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Everything posted by Babygirl1973

  1. http://labtestsonline.org/understanding/analytes/electrolytes/tab/test I answered my own question....I will ask the doc this week for a panel. Thanks.
  2. Thank you. I am not sure I have ever had my electrolytes tested. Is there a specific test???
  3. Hey all, Does anyone experince severed muscle spasms? I have had one incident where my muscles locked up from the neck down, but the majority of my attacks occur in my feet and calves when laying down at night. I stay hydrated, use salt tabs, take mag and pot pills etc. I also sleep with my head raised in the hopes that blood goes to my legs/feet. Here is my question, when a POTSy lays down, does blood flow slow down as well? Is my blood not flowing as much (or going to the organs that need it) and that is why the charlie horses occur in my feet and legs? According to my physical therapist, my muscles can be worked loose, but as soon as she stops working on them, they tend to lock right up again. I have been tested for MS; negative results. I see my specialist this Friday, and will bring it up again, but thought I would see if you all had any thoughts or similar experinces. Thanks, Christi Twelve Year Survivor
  4. I am outside of Annapolis and drive to Media PA to see Dr. Goodkin. He is a cardiologist that has a passion for treating POTS patients (as well as research) becuase his daughter has a very severe case. I would highly suggest him. It is worth the drive. Let me know if you need the contact information. C
  5. Just food for thought- If we strengthen the muscles in our legs, they tighten when we stand hence decreasing the effect gravity has on our blood. Working out our lower body decreases the amount of pooling of blood, hence impacting the degree of our symptoms. "Reconditioning of the patient with POTS is of paramount importance. The aim of reconditioning is to improve the strength of the legs and thereby increase the effectiveness of the skeletal muscles to pump and return blood to the heart. This is best accomplished by a combination of aerobic exercise and resistance (weight) training. Often, water exercises (such as swimming) are the most comfortable for the patient." http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-by-dr-blair-grubb See diagram for visual....
  6. Hi Mary-

    His name is Dr Goodkin and he is located in Media PA. He is a cardiologist who has a daughter with SEVERE Pots so his passion is research as well as treatement of other POTS paitents. I would highly recomend him. (I can also say that on HospitalSoup.com Dr. Grub seems to be highly recommended as well!)

  7. Afterthought- How long should I stop taking my supplements prior to the blood tests? I am planning two weeks, and to be honest that makes me nervous. I would like the results to be as accurate as possible, so I am going to try....
  8. Afternoon folks- After a bit of research (thanks to an excellent POTS forum on hospitalsoup.com), I discovered that I should probably have blood drawn and tests for the following: Vit D, 25 Hydroxy (Vit D3) Vit B12 Complete Thyroid (TSH, Free T3, Free T4, Reverse T3 and Thyroid Antibodies Iron Panel with Ferritin Complete Hormones including Estrogen, Progesterone, FSH, LH, Testosterone and DHEAS CBC plus complete metabolic panel Urinary Sodium Has anyone had these, found results were helpful and did I miss any that I should add? Thanks and Stay Positive, Christi
  9. Afternoon- Sounds like what I have - Mitral Valve Prolapse. Your heart has four chambers. In between the left and the right side is a valve that prevents blood from being on both sides of the heart at one time. If it is MVP, that valve (swings like a saloon door) does not close all the way and the blood ends up on both sides. The medical term is regurgitation. Mine was diagnosed via echocardiogram (I beleive). Hope this helps and good luck. Stay Positive, Christi
  10. Jennifer, Welcome, I am sorry...and yet thrilled. It is a tough journey to go through, but once you get a diagnosis you can begin to heal, mentally and physically. I would encourage you to watch the video Changes. Excellent video. My family and I watched it together in order to understand POTS better. As the others mentioned, reading through the forum is a great resource as well. I read for a long time, without posting, and finally registered this week. I am glad that I did. The support is tremendous. Please let us know if you need anything. We are all here...and we understand. Keep the positive side up, C
  11. Thank you very much guys. I see the doc on the 3rd of March and wanted to discuss it with him; this gives me some useable feedback. I had never experienced it before and it is nice to know I probably wasn't having a setback- it may have just been the altitude. :-) Have a fast day. C
  12. For me personally- small meals and tons of protein!
  13. I use creatine pills and suggest that you try it again. I started using it due to severe mucsle cramps triggered by cold, heat and or standing for periods of time. For me persoanlly, it had great benefits both in my everyday activities, but also when I worked out. Good luck!
  14. Afternoon- Just got back from a trip to the mountains, and for the first time in about three years, I started to get dizzy spells again. Does altitude exacerbate POTS? (I know planes do- but mountains?) I am on Midodrine (for POTS), Pantoprazole (for GRE), Lexepro (for POTS/Dysautonomia), Fludrocort (for POTS), Clonazepam (for CF and POTS) and Coreg (for heart). I supplement with Magnesium (500mg a day), Potassium Gluconate (1100mg a day), B-12 (1000 mg per day), Vit D (1000mg per day), multivitamin, Corvalen (d-ribose) and pro-biotics. Interested in others' experiences in regards to altitude. Thanks, Christi
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