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Long COVID Severe → relapsedIll 2.5 years before improving or writingNeeds ongoing treatment

Long COVID severely ill, better on candesartan and bisoprolol, then relapsed after Pfizer

Nightjar 13992 on RedditLast post Aug 2022

Condition
Long COVID
At worst
Severe (mostly bedbound)
Ill before improving or writing
2.5 years
Last post
Aug 2022
In their words
  • Condition: Long COVIDit took me 7 months to realise that I had gotten Covid and as a result of that #longcovid. In context ↗
  • At worst: SevereDressing up or taking a shower was Hell...a struggle. Even combing my hair was impossible because I didn't have the strength to keep my arms up to make a ponytail. In context ↗
  • Now: RelapsedI am really back in my longcovid time ,a year ago ☹️ In context ↗
  • Began after: COVIDSoon after that things got weird. Quite soon we all had throat pain , conjunctivitis ,cough and feeling flu-ish. In context ↗
Read from 67 of their posts and comments; links to the 44 this page draws on

Request to remove this story

Summary

Irene, in Germany, dates long COVID to a February 2020 event in Utrecht. By month five she was severely ill with sky-high blood pressure and could not shower, comb her hair or chew. Candesartan and bisoprolol stabilized her blood pressure and she could care for herself again, but sleep remained broken and quetiapine gave only three hours. Two Pfizer doses caused major relapses with louder tinnitus, nausea, insomnia and worse dystonia; she stayed unwell.

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What they tried

What they credit

Absolute rest for six weeks· Helped a lotKeto then Low Carb· HelpedCandesartan· Helped · mainVitamin D injections· HelpedWalking with heart rate kept under 100· Helped

Also tried

Quetiapine / Seroquel· Helped · wore offBisoprolol· HelpedNAD+ (Life Extension, with resveratrol)· HelpedWhey protein· HelpedLevocetirizin· HelpedFamotidine· Helped · wore offCBD without THC· HelpedTemazepam· HelpedOxazepam· HelpedGinkgo· No changeNiacin· No changeCetirizin· No changeZyrtec· No changeZopiclon· No changeLortemazepam· No changeLavendel and Valerian· No changeMelatonin· No changeYogi turmeric chai tea· WorseSports drink with Taurine and Niacin· WorseMirtazapin· WorseAmfetamines· WorseFlu vaccine· WorseCOVID vaccination as treatment· WorseExercising and building up· Much worseOmeprazol· Not saidMultivitamin· Not saidQuercetin· Not saidZinc· Not saidVit C· Not saidMagnesium with Kalium (electrolytes)· Not saidMagnesium with Kalium (electrolytes)· Not saidSelenium· Not saidProbiotics· Not saidMi Band· Not said
Their words about each treatment
  • Keto then Low Carb · HelpedBefore Covid I did Keto and after that Low Carb for lots of years. Reduced carbs helped In context ↗
  • Omeprazol · Not saidI already had a mild acid reflux and I used a very low dose of 10 mg omeprazol. But now it has gotten worse ,so I doubled my omeprazol... In context ↗
  • Ginkgo · No changeI did use ginkgo for months ,even before Covid...because my lack of concentration etc..... But honestly I kept using it because I hope it had at least a bit effect. In context ↗
  • Quetiapine / Seroquel · HelpedOnly Quetiapine gives me sleep 3 hours at once. In context ↗
  • Exercising and building up · Much worse4 months after I got covid I started to exercise again and tried to build up. That was the worst mistake I could possibly make. In context ↗
  • Absolute rest for six weeks · Helped a lotI'm 100% sure I would have died with severe cardiovascular issues when the doctor didn't give me meds and absolute rest for six weeks. In context ↗
  • Candesartan · HelpedNow the blood pressure is quite stable because of the medication , I'm more able to take care of myself. In context ↗
  • Bisoprolol · Helpedgot bisoprolol and candesartan (because if very high blood pressure),and it's a bit more stable now In context ↗
  • Vitamin D injections · HelpedNow I am almost on the minimum healthy reference level . I still feel like (....) But overall a little better. In context ↗
  • Multivitamin · Not saidI take the whole year a multivitamin ,with vitamin D. In context ↗
  • Niacin · No changeNiacin never did anything for me against brainfog. In context ↗
  • Yogi turmeric chai tea · WorseI tried yoghi turmeric chai tea for a week , but I my reflux got worse from that. In context ↗
  • Sports drink with Taurine and Niacin · WorseI tried a drink for sports...with Taurine and Niacin and took a half of that Tiny bottle....and was nauseous and dizzy for the rest of the day. In context ↗
  • NAD+ (Life Extension, with resveratrol) · HelpedBut because of all these supplements I can't say what makes the difference. In context ↗
  • Quercetin · Not saidI use NAD+ ,quercetin ,zinc , probiotics and Magnesium with Kalium (+electrolyte), because of these nasty spasms. In context ↗
  • Zinc · Not saidI do use niacin ,zinc , quercetin , Vit C , magnesium , selenium and a normal multivitamin as usual. In context ↗
  • Magnesium with Kalium (electrolytes) · Not saidSo I started paying attention to electrolytes, potassium and magnesium In context ↗
  • Whey protein · HelpedWhey Protein . Decent Whey ,not the cheapest. And most of my stomach problems are almost gone now. In context ↗
  • Cetirizin · No changeCetirizin didn't do much for me , but levocetirizin does. In context ↗
  • Zyrtec · No changeZyrtec did not solve my histamine problems and Tinnitus. In context ↗
  • Famotidine · HelpedFamotidine stopped working after a few weeks. In context ↗
  • CBD without THC · HelpedI tried CBD , did something for my lack of sleep ,but my tinnitus stayed the same. In context ↗
  • Temazepam · HelpedNow I try seroquel with 1 oxazepam or temazepam with CBD and now I am able to sleep 4 hours in a row. In context ↗
  • Zopiclon · No changeAs far as I know Zolpidem is here know as Zopiclon. Didn't do anything for me. In context ↗
  • Mirtazapin · WorseWith Mirtazapin I did not sleep well ,weird dreams, and very often awake.... and it took ages to fall asleep. In context ↗
  • Lortemazepam · No changeMirtazapin,Lortemazepam , temazepam, In context ↗
  • Lavendel and Valerian · No changemelatonine, lavendel , Valerian , CBD without THC . In context ↗
  • Melatonin · No changeI used melatonin ,but that didn't do anything.. first 2 mg and then 5 mg . In context ↗
  • Walking with heart rate kept under 100 · HelpedI Keep My heart rate under 100 I don't crash afterwards. In context ↗
  • Amfetamines · WorseTaking amfetamines triggers crashes. In context ↗
  • Mi Band · Not saidI also do have a mi band to keep an eye on my heartbeat. In context ↗
  • Flu vaccine · WorseYes ,I had a flare up for 2 weeks, I felt really bad. In context ↗
  • COVID vaccination as treatment · WorseI got a huge relaps after my first Pfizer. And still feeling like 💩. In context ↗

Approaches: ARBs · Diet · Pacing · Radical rest · Supplements

Their path

Very severeSevereModerateMildNear normalRecoveredonset6 mo12 mo18 mo

How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
15 February 2020COVID-19 illness after A State of Trance event in UtrechtSoon after that things got weird. Quite soon we all had throat pain , conjunctivitis ,cough and feeling flu-ish. In context ↗Mild
4 months after covidexercise build-up attempt caused major setback4 months after I got covid I started to exercise again and tried to build up. That was the worst mistake I could possibly make. In context ↗Severe
June 2020symptoms worsened with high blood pressure and palpitationsUntil June ,then it got worse. I was sweating from doing nothing ,blood pressure sky high . In context ↗Severe
month 5lowest point with high blood pressure and severe weaknessDressing up or taking a shower was Hell...a struggle. Even combing my hair was impossible because I didn't have the strength to keep my arms up In context ↗Severe
16 December 2020blood pressure stabilized with medication; more able to care for selfNow the blood pressure is quite stable because of the medication , I'm more able to take care of myself. In context ↗ModerateBisoprolol (Concor)
8 February 2021walking dogs daily while keeping heart rate under 100 without crashingI walk every morning..good weather or not 1'5 kilometers with my dogs. At first it was a struggle ,but now it's colder and I Keep My heart rate under 100 I don't crash afterwards. In context ↗Mild
19 April 2021first Pfizer vaccine caused major relapseGot my first Pfizer on 19 April, after 3 days I crashed. Still feeling worse. In context ↗Severe
31 May 2021second Pfizer vaccine; problems started after a weekThe second Pfizer did not hit hard at first.... The Problems started after a week, nausea ,louder tinnitus , insomnia, hot flushes and much more Dystonia. In context ↗Severe
12 June 2021stable but not well; tinnitus and sleep problems returnedCurrently quite stable. Not well but stable. In context ↗Moderate
5 September 2021dystonia worsened after two BioNTech vaccinesI'm from February 2020 and got Dystonia after a half year. ... Gotten Worser after my 2 Biontech. In context ↗Moderate
18 September 2021still severe insomnia; quetiapine gives only three hours sleepOnly Quetiapine gives me sleep 3 hours at once. In context ↗Moderate

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
  • Post-exertional malaiseWhen I try to walk in the woods , +- 2 kilometers ,it goes wrong. In context ↗
  • Brain fogNiacin never did anything for me against brainfog. In context ↗
  • POTS & dysautonomiaNow I am able to keep my blood pressure on a acceptable level ,but I still have days it goes a bit upside down. In context ↗
  • Sleep problemsFor many many months I am not able to sleep 3/4 hours , waking up ,or waking up with Heart palpitations and sweating. In context ↗
  • Headaches & migraineThese hot sweating flushes are back again , tremendous headache , tinnitus got louder , nausea and anxiety In context ↗
  • Gut problemsI already had a mild acid reflux and I used a very low dose of 10 mg omeprazol. ... But now it has gotten worse ,so I doubled my omeprazol... In context ↗
  • Light & noise sensitivityI now know that too many stimuli (even if I have to think too much) makes it much worse. In context ↗
  • Heart symptoms & palpitationssince I use a low dose candesartan and bisoprolol the palpitations are shorter ,but not gone. In context ↗
  • Muscle weaknessEven combing my hair was impossible because I didn't have the strength to keep my arms up to make a ponytail. In context ↗
  • Anxiety & low moodLack of sleep ,stress /to many happening at once/ anxiety triggers it. In context ↗
  • Flu-like symptomsQuite soon we all had throat pain , conjunctivitis ,cough and feeling flu-ish. In context ↗
  • Tinnitusbut now , post Covid I have it constantly In context ↗
  • Temperature regulationThese hot sweating flushes are back again In context ↗
  • Vision problemsSince then I needed new glasses , because even though using my candesartan and bisoprolol the vision did not returned entirely In context ↗
  • Hair loss15 months after my covid I still lose so many hair In context ↗

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