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Really bad spell lately


JLB
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Almost too tired to type. I hope I ask this clearly.

How common is it to go back and forth with the symptoms? I felt better for a while. I'm having the swallowing difficulty again, affects my heart rate, gets very irregular. It's started happening again at times when I stand up, or get out of bed in the AM, too. I'm very dizzy today.

Same thing at bedtime/late evening, for some reason.

It's been over a week now, and today I'm completely exhausted and my legs aren't holding me up well.

We had some really hot weather lately - I stepped outside on a particularily humid day, and my body went limp, I could almost feel my system shutting down. Couldn't open my eyes without great effort. I'm wondering if that was the trigger.

How much does it go back and forth for you guys? How concerned should I be?

BTW, decided to see the cardiologist the neuro recommended. Just to see what he says. If he doesn't know anything about this, I'm done.

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JLB--I am sorry you are feeling poorly again. I hope it passes quickly. I have recoverd quite well, BUT, I still have had some pretty difficult days. One episode occured following a thyroid biopsy and lasted for nearly a week. I missed a day of work and was so so scared that I was going downhill again--and yet, after nearly a week I was back on the path of recovery.

Just yesterday, something happened to trigger a bunch of bad symptoms. I can't figure out what it could have been. I have been off my meds for 2 months and was pretty happy that things were going fairly well. My only symptoms had been moderate tachcardia and some palpitations. Well, two nights ago I had a pounding hr all night long, tons of scary palpitations, odd feelings in my arms and legs and head. I started back on my medications yesterday AM. I am just too afraid of becoming disabled again.

So, yes, I guess this is how it can go for some or many of us.

Hope you are feeling better today.

Katherine

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Hi!!

Unfortunately, I sound alot like you. I can be functioning well and something will set me right off. My last bad spell lasted almost 51/2 months!! I have learned to live day by day now. When I am having a good day I thoroughly enjoy it, even if it means paying for it the next day. I figure I still have to enjoy my life, even as it is :P

Hope your spell doesn't last long. God Bless

Sue

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JLB, most of us cycle through better and worse times, so unfortunately, what your experiencing with a waxing and waning of symptoms is quite common with autonomic dysfunction.

I find the hardest part is when it's during a really bad time, like you're in, and hoping/wondering if the "better" time will ever come. For me, it always has eventually gotten better again.

nina

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JLB,

ditto what everyone else said so far.

i am feeling like you are right now...hardly able to type! isn't it miserable! i feel so isolated from everyone!

anyway, yes, it is so unpredictable which is the hardest part...as is the part not knowing when/how/if you will come out of the relapse! but, i always do...but like sue said, they can last months...that is not said to scare you, but to normalize your symptoms and what you are feeling. so that you know you are not alone in these crazy setbacks that can last a day or a few months!

i also try to do the one day at a time thing, but it is hard.

any time i do have a sudden setback...i do try to figure out if there is a particular trigger...emotional, new med, stressful event, etc. ...that might be the trigger. often there is a trigger...and often it is a new med. or for me...this time around physical therapy. it is worth looking to see if you can find a trigger. otherwise...sometimes the reason remains a mystery!

all i can say, is to be understanding and nuture yourself through this time...know that it is not your fault. and know that you WILL have better days...it's just a matter of when.

hang in there....i know it *****! i am sorry for the language there, but it just does! i can't think of any other way to put it! ugh!

okay, brain fog. gotta get to bed.

emily

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Dear JLB, Yep, that's the way it goes. Heat, lack of fluid repalcement and all sorts of little things can set me off. I take any where from a few days to months to recover. I have gone as long as 6 weeks without hardly any trouble then WHAM!

Rest as much as you need to, just pushing yourself makes it all worse. Waiting for that "up swing" is the hardest.

Good Luck and try to remember that we are here to chat and remind you that "this too will pass".

Hugs, Blackwolf

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You all are a huge comfort. Thanks so much.

I slept well last night, first time in a while. Still really wiped out, though. Going through the "why me?" stuff - I need to readjust my attitude a bit. I like what I've read here, about how the bad times are really bad, but that makes the good times that much better. I need to look forward to that.

Off to rest for a while. See you all later, and thanks again. :P

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I was about to post on this topic when I saw your post. I have had POTS/NCS/many other disorders for years. I even had some symptoms as an infant. I got much worse when I was 15 and am now 23. I was steadily getting worse and worse. I originally had a type where I would go from remission to attack and back and forth. It eventually got to be a progressive, daily illness. I was so bad off...until I took Neurontin. It even looked like I was improving. I have done quite well, although it is clear that I still have POTS and I have some sort of autoimmune disease that has not fit into a clear enough pattern to get named . After a year of fairly decent health (maybe only 2 bad days a week, amazing for me, just crazy), I am now in a bad downhill again. I had a spell a week ago today that almost killed me. It was weird, I kept my wits about me even as it was clear that I had almost no pulse and had already lost my vision. I am so lucky that I made it because I was in the middle of Philly visiting colleges with my younger cousin. I had spent the four weeks before that feeling awful too. I also just found out that a bad 'sprain' that I had and went to the ER for after fainting was actually a broken wrist! I am so mad that the doctors were just so inept. 3 and half months later and it is still broken because I just had a proper X-RAY done now (they just did a terrible set of X-RAYs in the ER and only a PCP read them). Now I am probably headed for surgery- that should help my POTS flare up!

Anyway, I feel your pain. Sorry that you have to experience this junk. Relapse usually does come for a little while, so look forward to the respite and make the best of life in the meantime.

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i think pots can be so debilitating. For me, i was a fit and what i assumed to be quite healthy individual who had very slight symptoms, then one day it just came on - I was so dizzy for months that i couldnt really do anything.

My girlfriend was so supportive, but i knew it was awkward when she wanted to go out and i would come along by forcing myself and i would be so weak and dizzy that i thought i was going to pass out everywhere, and my heart would pound in my head, or i would be sitting there at a bar trembling, weak and spaced out and unable to really participate in a conversation as it was like i was ten seconds behind everyone.

One day in a mall an old 80year old man saw me and let me take his seat - it was almost like my last fibre of pride broke at that point,

Thankfully, i have improved enough to be able to work, and once i get through the first rough four or five hours of the day, can participate in most social things now and not feel ten minutes behind or so weak i am going to die.

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Dear JLB,

I cried so much over this "holiday" weekend stuck in the "why me" part of this illness. I am sorry for your pain, I know how hard this is. We all do. Thank goodness we have a place to validate we are not crazy and we are not bad people. Try hard not to blame yourself. The weather takes a toll on us and all of the viruses that go around and make other people a little "off" can hit us like a speeding train. It takes us sometimes much longer to rebound. But we can and do come back!

It was probably Budda who taught that life is about suffering and impermeance. Ick, I thought ... who'd want that life?! I want to feel good -- NOW. But every so often I get a small light feeling that affirms all things change... the bad times pass, the good times pass. Everything changes.

I hope this down times passes quickly for you and that you find a joyous moment of spaciousness to rest in while you recover.

EM

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Guest Julia59

I also understand your pain..........

I'm in a bad phase right now. I just try to run a few errands and it wipes me out so bad I feel like a congestive heart failure patient.

Today I tried the grocery store by myself. I didn't need a lot this time---so I thought...........well, you know how tricky this illness is. The weakness was unbelievable............i'm starting to feel the same weakness I had when I crashed with my ANS dysfunction in Dec. 2000.

My HR has been high--90s on my full dose of beta blockers---that is high considering i'm on 60 mg of propranolol a day. That is usually when I KNOW I having a relapse of some sort.

I hope this bad spell is short---very short. Nina is right-----things usually straighten themselves out. But this stuff sure does mess with our heads ---doesn't it?

Julie :0)

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Yeah, it does. It's like anything can trigger my ANS to go nuts.

I got 2 nights of relatively good sleep in a row, though. It helps. I'm on the upswing here today.

You people have the best attitudes. It rubs off on me, and I'm sure it does the same on those around you - I really appreciate you all, and I just wanted to tell you that. I hope I can get to the point where I can help others as you've all helped me.

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