#neuropathic pots

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This is your friendly reminder that hypovolemic POTS is not the only type of POTS. There is also hyperadrenergic POTS and Neuropathic POTS. Sometimes there is another type included that is called Secondary POTS or POTS secondary to another disorder. Many people with POTS also have multiple types. Also most people with POTS don’t faint. Don’t forget all types are valid and your experience is still valid without fainting (also still valid if you faint though).

[shamballalin]

If You Have POTS, You NEED This Information!

@kaibmama If you have POTS you NEED this information. #posturalorthostatictachycardiasyndrome #pots #potssyndrome #nondiabetichypoglycemia #dysautonomia ♬ original sound – Kai Bear This is my amazing daughter, Kai Bibeau. She has learned all this first-hand and knows what she is talking about. Please pass this on if you know anyone with POTS. It will help them know how to help themselves. God…

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[ifdragonscouldtalk]

Life Updates

Hi y’all. I know a lot of you haven’t heard from me personally in awhile, and so I wanted to give some updates and explain some things.

So, life summary of the past year. I’m 20 years old, a junior at a prestigious university. Two years ago I began to be treated for hypothyroidism in addition to my treatments for clinical depression and anxiety disorder. My medications created a thyroid storm last September, putting me in the hospital for a week and setting back my recovery. Last November, my dad lost his job, and although he found a new job by January, we’re still suffering the effects of the income loss for those three months. This September, I caught a cold which fucked with my thyroid meds, leading me to become increasingly lethargic and lack focus. This drop in my adrenal function due to the thyroid misfunction led to me having to medically withdraw from this semester of school. I have two guinea pigs. I used to have one, Toby, and over the summer I wanted to get him a friend, so I got Trajan. Trajan had a genetic disease which I didn’t have the money to test and cure, so I decided to keep him on painkillers until I could hopefully get the money to run the testing. He died only a month after I got him. Then I got Tacitus, because Toby had gotten used to having Tray around. Tacitus was healthy, but in August Toby got a bad cold over the weekend, and I had to take him to the emergency vet. He’s okay now though.

Why does this all matter? It explains some of my medical and financial situation, and why I haven’t been online or writing as much. Part of it is I’ve pretty much moved on from Marvel. It doesn’t really motivate me anymore. But I’ve also been having a lot of health struggles that have made simply getting out of bed and being awake for more than an hour very difficult. And I was working two jobs trying to pay off the vet bills from Trajan and from Toby’s cold. I had to quit those jobs along with school when I got sicker, meaning I still have a huge amount on my credit card and owe my mom some money for covering vet things while I’ve been short on cash. I’m working on getting another job now, as you guys have helped me with (thank you!) but I’m waiting on responses.

Continuing. Yesterday, I had an appointment with a cardiac neurologist, and he told me he was almost positive I have a condition called neuropathic POTS. Neuropathic POTS is a condition where the small neurons in my limbs, the ones that directly connect all the muscles and veins and tissues to the main autonomic nervous system, have broken down in their saline barriers. This is small fiber neuropathy. The small fiber neuropathy means that when I stand from sitting or lying down, unlike in a healthy human my nerves don’t send signals well enough to make the veins in my legs respond to the pressure change as they should -- when you stand, your veins in your legs contract to create more blood volume in your chest and head instead of having it pool in your lower extremities. Without the proper nerve signaling, my veins don’t contract well enough. This is the POTS part -- it leads to dizziness, fainting, migraines, and a whole plethora of other health issues. It is an autoimmune disease, and it’s suspected to be linked to my hypothyroidism, as a certain type of hypothyroidism that my mother has called Hashimodo’s Disease is also caused by autoimmune problems, and I have eczema, another autoimmune problem. Neuropathic POTS cannot be confirmed without testing, but the tests are being done over the next six months, as my doctor is booked very far out (I booked this appointment with him for the initial screening over a year ago).

This diagnosis is good. It means that there’s something to be worked with, that it’s somewhat treatable and I can begin to make changes to feel more normal and become more active, instead of being trapped in a body that faints at the first sign of strenuous activity. One of those changes is to get compression stockings that will help prevent blood from pooling in my legs.

These compression stockings I’ve been prescribed are medical grade. You can’t get them over the counter. They’re 40-50mmHg, they’re not like something you’d get at a sporting goods store. We have to buy them from a store an hour away from my house. You have to be measured for them so they fit correctly and compress enough but not too much.

They’re $300 each.

My insurance deductible is $300 for medical grade equipment. We don’t have that kind of out of pocket money right now. We’re considering getting lower grade compression just so that I have something, because it’ll improve my quality of life, but even those can run $90-$150, and we don’t have a prescription for that so insurance won’t cover it. I’m not saying we’re suffering or that I can’t do without it. It seems I’ve lived with this condition for many years, and I’m going to live with it for many more. But it’d be nice to have these because my doctor told me 5 things that would improve my quality of life 85% and help me keep up with other people my age, and this is one of those things.

If you have POTS, I’d love to get to know you and learn more information about living with this. If you don’t have POTS but know about me, I would really appreciate it if you helped me out by supporting me on ko-fi or on patreon. I can’t give you anything in return. I don’t have the energy for that. But you’ll have my unending gratitude and probably some tears as well.

Anyway, that’s an update on my life and an explanation for why I’ve been so absent. If you have any questions about my medical conditions, please feel free to ask. I’m very open about my experiences with them. Thanks, I love you all.

Talon