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Everything posted by Katybug

  1. There's no telling what my standing heart rate may be even when I'm symptomatic....it could be only 10 points higher than my resting HR, or, it could 60 points higher than my resting HR. Early on in my relationship with my POTS neuro, he told me that once you have POTS, there is not necessarily a direct correlation between your HR and your symptoms. For example, you could have a rise of only 20 bpm supine to standing and be symptomatic but you could later have a rise of 40 points and have the same degree of symptoms or less as the 20 point increase. Apparently there is an old study that shows that severity of symptoms isn't directly linked to severity of the tachycardia. I haven't found the study...just repeating what the doc said.
  2. I basically agree with Corina. POTS patients can have heart attacks, like anyone else, but, I have never read that POTS patients have a higher incidence of heart attacks than the general population. I also experience most of the physical symptoms you are describing to varying degrees depending on how severe my presyncope becomes. I don't get the feeling of doom but many members have previously described this in past threads. If you haven't had complete cardiac testing, i.e. EKG, cardiac echo, exercise stress test, nuclear stress test, Holter or event monitor, to verify that you have a healthy heart, I encourage you to speak to your doctor about that. I felt infinitely calmer when I had these extreme symptoms when I knew that it was POTS and not something wrong with my heart. Also, if these are new symptoms, please consult your doctor or go to the ER. While it may very well be POTS, any new cardiac or neurological symptoms should always be discussed with a doctor.
  3. Here is a link to the SSA.gov site and page showing the "Listing" that my judge ruled was "medically equivalent " to my condition based on the testimony of the medical expert she had attend my hearing via conference call. It is listing 4.05. https://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm#4_05 (Btw, the medical expert was a nephrologist which was very concerning to me. However, he had reviewed my file and was familiar enough with POTS and EDS, and also aware of the level of expertise of my doctors, that it turned out ok.)
  4. Hi. I sent you 2 PMs. There is information in both I'd prefer not to share publicly. Hope it helps.
  5. I have "no POTS" or "low POTS" days, followed by "uber POTSie" days with no rhyme or reason as to why some are good and some are bad. The longest I've gone (for a while now) with good days is 5 days in a row. One thing I have learned is....if I get 2 good days in a row, don't get too big for my britches and over do it, or my streak of good days will come to a screeching halt. And it usually is not while I'm over doing it; it's usually either late that night or the next day. If I'm having good days and stick to my same activity level, I can sometimes squeak an extra one or two days out of it. I am grateful for the days that are good and I have stopped anticipating that they will stay, so I don't ride the emotional roller coaster that causes. I take each day as it presents itself and do what I can to enjoy it....whatever "it" is. Take care, Katie
  6. It's not unusual for people with hyperandrenergic POTS to see an increase in BP upon standing.
  7. BillC, I was going to copy and paste links from prior posts on this drug but there are too many. If you use the search function, change it to "This Forum" and type in Northera. You will get quite a list of prior discussions.
  8. Lots of Low Pressure systems in the winter. I find increasing my compression wear helps a bit. I add heavier compression stockings than the ones I use in warm weather and I wear a compression tank top in the winter. It adds compression and warmth.
  9. Did you pay attention to how you were breathing during the stretch? I ask because many people have a tendency to hold their breathe and bare down when stretching. This could lower your HR.
  10. In what you describe, you are changing your orthostatics and also changing the position of your arms in relation to your heart. Both of these things are known to change BP and HR. I can't speak to how your body, in particular, reacts to these changes, but it doesn't surprise me to hear that you see changes.
  11. Here is a link to the ssa.gov information showing that under the section of "cardiac impairments", syncope is listed. https://www.ssa.gov/disability/professionals/bluebook/4.00-Cardiovascular-Adult.htm#4_05 I will PM you the attorney's info. Also, I forgot to mention I the first response, I am on SSDI, which is different than SSI, which is what you mentioned. I don't know what, if any, difference there is in the medical qualifications.
  12. I don't know what state you are in but I'd be happy to give you the attorney's name that I used for my case. He is allowed to practice in a few states, so maybe you might be in a state where he's licensed, and he had one POTS case prior to mine, so I know he's had at least 2 (and that was 2011/2012, so he may have more experience since then.) At the time I had my hearing, I had well over 600 pages of medical documentation which the attorney said is about 3x what most cases have. I was also diagnosed with POTS, EDS, MCAS, and migraine. The court had requested their own medical "expert" to "attend" the hearing which he did via speaker phone. He was a nephrologist! I thought I was sunk. BUT, he was a nephrologist that was aware of EDS and it's connection to POTS. He told the judge that the symptoms of presyncope that I regularly experienced from POTS was the equivalent to "Syncope" which is one of the conditions on the list of things that automatically qualify you for SSDI. Because he validated this equivalency, the judge found in my favor. I will say that my specialists had everything well documented and my PCP made a note every time I saw him stating that he did not believe I could perform "meaningful work" due to my symptoms and their unpredictability. I had documentation from a POTS neurologist who is also a certified headache specialist, a cardiologist, a geneticist, an immunologist, and my PCP. The other thing I remember my attorney telling me is that it was important to have any and all medical issues/illnesses/conditions documented because at the point of a hearing, the judge doesn't look at just the "disabling" issue but also if there are other comorbid conditions that compound the disability (like my migraines aren't disabling but they do compound the effects and severity of my presyncope from my POTS on days when I also have a migraine.) Let me know if you want the attorney's info and I'll PM it to you.
  13. I asked because Lyme can be a differential diagnosis for dysautonomia but it can also be the initiating cause of dysautonomia. I was hoping, for you, that Lyme treatment might allow you to feel better at this point. I hope you get it figured out.
  14. I've never heard another member who has hyperandrenergic POTS say that they had abnormal VMA. From the description you posted above, it sounds like an abnormal VMA would be associated with a pheocromocytoma but not Hyperandrenergic POTS. Pheocromocytoma is a differential diagnosis for hyperandrenergic POTS, so that all fits that they tested you for a pheo.
  15. I forgot, but I also have licorice tea that is great for nausea. Glad you are finding that they help you.
  16. Yes, I have found Mint tea can be very soothing for my stomach. Ginger tea too. I actually have started taking a tumeric/ginger supplement and it has settled a few of my inflammatory type issues including some GI things.
  17. Have you thought of keeping a calendar that tracks this 4 wk cycle of POTS vs. your menstrual cycle to see if there's a correlation? Many women have a harder time with their POTS symptoms the week before or week of their period. There's quite a few old threads on that subject if you want to do a search for them. I, for example, apparently can't handle estrogen in my body of any kind.....my own or from various forms of birth control. So, I am on Depo Provera shots which has stopped my cycles and is a progesterone based drug. While I still have POTS, I don't have the guarantee that 1 week a month will be worse than the others.
  18. These symptoms sound fairly consistent with POTS/Hyperandrenergic POTS. Unfortunately, finding what helps control the symptoms seems to be trial and error for each of us. You mention that you can't feel temperature changes on certain parts of your body. Have your doctor's evaluated you for any sort of neuropathy? That is a common issue with POTS patients ts and might allow more targeted treatment. You say you live somewhere warm. Some of out members use cooling vests which can be purchased online. I also struggle with temperature regulation issues. I get both extremely hot/sweaty from even a small change in the ambient temperature, and, I also will become so cold I shiver uncontrollably. For the heat, I use ice packs and have fans in the rooms I spend the most time in. But it's still definitely a problem. Mestinon (pyridostigmine ) is a medication that helped me quite a bit. It might be worth having a discussion with your doctor's about it.
  19. I get significant temperature swings with my migraines. Not on a thermometer, but, I will have hot flashes and then feel very cold. I'm sorry you've had it 2 days in a row.
  20. I think it's fairly common for us to be checked for thyroid and either Cushings or Addisons issues. I also had low DHEA, which my endo says is a little controversial in the medical community as to whether it is relevant. But, he said he has some patients that gain some relief if they supplement when it's low and some that don't. I do get some relief from my fatigue and joint pain. It's no miracle cure but I'm willing to take little increments of relief that can add up over time. Some people have had catecholamine testing but it needs to be done at a lab that knows how to do it correctly for dysautonomia patients. A blood draw has to be done after 20 minutes supine and then another blood draw done after 10 mins standing. The point is to compare the difference in the readings at rest vs after standing....another measure of how your body is reacting to orthostatic change. I think I've read in the past that some of our male members have been tested for low testosterone, too.
  21. I haven't read that about D3 although that doesn't mean it isn't a side effect. Interestingly, Vit D deficiency can also cause elevated HR. While I can't say if it's happening to you, my POTS definitely flares when I have allergic reactions to anything. The release of histamine and prostaglandin from an allergic reaction causes other symptoms of a stress response in the body, so that's not unheard of. Have you done anything to address the reaction? Katie P.S. I have been dealing with a rash (not allergic) that gets in my scalp and I really feel for you. It's very annoying and not an easy place to treat topically. Hope it resolves quickly.
  22. I'm so sorry to hear how I'll you are, Ancy! I hope those tests brought some answers and they are getting the acute infection under control.
  23. We're you ever treated with appropriate antibiotics for the Lyme?
  24. 97.1 is my new normal since developing POTS.
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