PotsieCrocheter

Dysautonomia International’s website: https://www.dysautonomiainternational.org/ Here is a chart from the Heart Rhythm Society on their “rating” of POTS treatments: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5267948/

I have a few more questions. Can your wife get to the washroom/bathe on her own? Can she change positions in bed on her own? Is she able to get out to the hospital/doctor’s? I became almost completely bedridden, except for those things. I would always have to lie down at doctor’s appointments/ER and recline in my husband’s car. I also used the word bedridden, but found it confuses the medical experts because I had no bed sores, etc.

@MTRJ75 Makes sense to me. After the Optometrist looked at my pupils, they were dilated enough naturally for most procedures. POTS effects so many things in our bodies, as you know! @JaneEyre9 That sounds distressing, I’m glad now that the Optometrists are being so careful. The optometrist is contacting my specialist for advice.

Thanks for the feedback, I didn’t think it would be a problem....Yet it happened again, the Optometrist said she was concerned that the drops could possibly affect the sympathetic and the parasympathetic nervous system and cause some kind of fight or flight response. She wanted to check with my Autonomic Specialist first, but she got a lot done because she said my pupils looked good for most tests. She talked so fast I couldn’t absorb it all, partly due to my slow upright brain. Thanks again.

A few years ago an Optometrist refused to dilate my eyes because I have POTS. I’m going to a new Optometrist today and would appreciate some feedback. Has anyone else had this happen?

Seriously, can’t find them in Canada, all I could find are strap on knee savers. If “My Pillow” can make millions (not interested in foam chips), your “burrito” style, strapless pillow has a chance (more useful for me).

🥴 + 🩸

@Pistol Your explanations are always so easy to understand, you don’t know how much I appreciate that. You can faint and/or have seizures, I really can’t imagine what you must go through everyday. Here’s my summary, correct me if I’m wrong: Autonomic Seizures: excessive vasoconstriction cutting off blood supply to the brain Neuro-Cardiogenic Syncope = faint: excessive vasodilation and sudden drop in BP vasoconstriction: tightening of blood vessels = increasing BP vasodilation: widening of blood vessels = drop in BP This poster is very powerful from the American branch of *STARS organization: https://www.heartrhythmalliance.org/resources/view/452/pdf *STARS: Syncope Trust and Reflex Anoxic Seizures Organization

You are very innovative! Come up with a catchy name and sell them, I wouldn't mind a “strappy pillow” myself.

Sorry that you go through that, it sounds very uncomfortable. I hope you can find some relief.

I only get it on my ears. Do you know if it is related to extreme sun sensitivity? When I use to get out more and spend a short time in the sun my skin would get blistery, red and burning on my chest, nose, cheeks, ears, arms, hands, and legs. Even with sunscreen! Once the rash developed it wouldn’t easily go away. It would get itchy too.

fight or flight...yes, tremors...yes, heart rate up to 162 bpm...yes, close to black out: don't let myself get to that point any more, syncope: NO (lucky me) very poor you 😪 @Pistol You’re like an expert juggler of multiple swords on fire, and if just one gets out of sink...🤬 BTW: When you say seizure do you mean syncope? When I think of a seizure, I connect it to the misfiring of the synapses (I had childhood epilepsy with tonic clonic seizures). It may be just a semantics thing. Thanks for explaining it all, and getting back to me so quickly, in house Nurse Pistol. I apologize for my ongoing brain glitches.

😨 Major Brain Fog Alert: I’m embarassed because my brain fog is so very evident on social media. 😨 Here I go again replying to people who aren't addressing me! I sometimes think things are in sequence, but not always the case 🤭 The shaded boxes confuse me too 😞 I put so much work in my reply, I’ll just leave it mostly as is. My hubby has been assigned as my social media assistant starting right now. Sorry, @TigerLily, panic attacks aren’t fun at all. I know. It is a complex thing for me that would take too long too explain. I’m 100% thrilled with my specialist!!! I’m not much into wanting a label as just getting better. I’m sure if I compare my symptoms and meds to research papers, I could easily figure it out. I’m very happy with his care, and he’s super smart. He was just “thinking out loud” when he said the two subtypes of POTS, like scientists do. Here’s a link to Vanderbilt on subtypes: https://www.vumc.org/adc/42008 Nasal drips: I use to, but it was more allergy related. (I can’t wait to learn what other people experience) Attacks: I don’t consider mine attacks. All/or many of my symptoms gradually increase and increase the longer I’m sitting or standing upright such as: sweating (sometimes just my feet or hands or head or a combo), everything gets blurry, poor ability to communicate and think, chest and coat hanger pains, out of breath, trembling, feeling like I’m on the brink of blacking out, etc. + all the symptoms related to orthostatic headaches with sensory auras. Prior to meds my heart would also get very high very fast and I use to get more bouts of high blood pressure too. I find a place to lie down before things get too uncomfortable. Anywhere is fine with me! My understanding is all POTS patients can have trouble regulating blood pressure. I think the epinephrine and nor-epinephrine levels can be much more elevated in your subtype? Does that also lead to the higher blood pressure @Pistol ? (I’m still interested in knowing).

Yes. @TigerLily I had it for many years and it cleared up with my POTS treatment. I don’t get as crazy high spikes in my bp anymore, as for low that’s a different story. I was in ER recently, for a possible clot (false alarm). The nurses were concerned at my low bp and made me wear a colour coded bracelet indicating a high risk for falls. I had to reassure them it was just part of POTS! Edit - wanted to convey that you are not alone with bp problems (sorry if it seemed out of place).

@TigerLily Very sorry you are going through this, all the best. You finally solved my mysterious “flaming” red ears, thanks.