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Everything posted by jangle

  1. What types of activities did they have you do at the PRC?
  2. Ssri are worth a try for pots. My dizziness has been helped with my ssri, but im on a low dose and may try to increase it. Another thing is that the ssri takes 6-12 weeks to work, and the first few weeks you may feel worse as your body takes time to adjust.
  3. Going through these struggles certainly gives us a unique mindset and opportunity to face enormous adversity. I feel like we would all become very strong if we do ultimately pull out of the chronic symptoms and feel our old strengths. It is possible to make the symptoms more mild, to the point where you perhaps feel like you would feel normally or almost so. I definitely agree with the notion that we have to keep trying all the time, to find or continue treatments to work.
  4. Is it safe to push yourself in exercise? That depends on a number of factors and is really only something your doctor can tell you. When you have variables such as MCAD or EDS, it's best to respect that there is a wide variation in POTS patients and what is ok for one person might not be ok for another. For me, I don't have MCAD or EDS. I've pushed myself to 210 bpm in my exercises and have gone over 10k jogging. I do weights, rows, and stairmaster as well. This has led to a reduction in my HR and symptoms.
  5. It depends on the severity of pots you have. For me my symptoms are more mild in comparison so I live my life about as I would without pots just dizzy and uncomfortable. Three treatments I have found useful are florinef, ssris, and exercise. The combination of these treatments has made my symptoms even more mild.
  6. Carrie if the ssris failed it might be worth it to try another one, sometimes people who didn't respond to one will respond to another one. Apart from ssris, there's cognitive behavioral therapy or psychodynamic therapy that have proven efficacy in treating anxiety. I would suggest searching for a therapist who has this style training and who you connect with, often times therapists offer a free initial consultation to see if you will work well together. Combining the two treatments (ssri + therapy) often boosts the effect and it might be a good idea to do both at the same time. Other treatments are beta blockers, maois, benzodiazepines, or alpha receptor blockers then the tricyclic antidepressants. But these treatments are not very good options to be honest.
  7. Have you tried ssris? For some people these drugs can successfully mitigate anxiety. Additionally since you cited this has been an ongoing problem you might want to look into seeing a licensed therapist. They are specially trained to treat anxiety disorders. If you are not well enough to yet see a doctor or therapist you can always call the doctor and ask for a ssris to take to get you to a point where you can see one. Wish you well.
  8. This isn't going to be a really insightful post, im just commenting philosophically on how cruel this syndrome is. I've went through quite a lot of pain today staying upright all day. Now im lying down and I feel fantastic, no dizziness. But the longer I lie down the worse I feel going back up again. That's what's so cruel about this syndrome, that which relieves it hurts us in the end. I remember before I got this syndrome that I would get dizzy standing up from lying for a long time so I do think that response is normal to some extent, but just exaggerated in us. I have to wonder if one of the maintenance factors of pots is the fact that we have to lie down to sleep for a few hours everyday. Maybe I should invest in tipping the head of my bed up.
  9. I think OI is what they call it when you don't quite meet the 30 bpm increase. One dr. at Mayo said I had POTS another said I had OI, (didn't quite meet POTS). My TTT at Mayo was much better than the one at Baylor where I failed it miserably and got dx'ed with POTS. When I saw the cardiologist there he noted that I had normal sized left ventricle contrary to the "grinch" syndrome theory. They stopped my exercise test early (I wasn't finished running yet), but showed only "mild" deconditioning as measured by VO2 max. However, from a physiological point of view, if your HR is beating too fast (200+), it's not going to be pumping blood efficiently, this will itself cause the reduction in exercise capacity. So I think it's an error to think the deconditioning is entirely causing the OI when in actuality it could be the OI causing the deconditioning. Nonetheless, controlled studies have shown that endurance exercise in normal people as well as in OI can dramatically lower standing HR values, and that roughly half of patients with OI will respond to aggressive reconditioning exercises. In this view it makes sense to follow an exercise program as tolerated. It does not however make sense to think that exercise is the only thing one needs. For some it is, but for others, autoimmune/norepinephrine/EDS/mitochondrial/hypovolemia/mast cell issues need to be evaluated.
  10. Improved vitals are an excellent sign, but even more important I believe is their consistency. Unfortunately I have had much improved numbers only to go back to bad vitals. Also important is the duration of your standing. If you're going to have tachycardia it usually happens within 6 minutes. Unfortunately I have good vitals that gradually deteriorate to pots within this time span. But again everyone is different but I w oils suggest going off of how you feel versus what the vitals are telling you as they can be wildly inconsistent.
  11. I don't experience post exertional fatigue, so I'm different than most other POTS patients. In fact, I generally feel considerably better after exercising. I went a little crazy with exercise, I was up to a maximum of about 7 miles of jogging, and I would jog fairly regularly (4-5 days a week). I would also add in stairmaster + weight lifting + rows. At some points my HR would hit over 210. Not recommended unless you're cleared by a physician. Lately I've calmed down a lot on exercise, but I still do about 2 miles of jogging daily, plus the assortment of weight lifting.
  12. Excellent, hopefully he continues to improve and enjoy his college!
  13. Back when I was trying to get my POTS diagnosis, the docs sent me to an ENT for my dizziness. They did an objective test on me where they put electrodes on my face and had me look at a letter on the wall. Then they had me move my head side to side in a "no" fashion with gradual increase in speed. For me the letter started moving. They told me this was abnormal, the letter should not move. They then printed out the data and I fell way below the confidence interval - they told me my eyes and ears weren't coordinated. Basically the therapy they prescribed for me to do was called vestibular rehabilitation therapy. Go figure. I did it for a while. But my insurance wouldn't cover me being retested, so I have no idea if that ever got fixed or not. I bet if they tested many POTS patients with this they'd find they have their eyes/ears uncoordinated.
  14. .4 mg/d of fludrocortisone, good gosh. Unless someone had severe hypovolemia they would swell to a balloon.
  15. Yes, I am in good physical shape, I'm back to running miles daily + rows + stairmaster + weights. I think some of the variation in TTT results can be because of the tilt angle, I'm fairly sure at Baylor they told me they set it at 85 degrees. They really need to standardize it.
  16. I don't think they correlate well, that's just been my subjective experience, that I can be symptomatic sitting up even though my HR won't hit 100 from just sitting (usually). However I do think at some point it tends towards a correlation, like if your TTT has it so that your HR doesn't move at all, you probably will be feeling pretty good! (Unless of course the HR is artificially kept low - by a BB or something like that, I mean a 'natural' TTT)
  17. Yes, I wonder if it's because the Mayo clinic tilts at 70 degrees whereas I think at Baylor they might have tilted me at 85 degrees. (More steep angle). I could be mistaken. 70 degrees might be the standard angle for TTT. The cardiologists at Mayo wanted me off all medications, but the neurologist wanted a variety of medications, two of which were florinef and pyridostigmine. I don't think they have clinical experience with octreotide or ivabradine, but I could be mistaken. I felt like the neurologist was a lot more compassionate though and willing to try a lot of things to get me better.
  18. My first TTT in 2011 my HR changed max 55 bpm and averaged 43 bpm from supine to tilted up. Also I failed the deep breathing cardiovagal test. (Parasympathetic dysfunction) Now after 2 years of doing various things (this test was done off all medications for at least 4 weeks) my HR max was 29 bpm, average 27 bpm. Also I passed the cardiovagal test (no more parasympathetic dysfunction) [With one caveat, it wasn't continuous monitoring of HR/BP, it was done at 1 min, 3 min, 5 min, and 10 min] The thing is, symptomatically I don't really feel like I'm significantly better. But now I'm confused as to whether I still have POTS or not. One doctor at the Mayo clinic said I did, and the neurologist said I still had abnormal HR response to tilt, but she didn't call it POTS. I'm confused?
  19. Talk to your doctor about how to proceed, I'm at a a loss with all of those symptoms, certainly there is something going on with your autonomic nervous system. In relation to MSA, there would typically be signs noted on the brain MRI such as hot cross buns sign or other features which you did not describe. One thing that comes to mind would be an atypical presentation of multiple sclerosis, but I hesitate about that especially if there hasn't been characteristic WM hyperintensities on brain/spine MRI. If you haven't already, you might want to consider asking your doctor for a referral to a tertiary clinic such as the Mayo clinic to help with diagnosis and potential treatment options. I wish you well on this journey and sorry that you have to go through this, you must be incredibly strong to suffer so much without any answers and still fight on.
  20. Unfortunately the presence of a reproducible objective finding is not sufficient to avoid the label of a hypochondrical chronic complainer. Just been my experience with POTS.
  21. Younger people naturally have higher heart rates than adults. https://en.wikipedia.org/wiki/Tachycardia For a 5 year old, a heart rate over 133 would be considered tachycardia. I think they changed the definition of POTS for children and teenagers to be a rise of over 40 bpm. However, it couldn't hurt to do a TTT and get an autonomic specialist's opinion. Also keep in mind that POTS is generally triggered by something, usually a prolonged viral infection or trauma/stress. She might have a genetic predisposition for POTS, but so long as she avoids these triggers, she could theoretically reduce her chance of developing full blown POTS. As for the ehler-danlos, I'm not too familiar with that, so I can't really give much advice.
  22. You can ease the symptoms of POTS. RCT's have demonstrated this, I myself have been helped by fludrocortisone and other members can attest to other treatments.
  23. The cause of POTS is rooted somewhere in the autonomic ganglia, however the complexity of the autonomic nervous system is unbelievable. Research is aiming at trying to generate data on macroscopic dysfunctions that can be correlated to the disease process. Likely candidates thusfar have been NET deficiency, autoantibodies to ganglia, MCAD, idiopathic inflammatory processes, and RAAS dysfunction. EDS and a few case studied of malforned inferior vena cavas and other venuous abnormalities have also been noted, as have chiari malformations. The pathophysiological process is understandably complex and therefore answers are frustrating to come by. For example if it is found that the majority of POTS patients have NET deficiency, the solution would ideally be something on the order of correcting the epigenetic or genetic misshap. However, such a task is far beyond what current medical science could accomplish through brute force
  24. Did it help your lightheadedness/dizziness?
  25. I know there have been several threads already discussing mestinon, but I was wondering if we could have an update on people's experiences with the medications. The Mayo clinic is currently trialing a RCT of mestinon for POTS, and I know Dr. Grubb at Toledo published a positive retrospective analysis of pyridostigmine (mestinon) in POTS. Vanderbilt also published evidence supporting it.
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