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  2. Wow @KiminOrlando how interesting. My Dr sometimes refers to me having MCTD too, he uses UCTD and MTCD interchangeably with me. I didn’t realize that you could test positive then negative for a disease and then have a different one. Freaky. Thanks for the info.
  3. Yes. I have Mixed Connective Tissue Disease. At the time they didn't know that and my ANA was negative. I was later positive for lupus for 18 months, but now negative. I'm currently positive for RA for 10 years and being treated with methotrexate and an IV biologic. When my body got run down, it responded by running a fever. It still can happen, but now that I don't work, my body doesn't get put through that kind of stress anymore.
  4. Today
  5. @bombsh3ll - this was in the UAE - United Arab Emirates. And I assume that she will have major dysautonomic issues once being able to be upright again, yet I hope this will be temporary.
  6. Kim - that is so weird!!! I never heard of anything like that! Have they found anything auto-immune with you?
  7. @jklass44 a nuclear stress test is a regular stress test. The nuclear part is when before nd after the exercise part you have to lie under an xray machine that is able to take images of the vascular system of the heart. This is done with any stress test. An angiogram is a completely different procedure that has to be done in an operating room under sterile conditions because they insert a catheter in your wrist or groin that gets threaded directly into the heart. This procedure also provides imaging but it is much more complicated than a stress test. Yes - when I had my heart cath the coronary blood vessels spasmed - that is how they diagnosed this condition. It was seen in the imaging portion and also was noticed manually while advancing the catheter into the coronary vessels.
  8. Description, Physiology & Onset Hyperadrenergic POTS is a subtype of POTS that affects about 10% of patients with dysautonomia symptoms due to orthostatic intolerance. (Grubb et al, 2011) The mechanism differs from other types in so far as it is caused by centrally driven sympathetic activation. In other words, symptoms are caused directly from an ANS malfunction, rather than the ANS malfunction being a response to another cause. This results in patients having increased norepinephrine (adrenaline) in circulation and a rise in systolic blood pressure upon standing. Two additional characterizations of hyperPOTS go hand-in-hand - hypovolemia and the reduction in the activity of the enzyme renin and aldosterone. When a person with hyperPOTS is upright, there is a loss of plasma blood volume into the surrounding tissue (hypovolemia). In people without hyperPOTS, there is a normal reduction in urinary sodium levels when upright. This mechanism doesn't happen effectively in a person with hyperPOTS and this contributes to the severity of the reduced blood volume upon standing. In addition, the plasma enzyme renin plays a major role in the regulation of blood pressure, thirst, and production of urine. When standing, the activity of renin and aldosterone is greatly reduced in a person with hyperPOTS. The third major characteristic is the elevated norepinephrine and epinephrine levels in a person with hyperPOTS. Adrenaline is a neurotransmitter, a substance communicating within the nervous system and it is active in the synapse, the junction between nerves. When present, it causes activation of the sympathetic nervous system, causing an increase in HR and/or BP, commonly known as the “fight-or-flight response” which causes excitement, tremors, etc. The increase of norepinephrine can be activated by different mechanisms, the ANS produces too much adrenaline ( centrally mediated hyperadrenergic activation ), the excess adrenaline does not get cleaned out of the synapse once no longer needed ( Norepinephrine Transporter Deficiency ) or autoimmune antibodies against cholinesterase receptors. (Vanderbilt) The onset of hyperadrenergic POTS is largely the same as other forms of POTS, with the onset of symptoms following precipitating events such as viral infection, pregnancy or trauma, including surgery. Another cause found in hyperadrenergic POTS is MCAS ( mast cell activation syndrome ). In this case, the circulating vasodilator produces reflex sympathetic activation which causes symptoms like flushing and orthostatic intolerance ( the inability to compensate for the upright posture ). (Vanderbilt) Diagnosis The criteria for diagnosis shares many factors with POTS; including the presence of symptoms for 6 months or longer, a Head-Up Tilt Table Test (HUTT) shows tachycardia of 30 BPM or above 120 BPM in the presence of orthostatic intolerance within the first 10 minutes of upright posture. Patients are diagnosed with the hyperadrenergic form of POTS based on an increase in their SBP ( the higher number ) of at least 10 mmHg upon standing or during the HUTT with concomitant tachycardia or serum norepinephrine levels of above 600 pg/ml when upright. (Grubb, et al, 2011) Symptoms The symptoms of hyperadrenergic POTS are often shared with other types of POTS but also can be specific to this type of POTS: anxiety, tremors, orthostatic hypertension, and cold hands and feet being specific to this type. Other symptoms include fatigue, palpitations, dizziness and presyncope, syncope, excessive sweating, nausea/ diarrhea/ bloating, excessive stomach acid, increased urine output upon standing. Similar symptoms can be caused by pheochromocytoma ( a benign tumor on the adrenal gland ), so the presence of this must be ruled out before the diagnosis can be made. (Grubb et al, 2011) Treatment In addition to increased fluid intake and compression garments, it can be helpful to increase salt intake, but caution is needed when hypertension is present. Twenty (20) minutes of mild aerobic exercise ( in fresh air when possible ) 3 times a week has been proven effective. A fine balance of activity and rest periods can prevent hyperadrenergic symptoms and can promote healthy sleep patterns.(Grubb et al, 2011) There are many medications that have been effective in symptom improvement, however, there are no FDA approved drugs for the treatment of this type of POTS. The treatment is highly individual, which means some meds will help one patient but not the other. This can create a frustrating process of trial-and-error but often will lead to the discovery of the right combination. Some of the medications that have been found helpful are: Adderall, Ritalin Florinef Clonidine Beta-blockers (especially the combination of Carvelidol and Labetaiol) Midodrine SSRI/SNRI Modafinil Methyldopa One of the more significant findings in the treatment of hyperPOTS is the general observation that centrally acting sympatholytics (Clonidine, Methyldopa & others) and beta-blockers seem to work better to manage symptoms in people with hyperPOTS than patients with neuropathic POTS. (Grubb, et.al) Prognosis Hyperadrenergic POTS is often chronic and can be progressive. Some patients are disabled and unable to work while others are able to function with limitations. It has been shown that treatment is challenging since often the symptoms change or increase over time and medications may need to be adjusted or changed. It is important to note that most research into POTS and subgroups of POTS recognize the inherent problems associated with trying to narrow down the specific subtype. One of the most difficult problems is that the abnormalities seen in different subtypes are not mutually exclusive from other abnormalities. For example, a person with the norepinephrine levels indicative of hyperPOTS may also have QSART levels pointing to neuropathic POTS. Therefore, most physicians specializing in the treatment of POTS disorders focus on the specific abnormal findings instead of focusing on categorizing the subtype. (Vanderbilt) (Grubb) Have a question for our Medical Advisors? Please submit your question to webmaster@dinet.org Resources: Blair P. Grubb, Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Kanjwal Clinical presentation and management of patients with hyperadrenergic postural orthostatic tachycardia syndrome. A single center experience, Cardiology Journal, 2011, Vol 18 No. 5 https://journals.viamedica.pl/cardiology_journal/article/view/21202/16806 Vanderbilt University Autonomic Dysfunction Center Italo Biaggioni, David Robertson, Cyndya Shibao, Amanda Peltier, and additional faculty members, et al. Hyperadrenergic Subgroup and POTS subtype: Does it really matter?https://ww2.mc.vanderbilt.edu/adc/38938
  9. my mother had amyloidosis. She came down with it at 70 and she died 2.5 years later. I think it was light chain. It attacked her kidneys first. She also had multiple myeloma secondarily. it's been 24 years and the treatments haven't improved much.
  10. I saw this and thought they said the person had been having PT but that’s only for muscles. I would think that the person would have dys, definitely.
  11. Undifferentiated Connective Tissue Disease (UCTD). It’s a catch all diagnosis when some things come up positive but not enough of any one thing for a definitive diagnosis, at least that’s my understanding. In my case my rheumatologist calls it pre-lupus but also said that at my age if it’s going to morph into something full blown it’s more likely RA. I had more positive lupus antibodies though so I don’t know. I have stabilized on plaquenil and SCIG but I still get flares. I had been checked roughly every five years for thirty years for autoimmune disease and it wasn’t until 18 months post-pots diagnosis and the third ANA in that time that one came up positive.
  12. @JimL I agree with you about men. TTR Amyloidosis is also a concern. When men get this, it goes against consensus. Not saying it couldn't be the regular kind, but it seems more dangerous to me.
  13. Very interesting. NASA does a lot of work on this subject too. They refer to POTS as Astronaut's Disease.
  14. When I was working M-F 8 hours, I would always wake up with a fever around 100.3 on Wednesdays. Every Wednesday. I would be achy and faint when I stood up, so I was starting to miss work every Wednesday. This went on for months. I eventually had to stop working and now that I don't have to push my body like that, the fevers are less. It is real. It is dysregulation of your autonomic nervous system. My doctor STILL doesn't know what to call mine exactly.
  15. I use a cooling vest in the heat of Summer and keep the extra ice packs in the freezer so I have a constant supply.
  16. i think they need to figure out why you're having these symptoms. calling dysautomia is fine, but there are a lot of underlying causes that may be treated to make it better, some can't and what worries me is that being a male that got this older, I have to wonder if it's something more serious. Most people that get dysautonomia are women in their 30's or so it seems. I wonder what the numbers are in terms of sex versus underlying causes. I think guys are more likely to get it from PNS/carcinoid types of problems. That said, you've had this for 3 years. My only advice is have the doctors drill down on the cause and remain as active as you can without overdoing it.
  17. Thanks @Pistol!! A stress test was one of the first things they did with me (and then another 5 times...) but I’ve never had the nuclear version of it. So are you saying that it’s basically just a noninvasive version of an angiogram? Because from what you’re describing they both diagnose/rule out very similar things, just with that added element of “exercise” on the stress test. Like if a physician found an abnormality on a regular stress test I’m wondering if next step would be a nuclear stress test or an angiogram... I guess it can depend on the patient as well. I’m always too curious on the “whys”!! If I’m not mistaken, you were diagnosed with Printz Metal angina from your heart cath? Were you symptomatic at that time or did they induce an attack?
  18. I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. I will be following her story. I wonder if Dr Levine will too. B xxx
  19. I will bring up the autoimmune stuff to my specialist. What autoimmune disease were you diagnosed with if you don't mind me asking? Meds I currently take. Carvedilol, alpha lipoic acid, Lisinopril hctz, midodrine, Xanax. I think that's it.
  20. I get low grade fevers when I am flaring from over doing it and sometimes just for fun (ha!). I get the bad fatigue, malaise, aches, pain feel horrible. I felt this way for 2+ years before my autoimmune disease was diagnosed which was after my pots diagnosis. I still get this way if I overdo anything. My Drs and I believe my dys is autoimmune and I saw my first improvement starting meds for that. Keep asking for tests for autoimmune disease.
  21. I think the fact that your symptoms & functional capacity have improved over time, plus your young age are very encouraging in terms of prognosis. For those of us who are severe & chronic, the course is usually static or progressively worsens without remission (unless we find a new medication that helps for a time). I would definitely say keep exercising as much as you are able! I was very active prior to POTS & even since then have exercised nearly every day on a recumbent bike. Even if it doesn't make you better, it is good for your heart, lungs, circulation, muscle mass, sleep & mood & can help prevent complications like blood clots. B xxx
  22. I used to love the sun before POTS but have also been very intolerant to heat since. Luckily I live in Scotland where it isn't usually too bad. My little spray bottles of water that I keep in the fridge, cold pack for my head & fan are lifesavers. Funnily enough my hands and feet remain freezing cold, so on the hottest day so far I had my feet inside my electric foot warmer at the same time as dousing my face with water! For me I believe hypovolaemia is the culprit as we need an adequate blood volume in order to thermoregulate - hence uprights increase their blood volume naturally in the first few days when they travel to a hot climate, & athletes also seek to derive extra benefits from training in heat. B xxx
  23. I felt feverish and achy and body pain. Then my wife just woke me up because the car tire was flat. So I inflated it. Now I'm sleep deprived and nauseated lol. But yeah I get random fevers. Low fevers, nothing bad but I can tell I have a fever, aches. I can't remember if being out of the house for awhile is triggering this or it's random. I've felt horrible since my doctor appointment. Not just in the fever department. Feel like I'm recovering in the hospital somewhere.
  24. My body doesn't handle heat + humidity well. Heat by itself is okay, but not if it is also humid. It triggers all my POTS symptoms, and the only thing I can do about it is to minimize exposure by wearing a hat and a cooling scarf, and staying in the shade or air conditioning as much as possible. Bright sunlight also triggers something, too.
  25. I had a nuclear stress test years ago, and they told me to eat a greasy hamburger to help clear the isotope from my body.
  26. Dear @Heart4paws - unfortunately POTS symptoms tend to wax and wane and even can change or worsen over time. I have had POTS for 10 years and have been on meds since the beginning. I have found that my symptoms get worse over time and I need to increase or change/ add meds. I am currently on 6 daily meds for my POTS symptoms and this combination has developed over years. I see an autonomic specialist in another state and need to drive 8 hours to see him. He changes my meds whenever the symptoms get worse again. There is a list of physicians that treat dysautonomia patients under the physician section on this site. Most states do not have any specialists, so most patients have to travel quite a bit, but it is worth it. Unfortunately many of these specialists have waiting lists so I would check who would be an acceptable distance for you and ask your PCP to refer you as soon as possible ( if your insurance requires a referral ). Regarding the PVC's - my specialist told me that PVC's are a sign that the ANS is unbalanced - he called it my built-in alarm system. Although they are harmless I do take them serious since they frequently appear when I am experiencing a flare of POTS ( can be triggered by illness, over-doing things, stress, heat etc …) In the past increasing or changing beta blockers has helped at times. Compression stockings also can be helpful.
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