Thursday’s Thing is a weekly post all for specific items I have found that help me manage my POTS🩺 I know that I often felt overwhelmed and unsure about how to deal with symptoms, so I wanted to share some things I have found that have helped me:) Instead of having a bunch of individual blogposts every week, I thought a list with links to the products would be better, so here it is:
• Personal Neck Fan: I love the around the neck option! Sometimes my hands are too full or tired to hold up a fan and this is perfect for that! Sometimes the ones on a string can hurt after awhile, so I like that it's a bar and that it has 2 fans that you can angle:) I also like that they have adjustable speeds! • Cooling Towels: I love that each cooling cloth comes in a plastic/waterproof and reusable bag! Sometimes I don't want to wear them anymore, so now I have a place to put them where they won't get everything else wet or smelly. And I love the color coordinated clip because I can hook them on my bag with the cloth in it and because I can hang the bag to dry after! Plus I love anything color coordinated:)
• Emesis Bags: I think these emesis/throw up bags are so helpful! They fold up to be really small and are easy to store, but they are also big and thick enough to avoid having a huge mess on your hands! And you can twist and seal it closed after! Plus, it has volume measurements on the side to help you know how much fluid you lost, I used these in the hospital as a Nurse and have a bunch at home as a patient!
• Compression Leggings: Waist high compression stockings! This is SOOOOO important if you have POTS! Your body cannot pump blood efficiently and a lot of it pools/hangs out in your legs and abdomen instead of coming back up to your heart or head and this causes a TON of symptoms, especially dizziness! Even if I am doing everything else for my POTS, I cannot stand or walk for more than a few minutes without these, they are SO important! And leg high or knee high will NOT help very much! I have noticed that the knee high ones make my knees hurt more! Your doctor can write you a prescription for compression stockings, or you can find some stockings or leggings on Amazon:)
• Medication Container: I think these are SO helpful because keeping track of your medications or trying to remember if you took them can be so hard! Especially with brain fog! I like the ones that open in the back so I can refill them all at once because I do that once a week! They have a lot of different sizes depending on how often you take medications or supplements throughout the day and you can get them at any store with a pharmacy or on amazon:)
• Abdominal Binder: I have a couple Abdominal Binders and they make a really big difference! Especially if I am planning on being active at all🚶🏽♀️During my research for my thesis on POTS, I learned that a lot of blood pooling is actually in your abdomen; so, it's important to wear waist high compression and/or abdominal binders! Even though they are not super comfortable, it helps me a lot!
• Flexible Fans: I don't really know what the official word is for this kind of fan, but I love them! I have several and they have been game changers for me! I love that I can wrap the legs around things, which might sound kind of weird haha! But in this picture I'm waiting at a Doctor's office in the lobby and I wrapped the legs around the arm of my chair and then I have a nice breeze on my face that helps with a lot of my symptoms, but I don't have to hold it the whole time so it's great! I use it on grocery carts, chairs, my bag/backpack, desks, the car or I just hold it! It's nice that you can adjust the legs to be a handle too, I really like them! And I hope they are helpful for you:)
• Shower Chair: This is a game changer for me! Whether I need to put my leg up on it instead of bending over to wash or shave my legs, or I hold onto it while I lean over to grab something, or I sit it in because I am feeling extra dizzy, it helps a lot! And let's be real, a wet shower is just a recipe for slipping and falling! Especially since our symptoms are worse in hot water!
• TENS Unit: This has been a lifesaver for me many times!! A TENS Unit stands for a "Transcutaneous Electrical Nerve Stimulation" Unit and it helps reduce muscle pain through mild electric currents! I don't know if you have been to physical therapy before, but sometimes they have you start with a stronger version of the TENS Unit + heat before you start your exercises. But this one is great because you can use it at home/in between appointments!! I use mine all the time! It's especially helpful when I have specific muscle/area that is tight and painful, most of the time it's somewhere on my back or neck. It's really easy to use because they have very specific instructions about how to use it, including areas where you should avoid putting the pads, so make sure to read those carefully:)
• Sensitive Skin Products: Okay this has been a HUGE game changer for me!! I always had sensitive skin but it has definitely been worse since I got sick! Once I was diagnosed with MCAS, my Doctor recommended using sensitive skin products like body wash, soap, laundry detergent, lotions and pretty much everything haha:) It makes a really big difference! I have less rashes, itching and overall discomfort which is amazing!
• Heart Rate Monitor: This has made a big difference for me! Knowing what your heart rate is can be helpful to look back at overall trends, it can be helpful to see how your heartbeat is responding to interventions and it can be helpful in knowing if you should continue an activity or not based on what your heart rate is! I use mine a lot! There are a lot of different kinds including Fitbit Charge 4, Fitbit Charge 5, Fitbit Sense, Fitbit Versa and Apple Watches! And you can get different bands for them too!
• Desk Cycle: This has made a huge difference for me! When you have Dysautonomia, standing often makes symptoms much worse! This is especially true while exercising, but exercise is important because it helps strengthen your heart! So, researchers recommend recumbent exercise, or exercise while sitting or laying down:) This can include many things including a rowing machine, swimming or biking. One of my doctors recommended getting a Desk Cycle so I can bike while lying down and I love it! It helps a lot!
• Albumin Powder: This week is all about Hypovolemic POTS and increasing blood volume, and the Tuesday's Tip this week explained that this can be done through increasing salt, iron and protein! For ideas about how to increase electrolyte fluid and salt intake, check out the Salty Saturday posts! I have gotten a lot of my iron through Cheerios, supplements and IV infusions lately:) But, I have increased my protein intake through albumin powder, or egg white protein powder! I sometimes put it in a shake or a drink, but I don't bake it because that makes it harder to absorb!
• Bed Risers: Researchers recommend raising the head of your bed about 4-6 inches to help retrain the Autonomic Nervous System and reduce orthostatic intolerance. They recommend raising the whole head of the bed instead of just using a wedge, so I use bed risers on the 2 legs closest to the head of the bed and it works great!
• Camping Chair: This has been helpful for me and would likely be useful for anyone with orthostatic intolerance! Standing can be hard and there's not always a guarantee that there will be somewhere for you sit down when you are out and about! So, I like to have a camping chair or something like that in the trunk of my car! That way you can always be prepared just in case! I also have foldable stools in various rooms of our house for the same reason 😊 It can make a big difference and I highly recommend it!
• Dry Mouth Products: While there are many symptoms associated with Sjogren's, some of the most common are dry eyes and dry mouth! As humidifier makes a big difference with dry mouth, whether it is related to Sjogren's or not! Today, I want to share a link to a humidifier that I really like:) I also want to share a couple other products like this toothpaste and these lozenges that have helped me with my dry mouth, I hope they can help you!
• Ice Eye Mask: This has been a huge game changer for me! It is especially helpful when I have headaches around or behind my eyes and when I have photophobia (or light sensitivity, when light makes your headache worse). I was honestly amazed at how much it helped the first time I tried it! If you do, just make sure you don't ice for more than 20 minutes because it can cause reflux vasodilation which can make your headache worse! And it could potentially cause tissue damage, but it works great for up to 20 minutes:) I also use a normal sleep mask sometimes too!
• Cervical Pillow: My Cervical Pillow works really well and has helped a lot with my Craniocervical Instability (CCI). I sleep in the craziest positions and always wake up with a really sore neck, and this has helped support my head and neck while I sleep and has helped a lot with pain when I wake up!
• Face Wash: One of the non-medication things that helps a lot with my acne (a common symptoms of PCOS) is using face wash in the morning and at night in addition to my prescription acne cream! I use Cera Ve/a generic equivalent in the morning and an exfoliating/blackhead one at night.
• Ginger Ale: Ginger Ale can be helpful with nausea because ginger has been shown to help with nausea and vomiting! For me, the carbonation helps too because burping can relieve some of my stomach pain and nausea:) But other people feel worse with carbonation, so I would try it a few times just to see what it's like for you! I still drink Ginger Ale all the time, but it was especially helpful with my MALS. It's also the drink I always get when I'm flying!
• Eye Drops: Sometimes double vision can occur because your eyes are dry! I thought that was really interesting and I didn't know that until my last eye appointment! If dry eye is one of the reasons for double vision (like it is for mine) it can be helpful to use eye drops! I have been using the Systane eye drops during the day and he also recommended the eye gel at night! Ask your doctor if he/she thinks eye drops could be helpful before you use them regularly!
• Ear Plugs: After a concussion, sound sensitivity can be really common! This is because it's easy to be overstimulated after a concussion or Mild Traumatic Brain Injury (TBI) so even a "normal" amount of sound can be really painful! I found ear plugs to be really helpful when I needed to rest, or when I was in an especially noisy environment! Just make sure to follow the instructions carefully so you don't cause problems like ear wax compaction
• Compression Stockings: With POTS, your body can have a difficult time pumping blood back to your heart! Veins pump blood from your body back to your heart and they have a much lower pressure than arteries, so compression stockings with 20-30mmHg can help the veins by manually adding more pressure. Waist high compression is a lot better than thigh high and I notice a HUGE difference when I wear mine because I can barely walk around without them!
• Double/Triple Compression: I do this pretty regularly, especially when I am going to be standing or walking a lot! I will wear my compression stockings with compression leggings over it for my double compression! Then I will add an abdominal binder to that for my triple compression! I notice a really big difference with my symptoms when I have extra compression! It's especially helpful for my chest pain, dizziness, headaches and blurred vision!
• Reusable Ice Cubes: It can be really hard to drink 4 liters of electrolyte fluids a day, but I personally found it easier to drink more if the drinks are cold! We tried making Powerade ice cubes and just using normal ice cubes, but they both changed the concentration of the drink! So, we finally found reusable ice cubes and they have been a game changer! They keep my drinks cold without changing the concentration or consistency of the drink! I use the Sticks in my taller/more skinny bottles
• Compression Spandex: I have noticed a big difference when I wear waist high compression and/or an abdominal binder! But sometimes the abdominal binder is a little too intense and tight! So on those days I like to wear abdominal compression spandex! Sometimes I wear short like these over my other compression, and sometimes I just wear an abdominal one made from the same material:)
• Microwaveable Rice Heating Pad: When my pelvic pain is especially bad, heat seems to be really helpful for me! I often take hot/warm baths for about 20 minutes (so my POTS doesn't get too bad) and I also use a heating pad! I have an electric one that I like a lot, but lately I have also really liked the microwaveable rice ones:) I like that they are a little heavier and can be a little bit more of a moist heat!
• Hand & Toe Warmers: For a lot of people with Raynaud's, they can just keep their house or office at a warmer temperature to keep their fingers and toes from getting too cold! But I have a hard time with that because of my POTS, so these Hand & Toe Warmers have been a game changer for me!! I put them in my boots or gloves when I go outside during the winter and they help a lot! I can also use them inside if I'm having a hard time warming up my hands or feet!
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