Foggy01

Thanks. I sometimes get a few hours where ill feel like im going to pass out the whole time. Not sure which of these is worse. Very hard to choose. God what a life.

Yeah I've been told many times. My illness has recently gotten very worse in fact and I was told it was in my head again just when I need help the most.

hey guys. i was wondering if what you were describing is like what Ive been experiencing. i posted my experience in another thread. We were all talking about how we needed to conciously force our breathing at times or else we'd "forget" to breathe if that makes any sense. some of what youre both describing sounds similar to this. the only difference that stands out is i dont think i experience these chest spasms you mention.

This is actually a fairly new symptom for me. It's so strange too, because everything else seems to be going pretty well. I seem to be on the right dosage (beta blocker) and a high salt intake and moderate excersize is helping so much with most of my symptoms. But then, a couple months ago, this happened to me out of nowhere on the way back from a trip, and then again a few weeks later I had a very scary episode at night. Ever since then, it's been happening on and off, usually at night, but sometimes out of nowhere in the middle of the day. In fact, the other day my husband was driving and we just fine, talking and listening to the radio, and then suddenly, I began feeling like the breaths I was taking weren't giving me enough oxygen. The epidode didn't last very long...maybe ten minutes? I'm not sure if there is anything to do to help this. Usually, it sends me into panic mode, but then, once my heart rate shoots up like crazy and I feel like I just got an adrenaline rush, it starts to feel like the oxygen is getting to where it needs to be again. If it happens at night, I do find it almost impossible to get to sleep, because I have this crazy feeling that if I go to sleep my breathing will stop altogether because I'm not manually doing it/thinking about it. Especially because I have read that so many people on here experience this, it must be a part of the autonomic disorder. I would love to find something to make it stop happening though!

Yeah it's a horrible feeling. I've been having it for the last few days constantly now. Hope it goes away soon.

Hey guys. I really need your help. What you seem to be describing here just struck me a few days ago and has been with me since. I'd been getting worse with weakness and fatigue and such for a few months now and then suddenly this happened to me.

It is almost like the impulse to breath that one would usually feel is gone. I get no sensation when I breath in or out like I used to. There is no pleasure or drive or sensation there to tell me to breathe. So when I am consciously focused on my breathing its almost like I could "forget" to breathe. Is this what you guys experienced?

I have gotten this a few times before (I think) but nothing for this long and I never felt this weak and sick before. I feel very ill and this sensation (or lack of one) is proving very very disturbing when I try to get to sleep. I keep waking up after a few seconds of dreaming with a smothering/suffocating feeling. In the day I can try and distract myself from it a lot. The evenings I can't very well and then at night it is impossible to ignore and I get very little sleep. The few times I've gotten sleep the last few days were when I fell asleep due to exhaustion. I can't sleep normally anymore.

Guys is there anything I can do? How long did it last for you guys? Was it only when you were feeling very symptomatic (like when standing) or did you ever get it all the time?

Please if you could answer I'd really really appreciate it. Thanks.

I am wondering about this too. Someone here recommended him to me but I also wonder how thorough he is in determining types if not the cause itself.

For those of you who have significant "brain fog"/"mental fog"/"mental clouding"/etc. has this intensive exercise helped it? If so how bad was it before and how bad now? Thanks.

Where does Dr. Grubb practise?

Anyone know anywhere that doesn't just shoo you out the door if you have this variant.

Anyone know a place that'd bother to subtype it at all let alone get to the root of things?

Can't waste any more money going to these high profile places that do nothing but write a bill.

Foggy I haven't been diagnosed yet either, are you feeling any better?

No sadly not. The beta-blocker I was prescribed just made the fatigue worse. I'm meeting with my consultant again soon to discuss other options. That doesn't mean something simple like beta-blockers won't work for you though, so I wish you the best of luck getting your diagnosis sooner than later. I wouldn't wish this illness on anyone for a moment more than necessary, especially if there was a simple solution.

Not sure if you guys remember me but I posted back in march last year asking if anyone knew a doctor in Ireland who knew about POTS. Luckily someone pmed me a name and I booked an appointment and got diagnosed late last year! Hooray!

Just want to say thanks to all you guys. I wouldn't have gotten it if it wasn't for this great support network.

Thanks agaiN!

If you put "Ireland" in the DINET search engine (third button on top right of this screen), you will see some threads including some members from Ireland. These individuals aren't necessarily looking at the boards every day, so you may need to send them a personal email to request their advice.

I'm wondering whether you have a firm diagnosis or if you are struggling to get appropriate treatment. If you can't find anyone in Ireland, it may be worth paying for some advice in the UK, but you would need someone on your side at home to continue care and deal with prescriptions etc.

Hope you make some progress.

Thanks.

It looks like going to the UK will be the only solution then. From the posts I've been skimming through it doesn't seem other irish people could get much in the way of help here either. The UK it is.

Thanks again.

Hey. The Physician list only gives a list of doctors in the UK. I was wondering if there was anyone here that's from Ireland, so I could get the name of your physician.

I've been bouncing around between specialists and GPs for a few years now. They keep blaming my thyroid for my symptoms, even though they also say in the next breath the levels are fine. Or they say it's anxiety & depression and give me meds that don't do anything. I'm not saying I'm not depressed a bit (I don't know how you wouldn't be depressed feeling like this) but there's something else going on. They just ignore me though.

So I was hoping someone else hails from the republic of Ireland and knows a proper doctor here. I've had no luck so far.

Many thanks in advance.