What do you think about my hypothesis about CFS-CSFLeaks-ADHD?

[cfsJapan]

I think there is a deep relationship between cerebrospinal fluid, posture, and ADHD, but what do you all think? (I don't think this theory applies to everyone.)

I would like to hear your opinions on my outlandish (ridiculous) hypothesis.

For example, I have been diagnosed with ADHD + CFS, but any drug that increases dopamine only makes me manic, no matter how small the dose, and only SSRIs, SNRIs, and tricyclic antidepressants work for me. (I have never been diagnosed with bipolar disorder, and I never go into a manic state except when I take drugs that increase dopamine.)

In addition to basic executive dysfunction, my symptoms are a constant physical pressure on my brain, stiff neck, easy fatigue, spinal distortion (imaging diagnosis), and degenerative disc disease. (I was surprised to find out that I have degenerated discs even though I'm only 24 years old).

Also, my cortisol level is abnormally low (below 1.0. I was hospitalized and had a test done). Other symptoms include dry eyes and skin, erectile dysfunction, vision problems, and having Marcus Gunn syndrome at birth (now in remission?). I also had obsessive-compulsive disorder at age 10. (My OCD is now in remission.) off course and PEM.

All symptoms except ADHD developed after traumatic chronic stress from age 15-17. However, the causal relationship is unclear.

Given this fact, my hypothesis is that "the problem of my body's distortion causes abnormalities in cerebrospinal fluid and cerebral blood flow, which in turn causes my executive dysfunction by not activating the prefrontal cortex."

For example, when I take benzo, my executive dysfunction, fatigue, and brain pressure improve all at once. (I have almost no anxiety, and I have not been diagnosed with anxiety. Every time I say this, I am asked, "Maybe you have some unconscious anxiety?", but at least I am not aware of it at all.) )

Initially, I thought that benzo's effect on GABA and the balance with glutamate were improving my CFS and executive dysfunction, but now I feel that the muscle relaxant action may be improving neck stiffness and blood flow, and that these changes may be improving my ADHD. (Of course, it is also possible to take a middle-ground view that both mechanisms are involved to a certain extent.)

What I would like to ask you from here is:

① I thought I had CFS, but CFS is a syndrome and may be caused by some kind of disease. (My CFS did not develop post-virally, but after continuous traumatic stress from the age of 15 to 18. The causal relationship is unknown.

I suspect that it may be Low CSF Pressure Syndrome. However, is it also possible that it is EDS? The ANA test was negative. I have a narrow perspective, so there may be a disease I am unaware of that is the true cause.

② If there are any treatments or medications that seem to be effective for my symptoms other than ADHD, please let me know. I have tried almost all SSRIs, SNRIs, and dopamine reuptake inhibitors. The only ones that have been effective are Nortriptyline and Imipramine. , benzo (a drug that helps with sleep; for some reason Clona has almost no effect), Prozac, and Opipramol.

I have yet to try many drugs that affect cerebrospinal fluid or cerebral blood flow. I have never been treated by osteopathic or chiropractic care.

3. Please let me know if there are any drugs that you think would be effective for my ADHD symptoms.

I believe that there may be rare drugs that have not been tried yet that could work for me. I also feel that drugs that act on glutamate, drugs with completely new mechanisms, and peptides have potential.

Thank you for reading this far. When I post things like this, I am sometimes mocked for being obsessed with my health. I think they are right. However, I spent the years between 17 and 24 bedridden due to fatigue and pressure on my brain, unable to do anything due to ADHD, and living in hell every day.

Finally, some medicines have started to work for me, and I am now able to move around a little. From that experience, I want to research even the smallest information and possibilities in detail and somehow rebuild my life.

This is a long post, but even a partial answer is fine. I would be happy if you could point out some of my foolish assumptions and knowledge.

 

[MecfsPatient]

Wish I had energy to write a longer response but you may find this thread by Jen Brea interesting https://threadreaderapp.com/thread/1468650161828098050.html

I think all these things are for sure related

 

[linusbert]

Initially, I thought that benzo's effect on GABA

what is benzo?

In addition to basic executive dysfunction, my symptoms are a constant physical pressure on my brain, stiff neck, easy fatigue, spinal distortion (imaging diagnosis), and degenerative disc disease. (I was surprised to find out that I have degenerated discs even though I'm only 24 years old).

this could be indeed a problem.
if you check for vitamin D status, and calcium and phosphor?
vitamin d , a, k2, magnesium, etc. might help with bringing some substance back to the bones.
vitamin D and A need to be both be given, but probably much more D as A.

weak neck can be a cause for cfs and a lot of other weird symptoms.

Thank you for reading this far. When I post things like this, I am sometimes mocked for being obsessed with my health. I think they are right. However, I spent the years between 17 and 24 bedridden due to fatigue and pressure on my brain, unable to do anything due to ADHD, and living in hell every day.

you were bedridden in young age, someone should be obsessed with your health! and if its not the people we pay for health services like MDs , its gotta be yourself. sadly so.

This is a long post, but even a partial answer is fine. I would be happy if you could point out some of my foolish assumptions and knowledge.

not reading anything foolish in your text. valid thoughts and i feel it checks out with other stuff i have read in this forum.


now comes the chatgpt ai analysis of your post, might also reveal interesting perspectives:

Spoiler

The hypothesis presented is unconventional but not implausible in parts. It combines several medical and neurological concepts (e.g., cerebrospinal fluid circulation, postural abnormalities, neurochemical dysfunctions) with subjective experience and empirical self-observation. A systematic assessment follows:

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1. Core Hypothesis: Relationship Between CSF Flow, Posture, and Executive Dysfunction​

The hypothesis is speculative but there is limited scientific evidence suggesting a structural-functional relationship between posture, spinal mechanics, and cerebrospinal fluid (CSF) flow:

• Craniocervical instability (e.g., in Ehlers-Danlos syndrome or Chiari malformation) can impair CSF circulation and cause pressure changes. Case reports describe cognitive symptoms or even "pseudo-ADHD" in such conditions.
• Spontaneous intracranial hypotension (SIH) can lead to fatigue, cognitive dysfunction, and head pressure. It is underdiagnosed and may occur without classic orthostatic headache.
• A direct link to ADHD is speculative. However, when vascular or mechanical factors impair cerebral perfusion or CSF dynamics, secondary cognitive dysfunction is conceivable.

Assessment: The hypothesis is not part of standard medical doctrine but not unreasonable in the context of functional neurovascular or structural syndromes. Imaging diagnostics (e.g., upright MRI, CSF flow cine MRI) could provide relevant data.

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2. Symptom Profile and Differential Diagnoses​

The symptoms described—neck stiffness, fatigue, dysautonomia, neurocognitive dysfunctions, hormonal irregularities—fit the clinical picture of several conditions:

• Chronic Fatigue Syndrome (ME/CFS): Includes post-exertional malaise (PEM), autonomic symptoms, cognitive impairment.
• Postural Orthostatic Tachycardia Syndrome (POTS): Often comorbid with ME/CFS; involves neurological and vascular dysregulation.
• Ehlers-Danlos Syndrome (hypermobile type): Can cause spinal instability, dysautonomia, joint and muscle complaints. A negative ANA does not rule it out; diagnosis is primarily clinical.
• Spontaneous Intracranial Hypotension (SIH): Should be considered if there’s persistent head pressure, fatigue, and atypical orthostatic symptoms.
• Hormonal dysfunction (e.g., hypocortisolism): May be secondary (e.g., stress-induced) or central (e.g., pituitary or hypothalamic dysfunction).

Recommendation: A systematic assessment for neurovascular dysregulation, endocrine dysfunction, and possible structural anomalies (especially in the cervical spine and craniocervical junction) is appropriate.

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3. Pharmacological Options and Therapeutic Approaches​

A. For Neurocognitive Symptoms (ADHD-like)​

Given that dopaminergic stimulants lead to overstimulation, alternative treatments should be considered:

• Atomoxetine (selective norepinephrine reuptake inhibitor) – sometimes better tolerated in dopamine-sensitive patients.
• Modafinil or Armodafinil – occasionally effective in CFS or ADHD patients with lower dopaminergic overstimulation potential.
• Memantine or Amantadine – affect glutamatergic systems, potentially neuroprotective, may help executive function in individual cases.
• Baclofen (central muscle relaxant, GABA-B agonist) – could modulate both muscular tension and CNS-related symptoms.
• Peptide-based agents – e.g., Selank, Semax (used in Russia), remain experimental.

B. For Somatic Dysregulation​

• Low-dose Naltrexone (LDN) – used off-label for neuroinflammatory conditions, including ME/CFS.
• Clonidine or Guanfacine – alpha-2 agonists; reduce sympathetic tone, may help with sleep and executive dysfunction.
• Acetazolamide – occasionally used in cases of suspected CSF flow dysregulation.
• Cerebrolysin (used in Eastern Europe) – neurotrophic peptide therapy, though evidence is limited.

C. Non-Pharmacological Therapies​

• Osteopathy / Manual Therapy / Craniosacral Therapy: Anecdotally useful for musculoskeletal tension and functional disorders.
• Upright MRI for detecting instability or CSF flow abnormalities.
• Neurofeedback or Cognitive Behavioral Therapy for executive dysfunction (independent of underlying cause).

Note: Use of experimental medications or therapies should always occur under specialist supervision.

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Conclusion​

• The hypothesis falls outside conventional explanatory models but is not unfounded given the multifactorial nature of the symptoms.
• A systematic diagnostic workup targeting structural, vascular, and neuroendocrine components is warranted.
• Treatment should be individualized and symptom-oriented, possibly involving off-label or experimental approaches.
• The paradoxical response to dopaminergic agents suggests an ADHD-like syndrome not primarily driven by dopaminergic deficit; thus, alternatives acting on norepinephrine, GABA, or glutamate are worth exploring.

If desired, I can provide a structured differential diagnosis list including diagnostic criteria and further testing recommendations.

also i did ask for natural therapies if any:

Spoiler

Several non-pharmacological or "natural" approaches may be considered as adjuncts, particularly when conventional medications are insufficient, poorly tolerated, or undesirable. Given the described symptom constellation—fatigue, executive dysfunction, pressure sensations, dysautonomia, neck stiffness, and possible CSF/blood flow dysregulation—interventions can be grouped as follows:

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1. Targeting Muscle Tension, Posture, and Possible CSF/Blood Flow Obstruction​

A. Manual and Mechanical Interventions

• Cervical spine-focused physiotherapy (not general): Specifically targeting deep neck flexors, postural correction, and muscular imbalances.
• Craniosacral therapy (osteopathic technique): Anecdotally reported to reduce intracranial pressure-like symptoms; evidence is limited.
• Atlas realignment / NUCCA chiropractic: Based on the hypothesis that atlas subluxation affects CSF/blood flow. No solid evidence, but some case reports suggest improvements in fatigue or cognitive symptoms.
• Neck traction or decompression: Under professional supervision only. May relieve cervical nerve compression or reduce myofascial tension.

B. Posture and Movement

• Alexander Technique or Feldenkrais Method: Neuromuscular reeducation methods; aim to improve habitual postural strain and coordination.
• Daily inversion or head-down tilt (moderate): Experimental; may transiently affect CSF dynamics or cerebral perfusion. Not recommended without supervision if intracranial pressure is abnormal.
• Gentle yoga or Qi Gong: Low-intensity movement focused on breath and posture; potentially improves autonomic balance.

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2. Mitochondrial / Neuroenergetic Support​

A. Nutrients

• Coenzyme Q10 (ubiquinone or ubiquinol): May support mitochondrial function; used in ME/CFS studies.
• L-Carnitine or Acetyl-L-Carnitine: Supports mitochondrial fatty acid transport and energy metabolism.
• Creatine monohydrate: Buffer for intracellular ATP; beneficial for fatigue in some studies.
• Magnesium (e.g. glycinate, threonate): Involved in neurotransmission and muscle relaxation; threonate crosses the blood-brain barrier.
• Omega-3 fatty acids (EPA/DHA): Anti-inflammatory; may support brain function and reduce neuroinflammation.

B. Herbs

• Rhodiola rosea: Adaptogen; may reduce fatigue and improve cognitive endurance.
• Panax ginseng or Eleutherococcus senticosus: May improve stamina and mental focus; possible autonomic effects.
• Ginkgo biloba: Vasodilatory effects, possibly improves cerebral perfusion and executive function; use cautiously if risk of bleeding.
• Lion’s Mane (Hericium erinaceus): Potential neurotrophic effects; evidence mostly preclinical.

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3. Autonomic Nervous System Modulation / Stress Axis​

A. Breathing and Relaxation

• Buteyko or slow diaphragmatic breathing: Regulates autonomic tone, may reduce sympathetic overdrive.
• HRV biofeedback: May improve vagal tone and stress reactivity.

B. Cold or Heat Therapy

• Contrast showers or cold face immersion: Parasympathetic stimulation via the diving reflex.
• Infrared sauna (low-temperature): May improve circulation and subjective fatigue; contraindicated in some autonomic disorders.

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4. Sleep, Circadian Rhythm, and HPA-Axis Stabilization​

• Bright light therapy (morning exposure): Stabilizes circadian rhythm; useful in cortisol dysregulation and fatigue.
• Melatonin (low dose, 0.3–1 mg): May assist in circadian entrainment and has antioxidant effects in the brain.
• Ashwagandha (Withania somnifera): May modulate cortisol levels; evidence for stress-related fatigue.
• Phosphatidylserine: May reduce high evening cortisol; no effect in confirmed low cortisol.

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5. Neurocognitive and Executive Function​

• L-theanine: Mild GABAergic and glutamatergic modulator; may improve cognitive calmness without sedation.
• Caffeine + L-theanine (in moderate doses): Combined effect may support executive function more smoothly than caffeine alone.
• Alpha-GPC or CDP-choline: Choline precursors; support acetylcholine transmission and possibly attention/memory.
• Uridine monophosphate + DHA + choline (Kennedy pathway stack): Experimental neuroregenerative support.

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Warnings and Notes​

• Individual reactions may vary. Some substances can worsen symptoms in sensitive individuals (especially in ME/CFS or dysautonomia).
• “Natural” is not always “safe” – some herbs or supplements can interact with medications or affect blood pressure, hormones, or neurotransmitters.
• Start one intervention at a time and observe carefully; avoid stacking multiple new substances simultaneously.
• Therapies targeting biomechanics (manual work, traction, etc.) must be performed by trained specialists to avoid worsening any instability or structural pathology.

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If desired, a prioritization matrix or protocol suggestion can be developed based on dominant symptom clusters.

 

[bad1080]

what is benzo?

i am guessing: https://en.wikipedia.org/wiki/Benzodiazepine

 

[bad1080]

i had a CSF leak once and i'd never mistaken it for ADHD. it causes major headaches and unbearable dizziness when standing up. i could not function at all when standing up and it would immediately ease off when laying down. after maybe a week i could do stuff standing up for 5mins and from there it got gradually better.

 

[Rufous McKinney]

For example, when I take benzo, my executive dysfunction, fatigue, and brain pressure improve all at once. (I have almost no anxiety, and I have not been diagnosed with anxiety. Every time I say this, I am asked, "Maybe you have some unconscious anxiety?", but at least I am not aware of it at all.) )

I can take about 1/4 of a 0.5 mg Xanax and within twenty minutes, the anxiety has entirely fallen away.

Mine is called the Molecules of Dread. Drip drip drip. Those molecules seem to stop being produced


That tiny bit of Xanax entirely stops "OCD" type feelings as well. As OCD = also Anxiety- your trolling over the same thought.

Similar also to feeling "depressed". Depressed= trolling over the same thought.

This CFS includes having alot of difficulties paying attention, as concentrating costs energy.

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I'm sorry you have felt unable to discuss your health issues with others, it's too bad when health gets complicated, humans want and need to talk about it.

Ignoring it does not help you find ways to feel better, so you're faced with needing to invest some time and effort into finding a path to feel better.

And personally, I feel that issues with our necks are significant and related to posture, alignments, chronic inflammation from those alignments, etc.

and the flow of energy through the spine and brain, these things are important.