I'm Getting New Disturbing Episodes

[sue1234]

I hate to blame every symptom that comes my way on POTS or low blood sugar, but I'm having something that is new and I don't know what it is. I had my first episode a few weeks ago. One afternoon I noticed I was getting a slow, anxious feeling coming on over an hour or so, and then the palpitations hit pretty hard, along with anxiety. I thought it was low blood sugar, but eating didn't make it go away. Then my arm and leg muscles felt stiff. I felt like I was almost needing to go to the ER, but I didn't. I finally took a small piece of my Propranolol, and at bedtime my Xanax, and everything mellowed out.

I honestly thought it was related to the prescription vitamin D I had taken a few days earlier, but, I just had another episode this evening, and I haven't touched the vitamin D.

The most striking thing is the arm and leg muscles. They feel stiff and also feel like I just lifted weights, when all I was doing was sitting watching tv.

Anyone have this, and what's up?

[blueskies]

Sue,

I can get a slow anxious feeling come on that then becomes a feeling of dread. In most cases the feeling just passes but sometimes it means I'm getting a severe migraine.

Last November I had the feeling but it went onto develope into an hour and half of me vomiting until I was finally able to stop then I spent 2 hours freezing cold -- on a warm night ( it was late spring here in Australia). I was so cold I was shaking so hard I'd call it juddering. I had every blanket that we owned piled on top of me. It took me two hours for that to settle down and then I went back to my more usual feeling of feeling overheated. About 2 hours before the anxious feeling started I had taken one tablet of an antibiotic (one that I'd taken some months before that I'd been able to tolerate even though it caused me to feel a bit nauseated). I'm not sure if I had a bad reaction to that tablet or not (no doctor has yet been able to confirm or deny this other than to say that with dys. it could have been 'anything.'. I'm seeing my allergist in March and hopefully she will be able to shed some light on this weird reaction. If it was a reaction to the pill. If she thinks not, I guess I'll have to see my pots doc to ask him -- I'm more than due to see him again anyway. I've told a neurologist, a gi doc and my gp about this episode at appointments I"ve had with them to talk about other things and none of them could come up with more than a bemused shrug. I honestly thought that maybe I was being to casual about the reaction when it was happening (by not ringing an ambulance) but the reaction did stop. And as I said, I felt fine as soon as it did. It was so mysterious.

Sometimes there are just no answers, I've found.

[comfortzone]

Sorry about your having to deal with this 'newish' symptom set... I know 20 years ago I had literally 'out of the blue' fulll on panic attacks - had no idea what was going on - they turned into fulminating ones where I lost all ability to function - really bizarre. They put me on a medication - actually 2 --- Norpramin and Klonopin for 3 months and I never had another one again! Then I learned I have Hypermobile EDS - and we get anxiety as a patient group often in our list of symptoms... So I guess that weird time came 'honestly' as they say...was so glad when they were gone never to return!

But to your point - recently I had a sense that I was about to fall and black out while at Whole Foods - my vision dimmed and I leaned forward - sure that that was my moment of death - it was the hugest DREAD I'd ever felt that accompanied that little 'episode' ... Later that night went to the ER and all was well except very very hypertensive - they pushed IV Labetolol and then I was normal again.

I have stiffness every single day -- I wake up with it - my legs are the stiffest and very heavy. My arms and hands in particular are stiff also. I do not know what causes this - but it is one of my biggest discomforts to have to literally use a wheeled walker some mornings for how stiff I get. I use it rarely but did a week ago daily for near a week - only for the first say 10 minutes of the day - then things get a bit better. Dr. Tinkle told me it's like "gelling" which is what people with RA or rheumatoid arthritis get.... I don't have that - so why I "gel" beats me!

The docs had been debating whether my neck arthritis and issues were causing these symptoms - one neurosurgeon said it was from my neck abutting my spinal cord causing some compression - but Mayo said absolutely not - so I went with Mayo as I don't want surgery that's for sure. Anyway - some days when I have that stiffness I get this nagging wondering - gosh are my limbs so heavy because of my neck situation? But then recall the numerous tests Mayo did that proved that not to be the case - sigh!

So do you have a healthy neck? Are you an EDS'er too? I know hyperventilating can cause muscle contractures - but it didn't sound like you were doing that -- I take propranolol too for hypertension and I've read it can help with situational anxiety - but I don't feel any different or less anxious being on it - is that why you are on it? HTN too? I hope this goes away for you soon!

[Schorobi]

Sue, it sounds like you may have had an "autonomic storm"

[sue1234]

Thank you all. An hour after I posted that I became really, really cold. And, I am a 24/7 hot person for years now!! At the same time, my hands and feet turned so white, they looked like a dead person. I know, Raynaud's. But that is just a label like POTS, too. I am a usual vasodilator, but obviously this was a vasoconstrictor episode. I have no clue what all that was or what precipitated it. I did not do anything different as far as activity, meds or food.

It does sound autonomic. Maybe a pheo episode? I have no clue, but after the first episode, I assumed it was a fluke. Now, with episode #2, I'm not liking the looks of this.

BTW, I have Propranolol from a visit a couple of years ago with a lung doctor. He said it is good for controlling anxiety-provoking episodes. So, I just keep the pills in my purse for rare situations.

[brethor9]

Hi Sue

I get the exact same type of episodes and that is why my docs are now pursuing MCAD...they think it could be like an anaphylactic episode maybe...... although when they first started happening my auto doc said they were storms....my para and sympathetic systems fighting it out.....either way they are not fun!!! I used to crash so hard during the cold phase my hubby would have to put me in a warm bath to bring my core up.....hang in there...hugs

Bren

[E246]

Yes, they are like storms. My arms and legs sometimes go weak and heavy but not stiff. i shiver afterwards which i am sure is a sign that sdrenaline has been released. I was told either propranolol or valium. Valium were quicker so i have stuck with them. Hope it doesn't happen again.

[blueskies]

Brethor9,

Can you detail one of those episodes, please. I thought I might have been in anaphylatic shock -- and kept my epi-pen right next to me. Although if it had gotten worse I don't think I would have been able to manage to jab myself with the pen. And in the back of my head I was thinking if this isn't analphylactic but pots related instead then the last thing I needed was more adrenalin in the form of epinephrine. But so far the three different docs haven't heard of an allergic response like that. So I have put it down to a 'pots thing.' As those docs were inclined to do.

[TCP]

I get a real mix of symptoms related to the autonomic neuropathy. I range from stiffness, freezing limbs to burning heat all over. I figure it's the effect on the nervous system. In the morning my legs stiffen up and that eases as the day goes by but the burning intensifies. I think we react so strongly to meds/supplements/food etc and even a slight stress plays havoc with the nerves.

[sue1234]

I just have to say that since I've written this, I can definitely say it is 100% related to vitamin D intake. I have spent another year and a half trying to get my vitamin D levels up, and EVERYTIME I take vitamin D, whether a prescription dose, less of it, or OTC D3 in varying amounts, I have had this exact scenario happen. I would love to know why vitamin D does this to me.