Valsalva/hold my breath

[neophyte32]

Good evening,
do you know why holding my breath for 1 minute 30 seconds caused me such a terrible neurological episode? I wanted to test my lung capacity and do some breath-holding (I know, it's stupid) and for the past 72 hours I've had what feels like a concussion, with terrible tinnitus, pain in the top of my head, the back of my head, and my forehead. I had the same thing happen when I did the Valsalva maneuver to clear my ears for the past two years (I was underweight without realizing it).
I had the same sensation when I was running three years ago ; those were my first symptoms, preceding panic attacks during exercise and theb develop MECFS. Does this happen to you too? It's like I have cerebral constriction.

I had a lot of MRIs before being bedridden, and nothing showed up.

 

[Murph]

I have a similar thing. Any hnnngh type activity - like a heavy lift - can cause it. I get that weird pain right on top of my head. Strange feelings near the temple. Takes days to clear.

Among my theories:
Blood flow control failure and ischemia reperfusion injury.

I associate it with POTS. I wonder if the blood flow to the head can fail on both sides, most often too little, but sometimes too much? Just an idea.

(PS, and tell me if you know all this, i'd wager your panic attacks while running are a POTS symptom - pumping adrenaline to constrict blood vessels creates a surge of anxiety)

 

[neophyte32]

I have a similar thing. Any hnnngh type activity - like a heavy lift - can cause it. I get that weird pain right on top of my head. Strange feelings near the temple. Takes days to clear.

Among my theories:
Blood flow control failure and ischemia reperfusion injury.

I associate it with POTS. I wonder if the blood flow to the head can fail on both sides, most often too little, but sometimes too much? Just an idea.

(PS, and tell me if you know all this, i'd wager your panic attacks while running are a POTS symptom - pumping adrenaline to constrict blood vessels creates a surge of anxiety)

A reperfusion ischemia lesion? It's impossible to repair... but in which organ would this lesion be located? For me, it's much more serious because in 2024, I couldn't even lift a heavy box without feeling this... Now I've been bedridden for over a year, and simply holding my breath gives me a concussion. I don't understand why these kinds of symptoms aren't taken into account for disability benefits... I'm not the only one, I imagine, and this was my first symptom with a panic attack. Not even post-exertional fatigue; it was immediate. I didn't have POTS in 2023 or early 2024 when this happened, but dysautonomia. In short, I don't understand anything. All systems are affected; it's incomprehensible.

 

[Hutan]

I wanted to test my lung capacity and do some breath-holding (I know, it's stupid) and for the past 72 hours I've had what feels like a concussion, with terrible tinnitus, pain in the top of my head, the back of my head, and my forehead.

I know it's easy to say that you should be seen by a medical professional, when the practicalities of achieving that are difficult and the outcomes are often profoundly disappointing, I hear you when you say you have had these symptoms before, but...

Those symptoms sound a bit concerning. What would you do if you had those symptoms and didn't have ME/CFS? Just reading those symptoms, maybe you should at least be calling whatever sort of health line system you have in your country to talk to a nurse about whether you should be seen by a paramedic or a doctor?

 

[neophyte32]

I know it's easy to say that you should be seen by a medical professional, when the practicalities of achieving that are difficult and the outcomes are often profoundly disappointing, I hear you when you say you have had these symptoms before, but...

Those symptoms sound a bit concerning. What would you do if you had those symptoms and didn't have ME/CFS? Just reading those symptoms, maybe you should at least be calling whatever sort of health line system you have in your country to talk to a nurse about whether you should be seen by a paramedic or a doctor?

I've already done that for two years... two years talking to neurologists, cardiologists, internists... MRIs, CT scans... nothing, it's all in your head, sir. I didn't think I was the only one going through this with a mecfs. In France, it's a lost cause without biomarkers or any trace on the MRI. Now im too severe for hospital
Every time I've had such an episode, my MECFS has worsened. I didn't come here to complain; I'm sharing a symptom I thought was specific to MECFS in the right section. Am I breaking any rules?

 

[Hutan]

I'm sorry, I don't think you are breaking any rules. It's just that I think it would be bad if we didn't acknowledge that the symptoms are concerning and warranting investigation. Even if it isn't relevant for you, it might be for someone with a similar sounding set of symptoms.

I know that having ME/CFS comes with a process of becoming accustomed to 'concerning' symptoms. It becomes so hard to know when to make another probably fruitless effort to try to get answers.

 

[neophyte32]

I have a similar thing. Any hnnngh type activity - like a heavy lift - can cause it. I get that weird pain right on top of my head. Strange feelings near the temple. Takes days to clear.

Among my theories:
Blood flow control failure and ischemia reperfusion injury.

I associate it with POTS. I wonder if the blood flow to the head can fail on both sides, most often too little, but sometimes too much? Just an idea.

(PS, and tell me if you know all this, i'd wager your panic attacks while running are a POTS symptom - pumping adrenaline to constrict blood vessels creates a surge of anxiety)

You talk about that :
Kell DB, Pretorius E. The potential role of ischaemia-reperfusion injury in chronic, relapsing diseases such as rheumatoid arthritis, Long COVID, and ME/CFS: evidence, mechanisms, and therapeutic implications. Biochem J. 2022 Aug 31;479(16):1653-1708. doi: 10.1042/BCJ20220154. PMID: 36043493; PMCID: PMC9484810.

 

[Felis Catus]

When I became severe, I noticed that breathing exercises made me feel worse.

In Visible (pacing app), there's an option to practice coherent (resonant) breathing. If you click to get more info, it says:

Safety note

If your illness is more severe, you may find it difficult to practice coherent breathing. If your Monthly Check-In score is 2.0 or below, we recommend starting with sessions of no longer than 2 minutes, and increasing this only if you feel able to.

The score is based on a short FUNCAP questionnaire. I can't see a reference on which they base their advice.

Breath holds seem to me more aggressive to the body than coherent breathing. Even box breathing made me feel worse when I was moderate.


I hope you get some relief soon.

 

[neophyte32]

When I became severe, I noticed that breathing exercises made me feel worse.

In Visible (pacing app), there's an option to practice coherent (resonant) breathing. If you click to get more info, it says:

The score is based on a short FUNCAP questionnaire. I can't see a reference on which they base their advice.

Breath holds seem to me more aggressive to the body than coherent breathing. Even box breathing made me worse when I was moderate.

Same here. When I was forced to see a psychologist and get antidepressants, I had to do daily breathing exercises and use a stationary bike until I was bedridden. The antidepressants also gave me POTS when I stopped taking them... or I had to combine medication and exercise. They forced me to do this for a year... So I have to admit, the term "cardiac coherence" really bothers me. Haha