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worththewords

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Everything posted by worththewords

  1. This is a good topic.. I'm getting married in a couple months so this is something my fiance and I go around and around on - basically changing our minds on what is the 'right' thing. My gyn suggested to me that I should go the surrogacy route. He felt I could tolerate the fertility drugs necessary to make it happen but was very concerned about what the actual pregnancy would do to my POTS. He imagined it would make things much worse for me and suggested surrogacy so I wouldn't have to go through the actual pregnancy. Quite the expensive option but it's been an option on the table. Sometimes
  2. Mold isn't good for anyone, even worse if you have allergies. I don't think it would cause POTS, however, it may contribute to you feeling more symptomatic.
  3. Has anyone tried this with positive results?
  4. Are you taking a beta blocker? I have asthma and can not tolerate beta blockers. Unfortunately calcium channel blockers didn't do anything for me either. Hope you are feeling better soon.
  5. Melly, Does Klonopin help your vertigo? I take klonopin twice a day but I've never thought to take it during a vertigo spell. Curious to know if it helps you..
  6. Last week I had tubes put in my ears because I have been battling with ear infections for a long time. I still continue to battle with problems with vertigo. Unfortunately it has been recommended that I do not take antivert - the drug most commonly prescribed for vertigo - as the side effects include increased heart rate. My ENT informed me that he will prescribe small doses of valium to take before bed to reduce chances of vertigo. I haven't heard about valium helping vertigo but it is common for him to prescribe when antivert can't be taken. I currently take Klonopin and I will have to go o
  7. I just came from my ENT and just had this same discussion. Last week I had tubes put in my ears because I kept having so much trouble with ear infections. I'm still battling with vertigo though. He did feel that there could be a relation between the two. When you get vertigo your body gets more adrenaline going therefore triggering an overactive nervous system. Unfortunately, antivert - the drug most commonly prescribed for vertigo - is a anti-histamine and the side effect is increased heart rate. He has suggested I go on a small dose of valium that apparently helps decrease chances of vertigo
  8. I feel in the not so grand canyon when summer hit. Even though I live in Florida, I think the increased heat did me in. I'm slowly starting to come out of it. I have felt well though since the springtime.
  9. I would definitely say give it a shot - especially since they are going to monitor you in the hospital. I wish they would have done that for me! They gave it to me for POTS though. My first few doses gave me head rushes and close to fainting. I have heard that others have had success with it though! I hope it works for you.
  10. I just skimmed over what everyone else wrote so I apologize if I repeat anything. I had the same concerns when it came time for my wisdom teeth to come out. I saw an oral surgeon who removed my wisdom teeth in an outpatient center that was tied into a local hospital - in case of any emergencies. My cardiologist faxed him some suggestions on making my experience easier. I made sure that the annesthesiologist stayed present the entire time. I stayed in the recovery room for an extra two hours to receive IV fluids. I felt back to normal, whatever that is, within a couple days.
  11. From what I've read as well, Ivabradine doesn't have anything to do with hydration or blood volume. I'm really curious to hear about Dr. Low's research. Dr. Munger informed me about Ivabradine focuses on the sinus node and treating tachycardia/palpitations. I'm allergic to beta blockers so this was a drug that he was keeping an eye on for me. It doesn't seem as though it will be available in the US anytime soon though. I was curious if anyone else had their doctor mention this drug to them.
  12. Hello everyone, I think I've heard of the study that Chad is referring to when I saw Dr. Stewart in NY. Dr. Stewart had mentioned that Dr. Low was about to do a new study on a new drug. The doctor I saw at Mayoclinic in Minnesota, Dr. Munger, also knows of a drug called Ivabradine that is under study overseas. Hopefully if it is a success it will come to the US. Although Dr. Munger wasn't sure if any of our pharmacuetical companies would ever distribute it because they don't feel they would make enough money off of it. Chad, I really look forward to reading what you have to post as you recei
  13. Great topic! I manage to shower every day, sometimes every other day. I don't like to do it when I am home alone as I tend to get very dizzy/palpitations...you know how it goes. I've learned to tolerate colder than normal showers and can shower in under 5 minutes. I think I'm working on some sort of record. Shaving is done with me sitting on the side of the bathtub, even something about that doesn't make me feel totally well though. Blow drying my hair can be difficult too. I can tolerate for a brief amount of time if I am feeling okay. I used to take super long, hot and steamy showers, shave
  14. Personality disorder?! Well, that's a new one. Just when I think doctors can't surprise me anymore.. I can't even begin to tell you how many medications I was prescribed for anxiety/depression over a 2 year period before I was ever taken seriously. I'm very sorry for what you have to go through. I was diagnosed with POTS after having an ablation (ugh! i seriously don't recommend those - i had a normal life, somewhat, before the ablation). I was diagnosed by a doc at Mayoclinic in MN and my FL cardiologist promised to help with my follow up care locally. The only help she meant was looking it
  15. I didn't have time to read what everyone else wrote. I have POTS and PCOS. Hypoglycemia goes right along with the PCOS for me. Have you been diagnosed insulin resistant? I have that too.
  16. Personally, if it were for diabetes or any other condition I would still be bothered by the amount of medication I have to take. It's really hard to wrap your mind around it and just be okay with it. The hardest time for me is when I have to tell a new doctor or fill out a form of all the medication I take. Sometimes it just feels ridiculous and even more so since I'm 22. Your husband's suggestion of having your kids label your bottles as a reminder is very cute. You are doing it for them, yourself, and your husband so that the best of you is available to all. Hang in there!
  17. Naples, Florida POTS and hot Florida summers.. what a combination
  18. I'm currently seeing Dr. Stewart for his study. I'm 22 and I didn't get the impression that he primarily focuses on pediatric patients (although I might be mistaken). There is info on his study on this site under 'studies' Dr. Stewart's knowledge on POTS has been very refreshing as most of the doctors I've seen rarely know what I am talking about or experiencing.
  19. I am one of those people that has strange reactions to medications. Florinef kept dehydrating me.
  20. I was wondering if anyone found any vitamins or supplements helpful in increasing energy. I've recently changed my diet drastically (no bad carbs, no soda/juice, red meat) - I have a problem with my insulin/glucose levels. I know this is contributing to the lack of energy but it has actually made some of my POTS symptoms lessen. I realize I should probably be taking something to help with my energy. Any suggestions would be appreciated.
  21. POTS, thyroid problem (I had a toxic thyroid nodule destroyed by radiation treatment - i now take thyroid replacement medication), Polycycstic Ovarian Syndrome (PCOS), Insulin resistance (goes along with the PCOS), Asthma, enviromental allergies, allergic to beta blockers , and I tend to have opposite reactions to medication. That covers it and that's more than I'd like to have.
  22. I was labeled exercise intolerant due to my POTS but I've learned if I do things slowly I can usually condition my body to handle it. I work very hard to stay conditioned. Tilt tables are no longer my worst nightmare - although it still shows that I definitely have POTS - I have somehow got used to it having POTS. Anyone else experience this? I would like to exercise and shed a few pounds. What do you guys do for a form of exercise? I can swim and bike without too many symptoms unless I get hot and then I'm done. I'm looking for some new ideas.. any suggestions would be appreciated.
  23. On the "things to avoid" section on this site, the ablation is the first thing listed. I had a double ablation prior to being diagnosed with the POTS. Although it did help lower my heart rate - it doesn't go above 180 anymore - I actually felt worse and had more POTS symptoms after the ablation. This is just my personal experience. I don't thing POTS just goes away. I think there will be times where you are less symptomatic but I've never heard of it going away. At least that is my understanding anyway. On this board you will find older people that have POTS so I have to disagree with the sta
  24. Does anyone else get headaches from Gatorade? I can't drink too much of it. But occasionally I get cravings for it.
  25. Has anyone come across any books on POTS?
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