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? 

On 7/22/2020 at 1:36 PM, RecipeForDisaster said:

Pillows strapped to my feet help, I stitched the edges of the pillows together

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). 

🥴  + 🩸

3 hours ago, Pistol said:

@PotsieCrocheter - my seizures are called autonomic seizures. They look exactly like a grand mal seizures, but are not epileptic. They are caused by excessive vasoconstriction cutting off the blood supply to the brain ( this was caught in an epilepsy monitoring unit while hooked up to both EEG and heart monitor.  It's essentially a severe form of fight-or-flight ... I faint "normally" too, but that is caused from excessive vasodilation and sudden drop in BP ( neuro-cardiogenic syncope ). 

@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.

My autonomic specialist says he doesn't like labels. My overall impression is that he believes POTS patients can fall under more than one category and each requires individualized treatment. I know he mumbled at least two categories of POTS for me when he first saw me, but I just can’t remember which ones. He doesn’t even talk labels with me anymore.

All I know right off the bat, he knew the exact meds, salt, water, compression that I needed and I’m ever so slowly improving. I can’t argue with that! I just wished I listened to him about compression garments sooner, stubborn me 😣

21 hours ago, Pistol said:

@PotsieCrocheter - if you have an Instapot it's sooo easy!!! I fill the pot with water, loads of veggies and - if on hand - chicken or beef scraps, icluding the bones.  Close the lid, set to 30 minutes on high ( or the soup setting ) and voila!!!! - wonderful, delicious, healthy broth. I save all of the trimmings from veggies all week and stick them in the freezer until I need more broth. And you can add all the salt you want!!!!! 

We actually have an Instapot, I’ll see if my husband will make some for me. It sounds delicious and super easy, thank you! My Autonomic Specialist said to me on my first appointment, “I hope you like salt”...to this day I’ve never once complained!!!

On 2/3/2017 at 7:21 AM, MomtoGiuliana said:

Maybe this does not fall under this category, but I find that coconut water works better than Gatorade or other rehydration drink when I need more fluids.  I don't use it every day but I keep it on hand for days/times when I feel poorly.

I’ve heard good things about coconut water. It seems like a healthier alternative for rehydration than sugary drinks or electrolyte pills. I’m going to give it a try, thanks. So many of the other things I like such as ginger and lemon. Bone broth may be a challenge to make, can you use health food store broth instead? 

I love my magnesium too and Vitamin D for my northern climate. 

@HeavenBound I’m sorry to hear you’re having a flare, I hope you can get back to where you were soon. I would be very interested in what worked for your recovery? 

I’m so glad I asked!

R: I had no idea about weighted blankets working like compression. It now makes sense, thank you. I agree, the shower or bath and electricity might not be a great idea. 😳 I take baths, it’s far better than the shower. It leaves me so exhausted and especially washing my hair.

Those 30-40’s look like their made for toddlers, and the energy required... The water sounds great for the odd, super hot day in my country. My body just doesn't know what it wants from one minute to the next, I change clothes and covers all day/night long.

P: I’m so sorry you can’t use compression, my brother has Raynaud’s, so I can just imagine what a bad combo it would be. I also use the exercises (especially the one with the gluteus maximus!!!) I haven’t done it as a preempt to a bath, I will give that a go. I agree, lukewarm is best. Thank you.

Hi everyone, I tried mine for the first time recently and also loved them too. I’ve been wearing them around the house a wee bit too. Mine are 20 - 30 mmHg and I’m wearing one that is “almost needing the next size up fit” so they are on the snugger side. I tried the 30 - 40 mmHg but they made me feel overheated for some reason. I may give them another go in the future, because they’re what my specialist prescribed. 

Has anyone heard of compression stockings, preferably thigh high, for bathing/showering? It’s the most difficult tasks for me. I bought a shower stool and still found it too difficult to shower. I’ve tried every trick in the book for POTS/ME/CFS. (cooler water, time a day, extra hydration, meds, salt, rest). Any other things I’m missing? 🥴 

Oh yes, been there done that! 

Oh no, what happened? 

I will keep that in mind, thanks. I have small ears anyway, but most importantly I will remember to take out my hearing aids! 😬 

Thanks for the link, it’s very reasonably priced too. It comes with the usual warnings, like check with your doctor, etc. This manufacturer sells lots of TENS “add ons” and electrode replacement pads, TENS units, etc. I bought mine from a physiotherapist, but these prices are impressive.

Thanks for your hard work researching and finding/sharing this. I took the DIY so literally (asking clarifying questions is a much better approach than just jumping to a conclusion - my bad).