Housebound with ME/CFS for seven months, now much better on low-dose methylphenidate
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 months
- Last post
- Jun 2016
In their words
- Condition: ME/CFS
Anti-depressants are so god-awful for us cfs guys
In context ↗ - At worst: Severe
Ive been housebound (mostly in bed) for 7 months
In context ↗ - Now: Much better
I've been on it for a week now and its the most functional week I had in months.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A 19-year-old man in England was housebound and mostly in bed for seven months from early November after an illness, with brain fog, daily panic attacks, visual disturbances and gut problems. Supplements, antidepressants and TRT brought little benefit or made him worse; saunas, exercise and therapy did little; he spent over £300 on supplements. Low-dose methylphenidate gave him his most functional week in months, easing anxiety and weakness, though it was no cure.
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What they tried
What they credit
Also tried
Their words about each treatment
- Ginko Biloba · Helped
Ginko Biloba, l lysine, taurine and sometimes Vit C effervescent tabs helped slightly
In context ↗ - Vit C effervescent tabs · Helped
sometimes Vit C effervescent tabs helped slightly
In context ↗ - curcumin · Worse
The ones that made me feel worse after multiple tests were curcumin, ashwaghanda, co-enzyme q10, Vit B2, zinc
In context ↗ - 5-htp · Worse
anything that specifically raised serotonin like 5-htp or tryptophan
In context ↗ - fluoxetine · No change
fluoxetine was manageable but hardly helpful
In context ↗ - citalopram · Worse
all but one (fluoxetine was manageable but hardly helpful) made me worse (citalopram, effexor, mirtazipine, amytriptline and especially wellbutrin)
In context ↗ - wellbutrin · Worse
made me worse (citalopram, effexor, mirtazipine, amytriptline and especially wellbutrin)
In context ↗ - TRT injections · Worse
I even went on TRT injections since my testosterone is low and that just make me even more depressed and for some reason even weaker
In context ↗ - saunas · Not said
I tried saunas, exercise, therapy and even a hypnotherapist
In context ↗ - Dexamphetamine · Worse
I tried Dexamphetamine first and it made me jittery and panicky
In context ↗ - Ritalin (methylphenidate) · Helped a lot
The only thing that makes me feel even close to normal is low dose Ritalin (methylphenidate).
In context ↗ - magnesium · No change
I have used magnesium extensively to no avail
In context ↗
Approaches: Stimulants
Their path
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
| When | What happened | Where they were |
|---|---|---|
| early November 2015 | sudden onset of severe symptoms after an illness; housebound and mostly in bedMost symptoms came on very quickly in early November after an illness and did not let upIn context ↗ | Severe |
| 2016-06-03 | low-dose methylphenidate; most functional week in monthsI've been on it for a week now and its the most functional week I had in months.In context ↗ | Moderate |
Adverse events
- Turmeric / curcumin“The ones that made me feel worse after multiple tests were curcumin, ashwaghanda, co-enzyme q10, Vit B2, zinc and anything that specifically raised serotonin like 5-htp or tryptophan” In context ↗ Made symptoms worse
- Ashwagandha“The ones that made me feel worse after multiple tests were curcumin, ashwaghanda, co-enzyme q10, Vit B2, zinc and anything that specifically raised serotonin like 5-htp or tryptophan” In context ↗ Made symptoms worse
- CoQ10 / ubiquinol“The ones that made me feel worse after multiple tests were curcumin, ashwaghanda, co-enzyme q10, Vit B2, zinc and anything that specifically raised serotonin like 5-htp or tryptophan” In context ↗ Made symptoms worse
- Riboflavin (vitamin B2)“The ones that made me feel worse after multiple tests were curcumin, ashwaghanda, co-enzyme q10, Vit B2, zinc and anything that specifically raised serotonin like 5-htp or tryptophan” In context ↗ Made symptoms worse
- Zinc“The ones that made me feel worse after multiple tests were curcumin, ashwaghanda, co-enzyme q10, Vit B2, zinc and anything that specifically raised serotonin like 5-htp or tryptophan” In context ↗ Made symptoms worse
- 5-HTP, Lysine, Taurine, Tryptophan“The ones that made me feel worse after multiple tests were curcumin, ashwaghanda, co-enzyme q10, Vit B2, zinc and anything that specifically raised serotonin like 5-htp or tryptophan” In context ↗ Made symptoms worse
- Citalopram (Celexa)“all but one (fluoxetine was manageable but hardly helpful) made me worse (citalopram, effexor, mirtazipine, amytriptline and especially wellbutrin).” In context ↗ Made symptoms worse
- Venlafaxine (Effexor)“all but one (fluoxetine was manageable but hardly helpful) made me worse (citalopram, effexor, mirtazipine, amytriptline and especially wellbutrin).” In context ↗ Made symptoms worse
- Mirtazapine (Remeron)“all but one (fluoxetine was manageable but hardly helpful) made me worse (citalopram, effexor, mirtazipine, amytriptline and especially wellbutrin).” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“all but one (fluoxetine was manageable but hardly helpful) made me worse (citalopram, effexor, mirtazipine, amytriptline and especially wellbutrin).” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“all but one (fluoxetine was manageable but hardly helpful) made me worse (citalopram, effexor, mirtazipine, amytriptline and especially wellbutrin).” In context ↗ Made symptoms worse
- Testosterone“that just make me even more depressed and for some reason even weaker” In context ↗ Mood or psychiatric effects
- Testosterone“that just make me even more depressed and for some reason even weaker” In context ↗ Made symptoms worse
- Dexamfetamine (Dexedrine)“I tried Dexamphetamine first and it made me jittery and panicky” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
I was weak all the time, like I had been tranquillised
In context ↗ - Brain fog
The brain fog felt like I had cotton wool in my head.
In context ↗ - POTS & dysautonomia
don't feel dizzy or weak walking around
In context ↗ - Temperature regulation
I would sweat a lot from my legs and feet and feel dehydrated
In context ↗ - Anxiety & low mood
I had panic attacks every day that would leave me in tears
In context ↗ - Vision problems
I had visual issues like VS, floaters and little flashes
In context ↗ - Gut problems
My digestion was also fucked and felt panicky
In context ↗ - Heart symptoms & palpitations
my heart would race after eating
In context ↗ - Headaches & migraine
I have stopped having headaches
In context ↗
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