My ME/CFS resource site: www.cfs-me-navigator.com
My Wheelchair site: www.mywanderingwheels.com
The Hummingbird Scale: https://www.hfme.org/themeabilityscale.htm?fbclid=IwAR1Q5OYpywuVPKdZHseEI2O3I-iDwF12KufImxOIqR7p_4LeDgM5Oq3tk3I
*correction- I was at the _edge_ of very severe.
I don't think I said enough about how much more freedom and life I got back after getting the wheelchair van.
I also didn't say enough about how much better my sensory is these days. Before all sounds hurt, now I can go into a nightclub with music an lights (with ear plugs in) an be okay for an hour and a half!
About Meds Mentioned:
*I forgot to add that when I first took Abilify I was not careful enough. Dr. Bonilla at Stanford recommends staying at your old activity levels for 2-3 months and gradually increasing no matter how good you feel. I did too much and it set me back 6 months. After that I followed the advice better and improved.
*Also, note that while Valtrex, Low dose Abilify, Low dose Naltrexone and Ketotifen helped me, they don't help everyone.
I also take Trazodone (prescribed early on by my doctor) and melatonin for sleep, which thankfully worked and continued to work.
I also took sumatriptan for the headaches. I haven't had the labor-pain level headaches in a while now and haven't needed this lately. Both more carefully protecting my sensory input/light and being better overall I think. One neurologist I saw suggested I get off estrogen birth control because that can effect them and it may also have helped.
Since people are asking, The Equilibrant is here: https://www.equilibranthealth.com/#/
He recommended starting at 1/8 of a pill a day, then 1/8 twice a day, then 1/4, etc. up to 2 tabs, three times a day (6 total). Take for at least a year. Cut in pieces they taste _terrible_. Recommend taking with juice.
0:00 Intro
0:53 My stages
1:44 Healthy Me
2:19 Start of ME/CFS and being Mild
5:12 Going Severe in One Day
5:55 Trying to Figure it Out
9:44 Trying Valtrex
10:12 Trying to Function While Severe
12:40: The Worst of It
14:04 Realizing I Needed a Wheelchair
15:55 Traveling Without Crashing
17:17 Seeing Dr. Chia
18:25 More Travel Without Crashing
19:15 Appointment with Stanford ME/CFS Clinic
19:45 Abilify, Naltrexone and Ketotifen
21:23 Stress Crashes
22:48 Almost 2 years of no Crashes
23:15 Thanksgiving Crash, Slump and Cold-Crash
24:03 Slowly Improving over Time
24:38 What the Improvement is Like
25:27 Now (Don't Push)