ME/CFS
Outcome unclear
ME/CFS with EDS, migraines, pain, power wheelchair; tried liquid medication and memantine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Nov 2024
In their words
- Condition: ME/CFS
It has helped me, it's not a cure all, but made a difference. I take it in liquid form - 6mg.
In context ↗ - At worst: Moderate
I have the Pride Jazzy Carbon lightweight wheelchair. It's TSA approved and weighs just over 40 pounds. I love my chair and use it all the time.
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Tulip 53101 has EDS, major GI issues, migraines and pain, and uses a lightweight power wheelchair all the time, including on flights. A liquid medication at 6 mg, tapered up slowly, helped with both pain and fatigue. Memantine twice daily helps migraines, with Ubrevly taken when one comes on, though approval was difficult. A symptom-tracking app was described as incredibly helpful in the short time they've used it.
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What they tried
Also tried
Their words about each treatment
- LDN · Helped
It has helped me, it's not a cure all, but made a difference. I take it in liquid form - 6mg. I tapered up very slowly and was on 4mg for a year before going up to 6mg. It's helped with both pain and fatigue.
In context ↗ - memantine · Helped
My neurologist has me on memantine twice a day for migraines. It is actually an Alzheimer's drug but has shown to be effective. I do believe it does help.
In context ↗ - Ubrevly · Not said
I also take Ubrevly when I feel a migraine coming on. It's expensive and I had to go through a lot to get it approved.
In context ↗ - antibiotics just for that · Not said
There is an antibiotics just for that and it only digests in your gut. Normally antibiotics ruin everything for me, but this didn't.
In context ↗ - the app · Helped
I've only been on it for a short time and it's been incredibly helpful.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| 2023-10-19 | low-dose naltrexone reduced pain and fatigueIt has helped me, it's not a cure all, but made a difference. ... It's helped with both pain and fatigue.In context ↗ | Moderate | Low-dose naltrexone |
| 2024-09-25 | memantine reduced migrainesMy neurologist has me on memantine twice a day for migraines. ... I do believe it does help.In context ↗ | Moderate | |
| 2024-11-11 | still ill, tracking symptoms with an appI've only been on it for a short time and it's been incredibly helpful.In context ↗ | Moderate | Symptom-tracking apps and wearables (Visible) |
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
It's helped with both pain and fatigue.
In context ↗ - Headaches & migraine
My neurologist has me on memantine twice a day for migraines.
In context ↗ - Gut problems
I also have EDS and suffer from major GI issues.
In context ↗