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Lethargic Smiles

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About Lethargic Smiles

  • Birthday 05/23/1989

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    POTS onset: February 2008
    POTS diagnosis: February 2012
    EDS-3 diagnosis: January 2014
    Sjogren's Diagnosis: September 2014 (onset was 2008)

    I've been to several doctors for POTS, including the Mayo Clinic in Minnesota. I went to The POTS Treatment Center in Dallas as well.

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  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.
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