhere in-between!
  18. Oh, sorry! I didn't notice that. I just searched for the title of the chat and that was what came up. Perhaps there is another chat transcript from today?!
  19. The transcript is already up! You can find it here: http://my.clevelandclinic.org/heart/webcha...ncope_pots.aspx
  20. I wasn't able to get in either but I believe the transcript will be posted at some point.
  21. Autonomic Disorders: Syncope, Dysautonomia and POTS or Postural Tachycardia Syndrome September 30, 2009 - 12:00 p.m. ? 1:00 p.m.(EST) Autonomic disorders are neurological diseases which can affect the cardiovascular system, in which the autonomic nervous system ceases to function properly. Syncope, Dysautonomia and POTS or Postural Tachycardia Syndrome are different forms of this disorder and are the most common. Join us in a free online chat Wednesday, September 30th with Dr. Fred Jaeger, the Cleveland Clinic Medical Director of the Syncope Center and Director of the Cardiac Arrhythmia Monitoring Lab. He will provide answers to your questions about autonomic disorders. You can begin to submit questions on September 29th. clevelandclinic.org/webchat Be sure to register before the chat. It only takes a moment to do!
  22. Do you have a fever? I would suggest going to the doctor and getting a nasal swab test for the flu. They can only give you medication in the first 48 hours of onset of symptoms. My husband and I just got over the swine flu. He is perfectly healthy and it hit him really hard! I have POTS and I am pregnant but I only got a mild version, thankfully! We were both put on anti-virals and we are all better now.
  23. I take Klonopin and can't say I've ever had that problem either. Perhaps it is more hormonal, thyroid, or a deficiency of some type?!
  24. Dr Grubb said that? Do you mean he meant EDS or JHS? There isnt any evidence that forms other than those secondary to EDS and hypermobile joints syndromes are genetic. Its quite possible and even likely that they are but you cant say that definatively. I asked Dr. Grubb what the possibility was that I would pass POTS on to a child and he said 20%. I know of one other patient that he has told that to as well. We then discussed pregnancy with POTS and all the different ways it could go (some feel better, some feel worse in pregnancy, bed rest, etc.). I don't know where he gets the 20% from. Perhaps that is what he sees in his practice.
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