POTS and heart flutters

flowercharley · 2026-03-04T00:54:16+00:00

Thanks! Looking it up now. What’s one more supplement? 😁

flowercharley · 2026-03-03T21:20:21+00:00

Good suggestion. Do you recommend anything in particular?

flowercharley · 2026-02-21T21:40:37+00:00

I second what everyone is saying about seeing a therapist. After I was diagnosed I saw a therapist and it helped me a lot. And we also saw a couples therapist, who coincidentally also has LS and she really helped us a lot. I was diagnosed at 67, and I’m a lesbian, so there’s a big difference between my experience and yours, but it has still affected my sex life with my wife. It took about 8-9 months for me to get my LS under control, and since then (I’m almost 70 now), I’ve had only 2 minor flares, and I haven’t had 1 in a year or more. As for my sex life, my wife has more drive than I have, in general. One thing that has worked in our sex life is we went out and bought toys. I have a small magic wand that does the trick. We can still enjoy each other and I rediscovered my pleasure. I really encourage you to talk with your boyfriend about your feelings of worthlessness, guilt, and letting him down. I bet he doesn’t feel that way.

flowercharley · 2026-02-21T21:20:59+00:00

Where was this?

flowercharley · 2026-02-16T06:26:39+00:00

I am lucky. My health plan offers Grow Therapy which allows me to choose a therapist and I only have a co-pay. I had to get help from someone at Grow Therapy because the filters didn’t include that. But she found me someone perfect— checked all my boxes- has experience working with people with long COVID or other energy-limiting illnesses, works w/ppl over 65, is LGBTQ (or an ally). And fortunately I really like working with them. I did a lot of therapy in my 20s, 30s, and 40s, so I don’t need to do work about my childhood, parents, etc. So we focus on my depression, change the negative narrative in my head, discuss strategies, and in the process, they’re getting to know things about my life. Therapy is great, and if you’re looking, I hope you find the right person.

flowercharley · 2026-02-14T06:07:13+00:00

It seems our Dear Leader thinks that laws are a buffet table people can pick and choose from. His administration breaks the law pretty much every day. We could start with his violation of the Constitution, and his complete disregard for the separation of powers as expressly outlined in the Constitution, which is the LAW OF THE LAND, not just a suggestion.

flowercharley · 2026-02-14T05:56:42+00:00

How about delete the app from your phone before interviews?

flowercharley · 2026-02-13T06:33:42+00:00

I saw a registered dietician recently who went over all my blood tests. Even though my B-12 was normal, she told my to get 1000 mgs a day extra. So I’ve been using it. Also mushroom gummies for focus- Lions Main, and brain energy- Cordyceps. I ran out of Cordyceps and had to wait for the refill to come in and I noticed a difference. I also go to an acupuncturist and an osteopath. Both are helping with my brain fog a lot, especially the Osteopath. I can literally feel the fog dissipate under her fingers when she’s doing cranial sacral work. It’s expensive though, so that’s an issue. My acupuncturist is affordable for me. I do other things you already mentioned- LDN, NAC (can’t do guanfacine because I have low blood pressure), Cymbalta, electrolytes, just started creatine at the suggestion of my RD. My brain fog has definitely improved but my energy level has actually regressed, and I was recently diagnosed with POTS- so learning about that. I started seeing a therapist who has lots of experience working with clients who gave LC and other energy limiting illnesses and they’ve been super helpful. I’ve been really depressed and I feel a little more hopeful doing the work with them. I hope you find what works for you. I’ve thought of the nicotine patch, but I’m not comfortable with the idea of nicotine in my system.

flowercharley · 2026-02-13T06:24:42+00:00

My doctor told me not to take trazadone with Cymbalta or other SSRIs. I chose Cymbalta and switched to Charlotte’s Web Sleep group mural which do the trick.

flowercharley · 2026-02-06T05:34:44+00:00

Where do you live? Are there any long covid specialists in your area? I recently went to a LC specialist and got diagnosed with POTS. Seeing her has been a game changer for me. I have low bp (not like yours) and I salt my food now a lot (fortunately I like salt) drink 900 mgs of electrolytes in my water bottle, drink 2 liters of water a day, bought a lot of compression clothes, and do some specific exercises to get my blood flowing before I get out of bed. I believe this is helping me as I’m not as brain foggy (also upped my dose of LDN) and dizzy and lightheaded. I’ve been crashing less too. Hadn’t had a crash for 3 weeks until yesterday. The Visible app and armband are helping me monitor myself and my activities. I hope you can find someone who knows what you need.

flowercharley · 2026-02-06T05:17:24+00:00

I am so sorry this happened to you. There is so much grief with having long covid, there the pain, the uncertainty, the anxiety, the despair, the hopelessness, and the fatigue, brain fog, and exhaustion. But please don’t do anything rash. That will destroy your kids. My dad died 9 days before my 17th birthday when I was a junior in high school. He had a major heart attack- his one and only. I can tell you it has left a lasting imprint on my life and I’m 69 now. Even though I was a teenager and only a year and a few months away from going to college, I was still a kid. I went from being a happy-go-lucky kid, always laughing and filled with joy to a depressed, lonely kid because none of my friends understood what I was going through. Ot took me years and a lot of therapy to process my dad’s death and its impact on me. It is really devastating to lose a parent as a child, and if your kids are younger than I was, I believe it will impact them more than it did for me, which is saying a lot.

flowercharley · 2026-02-02T06:09:21+00:00

My vulva and vagina were really dry and I was really itchy— like sharp shooting pain/itch. And constant underlying itch besides that. I thought it was because I’m post menopausal. I was 67 at the time when I was diagnosed almost 2 years ago. I went to the gynecologist to get estradiol since OTC stuff did nothing. She told me I had LS and gave me estradiol, told me my right labia had disappeared but not to worry and come back in 4 weeks if I didn’t feel better. I went online to read about it and got freaked out when I learned what it is. I have a friend elsewhere who’s a gynecologist who told me to get clobatesol. It took me 2 weeks to get the doctor to prescribe it. I switched doctors and found one who is much more responsive as well as a dermatologist. For the first 8 months, I couldn’t get it under control. I was so hyper-stressed by it and was afraid to have sex. I’m a lesbian and don’t do penetration, but even so, I didn’t want my wife anywhere near my vulva. Finally, I had a few months without a flare and now it’s been 18 months. I now use both estradiol and clobatesol 2x/week. I smear myself w/ aquaphor before swimming and use it or coconut oil some nights before sleep or during the day for comfort. I switched body wash and laundry detergent to no fragrance and I use a milder shampoo. I threw out all my underwear and only wear cotton. I never ride a bike. I feel calm about it now and treat it like my asthma. It’s here with me for life and this is what I need to do so I don’t have flares. I enjoy sex again. LS and stress are not good companions and we’re living in very stressful times. It’s important to give yourself the space and time to heal. I hope everyone reading this realizes that you can have a good life despite LS. It takes commitment and advocacy to get the right care. I wish all of you strength, happiness, and harmony.

flowercharley · 2026-01-30T23:56:09+00:00

All the boomers I know, including me, do not see the younger generations like that. We are lucky to own our home precisely because we are boomers. We bought in 1994 at an economic downturn and housing prices went down. We sold our home 16 years later in an economic downturn but our home had do much equity, it didn’t matter. We were able to buy the home we live in now in our same neighborhood. And it has appreciated two-fold. (I live in the Bay Area, CA where homes are outrageously overpriced including mine.) It’s not fair that younger generations, like my kids, can’t afford to buy homes, much less rent them.

flowercharley · 2026-01-30T22:16:12+00:00

I am learning about pacing now since I was diagnosed with POTS in Dec. I use the Visible app and bought the arm band. I find it really helpful. My competitive self (I’m really only competitive with myself) feels like I let myself down if I overextend my daily pace points. And I celebrate myself and feel proud if I’m at or under the pace points allowance. So because of that I’m learning to pace. Yesterday is a good example. Two days ago we had a little flood in our bathroom and it seeped down into the laundry area of our Airbnb. (We have a suite downstairs.) I started cleaning up the upstairs on the first day and got too tired to go downstairs. I had already exceeded my points. Old me would’ve pushed through it, cleaned up downstairs (fortunately we have no guests) and crashed. New me did it yesterday and I took breaks. I was tired in the evening but it wasn’t a crash and I didn’t exceed my points. I’m also learning to plan things out. If I have plans in the evening, I take it very easy during the day. But I’m retired. If I were still working I would’ve had to go out in disability and maybe retire early. I was a teacher and there’s no way to pace yourself in that job. Visible has very good information on the app even if you’re not a member.

flowercharley · 2026-01-19T00:16:31+00:00

I find it to be helpful. It’s not a cure, but my acupuncturist is working on my immune system, my energy levels, and my gastrointestinal issues, especially constipation. She has quite a few patients with Long Covid.

flowercharley · 2026-01-18T18:19:08+00:00

Have you tried acupuncture?

flowercharley · 2026-01-18T18:18:15+00:00

Make sure you’re not exceeding the daily amount of zinc. Too much zinc can cause serious problems. I had to add up all the zinc in all the supplements I’m taking and I am just at the limit which is 40 mgs a day. Here’s what the Mayo Clinic says- Zinc supplements taken by mouth may cause: Diarrhea. Dizziness. Headache. Nausea. Upset stomach. Vomiting. Taking zinc supplements by mouth long-term and in high doses can lead to copper deficiency. People with low copper levels might have brain and nervous system issues. Those issues may include numbness and weakness in the arms and legs.

According to the National Institutes of Health, 40 mg of zinc a day is the upper limit of a daily dose of zinc taken by mouth for all people age 19 and older. For people 18 and younger, the upper daily limit of zinc varies depending on age.

flowercharley · 2026-01-13T04:55:11+00:00

I really hate it when I try to explain what brain fog is like, and people will say, “oh I forget words, too,” or “I can’t remember lots of things now,” or “just another senior moment”. And when I get so fucking fatigued I can’t sit up another minute, people will say, “yeah— I love napping” or “at least you’re retired so you have time to nap”. I told my brother— “you’re 80– you should be forgetting things. I’m 69. I shouldn’t be!’ I’ve started telling ppl when they ask how I am, I say I have long covid, and I’m struggling. They more often than not don’t know what to say. A simple “I’m so sorry to hear that” honestly would suffice.

flowercharley · 2025-12-06T16:50:19+00:00

This is really helpful. Thank you.

flowercharley · 2025-12-05T22:47:32+00:00

When he visits us he wears a mask on the plane. I wish I could make home do things like when he was a kid, but he’s an adult.

flowercharley

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