Just a light-hearted meme for those of us who suffer from Dysautonomia: Postural Orthostatic Tachycardia Syndrome. Sometimes laughter is the only thing to keep us going!
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WHAT IS POTS?
Postural orthostatic tachycardia syndrome (POTS) is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing. Many POTS patients also suffer from Orthostatic Intolerance (OI) upon standing, meaning the blood pressure becomes very low upon standing. Many POTS symptoms seem to be caused by an imbalance of the autonomic nervous system's control over blood flow. POTS is a condition caused by Dysautonomia (a failure of the autonomic nervous system). Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs. POTS can be categorized as primary, meaning it is idiopathic and not associated with other diseases, or secondary, meaning it is associated with a known disease or disorder. People generally develop POTS after becoming sick with a severe virus, giving birth, or being exposed to great bodily stressors (i.e. surgery, trauma or chemotherapy). The symptoms of POTS are life altering and debilitating. POTS patients use about three times more energy to stand than a healthy, able bodied person. Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease. There are a wide array of symptoms with POTS, some of those include: dizziness upon standing, fainting, rapid heart rate (tachycardia), slow heart rate (bradycardia), nausea, headaches, extreme fatigue, weakness, palpitations, shaking, poor temperature regulation, chest tightness, shortness of breath, loss of or excessive sweating, exercise intolerance, and many more. Symptoms vary between individuals. POTS patients are commonly advised to increase their sodium intake, as this helps increase low blood volume. Treatment may inclue Beta Blockers, Drugs to increase blood pressure or sodium retention, Anti-Depressants, IV fluids, Calcium channel blockers, Compression stockings, and a few others.
There is no cure for POTS.
I want to apologize for not answering anyone’s messages or submissions in a while. I’ve decided not to use this blog anymore, for my own health and wellbeing. I found immersing myself in the “spoonie” community actually contributed to making me feel sicker than I already am. I’m not saying it’s bad for everyone, but for me I felt it was. We all need a distraction from our harsh realities once in a while. I actually feel better now that I have left most of my “spoonie” communities aside from a few support groups. I am able to focus on different things instead of feeling like I was just wallowing in my own misery. I am sorry to let you all down, but I had to focus on myself and do things I actually enjoy instead of talking about my illness 24/7. I ask you all to consider this as well. I never thought my support groups could make me feel worse, but they did. Your illness will always be with you, it’s a part of you and it’s nothing to be ashamed of. But I find continually talking about it online didn’t help at all, it made me feel worse.
I’m sorry. I will not be using this blog anymore until further notice, but I will leave all of the previous entries up for everyone to enjoy.
metoprolol (200mg) compared to corlanor (5mg)
despite being chronically ill i am absolutely terrible at taking pills. the metoprolol i cut in half, they’re always so chalky and awful for me to swallow. the new medicine is so small and easy to take! hopefully once i wean off these beta blockers i will never have to take them again.
Potsproblems just hit 1,000 followers! I am so amazed, I started this blog mostly as a little joke for myself and never expected it to actually grow and get followers. I see the images all over the web on twitter, facebook, and instagram! Thank you all so much for following and enjoying the little memes :) I hope to plan a small drawing giveaway soon when I am feeling up to it. I will keep everyone posted. Thanks so much everyone for the support
Love, kittje
The U.S. Food and Drug Administration today approved Corlanor (ivabradine) to reduce hospitalization from worsening heart failure.
Ivabradine has been approved in the US!! The heart medication i have been waiting for. It is not being marketed for tachycardia, but it is supposed to do wonders for tachycardia patients with hypotension as it lowers heart rate WITHOUT lowering blood pressure. Hopefully I can try it soon once I talk to my cardiologist and it hits pharmacies! I’m so excited.
http://www.ncbi.nlm.nih.gov/pubmed/24072450 Ivabradine in treatment of sinus tachycardia “72% reported a marked benefit or complete resolution of symptoms. The drug was well tolerated.”
i’ve gone through the past month of work(i work on my feet in a salon for 10 hours a day/most days in general with a heart rate around 120.. which isn’t terribly high but it’s high enough to affect my quality of life. and i’m damn proud of myself for making it and fighting through the exhaustion and pain. but if thismax dosage of metoprolol cant help me what the hell am i supposed to take now? i feel like the only drug that stands a chance at slowing my HR permanently is ivabradine, which i would have to get in a canadian pharmacy for a ridiculous amount of money. i’m seeing my electrophysiologist tomorrow to try a new medicine.Also, I’ve spent the majority of my life battling hair pulling (trichotillomania) only to lose my hair to beta blockers. one of my coworkers straightened my hair so she could trim it dry, and as she straightened i noticed how thin it has gotten. i used to have a lot of hair, and now my hair has reverted back to how it looked when i had trich (minus bald spots) i worked my fucking ass off to have heart medicine make me lose my hair again. i feel defeated and i got so upset when i came home i started crying. i feel so weak.
i’ve gotten a few questions about IST/POTS crossover so i decided to make a little post that hopefully helps explain it, and why it sucks so much.
IST (inappropriate sinus tachycardia) alone: constant heart rate of 100BPM or more, even while resting. standing up causes minimal increase in pulse. pulse rises quickly with exertion. blood pressure may be, but is not always, inconsistent.
POTS (postural orthostatic tachycardia syndrome) alone: resting heart rate is normal, when standing heart rate quickly jumps to 120BPM or more. blood pressure may drop or increase upon standing.
IST + POTS: average heart rate of 100BPM+, that greatly increases to 120BPM+ upon standing. Heart rate is still rapid when resting. Heart rate may dip down during sleep. Blood pressure is inconsistent and may drop or increase upon standing.
patients with just IST often have the option of ablation surgery to lower heart rate. this is usually not an option for those with IST/POTS crossover as it is theorized that ablations may make POTS worse.
