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Lethargic Smiles

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Everything posted by Lethargic Smiles

  1. I like knowing everything I can about the characterizations of my case of POTS. Even if it doesn't make a difference in treatment now, as research continue to uncover more and more about managing/treating POTS, what I learned from testing will help me (and my doctors) decipher what is applicable to me and what is not.
  2. I think IVIG is primarily helpful in POTS cases where the cause is nerve damage from autoimmune disease. I could be mistaken though -- there isn't much research on the topic!
  3. This is exactly the type of thing I was curious about. I feel the fatigue I get from tachycardia is not as severe as the fatigue I get from beta blockers, but if I am helping out my heart, I can continue to deal with it. I would love to try out Ivabradine since alpha blockers are a no go for me. If anyone has good articles saved on the benefits of controlling tachycardia, aside from comfort, I'd appreciate the time it would save me on PubMed.
  4. My question is: In cases where the only symptom helped by beta blockers is tachycardia, do beta blockers actually help the body, or are they mostly helpful in that they make the person with POTS more comfortable? I thought I would ask here before I looked for research on the topic. I have read about how a tachycardic heart is less efficient than one that is not. The only symptom the beta blocker relieving, as far as I can tell, is the discomfort of tachycardia. I rarely have resting tachycardia anymore and the heart rate I jump to when I stand is not quite as high; usually 105-130 depending on the type of day. The frequency of pre-syncope/syncope is not any different than before I began taking Propanolol 2 years ago. I take 10mg 2-3x/day. I do think it makes me more tired and effects my libido. I am considering just dealing with the tachycardia. I may not do this if my heart is more efficient on a beta blocker. Alpha blockers are not a good fit for me. I wish this thought had struck me before my cardio electrophysiologist appointment last week!
  5. Katy the test you are thinking of is Catecholamine Testing and it tests for supine vs upright Dopamine, Norepinephrine, and Epinephrine. Norepinephrine is the one they most look to identify POTS characterized by a hyperandrenergic state with posture change. Here is info on the test and how it should be done from my experience at Mayo.
  6. I just thought I'd update. I am going to an immunologist who is also an internist and rheumatologist (I know - wow). Thanks to a biopsy of my lacrimal glands, we have proof of inflammation that is causing mild scarring. She sees me being bed bound due to a mystery disease (fevers of unknown origin, swollen lymph nodes, severe fatigue) as meriting treatment even though we don't have a name for what is wrong with me. Any risks are outweighed by benefits in her opinion since I am 25 and unable to take care of myself or participate in work or social activities.
  7. They still offer the uninterpreted raw data on SNPs related to health which you can then load to other sites to see any mutations you may have. Many services provide info on any health issues a specific mutation is correlated with. From there, you can look up research articles on specific mutations to decide what to do/think/how seriously to take it. My favorite service so far has been Promethease. Not only is it inexpensive, it has so many different ways to organize your information. You can organize by how rare/common a mutation is, how many published research articles there on a particular SNP, by disease, by keyword, by the magnitude of the finding, and so on... It would be interesting to compare with others and see if as a group, we share any uncommon SNP variations. A lot of the time, the researchers know what is the most common base pairing, but they don't know the significance of that particular location in the DNA.
  8. I just got my 23andMe results back. As of now, I didn't learn anything particularly useful in terms of POTS from the test. However, I believe as they continue to research genetics, knowing I have uncommon mutations at some of these SNPs may explain some things. I actually have a SNP variation that makes me likely to have a LOWER heart rate than people with other variations. This gene definitely isn't expressing itself in my case... or if it is I am scared to think what my normal resting heart rate would be!
  9. I wonder if patients who are fairly disabled and don't respond to other therapies could just be tried on autoimmune type medications to see if something helps. I have common autoimmune symptoms that have really knocked me down (fever, sore throat, swollen lymph nodes in armpits/throat) but a cause cannot be identified, so this is what the doctors are going to do with me soon.
  10. I also was told to watch it because it can make supine blood pressure too high. Fortunately mine doesn't get too high even when I'm supine as long as I adjust dosing accordingly, so I can take it at night or when I'm in bed all day.
  11. My sleep tricks haven't been working lately. I hadn't thought of this possibility! I'm going to take a bit of Midodrine (my doctor allows me to increase/decrease dosing as needed) near bedtime and see if it is helpful. Thanks for the idea!
  12. My sister was diagnosed with it but outgrew it after a little over a decade. Looking back, it seems my Mom and maternal grandma also had it but we don't know for sure. The genetic factor in our case is likely EDS-3 predisposing us to POTS rather than the POTS itself being genetic.
  13. I absolutely love the Mayo Clinic Proceedings article and all of the detail put into it. Thank you for sharing! I can't wait until I feel up to printing it out and reading it in more depth. Off topic sort of: The only portion I dislike so far is the part where a suggested cause of continued symptoms despite control of tachycardia and blood pressure is "somatic hypervigiliance " and "learned behavior". I went through Mayo's autonomic clinic and fully recommend it to anyone who asks me about it, so please do not take my thoughts as thinking Mayo is a waste of time or unhelpful. "Learned behavior" is what they told me was wrong at Mayo Clinic for symptoms they couldn't explain which I found disappointing. I have "learned" to respond to certain things with a fever and swollen lymph nodes....? I appreciate when doctors tell me they don't know rather than saying something like that. That aspect of their theory irks me because I think many POTS patients have underlying causes that are labeled as "somatic hypervigiliance"... Yes, in some cases I am sure they are right. I just don't think their theory is the case as a general rule when it comes to non-orthostatic symptoms.
  14. I just wanted to throw it out there that it took a few weeks (I think maybe 4) for the complete write up from Mayo (includes all of the testing, testing interpretations, doctors notes/impressions, treatment plan, recommendations) to get put together and sent out to me and my doctors. An EDS specialist I saw in Chicago who does a thorough write-up said to allow 3-4 weeks for his report. If your doctor knows this, maybe that is why he scheduled it a ways out from your return.If when I am in a doctor's presence, I do not feel respected and as though my concerns are being taken seriously, it doesn't work for me no matter how "good" the doctor is. What I've noticed is I do well with confident (but not arrogant) doctors. They view complicated patients as a challenge rather than a threat and are not intimidated by patients educating themselves or asking questions whereas unconfident doctors tend to find this type of patient threatening. Also, confident doctors are more likely to tell me they don't know something whereas an arrogant or "feeling threatened" doctor is more likely to make something up or brush off my concerns than admit not knowing.
  15. Also, have you done a poor mans tilt table at home? Lay flat for several minutes, take your pulse, then stand and take your pulse every minute or so for ten minutes (if you can stand that long). If it increases 30 beats or above 120 within that timeframe, you can use that information to support your suspicion of POTS.
  16. What I did (this was prior to being diagnosed with POTS) was go to a psychiatrist and had a depression and anxiety assessment performed. I figured there was no harm in going since I knew he was trustworthy based on a friend's experience with him. He assessed me and concluded I do not have anxiety or depression. When I experience anxiety, it is about my health interfering with my life which is a normal response. He suggested perhaps I'd benefit from therapy just to manage stresses since I'm so ill. I did come up as having depression if you looked strictly at the scoring, but he said he would never diagnose me with depression because the reason I scored high was an inability to do activities, but I have no loss of desire to do activities I used to enjoy and I still enjoy them when I am able to do them. Depression is about a loss of desire and enjoyment in addition to a decline in the frequency of socializing/hobbies/etc. After that, when I went to a doctor and s/he suggested depression and/or anxiety, I could say, "I understand why you may think of depression or anxiety given my symptoms. Other doctors have shared your concern which why I got an assessment performed and I was determined not to have either of those conditions. Since we can rule those out, what would be your next suggestion?"
  17. I came to say this! f.lux has done wonders for me with my issues looking at the computer screen and also helps avoid "blue light" exposure which can interfere with your ability to fall asleep at night
  18. I'm not sure everything they look for, but I do think if your lungs are only operating at 60% it would make sense to ensure your lungs are okay. I do know a chest X-ray when someone is having trouble breathing could reveal scarring on the lungs, swollen lymph nodes pressing against lungs, and any masses that may be growing on the lungs. I don't have asthma (or an abnormal chest xray) but for whatever reason the inhaler helps me breathe better too! At Mayo Clinic, a chest X-ray is part of their autonomic clinic work up, I believe to rule out Sarcoidosis which often presents with enlarged lymph nodes in the chest.
  19. I'm happy this got caught! Is the allergist going to order a chest X-ray to make sure there isn't another possible explanation for your asthma?
  20. Yes. This is my completely weak unscientific wondering... #1 I wonder if our body is doing all sorts of crazy stuff when we are standing to keep us that way. When we lay down, all of the mechanisms put into action for us to be able stand don't stop right away. Then, when our body realizes we are supine and starts sending out those signals, it tries to adjust, but our bodies just aren't normal, so the difference between what needs to happen when we are upright vs supine is very different than it is for a normal body, so things go haywire as it tries to figure out what to do #2 I wonder if when we are standing, our body is working hard to keep us that way, then when we first lay down, our body hasn't switched from what is was doing in standing mode and is still working extra hard on top of being supine helping, so things are good. Then, after a bit, our body realizes we are supine and it doesn't have to work extra hard compensate to keep us from injuring ourselves or organs not getting enough blood, so it just stops doing whatever it was doing and we feel like crud.
  21. Thanks kJay. That is what I do when I get the feeling things are going out of whack (increase my broth intake) but it doesn't do the trick for me. Maybe if I did it more regularly like you do I wouldn't get out of whack in the first place though. I went to Mayo too but they told me to monitor my 24 hour urine collections and adjust my sodium and fluid/water intake based on that. My blood sodium which gets measured more frequently is also good although I know it isn't an accurate measure like the urine analysis is. Chaos -- I will be interested to hear what you are able to recall! Becia -- I'm with ya! I wish there was an answer as to why some of us are like this despite adequate sodium and other electrolyte intake.
  22. I'm like you Alison where I can tell when I've drank too much and maybe need some sodium and to drink less the next day. Luckily this doesn't happen too often anymore because I've got a routine down my body agrees with. I also get this really weird sense when I need IV fluids. It doesn't feel like dehydration, but I can't really explain what it DOES feel like. When I've gone and gotten them when I feel cruddy overall, but don't have "the feeling", they haven't been near as beneficial.
  23. More from the article I linked above. "Regulation and distribution of sodium and potassium within the interstitial and the intracellular fluid compartments are via the sodium potassium pump. Active transport is necessary to move sodium from the cells to the ECF compartment. The active process of pumping sodium out of the cells forces potassium into the cell. An example of the effects of the sodium-potassium pump is seen in children with severe bums. The injury causes more sodium than water to be drawn into the interstitial spaces. This decreases the efficiency of the sodium pump, which allows more water and sodium to enter the intracellular space. The increased osmotic pressure gradient drives potassium out of the cell. The loss of water and sodium from the intravascular space results in the increased secretion of aldosterone and antidiuretic hormone (ADH) as compensatory mechanisms, which contributes to the retention of sodium and water. Not only is energy required to move substances against a concentration gradient, but a carrier substance is required for the transport of sodium, potassium, chloride, sugars, and amino acids. Carrier substances are either a protein or a lipoprotein. The protein carriers function by providing an attachment site for the specific substance to be transported. The lipoprotein facilitates the solubility of the substance in the lipid portion of the cell membrane." According to the chapter, there are 4 different ways for fluids to move around. The article is geared toward pediatrics, but this is true of all of us. The above is one way... So, in addition to the Renin/Angiotensin/Aldosterone cycle theory, it seems like there are plenty of chances for things to go wrong just with fluid/electrolyte exchange within the cells and maybe that could explain why IV fluids, which don't require any exchange of fluids from inside or outside the cell, bypass this problem. I'm a layman though, so who know -- could be understanding it completely wrong!
  24. Chaos, I maybe came across what the nurse was talking about. I need to finish reading the article but my brain is not cooperating! "When the movement of water causes a concentration difference, the cells either shrink or swell, depending on the direction of the net movement.Isotonic solutions (0.9% saline) do not cause cells to either shrink or swell. Hypertonic solutions (one with greater than 0.9% saline) cause cells to shrink by moving water from within the cell to the ECF compartment, which has less sodium than the cell. Hypotonic solutions (such as 5% dextrose and 0.2% normal saline) cause cells to swell." LINK (Chapter on Fluid and Electrolyte Regulation -- geared toward people working in pediatrics, but much is applicable and the author indicates when something is mainly applicable to children) So I suppose that would be the difference between consuming sodium and water versus the 0.9% solution I am giving through an IV. I wonder why it would mater that the solution does not cause the cell to shrink or swell and consumption of sodium/water does? Any ideas or direction I should be looking anyone?
  25. FYI since it is related -- The Autonomic Neurologist at Mayo said the best way to figure out how I am doing with sodium intake is to a do a 24 hour urine collection as the blood test isn't very accurate in determining how the body is doing overall -- it is just a snapshot. My blood tests said my sodium was perfect, but the 24 hour urine collection revealed I actually was below range. He recommended patients fluid loading repeat the collection every 6 months or so and adjust accordingly.
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