Super Scary Flare...anyone Had Similar?

[cmreber]

Hey everyone!

I have been doing pretty well lately, so I started to think maybe I was on my way to being done with all of this. (I know, wishful thinking...lol!) So I was driving home yesterday from getting my car serviced (fairly lengthy drive, about an hour and half), and suddenly my hands and legs were completely numb. And then my right eye wouldn't stop twitching and my vision went blurry and then it felt like I couldn't breathe. I pulled over, and then my hands balled up and I couldn't move them or open them. Some of this stuff has happened before, so I was trying not to freak out too badly. I decided to call my husband to come get me, but when I went to operate the voice activated system in the car, I found that I couldn't talk, and what I was able to get out was too slurred for the navigation system to understand. At that point, I really did get scared because I was alone and this had never happened to me before. I got out and flagged a lady down, and she called 911 and my husband for me, worried I was having a stroke or something. By the time the ambulance got there, I was a little better and could finally talk, just really slowly and it was hard to get the words out. My husband got there and took me to the ER himself. By the time I got there, I was doing a lot better. They gave me fluids and said I was dehydrated and my blood sugar was low, but that mostly these were all symptoms of hyperventilating.

I do know that since my sudden onset of POTS a few years ago I am much more proned to minor panic attacks (never had any pre-POTS), but I've never anything like this before. Especially since, aside from being slightly dehyrdated and not having eaten much, there really wasn't anything in particular to set it off. (Which, usually, there is something that has me stressed out or worried, like flying). I just had another episode while riding in someone else's car today (super embarrassing for me and frightening for them) and I'm starting to wonder if this is suddenly getting worse for some reason. At the ER they told me how to try to regulate my breathing when this happens, and that it can take from 20 to 40 minutes to completely subside, but it was super hard for me to get it under control today and it lasted on and off for about an hour (another long car ride). Also, again it got to the point where I was having a hard time thinking or talking.

Sorry for the long post! But I was wondering if this happens to any of you, and if so, is there anything besides trying to stop the hyperventilation that works for you. Also, do you know what sets this off for you? It's weird that it seems to have come on so out of the blue...I'm wondering if this is just something new I'm going to have to live with. I hope not, because it was one of the most embarrasing experiences I've had since my diagnosis! Not to mention scary while it's happening. It's like, I know that I'll be okay, but it still feels AWFUL! Once again, sorry for this being so long! Boy, isn't POTS just so much fun? ;P

Hope everyone is having a good weekend and feeling as good as possible!

~Christine

[Freaked]

Sounds very scary. Well, the ER are always going to assume it's panic when they don't find anything, but with POTS these sorts of attacks are different to regular panic and often a lot weirder and more extreme. It's difficult for us to stop hyperventilating sometimes, because cerebral hypoperfusion triggers it, presumably along with necessary adrenaline releases. Hopefully the best way to avoid future episodes is to be really strict about regular eating and drinking.

[Bigskyfam]

Sounds familiar. I has an episode like this driving. Out of no where I hit 140s, then 180 before I could pull over. No rhyme nor reason.

[lejones1]

I've had episodes like this too and I don't think they're really panic attacks, I think of them as "POTS attacks". The specialist I see said that what may seem like panic symptoms are actually physical symptoms for us, although we may get nervous because they can feel scary. I agree with Freaked...I think for me they're usually triggered by hypoperfusion and adrenaline. I usually try to lay down, or at least put my feet up, lean back, whatever I can do. Try to drink water and have a salty snack - carry these with you at all times if you need to. And do try the deep breathing thing, as well as telling yourself that even though you feel bad in the moment, it will pass. That won't prevent them but I think helps stop exacerbating them.

[artluvr09]

Do you ever get migraines? sometimes I get migraines and I have trouble thinking speaking and my hand and face and my tongue go numb. I hope you feel better!!

[blueskies]

I get panic attacks. Since my father died a few months ago they have gotten a lot stronger and more numerous, even though he as very elderly and his death was a slow expected one. It's not that I'm aware of thinking of him when I get them though. panic attacks can be caused by thoughts we are not even aware of having (thus we feel like they come out of the blue) or by my dysfunctional autonomic nervous system and it's out of whack sympathetic and parasympathetic nervous systems. I think mine are worse at the moment because of POTS and that in the last 4 months I've experienced my father's death and moving house (with my husband's 60th birthday party a week after we moved which I felt pressured into being involved in), and having the painful experience of having teeth filled without anaesthesia because I seem to have developed a problem with dental anaesthesia , and also having a couple of teeth removed 2 weeks after that, which meant having general anaesthesia, plus I have a loved family member i'm really worried about but can't seem to help. That and worry about not being able to keep my bowels moving enough and some breakthrough migraines that are the worst I've ever had in my 58 years is enough to flatten anyone, as my darling sister reminds me, let alone flatten someone with pots. I know we all go through these sorts of trying times.

I just try to remember, when in the midst of a panic attack, that it's not going to kill me. It might feel like it is, but it won't. I do worry about being out and having people see me panic and some days this is enough to keep me home if I'm feeling other potsy symptoms and sometimes it doesn't. Generally, I anxiously anticipate panic attacks a lot more than I actually have them.

I've found that lying down (on a couch or bed with my feet up but my head raised and lying on my side for some reason and sipping water) will usually bring back my ability to talk properly and then breath more comfortably.. So, I have to think pots plays a part in all the panic attacks I have.

blue.

[BSmith85]

I experienced a bit of a "remission" for a couple years following an ablation but when my symptoms came back full force it started while driving home from work on a couple different occasions. Didn't panic just had to pull over until I could regroup and continue on but I'm certain without my new meds I wouldn't be driving today.

[sue1234]

You sound like you had a classic hypoglycemia attack! You said the ER said your blood sugar was low, and more than likely it had begun to rise from the time it first hit you to the time you got checked at the ER. So, it was probably lower at your car. I have had many, many lows over the years. It sounds like you were getting so low that you were getting neuroglycopenic symptoms. It means your brain wasn't getting enough glucose. Your brain has a hard time functioning, probably why you couldn't talk correctly.

The panic is REAL. Your brain is starving for glucose and setting your adrenal glands on fire(adrenaline, cortisol) to help raise blood sugar.

Get a glucose meter and check your glucose at different times of the day. Keep the meter with you and definitely check when you are having symptoms!

[Chaos]

I agree with Sue. Sounds like it could very well be hypoglycemia and a physiological "panic" reaction occurring as a consequence.

Do you see a neurologist for your POTS though? Sounds like you might also want to run this by him/her as well if you do. The fact that this is happening repeatedly and is a big change from your norm seems worth checking it out with your doctor.

Don't get me started on ERs. If they didn't have UTIs and dehydration to fall back on as diagnoses.... Ugh!!

[cmreber]

Thanks for the responses everyone!

Freaked, I agree, the ER never really seems to know what to say other than anxiety, panic attack, etc. And I think you're right that it goes beyond just that when it comes to POTS. I looked up info on Cerebral Hypoprofusion and it definitely makes a lot of sense, especially since I have Hyper POTS and tend to have issues with adrenaline surges, etc.

Bigskyfam, it's interesting because it seems I've actually heard from a lot of different people who have had issues in the car. I wonder if part of it is blood pooling in the legs, especially when sitting in there for a long time. I also have found that I can't sing along to the radio much anymore without getting short of breath.

lejones1, I think you're right about them being more like "POTS attacks". I've seen friends who have experienced regular panic attacks and it doesn't look anything like what this is when it happens. They usually just need a few minutes to calm themselves down and they're good to go. If only it were that simple for us! I did notice it helps when I lay down (probably helps get some blood back to the brain! And I usually at least have my salt tablets with me and some water. Unfortunately that day I didn't happen to have anything with me, which was probably a big part of my problem!

artluvr09, when I very first got sick 4 years ago with this, I started having migraines every day, or every other day, and it was awful! Once I finally got a diagnosis, got on a beta blocker, and started getting my symptoms under control, I stopped having migraines, except for the occasional one. The interesting thing is that ever since Friday when this happened, I have had either just a regular headache or full blown migraine just about every single day. I think my body is just angry and out of whack right now. My migraines don't seem to affect my speech or anything like yours do though.

blue, first of all, so sorry to hear about your father's passing. I can very much relate. The August before last, I lost my grandmother, who raised me and my brother and was the only parent I had ever known. Same thing, she was elderly and it wasn't necessarily a surprise to us when it happened, but even still, it hit me hard, and for months afterwards I found myself having more breathing issues and panic attacks then ever before or since. I also try to tell myself that I'll be fine when this happens and that I just have to get through it and it won't kill me or anything. I do get so very tired of it though and sometimes wonder if this is just going to be something we have to live with forever.

BSmith85, it's good to hear you had a remission, and sorry to hear you had a flare up. They are never fun, and in some ways are so disheartening because it's like, you were so close to freedom, only to get sucked back in! Hopefully your flare up will be brief and you can go back to feeling good again!

sue1234, thanks so much for the info and recommendation. This is not something that I had thought about, but definitely worth checking into. My grandmother actually had issues with hypoglycemia her whole life (she would talk about her mother having to bring her some toast and juice before she was able to get out of bed). I think I'm going to definitely bring it up to my doctor when I talk with him and also get a glucose meter just because...it can't hurt!

Chaos, I do have a neurologist...a few other things happened this past weekend that needed my attention (husband ended up getting burned really badly over the weekend and ended up in the hospital and just got home Monday evening)...so I haven't yet had a chance to call my doctor and discuss any of what happened Friday. When I do I will bring up some of the information I've gotten on here and see what he thinks. And, yes, sometimes I'm not even really sure why I bother going to the ER at all.... LOL

[xRobin]

artluvr09, when I very first got sick 4 years ago with this, I started having migraines every day, or every other day, and it was awful! Once I finally got a diagnosis, got on a beta blocker, and started getting my symptoms under control, I stopped having migraines, except for the occasional one. The interesting thing is that ever since Friday when this happened, I have had either just a regular headache or full blown migraine just about every single day. I think my body is just angry and out of whack right now. My migraines don't seem to affect my speech or anything like yours do though.

That's so interesting to read that. I had new onset of daily migraines about six months before POTS onset. Like, never had a migraine in my life, suddenly BOOM crazy migraines with all sorts of weird migrainous neurological symptoms. When I was reading what happened to you in the car in sounded like a complex migraine aura (or a stroke, they can be very similar). But, from what others have wrote it was probably low blood sugar.

Hope you are feeling better.

[cmreber]

xRobin, I was never a person to get migraines either, before my first POTS onset. I'd never really heard of a complex migraine aura, but just looked it up after reading your response. It is interesting that both times I had this happen I ended up with a migraine afterwards. Of course, there is the low blood sugar factor, and the dehydration factor, and a whole lot of other reasons it could have happened. All things to discuss with the doctor I suppose! It's so confusing sometimes, because so much can be affected by POTS!!! LOL

[Lemons2lemonade]

The talking thing has happened to me before too.

[cmreber]

lemonsin2lemondade, did you ever find out what caused it for you?