Neuro/Breathing Problem

[Guest Ph03ziX]

Hi, after my very warm welcome here, I'd like to start

asking some serious questions. This one I had tonight

really bad, and it was very scary, it lasted about 30 mins

but it never truely goes off, just the acuteness.

I wanted to ask any of you if you have this as a background

symptom, or as an 'attack'. If I were to describe it I would say:

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*

Sense of 'missing something' (I get this sometimes on its own).

It's a bit like feeling suddenly very faint as if you need chocolate

fast, or something you 'NEED' desperatley.I'd describe it as an intense

feeling, like if you drove home and realised you'd left your child at a store,

BUT it feels inside you, not just emotional. Doesn't last long normally.

*

Not this time, but often sitting on the PC out of knowhere I feel

the need or just do it involuntarily.....I breathe in 20,30 mini breaths

in (pursed lips), then a huge one out and a large 'gap'. Then it will return to normal. What is awful is I know this is totally bizarre but I cant stop it.

Yes, very very odd. I hate it. Sometimes it might do it a few times, then disappear, and I'm like ***?. All I can say is it's not me doing it,

sometimes I even catch myself breathing IN in time with the music

....... rather problematic when you listen to high energy dance music!!!!

Jokes aside, it's not joke as you cant KEEP breathing in as your chest

expands to a maximum. For some odd reason, my body makes me do this.

I guess it does it in 'bursts' as I'm so weak with M.E/CFIDS it cant take a normal

deep breath. Who knows.

*

You feel you can't 'naturally' breathe, there is no impotece

to breathe in or out, if anything you breathe SLOWER than normal

and you have to 'think' about breathing in, otherwise you

feel you wouldn't at all. Compared to 'normal' when you end

you breathe out there is normally a feeling we have that

tells us to breathe in, or an awareness. This stops.

Breathing is a lot weaker too...

*

You feel very sleepy/weak and although it's terryfying

you certainly haven't got an adrenaline rush to leap out

the door to go to Hospital or even phone anyone, as you wouldn't

be able to 'think' to use the phone. I often have it so when someone

asks me a question there's a long pause, as if I can't speak as I dont

know how.

*Normally severe headache, this often comes on before the breathing

goes disjointed. I' describe this headache as one I never had in health.

It feels like something is stuck inside. A bit like when you frown, but

deep inside. Faintness/Numb Head/Numb Teeth/Like being in a dream.

I always have this, but when very bad it's like not being here, like seeing

a ghost in the mirror if you looked in it, not you. Another way to describe

it would be you're body is asleep, but you're awake.

*

Almost always triggered by eating or using your brain, e.g PC use.

Or just random.

*

There is a sense of cognitive 'loss' of NOT knowing how to breathe

all combined with the above, so it's doubly scary, almost like your

brain has forgotten how to do it automatically, and you're having to do it.

I normally try and combat this by 'singing' to myself, or talking if I can.

*

Loss of sensation you are breathing, so you have to make noises

to show yourself you are breathing in, e.g like mini 'coughs' in your throat.

E.g you cant feel or dont KNOW which is 'in' and which is 'out.

*

Often it ends quite abrubtly, and I go much more sleepy and weak/exhausted

and it's a lot like being on Valium really, relaxed, but this is the reverse

of how you are during the episode. (I get that all the time after a POTS chest pain/breathing stiffness event too) Weird. I used to get this after shaking

episodes on the PC as well, but that's another thread.

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I know this is probably my messed up brain with M.E/CFIDS, or you guys will

think. ***? ...but if anyone else gets this or knows what on earth it is, please say.

I have no idea if it's related to POTS, but I have it most of the time,

my girlfriend is used to me being 'weird' when it comes to breathing and making

'noises' as I cant feel it or aware that I am. I wake up with it from my sleep too

with it, and can't sleep because of it. I normally go to sleep at 5-7 a.m 'cos of symptoms.

A long shot, I wondered if the severe 'attacks' are some sort of electrical activity

in the brain, almost like a seizure? I've seen women have 'Autonomic Seizures' when they eat, but they look like a full on fit and they pass out, These turns I have would look from the outsider as I'm confused about what is what, literally. Not anxious, just 'off my head' and breathing in a weird way and weak/faint. It's my life, I've got used to it, but it gets progressively worse through the day, and these **** 'attacks' keep coming on.

I've been wanting to ask these questions and lots of others for a long long time, but I never had the guts as I didn't want people to think I was weird, or just have an 'anxiety' attack'. I've had lots of them, and it's nothing like any of these feelings.

Anyway, that's just some of what M.E/CFIDS or 'POTS' does to me.........

(If this is POTS!).

Many thanks.

Ben.

[morgan617]

hi Ben, feeling air hunger and stuff is a very anxiety inducing sensation. I got started on beta blockers in about 1995 and then started to notice that there were times I felt like I just couldn't get enough air, then I'd get a little anxious about it, then I'd get that big breath I needed and feel better, for about 2 minutes. Then it would just start over. Sometimes my ribs would hurt from doing it so much and I'd get weak and light headed. When I asked my pcp about it, he said it was "sighing hyperventilation" We always think of hyperventilation as people who are gasping and breathing way too fast. Well, I was pretty mortified and vowed to stop as it was caused by anxiety. But no matter how much I tried, I couldn't, then I started waking up at night feeling like I hadn't been breathing and would have to sit on the edge of the bed with the same thing. It seemed pretty stupid to me that it could happen in my sleep too. Well,I just put up with it. Then when I got really sick, they took me off the betas and I pretty much stopped doing it. I never thought about it and it just didn't happen. When they started experimenting with about a zillion different drugs to find one to control my bp, within a week I would be waking up at night, same thing. My doctor still thinks it's psychosomatic, but I rarely do it off the drugs and always do it on them, and I never think about this problem till it starts waking me up. Right now I'm not on anything and I have episodes about once a month that might last a couple of minutes. So i don't know. I think the meds trigger something in my breathing mechanisms. However, so many people take these meds and do just fine, Lord only knows. I am sorry this is happening to you, it is a very scary sensation. Discuss it with your doctor and see what he thinks. I just told mine I didn't care what he thought, I just know how it is. Good luck, morgan

[Radha]

yes i know what you mean, i have trouble getting a deep breath at times and i take beta blockers too, its a miserable feeling, but when i inhale my oxygen, i have my own tank at home, it helps sometimes, maybe you could ask your doc about renting them from a surgical supply store, the oxygen helps alot of my symptoms,

radha

[Gena]

Hi Ben,

You are definitely not alone when it comes to many of the symptoms you're describing. Don't chalk it all up to "anxiety" as many docs would have you do. I can identify mostly with the breathing issues. There are many, many days where my body "forgets how to breathe." I have to manually breathe in and out because my body is not on auto-pilot anymore. It's a weird feeling. And even though my cardio says I have very large, clear lungs for my small size, I can't do the very deep breathing I used to be able to when I meditate for example. Often it seems to make my symptoms worse and cause chest/heart pain.

However, there are other days my autonomic system is in sync and I can breath deeply just fine. I really don't think it's anything to worry about. It's just par for the course when you have autonomic and other issues. Uggh!

(I love the part where you mentioned breathing to the rhythm of the music...I caught myself doing that the other day...how funny!

And, like you, I get awful headaches like I never had before. A lot of pressure in the base of my skull and a band around my forehead. And indescribable type of pain I guess.

I think you'll find that many of us can relate to a lot of the symptoms you posted. Trust me, we don't think you're "weird" or just "anxious" for posting these questions. It's often comforting to find others who can relate to your symptoms and to know you're not alone!

[MomtoGiuliana]

Ben, I have also had these breathing symptoms in the past that you and others describe. In particular, I have had the feeling that my body had gone off auto-pilot, so to speak, and I have to think about breathing. It used to happen to me most frequently in warm weather. I know it is an uncomfortable and even scary feeling. Over time, this symptom has abated for me. I can't remember when I last experienced this, but probably over a year ago.

I think feeling assured that it is a benign symptom, can help make it more comfortable when you experience it. Do you have a doctor who can help you get reassurance that it is probably "just" autonomic dysfunction, and not something else?

The total exhaustion you describe is very familiar to me too. I was bedridden for a couple of months with this, 2 years ago.

I can't remember if you mentioned in your other post whether you have actually been diagnosed with POTS, or whether you are taking any meds or using any other treatment for it. Many people find relief with meds or other treatments, so hopefully you are carefully exploring those with your doctor.

Take care,

Katherine

[kristinp29]

Okay Ben, I will try to reply to everything included in your post, but I can't make any promises as it was VERY long!!

The sense of missing something is a feeling I used to experience at times. It's frightening. I never figured out how to make it go away. It just went away on its own.

About breathing...I can only tell you that sometimes I would (and still, on occassion) breathe out very rapidly. It's as if my diaphragm and other lung muscles contracted really fast and squeezed all the air out.

At least on these two fronts, I can tell you that you're not alone!!

[smiley0480]

Wow I can also relate to the whole forgetting to breathe thing, this is amazing to find people that are going through what I am, that sounds nasty but you know what I mean.

I want to thank you guys for having this forum it means so much to come here and just read and know that you are not alone.

I hope you get some relief from your symptoms Ben.

Take care,

Naomi