Jump to content


  • Posts

  • Joined

  • Last visited

Posts posted by Lemons2lemonade

  1. Different anti anxiety medicaitons can have different effects. I took prozac and it made me worse. I took celexa and it made me feel better. Allegedly, though, effexor is supposed to be the best for patients with dysautonomia, according to my dr. Also, the all the anti anxiety "pams" made me worse.

  2. One more thing. I saw 2 cardiologists who told me i was just dehydrated. Also, i would ask the electrophysiologist about a holter monitor. It is a 24 hr. ekg and can catch any rhythm abnormalities. Don't be afraid to be firm with dr.s they always think they know everything and this isn't always the case. I had to fight for my treatment. MayoClinic in minnesota has a pots treatment center. So does Vanderbilt in Tennessee. If i had a choice i would choose vanderbilt. If you have any referral questions, i can also help with that. Moreoever, it is possible that she has a phsychological issue, but i have learned that dr's who don't know the illness tend to suggest that because they don't know how else to help. Mayoclinic also deals with autoimmune diseases--hypermobile joints are strongly associated with autoimmune disease and there are a variety of autoimmune diseases that can cause pots symptoms.

  3. Hi there! I am sorry that your daughter is going through this right now, pots isn't easy. The good news though is that it is manageable. The one thing I have learned with pots is that it is important to keep moving forward--both physcially and mentally. This can be extremely difficult at times but for me it keeps my baseline of functionality up. I would encourge her to keep going with school even though it is tough, and to make sure that this is consistent with the dr.'s recommendations. Some things to consider about florienf are that it depletes potassium in the blood stream so make sure that your doctor is keeping an eye on her potassium levels and if needed supplelmenting them. If a supplement is needed, i much prefer the potassium packets to the pills--they are more effective for me. Another thing to consider, as she gets older, is that florinef can make birth control ineffective. Addditionally, there are a variety of medications available for pots patients. Some work better or worse for others. Lastly, i have found that internal medicine helped me manage my symptoms and medications better than the cardiologist did. If you have any more quesitons please feel free to contact me via messsaging. Take Care!

  4. So I was swimming in the ocean today and noticed that I was floating! I could lay there forever completely relaxed and not sink despite waves crashing around me. I could even lay straight and float! I've never been able to even do the starfish at all my entire life. Wondering if anyone else with pots floats more easily?

  5. Dr. G told me that propranolol is a non selective beta blocker meaning it affects a variety of bets receptors in your body. Whereas metoplerol only works on the heart and blood vessels. Research highlights the whole body's beta adrenergic pathways in pots. So in theory, propranolol is supposed to be more effective in pots treatment.

  6. Although florinef has powerful mineralcorticoid effects, it also has pretty high glucocorticoid effects in comparison to other steroids. The only glucocorticoids stronger are dexamethasone and betamethasone. http://www.endotext.org/adrenal/adrenal14/adrenalframe14.htm This means florinef is more potent in glucocorticoid areas than predisone, methylprednisolone, and cortisol in equivalent doses. Sometimes I wonder if it isn't also the glucocorticoid properties of florinef that also help us by turning down immune function. Moreover, glucocorticoids help with glucose metabolism which is an important function for cellular respiration- converting glucose to atp working with the citric acid cycle. I.e. glucocorticoids are also involved in the mitochondrial process. So basically, florinef acts on the water retention, immunosupression, and mitochondrial processes.

  7. The original post says consult your doctor and that I hope it can work for you. Sure, it may not work for everyone, but I was sharing my experience in hopes that it might help someone. It's not just my opinion, there is research backing this up. I'm not asking anyone who has been told not to exercise to exercise. I'm just saying that it was helpful for me. My purpose isn't to offend anyone, only to share a method that helped me.

  8. Thank you, Friday. If someone told me to exercise a year ago (which they did) my response would have been "I can't." I spent 2 years of my life with this mentality. It's not like I got off of the couch one day and said, " I know! Forget pots! I can do this." No. It was a year of torture and fallbacks and basically for lack of a better term: ****. Every day it felt like I was going to die. Every day was like starting over from the beginning again-there were no short term rewards to motivate me, only suffering with no end in sight. Exercise brought on the worst of my symptoms. And exercising made me worse. I can't count the number of times I hit the wall or was demoralized or felt like I couldn't do it. It was hard. In fact pushing through this illness is one of the hardest things I have ever done. But the reality is that I could and I did. This may not help all but my hopes are that it may help some.

  9. I am not saying that exercise will cure pots. Only that inactivity will make symptoms worse in many patients and many normal healthy individuals as well. I know just as well as everyone else on this forum does that deconditioning did not cause my pots. However, it is an effective way to reduce symptoms in SOME. When I saw Dr. G at mayo he recommended exercise. The bottom line is that muscles in your peripheral system help with blood pressure and circulation. Muscular atrophy certainly is not a way to increase endurance or reduce heart rate in any individual healthy or not. Moreover, exercise is subjective for all of us. Some of us may be able to run a mile others may need to just sit up during the day.

  10. http://www.nasa.gov/mission_pages/station/research/experiments/Integrated_Cardiovascular.html

    I feel it is important to recognize that prolonged periods of bed rest can create orthostatic intolerance in even healthy individuals. Also, lack of exercise can make anyone have a tough time getting around. All pots makes me want to do is lay down. But it wasn't until I started pushing that I started seeing results. This doesn't mean we have to run marathons, only challenge ourselves a little more each day. This plan has worked for me and I hope that you can discuss it with your doctor and that it will also work for you. Down with pots!

  • Create New...