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  2. If anything my temps are below normal, especially in the morning. 96.8-97. Sometimes it goes up to 99 after dinner. I don't know why and it's only after dinner and not all the time, only once in awhile.
  3. Mine was inconclusive because I couldn't finish it. My heart rate went too high too quickly. It's what cued the doc into this deal. After that he ordered the TTT.
  4. Today
  5. I'll find out about heat soon enough. Summer is about upon us and it's my first summer with this stuff. I hate the heat as it is.
  6. I've had some. I have tinnitus all the time anyway, have for decades. One thing I have from time to time is patulous eustachian tube.
  7. I've had dropping problems, but it was from cervical issues that affected the brachial plexus.
  8. No problems falling asleep, but problems staying asleep. I go stretches where I wake up at the same time, usually 2:30-3am. It sucks because I usually can't fall back asleep or if I do, I have to wake up in a hour and I feel even worse then.
  9. I've had something similar, like a brain fart/stutter. Very disconcerting. I thought, am I having a stroke?
  10. At least you have a doc that takes you seriously and wants to find out what the story is. That counts for a lot.
  11. I still feel a fever. It's like it comes and goes. It's back.
  12. Yesterday
  13. Well, goodness. Went to the Internal Med Doctor yesterday with a picture of my flushing episodes, my complaints of headaches, dizziness, and cognitive issues in light of drastically decreased tachycardia. He is still convinced that a Carcinoid is in there somewhere. Ordered about 15 blood tests (just got 17 vials drawn), an U/S of thyroid, MRI of liver/pancreas, and a consultation in Minneapolis with a NeuroEndocrine Tumor Specialist. Eek. Where is the Ativan?
  14. 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.
  15. 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.
  16. @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.
  17. Kim - that is so weird!!! I never heard of anything like that! Have they found anything auto-immune with you?
  18. @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.
  19. 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
  20. 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.
  21. 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.
  22. 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.
  23. @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.
  24. Very interesting. NASA does a lot of work on this subject too. They refer to POTS as Astronaut's Disease.
  25. 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.
  26. 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.
  27. 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.
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