Am I doing well and likely to heal fast, or very unwell?

Hello, I am a 27 years old male.  I am 2.5 months off a 15 month long Valium taper from 20mg.  I got covid in January and lost any improvements I'd made since the jump.  The symptoms of the covid setback seem to have left, except for having terrible anxiety, and my symptoms from acute are even worse.  I do not know whether to attribute it to going through so much trauma, or if covid messing with my brain and "inducing" anxiety within me.

I can walk 10,000 steps a day, I can sleep probably six hours a night, I eat well, it seems like I am healthy.  I only have one symptom that remains 24/7—severe air hunger.  Otherwise, everything comes and goes.  Rib, chest, stomach tightness, throat clearing, choking, occasional raw feeling in head, panic, lack of interest in everything (most likely due to trauma from setback, can't watch TV shows or read stuff like I did before, etc.)

But my air hunger is so bad that it has kept me housebound for 17 months, and I haven't seen a single person aside from my fiancée.  It has never gone away, and makes my life completely miserable.  Haven't gone to a grocery store, pharmacy, doctor's office, etc.  And I feel completely trapped and unable to get help if I were to need it. Especially considering I absolutely do not want to take any medications for anything, including antibiotics.

Because of the fact that I have one main symptom, and I am young, does it seem like I would be expected to heal faster?  Even though the intensity of that symptom is very severe?

Has anyone had air hunger for such a long time and had it go away?  If so, when?  It is the main thing that makes me so miserable.

I didn’t have air hunger as severe as you so I can’t relate but you seem to be doing so well in many other area’s which is amazing for someone only 2.5 months off the drug who has recently had Covid.  I know its no comfort for me to say this because you’re so miserable.

 

Are you absolutely certain what you’re feeling is due to benzo’s, just want to make sure you’ve ruled out any other medical conditions.

That is very reassuring to hear, Pamster.  What were you experiencing around this time?

I experienced brief air hunger two times for maybe an hour total ever in my life before all this, and it seemed to be at the height of my tolerance withdrawal, and while messing with my doses pretty often.  But when I cold turkeyed Klonopin, I woke up in the middle of the night after the FIRST day I didn't take it, and I had severe air hunger, chest crushing, heart palpitations, burning arms and legs, cramping, etc. I reinstated within an hour of feeling that but only to .375 rather than 1mg, which I had tried to taper down in like a week and a half or something.  Most of those other symptoms went away, but the air hunger remained.  Then the next day I took .5 again, and it remained.  Took .5 for a week and it remained. Went to urgent care.  Nothing.  Took 1mg, started to finally relax some.  Eventually, started switching to Valium to taper, and I believe for maybe ONE day, or a few, it was gone for a time. Because I was taking Klonopin and Valium while crossing over, and I think maybe both of them together just somehow made it better.  Then as soon as I stopped the Klonopin, everything got worse, never stabilized, never lost the aor hunger, BUT it did feel more tolerable later on.  When I jumped, my air hunger became as bad as it was when I got off Klonopin the first time.  Started to feel a little more tolerable at 2.5 months, then got covid...got worse again.

 

I have wondered if it could be underlying LPR or hiatal hernia worsened by the stress of all this or anything like that, so I have recently switched to an acid watcher diet to see if that helps.

 

It is heart breaking to feel like I have started doing so well, but have such bad air hunger that I can't even tolerate anything.  I also just recently started getting anxiety all day long which seemed to happen directly after eating a dragon fruit, within an hour.  Now it has been several days, so I don't even know anymore.

I’m encouraged to hear you were improving before you got Covid, this tells me you will again.  Getting hit with an illness that mirrors benzodiazepine withdrawal and recovery has set you back but I’m confident you will improve.

 

I’m suspecting what you’re dealing with is a result of the benzo, its onset makes it seem likely so not sure we can blame it on another condition. 

 

I can’t remember what was going on for me at 2.5 months, nothing good, that much I know but mine was mostly pressure, no palpitations. 

 

We all share symptoms but there is one that is our cross to bear and it appears yours is air hunger.  For others its dizziness, headaches, depersonalization, head pressure, tinnitus, the list goes on, each of us have a different experience but also the same.

Thank you very much, Pamster.  It is helpful to hear things like this.  Thank you for being nice enough to comment on people's posts and help them like this!

 

I hope to see that improvement from before covid, this setback has been horrific and makes me feel so hopeless all the time.  It seems like a lot of things from the setback have left me, so noe I am left trying to get back where I was.  I can't tell if I'm a couple weeks away from it, or a whole year . . . because so many people who are much better off than me seem to get sick for so long with covid.  How am I supposed to possibly differentiate whether it's just benzo withdrawal, or still covid?? (Unless I get back to where I was)

So many Covid symptoms are neurological so I’m sure its tough to tell what’s what.  We have a few members who have had or have long Covid and its been doubly difficult for them so I can understand your frustration.  I hope you continue to recover from Covid so you can get back to your baseline, and I know patience is tough but with Covid and benzo recovery, time seems to be the cure. 

only time will tell for you , but It took me 18 months to feel healed from Val. withdrawal 

Thanks wyme, when did you start feeling like things became more tolerable?

Hi,

I'm one of those members with a covid/end of taper overlap, which makes it difficult to tell what to blame for what.  But I'm wondering about your "air hunger."  Covid can leave us with respiratory problems, but then, anxiety can fool us into feeling the same.  Either way, I'd suggest getting a fingertip oximeter.  Oximeters will tell you your O2 level and heart rate immediately, which can be very reassuring.  An oximeter can also be a great biofeedback device.  With slow, measured breathing from the belly you can actually watch your heart rate go down and your O2 rise.  It's great for relaxation practice.  Fingertip oximeters are available at just about any drug store, and usually less then $30.  Hope this helps!

 

clearbluesky

oops.....I'm so sorry.  I forgot about agoraphobia making it difficult to leave the house.  You can also buy an oximeter through Amazon. 

 

I also wanted to ask if you became agoraphobic AFTER taking a benzo.  Cause that happened to me.

 

clearbluesky

Hey Clearbluesky, I actually do have a pulse oximeter!  Sort of wish I had gotten one sooner.  I have had air hunger for a long time, but after getting covid I became unsure about if I was safe anymore.  It really sucks to get covid right at the times that we did and it makes it much more complicated.  :/

I became agoraphobic after benzos, yes.  In tolerance withdrawal that became one of my main issues because I had increasingly more panic attacks whenever I went anywhere.  Once I started withdrawal, I seemed to have less panic attacks, but have mostly become agoraphobic due to the extreme discomfort of my symptoms and especially air hunger.  :/

Great!  I'm glad you have a pulse oximeter.  Are your readings in the normal range?

 

Like you, I became agoraphobic AFTER benzo use.  This was back in the 80s and probably Valium, as I don't think Klonopin was on the market yet.  At the time I was under the assumption that it could be taken "as needed" so I'm sure I went weeks taking it and weeks not taking it.  Of course setting the stage for CT withdrawal which I would of course mistake for my natural state without the benzo and assume it proved I needed it! 

 

I was a freelancer working from home, decided I could use a vacation and booked a tour in Churchill, Manitoba, to see polar bear migration in the wild.  Up to this point, I had no reason to expect any problems, I always loved travel.  But when the doors of the plane closed at O'Hare for the connecting flight up to Winnipeg, I was whomped with an attack of claustrophobia like I never knew could exist before.  As soon as I got to Winnipeg I somehow managed to book a flight home. 

 

I've never been housebound, but have suffered various levels of agoraphobia ever since.  I thought I pretty much had it beat, hiking, kayaking and camping the last 15 years.  I would always take 1/4 Klonopin pill before leaving home for good luck (ha) and carry it with me in a little pill box like a fail safe, STILL not knowing it was more foe than friend!

 

In spring 2020 I started taking Klonopin more regularly due to health worries, and then when I stopped......well, that's how I landed here.  It also set me back agoraphobia-wise, and I had to work my way out of it all over again, though this time it was much quicker and easier. 

 

Now having long covid health problems, "acute WD" and my BF of 8 years suddenly dumping me, all at the same time.....whew.

 

Anyway.....enough about me.  My point is, reading this forum for a couple years I've gotten the impression quite a few have become agoraphobic AFTER taking a benzo.  Even the Ashton Manual refers to agoraphobia as a side effect, so it's not just anecdotal observation.  You'd think there would be a class action suit.

 

The good news is, you're young and you know the score about benzos, so you won't fall into the hole of trusting them like I did.  You're more likely to make full recovery, with techniques like "baby steps" that gradually grow your confidence.  First dealing with the "air hunger."  Would carrying your pulse oximeter with you help?

 

I can remember so many times after hiking wanting to go anywhere do anything rather than return home!  I'd call that a win, and you can do it, too.

 

clearbluesky

 

 

Clearbluesky, I do have normal oxygen levels, yes.

Wow, your boyfriend broke up with you too.  I'm so sorry. What terrible timing . . . I can't believe how terrible the timing with this has been.  It is very torturous. It was IMMEDIATELY when I made some improvement after months of acute suffering that I got covid.  -_- I am now afraid of the idea of getting it over and over again.

 

I honestly can't even try to focus on any agoraphobia because my other problems are just too bad.  :/ My breathinf and my setback are so bad that all I can think of is getting better from that.  I know that when I feel better I can fight the agoraphobia, but for now I am just fighting this stuff. I still don't even know if I have covid still or not.  It is very upsetting.

Sounds like you're probably over covid and may be experiencing post-covid after effects.  For me the after effects have been far worse than covid itself!  If you have any question about still having covid, you can order at-home tests.  But if you had it in early January, you are probably over the initial illness.  Like me, the timing is terrible and makes it impossible to tell what's causing what!

 

It seems both long covid and benzo withdrawal can have similar symptoms, but it is fundamentally important to establish whether your air hunger is anxiety or a post-covid health issue, such as cardio, pulmonary, neurological, etc. as these may require prompt medical treatment.

 

It's a great sign that your oximeter readings are normal!  That would seem to indicate the air hunger is WD-related anxiety rather than a covid related issue.  And if you're walking 10,000 steps a day without problems, your cardiovascular system is probably aces. 

 

But I'm no medical professional.  Do you have a primary physician?  I understand you would not want to go in for an office check-up, but a zoom phone appointment might be enough, or MyChart correspondence, if your doctor does that. 

 

clearbluesky

I meant to say that I'm not sure if I am dealing with post-covid/long covid still, or just withdrawal!  I just have not at all returned to where I was before getting covid, so I am just very disappointed about it.  I don't know what's happening to me but I just hope I don't have long covid.  I don't have a primary care physician, no.  But yeah I believe the air hunger is still just withdrawal-related, as it now mostly feels similar to how it did in withdrawal. I just for some reason absolutely cannot regain my interests back.  Before covid, even in acute, I could watch random stuff on TV, scroll on my phone, read books, etc. and at my best, was starting to buy clothes online and stuff again. I have been wearing only pajamas for over 17 months.  So now, it feels incredibly hard to get through my days, because I feel incapable of being interested in anything properly. Even my own thoughts are not just random anymore, they seem to ONLY focus on what has happened to me lately.  However, I think that may just be a trauma response rather than further brain damage, and my brain is probably waiting for things to calm down as much as possible before turning those things back on.  A week or so ago, I was starting to regain nostalgia back and interest in food.  Now, after a bunch of random episodes of symptoms that have scared me, I seem to have lost those things yet again.  :/

So is it safe to assume the air hunger is anxiety, rather than a physical medical issue?  (This is important.)

 

I hear you on the restlessness.  Summer 2020 I was so wound up I found TV intolerable.  I could only do 3 things:  clean out a storage closet, walk laps around my driveway circle, talk to my sister on the phone (for hours!) 

 

Eventually my CNS settled down and I could do other things.  But I think I'm hearing a similar state when you mention walking 10,000 steps a day.  So is there anything else you can do that is simple and physical?  Clean the house?  Paint walls? 

 

And don't worry......the restlessness will pass.  You could just use some kind of time-occupying patch for now.

 

 

Thank you for all your responses.  I would actually say that it is not anxiety, but also not another medical problem.  Because it is there 24/7 no matter what, even if my body and mind are calm.  It seems more like a malfunction in the centeal nervous system or something.  It improved to a degree during my taper and became more tolerable, but once I entered acute it got much worse again.  Then when I got covid, it got even worse.

 

I just walk so much because that was part of my schedule when I was still doing better and I still happen to be able to!  I had to build back up to it after covid.  And I am able to read some or watch TV a little, but only in a more uncomfortable way and the subject HAS TO pertain to something about my situation or how to heal etc.  I want to be able to just watch whatever like I did during my taper and acute, but it feels like I can only watch . . . medical stuff.  I have seen changes at times, but it seems I have had a setback within a setback within acute, so I have lost the progress that I already was noticing!

It's great that you walk!  Exercise helps the healing process.  It might also help to have some kind of project going on.  Any kind of project, cleaning or home maintenance or a hobby etc, can absorb restlessness, distract from worries, help lift depression and improve morale. 

 

Was there a hobby or craft you enjoyed before present troubles, or anything physical that just needs to get done? 

I have been able to draw lately to distract, but that is about the only thing I can do for some reason.  Never thought I'd be able to in my taper or after, and didn't really want to!  But one day, I reluctantly tried it because my mom suggested it, and it just happened to work as a distraction.  I can't really do much physical now though, my chest and ribs are always so tight and painful now and I don't want to add onto it!

It's wonderful you're into drawing!  What kinds of drawing?

 

As an artist, I'm all for creative endeavors!  Another thing that comes to mind would be a pet.  Dogs need to be walked, but a cat can be quite contented indoors.

Just abstract art, mostly.  I've been using art marker/pens lately just in black and white.  What kind of art do you make?

I have two cats, but honestly even when they sit on me, I just feel frustrated.  :/ With my air hunger, it makes me feel nore smothered!  I can't wait to not be so tempetamental.  A dog would possibly seem a little nicer to have though right now!  Sitting next to me or on a walk with me sounds okay.  The cats just feel like they don't care about me as much as a dog would lol.

Nice!  Too bad we can't post photos here, you could show us your artwork!

 

I agree about cats.  Soon as you sit or lay down they're on top of you, and they're just so contented you hate to move them off.  Oh, the things I would have gotten done around here if there wasn't a cat sitting on my chest.

 

If you have two cats already, a dog might be a bit much, but walking a dog might help get you out of the house! 

 

(You can actually walk a cat on a leash, but it takes patience.  A lot of patience.)

Yes, I think a dog would definitely be too much with these two cats lol.  And we've tried the cats on leashes—NOT good haha.