CJ65

Hi @Knellie yes elevation is a bear for me, you are not alone. Its also hard for some people with no other health issues. I get some of the symptoms you describe when I go to Tahoe (6000 ft) from Bay Area. 10,000 feet is way up there! People who live at higher elevations adapt to that environment over time and develop higher levels of hemoglobin and number of red blood cells (hematocrit). The body also gets better at hanging onto oxygen in low oxygen environments (oxygen dissociation). At sea level we breathe 21% oxygen and at 10,000 ft it is equivalent to about 14%. It is no wonder that your saturation was lower. The bottom line is you need time to adapt and work your tolerance up slowly. The good news is once your body adapts and you have changes to your red blood cells those effects last and your RBCs have “memory” as long as those cells live which is about 120 days. This info is available in many reputable places online. I have used research from The University of Colorado when I taught about oxygen carrying capacity for the fetus and newborn. Lots of good research there. I’d love to know more about your nose issue because in the last few months mine also runs uncontrollably on right side when I’m upright and active, it isn’t allergies. What the heck is that??

Fantastic letter. I saw Dr Biaggioni and send him questions from time to time which he or his NP answer. Have you asked them about Northera? I’m sure they could give great input. Best of luck

@racingheart77Are you talking about Takosubo syndrome? I teach/taught about this in regard to grief. It is a documented form of cardiomyopathy. I have not heard about this for POTS patients in general. This may be a trigger for anyone experiencing loss but I will provide an example. My friend lost her newborn son. She knew he had a lethal condition before he was born. After his death she had chest pain and her arms hurt for months. She had Takosubo syndrome. One day they were planting a tree for him and her dad handed her the pot with the tree. It weighed about 8 lbs. Suddenly her arm and chest pain went away. She was literally aching for him. She created a program called the Comfort Cub which are weighted bears that moms could hold and take home so their arms aren’t empty when they leave the hospital. They are now used for all kinds of grief and trauma. So Takosubo is a very real manifestation of grief.

@CallieAndToby22 I’m so glad you are feeling better (at least from the vaccine standpoint)!

@MTRJ75 I love your questions and the way you group the possible mechanisms of action. I am an example of actual physical damage leading to POTS. During my cervical spine surgery my 9th cranial nerve -the glossopharyngeal nerve was damaged. This nerve ennervates parts of the throat, posterior tongue and carotid baroreceptors among other things. My efferent (motor) pathway coming from the brain works so I can swallow etc. It took 2 years for me to realize that I had no gag or feeling in my right throat. A scope showed my afferent pathway was damaged. The same pathway that comes from baroreceptors back to the brain. My brain thinks I’m bleeding out so it throws sympathetic NS into overdrive. It’s not baroreflex failure but definitely impairment. So when people tell me I can rewire my brain I want to know: if the nerve is cut and hasn’t started working in the last 5 years how the heck can that be rewired? I don’t believe it can. And so I slip into the acceptance that this is as good as my health is going to be: limited, chronic and I try to find joy and hope where I can.

Yes. My pain is more inflammatory in nature to joints and pretty bad myofaschial pain to upper back. Definitely worse after sitting and when I do too much. POTS and all of my issues started after cervical spine surgery. Unfortunately I still had pain in my neck and arm post op plus the new added hyperPOTS bonus. I have tried all the pain modalities with some relief that makes it bearable for the most part. That includes: mindfulness, ice, heat, acupuncture, massage, trigger point injections, epidural, TENS unit, foam roller, Qi Gong, yoga, PT, cymbalta (I had very bad serotonin syndrome reaction and horrific withdrawal before I knew I had hyperPOTS), NSAIDS (can’t take anymore because of my BP), Gabapentin etc etc. What helps me most daily is gentle movement (my PT says “motion is lotion for the joints), resting as needed throughout the day (if I push through fatigue and don’t rest all of my body hurts-listen to your cues), and when it gets worse later in day I often take Tylenol or Tylenol with codeine. I’m not advocating for opioids in general but I've been taking the same low dose for a few years now without a problem. Probably the most helpful thing was early retirement/disability. I fought doing that for 3 years because I loved my career but in the end it was the best thing to do for all of my symptoms.

I have Hyperandrenergic POTS and I had Pfizer. I expected the worst and except for a little extra fatigue and a sore arm I was absolutely fine.

I take 5 mg THC indica edibles to help me sleep through the night. It is legal in my state (CA). I haven’t noticed any relief with plain CBD although CBD/THC combos do work for me. The great thing about dispensaries is that you can talk to the “bud tenders” haha and tell them what your issue is, tolerance level and desired outcome and they will help find the right product/strain for you. It’s trial and error. I do love seeing the clientele in the dispensary: all ages, all health levels.

@tandori you are absolutely right about newer data showing that masks help. I spent my career in an academic medical center nicu where we told staff and visitors that if they were sick enough to ask for a mask then they shouldn’t be there. That is still true. We 100% wore/wear masks to protect patients in sterile/surgical settings. And we do wear them when we know the patient has a documented infection. We believed that mask wearing in general can give a false sense of security. Masks get damp/wet with normal breathing and we always touch the masks to adjust them then go touch something else potential spreading bacteria/viruses. Hello hand washing! There really weren’t any studies on global pandemics but now we have data on millions of people and we know that masks and social distancing work. Look at the low number of colds and flu last season. I’m with you, I will still wear masks especially during cold and flu season and to protect myself and my family from variants. POTS and illness is a bad combo.

Great news!

@Amyschi mostly lips

Hi Muon I came across this article from last year by Dr Miglis at Stanford. Is Postural Orthostatic Tachycardia Syndrome an Autoimmune Disorder? And Other Updates on Recent Autonomic Research https://link.springer.com/article/10.1007/s10286-019-00661-5#citeas Not exactly summer reading but very interesting. There is some discussion about specific andrenergic receptors and clinical significance/expression.

I get it if I really push myself physically. Thanks for bringing it up, I thought I was the only one!

Hi @CDNPortGrl I should have clarified that the post spinal pain is all headache, caused by leaking csf from the puncture site. When the normal pressure bathing the brain in csf drops = wicked headache. It’s not supposed to happen with epidurals but sometimes it does.

That’s great to know @Pistol. I do allude to long haulers when I explain what POTS is to family and friends. Even my closest people’s eyes glaze over when I try to explain my illness but now that most of them have read about long haul Covid they seem to understand now that healthy people can turn into chronically ill people in a flash.

@CDNPortGrl when you had the blood patch was it because you had terrible headache after spinal anesthesia? In my limited experience being around post partum women with blood patches (I’m NICU nurse), it seems like that type of leak reoccurrence would cause pain. Is that correct?

@Pistolthis is very interesting. In addition to my regular POTS dizziness I get waves of vertigo lasting a few days at a time. When I mentioned it to my autonomic neurologist on Zoom he said “vestibular migraine” and just like that it was in my chart in my list of diagnoses. I’m so glad you brought this up because I want to know more about migraines with POTS, too

@dancer65 it’s so good to hear some good news! What a windfall to have a practitioner who understands POTS and to get some relief from the adjustable bed. Thank you for sharing

Ok got it. The catecholamine tests are very hard to get right at lab. The first time I had them drawn I talked a very nervous nurse through how to do it and thought we were golden…until I found out she put it in the wrong tube! Waiting to see an autonomic specialist feels like an eternity and IS with the backlog, hoping you get some answers and relief soon. I’m guessing by your low BP that an alpha agonist may not be what you need so I apologize for suggesting that. The good news is there are so many things still to try.

@CallieAndToby22 gosh that sounds so awful! Forgive me if you already said this but have you had catecholamine levels tested? I can’t remember if you said you have hyperandrenergic POTS but those surges you mention are common with HPOTS. And have you ever been on one of the alpha 2 agonists like Clonidine or Guanfacine? They are so integral to controlling adrenaline/noradrenaline surges for me personally. Other adrenal work up might involve a urine VMA test, imaging your adrenals to rule out pheochromocytoma etc but maybe you’ve already done all that when you were first diagnosed?

@toomanyproblems and @Pistol Wellbutrin is neither SNRI nor SSRI. It’s in a drug class called: aminoketones. Maybe that’s why we can tolerate it better than straight SNRIs?

I can’t live without Guanfacine for my HPOTS. I tried Clonidine first but it knocked me out. Guanfacine is less sedating but still adds to my tiredness. At one point I took 2 mg at night and 1 mg during the day which helped with daytime sleepiness, but I’m back to 1.5mg twice/day. It didn’t help get my heart rate down so I take propranolol for that. There is a hyperandrenergic POTS group on Facebook that I found very helpful, lots of posts about Guanfacine. @Elizaangelica good luck!

@Elizaangelica we see you, we hear you! I ask myself the same questions every day. Is this really as good as it gets symptom-wise? I remember my autonomic specialist telling me that I would improve. In my mind that meant a return to my previous level of health but that is far from where I am today. I’ve learned to honor the small “wins” like having a day with my BP and HR in relative check, or having enough energy to play with my grandson or run an errand outside the house. Some days getting dressed is a win. And some days I’m just mad at my limitations. I was reminded this week that I can’t push my body or I will pay. I was feeling ok and got cocky-I had one activity every day (dr appt, friend visiting, etc) I pushed through and didn’t rest enough and now I have an infection. One step forward, two steps back. I do/did get improvement in some symptoms with the right med regimen, when I took an early disability retirement and when I listen to my body. Counseling,meds and mindfulness help my mental health and sometimes only a good cry will do. And communities like this to remind us that we are not alone ❤️

@Bobannon @Pistol @p8d wow this a lot of great information. I was also just diagnosed with NAFLD which seemed to come out of the blue and I have chronic joint pain made worse by activity. I don’t mean to go off topic I just want to thank you all for mentioning this. It seems like I spend all my time getting HR and BP in check and the other symptoms take a back seat. This info will help me to initiate a discussion with my medical team.

Hello @SnowBird312 and welcome! Finding the right combination for relief can take some trial and error and we are all so different. I have had good luck with beta blockers in combo with alpha 2 blockers (first clonidine then guanfacine). I started with Labetalol for 2 years which helped with my hypertension but I stayed in the 100-120 resting HR range. Last year I switched to propranolol which really helped bring my HR down to resting in 70s-80s. Are you able to contact your POTS specialist before your next appt? If you have a primary MD, are they comfortable changing meds? If not maybe they can coordinate with your autonomic team.