Suffocating Feeling - Breathing Is ****

[Foggy01]

Hey guys

For a few weeks there I had what a lot of you guys described, a sort of sensation where you'd forget to breathe. It was more a lack of sensation. There was no longer a breathing sensation feeling in the chest. I wrote about it here:

It got worse recently. Now I don't have the breathing sensation at all in the chest or diaphram or throat or sinus area. It feels like a constant suffocation feeling. It can get very bad if you're not distracted.

I really need some help in figuring out what might be causing this and what to do about it. I'll just tell you my story and I hope someone has some ideas.

So the doctors said I had no nerve issues and the POTS was just due to deconditioning. I had hyperadrenergic pots for like 5 years where my resting heartrate was 90 and on standing was 120. I had a brainfog and pallour and fatigue for a few years before I met the criteria for POTS, probably due to several deconditioning events over the years I think.

Anyway suddenly the hyperadrenergic POTS went away a few months ago. I've been feeling lightheaded with random aches and pains progressively. And stuff goes numb a lot or feels like a cold sensation. It's been progressively getting worse for the last few months. I'd also have my vision getting dimmer and dimmer and my mind started to get foggier and more "out of it". My heart rate can range from 60-90 at rest now but it's usually towards the 60 now. My standing is only 90-110 now and mostly towards 90.

Then suddenly a huge wave of weakness came over me 2 months ago and I got the "forgetting to breathe" thing permanently. I had it for a few weeks then I started to feel worse. My vision got dimmer again and I started to feel weaker. I had random tremors at night and had breathing difficulties randomly too. Then suddenly a few days ago I got a tremor and a terrible new weakness came over me and it feels like I'm suffocating all the time now. I don't have any breathing sensation in most of my respiratory tract now and it's **** to be honest.

I've been doing what the doctors said the last 2 months, an exercise program and added salt and water but it seems to be getting worse regardless. I tried to start the program back before this decline began but had to stop when the decline started.

I've decided to try florinef to expand blood volume. Blood volume getting lower is the only thing I can think of that can explain the worsening of symptoms. Another person on this forum had the similar "forgetting to breath" problem before and improved after expanding their blood volume. It's all I can think of to try and reverse this decline.

Does anyone have any other ideas as to what could be causing this? Why is my heartrate lower yet I'm feeling terribly worse?

I've probably forgotten a lot of details. I can answer questions if anyone feels they want to know more. I really hope there's a way to reverse these symptoms. Please help.

[Dizzysillyak]

Hi,

I'm a little confused by your description..

I had the feeling where my lungs actually stopped working during a two hour seizure once. I had to force air in and out of my lungs by taking huge breaths in and blowng it out. This resolved when the

seizure ended. Just fyi .. I was using an emt provided oxygen mask too but it didn't help. They didn't know what was happening and kept telling me not to breath like that.

And I've had the suffocating feeling your describing. Mine responds to 1 - 2 tsp children's dye free liquid benadryl.

I've never tried adult benadryl for this because it dries me out too bad. I'm taking 25 - 40 mg zyrtec during the

day for swelling too but I still need the benadryl if this feeling comes on.

I suspect it's just part of my undiagnosed mast cell problem. I have angioedema but it's mostly internal so I didn't realize it. Internal angioedema appears to be behind my pelvic and bladder pain and oi.

Many of us are finding out that we have

mast cell / allergy problems and meds are helping. Granted finding the right med is a pain. I have to

avoid my known triggers too. I tried adding them back in. I was ok at first but later failed.

Hth ... D

[Katybug]

Yes, I'm a bit confused too. Do you not breathe unless you are consciously thinking about it (which would be highly unusual) or are you feeling like you aren't getting enough oxygen in your body even though you are breathing normally and then this makes you feel like you need to compensate by breathing deeper and harder?

[Foggy01]

It's not shortness of breath. It's something far rarer and virtually unknown. Everyone (even doctors) seem to mistake it for shortness of breath. One though seems to get what I'm talking about and suggested it's a nerve damage issue. I'm not sure what to think about that but at least she took me seriously.

So it's not shortness of breath, it's some strange nerve issue where sensation is gone. Makes you sort of "forget" to breathe since you no longer feel the impulses for breathing. What I have now leaves you feeling like you're suffocating all the time. Very bad.

[Mytwogirlsrox]

Have you been investigated for myasthenia gravis? I read it causes issues with breathing. Might be worth investigating you for the achr antibodies? Not to freak you out

[Katybug]

Sorry. I haven't experienced that so no words of wisdom. But I do hope you get to the bottom of it. I felt like I was suffocating (but i was breathing just didnt feel like i was getting enough oxygen) when on beta blockers which turned out to be a mast cell reaction and it was NO fun! I feel for you.

So now that I said that, have you tried making sure this isn't a drug reaction by process of elimination?? I was put on the beta blocker 2 years before we confirmed mast cell and just assumed the suffocating feeling was part of the POTS. Once I realized I had MCAD I asked the docs to switch me off the Bob and I immediately felt better with that symptom. Maybe you are reacting to a medication and just haven't identified it yet. You don't have to have MCAD for that to be the case. Just a thought.

[spinner]

APNEA: have you had a sleep test?

02: copd? Asthma? Need oxygen?

PARASITES/GUT google the new parasite "protozoa" and air hunger

ADRENALS can cause air hunger, low cortisol, get saliva testing

THYROID

ARRYTHMIA

*****one drug that helped me with this type of air hunger was clonazepam.

[Angela]

clonazepam has helped me with the adrenal issues(fyi, it is also used in mcad treatment as it is a mast cell degranulator) with the help of taking h1's and h2's, not prescribed by my neuro although he knows about it and wasn't against it, I think I sorta get the not being able to breathe correctly. also, as other hyper's have noted the bb's made me worse. maybe ask your dr. about trying a sort of mcad regime and see if it helps? I also had bad visual issues that have gotten80% better since the h1's and h2's. The clonazepam was huge relief for adrenal episodes, especially in early a.m.

[RichGotsPots]

I have two huge polls on this issue. One for causes of pots breathing issues and things that help and then another for things that hurt. I seem to suffer the most out of the hundred people I spoke with who have different degrees of it. There are basically two types of pots breathing issues. One is a type of air hunger that is usually an acute onset brought on by an endless list. The second is the forgetful breathing you describe. I have both. Most my forgetful breathing comes on when I drive more than 5 minutes. This type of breathing issues may be due to vagus nerve neuropathy. There are ways to test for it but my specialist wont because he says there isnt a way to treat it. The 1st issue can be treated a few ways depending on the cause but so far no way has helped me. Not .2mg of florinef, not beta blockers, not mestinon, nothing so far. Im digging deeper into autoimmune issues and maybe getting ivig which is the ony thing ive heard of to repair nerve damage

[Angela]

parasite infection are described as leaving the host with air hunger. maybe check into that. same as mold toxination from what i've read. i def have air hunger. it's scary

[anna]

Foggy 01,

Sorry I can not remember are you a bendy (EDS or hypermobile) as well as POTSie?!

[Foggy01]

@Richgotpots: Yeah the forgetting to breath thing is ****. Im not sure if its nerve damage though. Others have reported it being transitory for them which suggests it isnt nerve damage. Im at a loss as to how something vascular can cause such a thing though but perhaps hypoperfusion of some tissues in the chest somehow causes a numbness/loss of sensation. For you and I it seems to be a perstitent thing sadly. I wish it were just once in the blue moon like others report.

@anna: I dont display any hypermobile joints but I havent had the blood test for the other types of EDS yet. Well see what the result is.

To be honest guys, Im really at a loss as to what is going on in my case. I can only hope someone can figure it out. Pulmonary tests come back normal and I dont seem to have any autonomic neuropathies or EDS or mast cell dysfunction. Another forum member suggested that there perhaps is an autoimmune component behind my hyperpots and it is excessive vasoconstriction that is causing hypoperfusion and sensation loss. But I dunno. Im trying florinef now. I really dunno what else to try. Anyway.good luck.to everyone.

[anna]

Foggy01,

Has anyone suggested your neck might be causing you problems?!

I found the following it might be of use http://www.sassit.co.za/Journals/Physiology/Rheumatology%20EMRs/AIRWAY%20PROBLEMS.pdf

http://www.upright-health.com/ehlers-danlos.html

I hope someone comes up with something soon.

[anna]

oh and this one:

http://www.upright-health.com/dysautonomia-multisystem-atrophy.html

[Foggy01]

@anna: I think a lot of stuff like chiari malformation and neck issues would have been ruled out by all the spine and brain MRIs I've had. I might bring it up with my doctor if EDS ever gets diagnosed. I take it EDS can cause a lot of breathing problems?

[anna]

I had thought that but it seems that it may not be noted if you have a flat on your back type MRI these things seem to be better picked up vertical MRI plus many Dr.s do not believe for example a grade 1 herniation would cause issues.

[Foggy01]

I had thought that but it seems that it may not be noted if you have a flat on your back type MRI these things seem to be better picked up vertical MRI plus many Dr.s do not believe for example a grade 1 herniation would cause issues.

I might look into this sort of thing if the EDS test comes back positive.

[RichGotsPots]

@Richgotpots: Yeah the forgetting to breath thing is ****. Im not sure if its nerve damage though. Others have reported it being transitory for them which suggests it isnt nerve damage. Im at a loss as to how something vascular can cause such a thing though but perhaps hypoperfusion of some tissues in the chest somehow causes a numbness/loss of sensation. For you and I it seems to be a perstitent thing sadly. I wish it were just once in the blue moon like others report.

@Foggy01 perhaps damage is the wrong word. Perhaps injured or the programming of the nerve not working. And depending on the level of injury correlates with the incidence and reoccurrence rate. All nerves lead back to the parts of the brain that control autonomic function. So the injury or malfunction could be happening anywhere along that pathway.

I found this on a non sited website:

X. VAGUS Nerve: Dysfunction of the muscles in the throat, shoulders, and back may create difficulty in swallowing or talking. Drooping shoulders and an inability to rotate the head away from the dysfunctional side may also occur. Malfunctions within other branches of this nerve may cause heart problems (including palpitations and a rapid pulse); breathing difficulties (including slow respiration and a sense of suffocation); a persistent cough; paralysis of the glottis; vocal cord spasms or paralysis (possibly resulting in an unusually deep voice, hoarseness, or a weak voice); and gastrointestinal disturbances (typically, constant vomiting). These nerves also affect the liver, spleen, kidney, thyroid, testes or ovaries.

The other possibility is its purely neurological at least the forgetful breathing anyway. Because when I drive I just feel my brain has trouble doing both breathing and driving at the same time. Something I've bever had problems with before. Breathing has always been my worst pots symptoms but in the biginning it was only bad with activity, kind of like asthma would be except it wasnt asthma. Now it's triggered by so many things. That leads me to believe that whatever is causing my POTS is still with me, so I'm leaning towards autoimmune. Hopefully I will get skin biopsies soon followed by a lip biopsy and a muscle biopsy. Blood test are barely 50% accurate for most autoimmune diseases, biopsies are much more accurate and sensative. And skin biopsies are more sensative then QSART for finding neuropathy. But as far as I know they only measure the sweat glands neuropathy which only gives them a guess at the rest of the autonomic nervous system. Breathing, HR, GI, etc are all controled by autonomic nerves and all of us are proof that we have so many differences btwn severity of symptoms. To me that much mean there are differences in neuropathy for those organs..

[mark141230]

Hi Foogy01,

Hope you've been well, I have the same symptoms just like you were you can't feel the sensation in your nose, chest and stomach. I would like to know if you already find the cause. I am having a hard time sleeping because of this. I've been to many specialist like cardio, gastro and as of this moment went to my pulmon for checking I am still waiting for the result of the test.

I have a hunch that their is a nerve something that cause this but that is still a guess. May I know what you do to fall a sleep or have you been taking medicine to sleep.

Hope you can read this. Thank you!

[dianne.fraser]

Hi. I also get the suffocation feeling, although my body has only ever forgotten to breathe at night during big exacerbations of my illness (apnoea, I guess). I don't know what causes it, but for me its been eased by two drugs:

• a small dose of lexapro at bedtime (an SSRI - I didn't tolerate it enough to take it daily, but it has helped in the past as a 'single dose' to ease my breathing problems when they've been particularly bad).
• More recently, I've been put on a calcium channel blocker. Again, I don't tolerate the dose that would normally be given to an adult, but I'm doing much, much better on 15mg three times daily, and my breathing problems have basically resolved (I know when my next dose is due, because I feel as though I'm not getting enough oxygen). I have no idea whether this will be sustained - I've only been on it for around three weeks.

Dianne

[RichGotsPots]

@foggy 01 how are you feeling these days? A pulomologist I recently saw told me he doesn't think its autonomic nerve damage because in lung transplants patients get all their autonomic nerves destroyed. So I asked how do they breath then? He didnt say anything. But that made me wonder. I think the nerve damage still could be be reason because nerves are constantly regrowing and in transplant patients with normal nerves the nerves probably instantly start growing around the transplant but for us something is blocking them from growing. And this constant regrowth probably explains why some times are better than others and why some recover. I have found out that I have Siogren's syndrome on top of my autonomic neuropathy, just recently. I know 40 other patients with pots and sjogren's Sjogrens can cause nerve damage and it attacks exocrine glands that secrete saliva or moisture products, so maybe deep down the alveoli are getting dry and stiff.

I am getting an evaluation for Churg Strauss Syndrome in 2 weeks and that is an inflammation of small Blood Vessels. 95% of patients have late on set asthma and 75% have sinus issues.

[spinner]

Believe me, Ive been there. Its as bad as it gets with this stupid disease. It has affected my ability to work, and to work out--having been athletic

my whole life.

I'll throw out the list of stuff I've invested/tested for and see if something sticks out?

1. humidity. breathing hot or saturated air takes more effort. A dehumidifier? COLD air is easy to breathe.

2. asthma. Many of us here have late onset

3. diet: allergies, late onset, eggs, peanuts, gluten, MSG?

4. muscular: are the muscles behind your lungs working?

5. meds: can slow breathing and heartrate

6. sleep apnea: have you had a sleep test--snore?

7. cardio: is your circulatory system working right? oximetry?

8. Lyme, anything infectious?

9. Virus

10. Leaky gut--causing autoimmune repsonse?

11. Hormones-- thyroid, dhea, adrenals? That can cause dyspnea

What triggers you? Is a question we all ask. We keep diaries. When symptoms worsen many times we can

trace it back to WHY.

Is it morning? Late at night? After eating?