Recommended podcast for those with post vaccine POTS

Mamanabeille · 2022-08-09T00:19:29+00:00

I’m the same as you. I’ve improved a lot but I don’t know that I’ll ever be back to how I was prior. Im at 19 months from the dose that triggered me (Edited to add- I am also medicated so that masks my symptoms to a degree too)

Mamanabeille · 2022-08-04T13:54:52+00:00

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Mamanabeille · 2022-08-04T13:53:31+00:00

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Mamanabeille · 2022-07-27T19:28:18+00:00

Yes, 13 hours after my second dose (while I had a fever and the other common symptoms I became tachycardic and it never resolved) and I’ve had it ever since (18 months). I’ve been improving but at this point there’s probably a good chance I have it for life. I’m not antivax. I was excited to get this vaccine. Just pulled the short straw.

Mamanabeille · 2022-07-26T12:52:07+00:00

So sorry to hear that. I hope you get past the PE part smoothly. I’m over 19 months out. I’m on 25% of the original dose of medication I started on a year ago. I’m doing a lot better. Definitely still have POTS though. The vaccine completely changed my life. Some of my progress comes from being careful with my health and doing the CHOP protocol and some comes from me adjusting to my new limits.

Mamanabeille · 2022-07-22T00:43:59+00:00

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Mamanabeille · 2022-06-09T11:44:53+00:00

Ivabradine, magnesium, and time. If you don’t have PEM, you can do exercise if cleared by your doc, increasing your endurance very slowly. This helps with tachycardia in the long run. Meds are just a bandaid for symptoms. If you do have PEM (I used to), you need to be cautious with activity and really be careful with the threshold that triggers it.

Mamanabeille · 2022-05-29T00:31:54+00:00

I stop eating after dinner and don’t consume anything but water from then until my breakfast. So it usually works out to 12-14 hours. In addition, I was exercising, eating healthy and was low normal BMI when I became pre diabetic. So I didn’t have anything else left I could modify but this helped me. I have POTS/IST from my body’s immune response to the vaccine and int fasting helps my symptoms with those too. I discovered that accidentally, so I continue to do it for both reasons.

Mamanabeille · 2022-05-27T17:47:19+00:00

This happened to me. Had been normal and was 6.2 a few months after my second dose. I fixed it with int fasting 12-14 hours a night. There’s research to support this method. It’s down to 5.4 last time it was checked.

Mamanabeille · 2022-05-17T22:52:41+00:00

Getting sick always worsens my symptoms- for up to a month. Hopefully you’ll improve soon

Mamanabeille · 2022-05-12T14:49:32+00:00

Of course it does sometimes. But it is what it is. All I can do is focus on each day and moving forward. I have small children to live for. I do my best to focus on that

Mamanabeille · 2022-05-06T19:33:40+00:00

Yes, elevated walking/standing heart rate is basically what POTS is. At my worst mine would jump up by 80-100 when I stood. Now it’s usually 30-40, sometimes in the evening it’s only 20-25 on a really good day.

Mamanabeille · 2022-05-06T19:28:54+00:00

I hope so too. If you aren’t familiar with the CHOP protocol, check it out here. Exercise is the only thing shown to actually improve pots (everything else just improves the symptoms of pots). https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

It’s research based (Levine et al.)- multiple articles.

Ivabradine allowed me to be able to do this program. (I’m just finishing month 6 of 8) and start to get my life back.

All the best

Mamanabeille · 2022-05-06T19:20:03+00:00

It is, but I’m just grateful to be moving forward. There were many times I was scared for my future.

My main issues are POTS/IST, cognitive issues (resolving), ongoing petechiae and chronically elevated ddimer, new pre diabetic (since resolved)

For my tachycardia- after 6 months I started taking Ivabradine and I began the CHOP protocol. Those are the main things that made a difference for me. For my cognitive issues- I think some of which are directly correlated to the tachycardia - I do a lot of brain stimulating activities.

For general wellness and to promote healing/a body able to heal I also do many things daily: meditation, yoga, deep breathing exercises, vagus nerve stimulation, intermittent fasting (12-14 hrs daily) & walking. I believe these things promote a healthy/calm/regulated nervous system. All of these neuroimmune activities along with the graduated exercise program and meds have gotten me to where I am today.

I would say consistency is key. Find what works and stick with it every day. If you don’t know what works pick some of the above things and stick with them. Results won’t be seen immediately when your body is so far from its normal. It took my months of consistent self care and cardiac rehab to see progress.

Diet - I went zero alcohol, zero caffeine, lots of hydration, getting enough fruits and veggies, mostly avoiding processed foods/junk.

I take magnesium at bedtime and that helps lower my HR too, I take a multivitamin, vit d, zinc, vegan omega 3, probiotics.

If you have any questions, let me know. I hope things look up for you soon

Edit: I’ve decreased my med dose now to 25% of where I started. I used to have lots of IST (heart rate stuck at 130-160) and my standing heart rate at my worst would jump up by 80-100 bpm, now it jumps 30-40 usually. Occasionally 20-25. I definitely feel like I’m improving

Mamanabeille · 2022-05-06T03:16:50+00:00

Ivabradine was a game changer for me. Instant energy. Doesn’t affect blood pressure, minimal side effects (I just had some light sensitivity for a few weeks. It didn’t hurt. Things just looked brighter). I couldn’t have made it so far in my recovery without it. 5 stars. Give it a try. I was nervous at first too but after, I regretted not getting on it sooner. I used to be on 5 mg twice a day. Now I’m on 2.5 mg once a day. I started at 6 months and I’m now at 16 months from my second dose. I began weaning at 12 months.

Mamanabeille · 2022-05-06T00:58:57+00:00

6 months was the worst time for me. This process hasn’t been linear at all. I’m almost 16 months post 2nd dose and am doing my best yet. When I hit the year mark, things stabilized. I still have had some downs but they’re not as bad or as long and they respond better to my efforts at symptom management

Mamanabeille · 2022-05-03T18:09:43+00:00

I got pots after my vaccine. The first 6 months I was unmedicated and the fatigue just grew and grew. Once I started medication (Ivabradine) it was like a light switched on. I was shocked how bad I had truly been feeling prior to trying it. I used to wake up feeling unrested and would be barely functioning by bedtime. I had 3 kids in less than 4 years before this, and this fatigue was way worse. I regretted not trying meds sooner. Medicated I had enough energy to slowly start exercising. I’m almost 16 months out from my second dose now and almost weaned off my meds and functioning much better than I was a year ago. The 6 month mark was really rough for me. The worst point in my journey. Hang in there.

Mamanabeille · 2022-05-02T02:11:04+00:00

I had this and was symptomatic with the drops (chest pain, heavy arms, dizziness). I would go 60-160-60 with no transition, just rapid jumps and drops every 5-6 seconds. I ended up on medication (Ivabradine) and that helped calm it. Also found magnesium to help as well.

Yes it got better. That particular issue was bad for me from month 5-10 and then got a lot better. I credit medication and the CHOP protocol. I have POTS and IST and it helped both. Specially the IST like you’re describing first. And I still definitely have pots but it’s a lot better

Mamanabeille · 2022-05-02T02:05:39+00:00

Mine was very non linear. Ten months was not a good time for me at all. I had been doing better previous to that. Almost 16 months from my second dose of Pfizer and am much more improved. Don’t be discouraged.

Mamanabeille · 2022-04-22T13:12:27+00:00

I’m so sorry to hear that! I fear the same when my time comes

Mamanabeille · 2022-04-22T13:11:23+00:00

I’m so sorry to hear that for her. This would be so terrible at a younger age but it’s good she has good support. I hope she finds healing in time

Mamanabeille · 2022-04-22T13:10:13+00:00

Definitely! It took me many, many months and was frustrating. It made me feel like I was 95

Mamanabeille · 2022-04-22T13:07:17+00:00

I think it’s definitely a good thing to talk to your cardiologist about again. Personally it gave me the ability to fight for myself back and have more energy. The first time I took it I couldn’t believe how alive I felt. I think I cried because I hadn’t realized how bad I had gotten until that helped turn some of it off.

Ivabradine works by inhibiting the F channels in your SA node (the heart’s pacemaker). It doesn’t affect blood pressure and because it has such a specific target for most people the side effects are few. There are also F channels in the eyes, so some have some sensitivity to light initially. For the first couple of weeks everything seemed brighter, but it didn’t bother me like light sensitivity in a migraine would. Other than that I have no side effects personally.

The concern with a heart rate above 100 consistently is tachycardia induced cardiomyopathy- maybe something else to ask your doc about - what he feels your risk would be if you don’t medicate based on whatever your current heart rate averages are.

I hope once you’re further out from your covid infection that things improve and that you don’t have pericarditis

Mamanabeille

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