Karen Elaine

I also developed seasonal allergies for the first time after developing POTS in my early 20s. And my POTS, asthma, EDS, MCAS, anxiety / panic attacks, fatigue, and pain are all at their worst during the spring and fall allergy seasons. As others have also mentioned, as soon as I realized how the various body systems are intertwined, things started to make so much more sense!! Knowing what is happening in my body and having a protocol to follow really helps to decrease my anxiety and get me through the panic attacks a little better (typically my horrible asthma / MCAS attacks will turn into panic attacks). My current strategy is to: (1) avoid triggers as much as possible-- wearing a mask when outdoors or when I'm in a place that will trigger my allergies / MCAS (fragrances, dust, smoke, etc.) -- using an air filter inside -- I also just returned from a beach trip, where my allergies /asthma were all but gone (this has happened every time I'm there, and I'm glad our family vacation often coincides with the worst of the fall allergies where I live) (2) increase my allergy / mast cell medications-- Xyzal, Allegra, Cromolyn, Albuterol (as needed), and beginning to add more under my allergist's guidance, like compounded Benadryl and Pepcid and other prescription emergency meds. She has worked with me to create protocols for both maintenance and for the different levels of reactions I have. (3) nervous system work-- of everything, this has been the most beneficial across the board for all my conditions. It's one of the things that has really helped get my POTS under control over the last few years and helps decrease my panic response to symptoms when they come up. Specific to allergies, this can help by reducing the nervous system's response to stress (the allergens), aka, building resilience. And I've realized that working on any one condition will help all the others! Both by reducing the amount of total stress on my body, and because all the systems communicate with each other-- if one's freaking out, the others will too. And vice versa, any little thing we can do to better one condition can have a beneficial effect on the others.

My Vitamin D has been chronically low for years despite supplementation. However, I did have to have my gallbladder removed, and am now low in other fat-soluble vitamins as well, and we are assuming that this is the reason for the low levels. I also don't get as much sunshine as I should...

I agree that all of this can 100% be Dysautonomia due to the fluid shifts and adrenaline surges. But also wanted to point out that many of the exact same symptoms that we normally attribute to POTS, such as palpitations, tachycardia, nausea, flushing or feeling warm, drowsiness, etc. can also be caused by MCAS. The ANS and mast cells affect each other quite a bit. And since some degree of MCAS is commonly seen with POTS, it might be worth noting. Personally, many of my post-meal symptoms did not improve at the same rate as the rest of my POTS symptoms, and only improved once I began addressing my MCAS.

This is a great question, and is actually one of the things my PT (POTS rehab) asked me regularly so we could gauge my progress. When I began rehab (Dec. 2021), I was on my back almost all day. Simply sitting up in bed would cause a huge adrenaline surge with the accompanying symptoms, most notably brain fog, shortness of breath, and tach. So my total sitting-up time was less than an hour a day (basically, only while I was eating). My brain fog was so severe I could hardly think even lying down. Now, I can sit up (with my feet up) all day long with some exceptions. If I've gone out that day (dr. appt, walking, etc.), I have to lay down for a few hours, due to shortness of breath and full body pain (I also have hEDS). I'm also able to work or study all afternoon and into the evening (mornings are still slow). I'm still unable to be fully upright (standing or walking) for very long-- 20-30 min max if I'm moving, less if I'm standing still. I use my recumbent bike 30 min x2/week, and can walk almost a mile at my local rec center x1 most weeks. I also do some isometric strength exercises most days. It can be slow going, but I'm so grateful for all the progress I've seen over these past few years!

Hi! I get sleepy/drowsy after meals too, but I usually feel overheated with it, not cold. Do you or could you try eating smaller meals more often throughout the day? That's usually what is recommended to help with symptoms after eating, so you may have already heard this one!

Hi @KiminOrlando. I got these tests through my functional dr who is also an internal medicine MD. I don't think there are many tests for these antibodies-- the one I had done was by Cyrex, the Array 3x Wheat/Gluten panel.

Maybe try one with a lower sodium content? Also, do you drink it all at once? I find I can tolerate it better if I put my 1,000mg packet in 30 oz. water and drink it over the course of a few hours. I've had success with Liquid IV (500mg) and LMNT (1,000mg). I do well with SaltStick fast chews too, but they're pretty low sodium-wise.

Yes, my symptoms are worse during hot weather/high humidity even when I'm indoors in the AC all day. I get very short of breath and fatigued, as well as just feeling worse overall. It didn't make sense to me either-- why even though I was inside, the weather still affected me. What I've found in my reading is that both higher levels of humidity and lower barometric pressure can lead to slightly lower oxygen concentration in the air (so our lungs have to work a little harder to extract it). And heat, as we all know here, makes it even more difficult to regulate body temperature. I think it makes sense, though, that it's difficult for our bodies to adjust to even small changes in our environment, as it is the autonomic nervous system that is responsible for making all those necessary adjustments. The effect of atmospheric pressure on oxygen saturation and dyspnea: the Tromsø study : "The respiratory system is influenced by weather conditions (Celenza et al. 1996; D’Amato et al. 2013; Ferrari et al. 2012; Michelozzi et al. 2007; Qiu et al. 2013; Spence et al. 1993; Tseng et al. 2013). In a study of 25 million ambulatory visits by COPD patients, temperature, wind speed, air pressure at sea level, and humidity had a significant influence in 1–2% of the ambulatory visits (Ferrari et al. 2012). The weather is for a large part determined by barometric pressure (Barry and Chorley 2009). When the atmospheric pressure is decreased, the oxygen saturation is decreased as well (Horiuchi et al. 2018)."

I know there are several threads about gluten sensitivity, but I'm curious if anyone else has been tested specifically for TtG-6 (tissue transglutaminase-6) autoimmunity? I know many cases involve autoantibodies in the GI tract (TtG-2) which is the cause of Celiac Disease, but I have autoantibodies to tissue throughout the brain and nervous system (TtG-6), associated with Gluten Ataxia. Many symptoms of this disease overlap with Dysautonomia (pain, dizziness, brain fog, imbalances while standing and walking). I removed gluten completely from my diet, and was surprised at the rapid improvement in brain fog, foot pain, and dizziness (I had been having severe brain fog and foot pain/numbness to the point where it was difficult to walk). It's been over 6 months now, and these symptoms are continuing to improve! I'm wondering if this is one of the underlying factors in my POTS, and wanted to see if anyone else has had a similar experience. I have started other interventions and PT recently, and know they are also contributing to my general improvement, but these symptoms seem to be directly related to the gluten.

Thank you! I've definitely seen this in myself. I live in NC, so there are a lot of thunderstorms and consistently high humidity levels. My worst symptoms happen leading up to and during storms as the barometric pressure drops. I get extreme shortness of breath and chest pain / tightness, which is scary, until I go check the weather to reassure myself there is a reason for it When I check my vitals, there is usually a correlating drop in SpO2 (sometimes down to 88-90%), though BP and heart rate usually stay at my normal. I've never been able to show this drop to my care providers though, and my lung function tests are always normal. Does anyone else get chest pain with storms? And if so, have you found anything that gives relief? I do have an albuterol inhaler (don't have asthma, it's just in case for the random times I have trouble breathing), but really don't like to use it as it spikes my heart rate / adrenaline. My dr. thinks I have mast cell issues (multiple new reactions to food, drugs, chemicals, etc. over the last two years), and I'm wondering if there may be a connection, since the reactions and sensitivity to pressure changes started at the same time...

I have Hyperadrenergic POTS too, and this happens to me every time I stand up. I can totally relate to having to fight off that feeling of panic to not make it worse! I also had catecholamine testing during my tilt table test that confirmed an epinephrine (adrenaline) spike upon standing. In addition to what @Pistol recommended, I've been in a physical therapy program for POTS the last 6 months, working on strengthening my lower body and increasing standing tolerance, and it really has helped with the standing symptoms quite a bit. I can still only stand static for about a minute and a half before getting the chest pressure and shortness of breath, but if I'm walking, I can go quite a bit longer, thanks to better circulation. I've also found that feeling of adrenaline (shaky, anxiety, shortness of breath) to be much less after a PT session as well, so the exercise might be helping to calm down the nervous system, though I don't know the mechanisms at play there

Hi @bookworm818 1. My low BP improved once I upped my salt intake. I didn't have hypotension though, it was just all over the place, always dropping and spiking. I drink powerade zero and other electrolyte drinks all day, and that seems to help things stay more stable. 2. Same as what @Pistol said above... Just about anything outside of a perfectly calm day can trigger a flare for me😂 My biggest triggers are any kind of stimulus (crowds, movies or loud music, sugar,...), or pushing myself too much. 3. My shortness of breath feels the same-- just can't get a deep, satisfying breath. Most of the time it happens when I'm standing up, talking, or have been sitting up for a while. For me, just laying down usually gives relief, and if I don't do that, I'll typically go into presyncope. Sometimes though, it's caused by my meds, in which case I just have to wait it out and not panic.

I have had several asthma-like attacks (though not officially diagnosed with it yet) and, yes, some types of B-blockers can be very bad for that. The non-selective (such as propranolol, which I was on until just recently) are the worst, as they can constrict the bronchial tubes. I was just switched to metoprolol, which is cardiac-selective, and have had none of the airway constriction with it. I've only noticed minor side effects (drowsiness, etc.) and am only on a tiny dose, but it works really well to keep my HR down.

Thank you! -- yes, my prescription would be for 30mg x3/day (pretty sure that's what it was). Haven't picked it up yet...

@PistolThis is very helpful information- thank you so much!! Those are the things I've been confused about with hyperPOTS-- my symptoms line up with that more than with the other types, but the lower BP and symptoms of both vasoconstriction/dilation didn't make sense to me. So you can have both sides of it with this type? It's reassuring that this medication has helped you with similar symptoms. And I'd be starting on the low dose of 30mg/day too. Yes, that is interesting that it stabilizes things for you when you think it would make them worse... it makes me more comfortable giving it a try.

Hi! I take a multivitamin to cover the bases and add in extra VD (I'm usually deficient), VC for immune support, a probiotic that also has zinc and other gut support, Circumin for inflammation, and magnesium to help me relax and ease my chest pain. I also drink herbal teas like Throat Coat, ginger, peppermint, and chamomile. I've tried other things over the years, but these are the ones I've stuck with

New findings and question... So my symptoms have been escalating over the last few weeks, I think maybe due to spring allergies... I passed out after taking meds, ended up in the ER, and have been in a flare since. It's pretty clear now that my beta-blocker (propranolol) is causing some or most of my bad episodes of chest pain/trouble breathing. So I'm currently tapering off of that. Also being evaluated for the possibility of mild asthma or some other airway problem (Albuterol helps a lot for attacks, but I can't take the steroid inhaler because of side effects). My cardiologist wants me to try a calcium channel blocker (Diltiazem) to help with tachycardia/chest pain and he is referring me to a local POTS specialist. After research (and reading here in the forums ), I think I'm comfortable giving the CCB a try, but am somewhat concerned about the side effects of vasodilation. I already have blood pooling and low/normal BP with some days being slightly elevated. Any thoughts on this are welcome! Also, does anyone here have experience with asthma and POTS? I've never done well with steroids, so am looking for other options to manage it. Thank you!

Thank you @Ashleigh for the feedback and recommendations! I'm glad you found some things that help your pain. I can't take anti-inflammatories now, but they did help me too when I was on them. Yes- I have noticed that it's much worse whenever I'm in a flare or other situation that makes me tense. After having further evaluation and testing over the last few weeks, I'm pretty sure there is more than one thing causing my chest pain, so that would make sense that not all my symptoms will fit into one category.

Thank you, @Pistol! I'm pretty sure I have hyperPOTS too (just can't get anyone to actually test for and diagnose it), but, yes, it does sound different. I actually haven't spoken directly to my surgeon-- maybe that's something I should do though. I definitely have GI issues and chronic pain related to not having a gallbladder now, and I have followed up with my GI since surgery. I've had chest x-rays, CT scan, barium swallow, endoscopy, breathing tests,... so I feel like they have been pretty thorough. I do have acid reflux and gastritis, but the reflux is pretty well managed now - that's actually what my pulmonologist thought was causing my chest pain when all the tests came back clear. They haven't found anything else so far, and so just put it all down to POTS for now.

Hi! I've had POTS for several years now, but more recently have been dealing with episodes of severe chest pain. They actually started just after having my gallbladder removed in 2019. So I started having constant chest pain/tightness about a month after my surgery (dr thinks that may be costochondritis), but then I also have these times where my chest starts going into spasms and I feel like I cannot draw a breath in. The tight crushing pain starts below my right ribcage and quickly moves all the way across my chest then up to the center. Feels like there is a tight band wrapped around my chest and the pain also radiates to my back. It comes in waves -- it'll be really tight, then ease up for about 15 min, then repeat this for an hour or more. I can't lay down as that makes it so much worse. My vitals (BP, HR, and oxygen levels) are always stable during an episode. I've been to the ER, but they never find anything. Also have seen a pulmonologist who ran several tests and did a breathing assessment. I've treated my acid reflux/heartburn and improved my diet to avoid known triggers. My dr. told me that as long as my vitals were normal, I should be fine not going to the ER for this. All my drs at this point think it is simply related to POTS. So I drink some hot tea, take magnesium, and use my heating pad to try to calm things down and help me relax. As far as triggers go, there have been so many, it's hard to find any real connection. The first few times it happened, it was definitely a reaction to OTC NSAIDs, so I've had to stop taking those. Being out in the heat will trigger it. Also drinking carbonated beverages, which is kind of weird, and sometimes strong smells like perfume, hairspray, or chemicals. Another thing is that it was happening every few months or so, then I went on a prescription anti-inflammatory for other issues, and it stopped completely. Then I developed gastritis early this year, had to stop the prescription, and everything has come back much worse this time- it occurs almost every other week now. Anyway, I know chest pain is very common with dysautonomia, but just wondering if anyone has had similar experiences with this type of chest pain and symptoms?? Thank you!

Hi @Alicat_326 , I used to have very similar symptoms to what you describe (especially the pain!) and mine ended up being endometriosis plus POTS. For me, they both came on together, so it was very difficult to sort out which symptoms were from what. That was about five years ago. I was able to see an amazing endo specialist and am now in remission with very few symptoms from that. However, my POTS is still an issue and does flare up during my periods, which I think is pretty typical. All the best to you and I hope you can figure out what is causing your symptoms and get some relief soon!