PotsieCrocheter

I’m very happy it’s working for you and I’m sorry I misunderstood, I didn’t realize they were “add ons” to your device from the manufacturer. I’ll check with my doctor, and if its okay I’ll see if my device has an ear clip too. Very innovative. Obviously they would come with the manufacturer’s warnings and instructions, so they would list all of the conditions that could pose a problem. So I’m fine with that for sure.

Yes, for POTS in adults the heart rate must go up 30 bpm within 10 minutes of standing in the absence of orthostatic hypotension. You also have to have some orthostatic symptoms like light-headedness, brain fog, shakiness, pounding heart beat, etc that worsen when upright and get better when laying down.

I did a bit of research on using ear clips with a TENS device. It shouldn’t be used if you have a history of cardiovascular problems, electrical heart implants, cochlear ear implants, trauma to the ear, open sores, facial or ear pain and the list keeps growing. The scientists/doctors who do research on this have long exclusionary lists of conditions that can’t participate in research. I also read you have to keep the TENS at a specific frequency or it can be problematic. I personally don’t like the concept of altering any medical device. I’ve been told never to place TENS pads on or near the the head, the proximity to the ears sends red flags to me, especially for a DIY project.

An example of just one of my underrated treatments is: When I spent a lot of time horizontally I was told to sit up every 30 minutes to help reset my body. (In addition to my many trips to the washroom because of my crazy bladder). I actually became competitive with myself and tried getting up even more often. I was then told to add to my routine by sitting up for a stretch of 30 minutes, once a day. I can now putter around the house more and more, go to doctor’s appointments way more comfortably, especially now with my 20 - 30 mmHg compression hosiery. I walked up to my last appointment at the hospital instead of using a hospital wheelchair. (I still crashed for a few days). It was very, very uncomfortable to achieve, but I’m very glad I did it! I’m not going to let gravity win.

Yes, for the past six years after C. diff and Meniere’s. I get pressure in my ears sitting and worse when standing and my permanent tinnitus gets louder. It feels like my ears are full of pressure. I use to have a high pitched permanent ringing, but after Meniere’s it changed to a fairly loud fan with wooshing sounds intertwined.

I hope you can find more function and progression. Warmest thoughts go out to you from me. It’s obvious that you are resourceful and not afraid to reach out to others and that shows a lot of strength.

Only a person with POTS and/or ME/CFS wouldn’t question why putting on compression garments could take so much energy! 😩 I totally relate to severe fatigue, I live with it as a constant. I wait to do things when I’m a bit less fatigued, but the fatigue is always there. It gets even worse after doing everyday, very basic things and for days after doctor appointments. (I have POTS and ME/CFS, etc). I’m sorry that lately you’ve been so fatigued to even talk or move. My autonomic specialist told me six months ago to sit upright as much as I can, instead of lying down as much. He said when he first met with me that he would prefer me reclining in a chair while resting/sleeping during the day than lying flat. I understand it helps the body get used to gravity and react less badly to it. I’ve found this advice very challenging, yet it’s very slowly paying off. I’m now more comfortable sitting upright for longer periods of time. BTW: I initially learned to crochet horizontally. When I was even more severe (prior to treatment) I did 60’s style black velvet colouring with felt pens and kids sticker books in bed. It took the least energy of other creative things I attempted along the way. They were very tactile, something that tablets/iPads lack.

@Clueingforlooks I too tried anti-nausea meds orally and through IV and I just got loopy and dizzy. The only thing that helps me (if you can believe it) is Mango flavoured Chimes Ginger Chews. For mild nausea sometimes I replace some of my table salt for a saltstick Zesty Lemon Lime Fast-chew. It really is that specific with the flavours, I’ve got it down to a science! 😀 I’m sorry you have so much nausea and that it affects your rehydration. I’ve found keeping super hydrated so important in POTS. I had nausea so badly before I got headache and POTS treatment, and when I had bouts of Meneire’s (rarely now). I just tend to get positional vertigo these days. On a bit more positive/different topic: I got my BOTOX treatment by my neurologist today for my headaches and I finally found the energy to put on my compression thigh-highs, and they helped. I could never come home and think straight like I am now.

I’m so happy for you! That is good news!

Waiting for results can be nerve racking. You’ve provided examples of how your cardiologist is taking some forward steps to try to figure things out, that’s a positive. Hang in there and go easy on yourself. I’ve had that feeling of letting people down too. After spending half of my life with varying degrees of chronic illness, my family still assures me that I haven’t let them down and that I’m as important to them now as when I was perfectly healthy.

I’m on the typical pots meds, a bit different than what you listed. Plus salt and water and some SaltSticks as prescribed. I’m not comfortable disclosing the exact ones. I did get the impression from a medical journal that one of them could help with reflux, but I’m no expert in interpreting medical research papers. I hope you and others can eventually find something that helps with reflux. I’m sorry that you deal with gastritis too. I read it can cause nausea? I can’t imagine it added to the nausea POTS can cause when upright, that’s like a double whammy. My IBS is still out of control, but I reduced the extreme bloating by restricting gluten and milk (yogurt, aged cheddar, quinoa, and oats are fine for me). BTW: my blood pressure fluctuates a lot too. My specialist told me not to worry about it so much, after I showed him the range. That’s just my experience, but other patients might be under the advice to check theirs. I still do if I’m feeling extra odd. (feeling “odd” is my typical, but “extra odd” these days is more and more uncommon 😀) I’ve read that everybody’s blood pressure can fluctuate for a long list of reasons, every day. This brought me comfort knowing. I also found out that my particular home blood pressure machine is designed for reading blood pressure sitting still with your arm supported. I gave up using mine in other positions (WITH the help of my husband in case of dizziness, etc), due to error messages and strange results that weren’t duplicated in professional settings. Maybe best to check with the instructions, call the manufacturer or as for everything I’ve said above, check with your doctor.

I would also be interested in how outofadream and others are doing with reflux. I just realized my reflux issues have completely resolved since I’ve been treated for POTS. In the past I tried everything, and the only thing that helped (a tiny bit) was avoiding things like dark chocolate, spicy foods, etc. I had so little food choices because of reflux and also from IBS, lactose/gluten sensitivities.

😀

Thank you for your very relatable topics.🙂 I’m so glad the Midodrine is helping! That’s super about the autonomic specialist, I’m ever so grateful for mine.

I’m so happy to hear! It must be such a relief that your bedtime is better! The computer is a big trigger for me too, especially for my neck. I had to give it up and use a tablet instead. I’ve explained to my neurologist that I get “neck headaches” and she seems to understand the concept. Looking up or down too long will trigger one. I also get coat hanger neck/shoulder discomfort triggered by being upright.

Thank you, I’m going to try it out. I’ve never heard of it before, it sounds like its helped forum members with multiple symptoms. I use crocheting for meditating, but I have limited energy to spend much time at it. If it helps me, I’ll let you know and also if I prefer speed or the rhythm.

Lisa C, I would definitely contact your doctor’s office to clarify. Taking the wrong amount of salt could be dangerous. Guessing for you wouldn’t be safe. You brought up a very important topic. I’d love a POTS doctor to help explain the difference between salt and sodium, and provide easier calculations, if any. I’ve found it confusing when trying to figure out how much SaltSticks to substitute for my table salt. I’m wondering how many POTS patients might be taking the wrong amount?

I forgot to add that my neurologist also injects some extras beyond the migraine injection pattern. She injects my neck and jaw area, since I have very severe, uncontrolled pain in those spots. I’ve been warned about potential muscle weakening, etc. I’m only taking the Botox because we are so low on options for me. Dale H, I hope the Botox helps. My fingers are crossed. It took several rounds before it was helpful for me. Best consult with your doctors about tapering off meds, each person is so different and each specialist has their own tapering protocols.

I know how difficult untreated severe headaches can be. I’m so sorry you are going through this. I was in and out of emergency with severe headaches with painful aura of my extremities, etc (triggered from being upright) for months, until I was under care of a neurologist. She ruled out a CFS leak with a battery of tests. She tried many of the regular meds for migraines, with little success. As a very last resort she is now using Botox on me every three months. I’m no longer having to go to emergency. It has greatly reduced my migraines from forming as frequently and severely (but not my head pressure, etc when upright), The auras have only been slightly diminished. She calls it POTS related, orthostatic idiopathic migraine. My orthostatic specialist says it’s not typical of the POTS headaches he normally sees.

Great topic, green. I had this concern when I was first diagnosed. I agree with yogini, Pistol and Sushi. I would also like to point out, POTS patients take in lots of water with our prescribed salt, so this creates a different scenario then just taking high amounts of salt alone. I’ve also learned we’re all different with how much we need. I put faith in my Autonomic Specialist on deciding how much salt to water ratio I should take. (I measure it all out to be safe). I don’t know exactly why, but substituting some of my table salt with unflavoured SaltSticks capsules, makes me feel a bit better. Maybe someone could explain why? (SaltSticks capsules are too expensive for me to take all the time though). Does anyone know an easy way to gauge how many salty snacks are okay on top of our prescribed salt?