Thread by @longCOVIDbattle

1/ I'm approaching my 2 year anniversary of #LongCovid . I thought I would share my journey to recovery. This is not medical advice, just my story. If it helps one person it's worth it. I learned more from Twitter than anywhere else on this journey. #microclots #teamclots #pots

2/ I got COVID November 2020. Night 1 I had the most excruciating headache of my life. It felt as if someone was drilling into my forehead.  The headache dissipated after 2 days only to return day 13.  Initially I had some minor brain fog, like putting Ice Cream in the fridge etc

3/ I never lost my sense of taste or smell. I had a minor fever/body aches for 24 hours. Day 4, I started having heart rate issues. I would be resting on the couch and get up to walk to the bathroom and my heart rate would jump to 130.

4/ I went to the ER on day 9 because of the heart rate issues. I had a negative chest x-ray and a normal D-Dimer test. They sent me home. Day 13 the headache returned. It was on and off for a next two days, but on day 15 the headache became constant in the form of a migraine.

5/ Migraine lasted for over 3 months. In addition to the pain, my brain wouldn't work, it couldn't process info. For example I would be at the grocery store trying to find something, but there were too many things on the shelfs that my brain couldn't process what it was seeing.

6/ Looking at my phone or a computer, trying to drive, anything where I would try and concentrate would make my headaches worse (similar to post concussion syndrome). I was able to get in and see a neurologist for my constant migraines at 6 weeks.

7/ He recommended that I switch to Aleve bid (instead of Tylenol). He ordered a lumbar puncture, which showed elevated WBCs. I had a normal brain MRI. Aleve did help my headaches (which told me there was an inflammatory component) but after 4 weeks it started to upset my stomach.

8/ Neurologist recommended a Cefaly device (Drug free External Trigeminal Nerve Stimulation device) for my migraines or I could try Nortriptyline. Prior to Long COVID I was a very healthy 38 year old male take no medications. So I opted to try Cefaly first, but it did not help.

9/ I found an article on GammaCore Sapphire Device (Vagal Nerve Stimulator) for migraines, so I tried it but it didn't help. I was also seen at Northwestern's Post COVID Neuro Clinic. They also recommended Nortriptyline. So I gave it a try for several months but it did not help.

10/ I figured out that a low carb/low inflammatory diet really helped. Alcohol, sugar, caffeine made my headaches worse, so I cut those out. Exercises exacerbated my headaches. Over time the constant migraines slightly improved, but would come on anytime I tried to concentrate.

11/ I was out of work for 4 months and only part time for the next year and a half. I then got an appointment with a Naturopath, she started me on Pepcid and Zyrtec bid, this actually seemed to help some. It was about this time that my heart rate issues started to subside.

12/ She ran lots of blood tests. I tested positive for Lyme, Babesia, & recurring tick fever (not necessarily active). I had never had any Lyme symptoms. Maybe my immune system was able to keep these in check before COVID and now it couldn't it? These contributing to headaches?

13/ About at this time I ended up getting the Pfizer MRNA vaccine. In the media there were some long haulers who were supposedly improving with the vaccine, but both doses made my constant migraine come back. It took about 2 weeks to get back to my long COVID baseline after each.

14/ A couple months later I started hyperbaric oxygen therapy. This was the first thing that really helped me. When I was in the chamber my brain worked normally. I could scroll on my cellphone, read long COVID articles without getting a migraine.

15/ The only problem was that it wouldn't last. I would get 24 hours of relief after an HBOT session before migraines and processing issues would return. I completed 20 HBOT sessions in total.

16/ My Naturopath also had me try a very low dose of Ivermectin 0.15mg/kg for one month and I didn't see any improvement. Next she had me try Low Dose Naltrexone which did offer me some benefits with the migraines/headaches, so I continued with it.

17/ About 10 months in I had an appointment with Dr. Bruce Patterson's team. My cytokine blood panel was off the charts. This was the first real evidence that some medical marker showed something wrong with me. I started Pravastatin, Maraviroc, Ivermectin, beta blocker, & Aspirin

18/ I couldn't tolerate the beta blocker or Aspirin, both made headaches worse. But Pravastatin, Maraviroc, Ivermectin combination did offer me some improvements. I noticed I could concentrate longer before my migraines would kick in. After 30 days they had me add in Fluvoxamine.

19/ After several months I would say I slowly improved, less migraines, improved concentration. Instead of migraines, I now had this constant head pressure. That feeling like you need to constantly pop your ears. My brain was functioning better, but I had this head pressure 24/7.

20/ At 14 months in I underwent a hip scope procedure. My docs thought my head would be worse after the surgery because of the insult on my body. But I woke up from anesthesia and much to my surprise my head was clear for the first time 14 months. I was shocked and so happy!

21/ I was on multiple post op medications for several weeks. I didn’t know if it was one of those meds that made the difference? But once I came off those medication’s my head discomfort came back. This was about the time I started reading about micro clots on Twitter/articles.

22/ Over the next two months I stayed about the same with the head pressure. I did add in intermittent fasting which definitely seem to help some. Come to find out that one of my post surgery medication was Eliquis.

23/ I discussed this with my doctor and gave her a micro clot/microscope article. I got a prescription for Eliquis and instantly my head pressure cleared again. It by far made the most profound impact on me. I felt like myself again. Overtime I started tolerating exercise.

24/ I’ve been on Eliquis now for 6 months. I feel 95% better. I’m still super careful with my diet. I continue to fast. I don’t drink alcohol or have caffeine. I tried for minimal sugar. I know being on Eliquis comes with risk, but its been so nice to feel like myself again!

25/ I’m currently trying to transition to some blood thinning supplements (Serrapeptase, Nattokinase, Lumbrokinase, Vitamin E) while I gradually try come off Eliquis. That is my two year story. It taking me while to get the courage to share, didn't want to jinx my recovery.

26/ #Eliquis #HBOT #LDN #Pepcid #Zyrtec #Ivermectin #Pravastatin #Maraviroc #CovidHeadache #Migraine #CovidMigraine #BrainFog #Fluvoxamine @brucep13 #lyme