Major Scary Episodes

[potsgirl]

Hi All, and thanks in advance to those who respond:

Yesterday morning after I got out of the shower and was going through my post-shower routine, all of a sudden I got hit with a blinding headache between my eyes, I broke out in a sweat and chills, got clammy, started shaking, got nauseous, and then my vision went completely black. I tried to feel my way over to the bed to lay down, but passed out before I got there. My boyfriend came in and once I came out of my faint, we took my BP on the floor, which was 87/72 and pulse 64.

I laid on the floor for a while, and then we got me onto the bed. Still not feeling well, we took my BP standing up, and all of the same symptoms came back again. We got a reading of 164/117 (crazy for me! I'm usually about 75-80/62 or so with a HR of 125-120 I've never had a BP that high). My vision went black again, and the next reading didn't catch, and the second one was 57/....By that time I was ready to faint again, so we got me back on the bed where I rested for awhile and slowly sat up.

I hate the ER, but this time I went. The episodes really scared me. What would happen if that occurred when I was home alone on the stairs or driving? The doc at the ER said that it was likely related to my OI and that my BP got way too low (but didn't know why - natch). I also tested positive for anemia, but my numbers were only slightly lower than norm. Last blood work, 4 months ago, showed me as being hypoglycemic but again, just slightly.

Anyone one else have something like this happen? How do you handle driving and staying at home alone? It's never bothered me to be home alone before. I also started Lyrica 2 weeks ago, and will be asking my pain doc if that could have had anything to do with this. Suggestions or information, anyone??

Thank you & cheers!

Jana

[TXPOTS]

Hi Jana,

I spent a good deal of 2009 bedridden and had similar episodes, which usually landed me in the hospital getting IV fluids. At the time, we did not know that I had POTS. If I had to guess, I would say that your blood pressure got too low and then your body sent out an adrenaline surge to compensate, resulting in the high blood pressure reading. Your pulse pressure was very narrow, perhaps indicating low blood volume. After these episodes, IV saline helped me tremendously. During my darkest days, I did not drive, and my mother stayed with us a lot. We have 2 young children, and I could barely care for myself, let alone them. I still have POTS, but these episodes ended after starting Florinef, DDAVP, and an exercise program. I know the Florinef is probably out for you if you have cardiomyopathy. Do these episodes happen often?

Regarding Lyrica, dizziness is one of the most common side effects and reasons patients stop taking it. I would definitely discuss this with your doctor, as you have planned. I know you have only been on the Lyrica for 2 weeks, but patients are supposed to taper off if they do decide to discontinue.

[mvdula]

Just want to chime in that I have very scary episodes (not the same kind) too - I HATE them. They always scare me.....and I often wonder about driving, taking care of my kids, etc. Fortunately, I do not pass out. You are not alone though!!

[skyblu]

Sounds really scary. I once passed out in the shower and have come close to passing out after a shower. I think it's because of vasodilation which is a result of the water being too warm. Are you making sure your showers aren't too hot? I'm alone during the day and keep the phone by the shower and always near me just in case.

[lieze]

I have hygiene issues because of this.

I totally fear the shower because of how I feel in there and sometime it doesn't hit me until after.

If I were you while you are feeling this way I would just wash up. That way you can avoid the changes that occur with dilation in blood vessels. I know it feels really good and is soothing.

I used to love hot showers and would stay in til my butt was beat red. Now I'm fearful to stand in the shower at all, do better if I take them later in the day rather than earlier. I had started to do baths but then I had the abdominal discomfort and really thought the baths could be the reason so now I either shower on a chair and make it quick or I wash up.

I did take a bath but washed the bath tub out with Tide and bleach directly prior to my bath and used no soap. It's like what's the point. But it did feel good to get in and soak.

So find your triggers and avoid them and make sure you're taking plenty of fluids and yeah I would question the Lyrica too. There are many meds that can cause some orthostatic hypotension so maybe it is just exacerbating yours. Maybe go ahead and try the taper that TX Pots suggested and see if you get a bit better.

The driving scares me. I try to only drive when I'm feeling up to it but I know these episode can come on very quickly so if I have to I pull over and call for help. It's so worth it not to risk it especially for everyone else involved my passengers and other drivers not to mention my own life.

But yeah I just had a pretty major episode Saturday mid morning with adrenaline surges that seemed like they just wouldn't stop. I felt plastered on the bed like I could not get up. Next time don't try it. Stay down til you feel like it's safe to get up. Drink fluids and let yourself rest til you get out of that touchy mode you were in.

It scares me though I think how can I work at all like this??? And I'm scheduled Friday yikes I wish not I wish there was a different way for me.

Okay I'm going to go drink some water after having this convo I want to do what I can to stay hydrated.

[MomtoGiuliana]

I've never had anything quite that dramatic occur, but I do get symptomatic in the shower or right after and I am sure it has to do with the warmth/vasodilation. I used to only shower at night b/c my symptoms were so bad in the AM during and after showering.

[Ashelton80]

I have hygiene issues because of this.

I totally fear the shower because of how I feel in there and sometime it doesn't hit me until after.

If I were you while you are feeling this way I would just wash up. That way you can avoid the changes that occur with dilation in blood vessels. I know it feels really good and is soothing.

I used to love hot showers and would stay in til my butt was beat red. Now I'm fearful to stand in the shower at all, do better if I take them later in the day rather than earlier. I had started to do baths but then I had the abdominal discomfort and really thought the baths could be the reason so now I either shower on a chair and make it quick or I wash up.

I did take a bath but washed the bath tub out with Tide and bleach directly prior to my bath and used no soap. It's like what's the point. But it did feel good to get in and soak.

So find your triggers and avoid them and make sure you're taking plenty of fluids and yeah I would question the Lyrica too. There are many meds that can cause some orthostatic hypotension so maybe it is just exacerbating yours. Maybe go ahead and try the taper that TX Pots suggested and see if you get a bit better.

The driving scares me. I try to only drive when I'm feeling up to it but I know these episode can come on very quickly so if I have to I pull over and call for help. It's so worth it not to risk it especially for everyone else involved my passengers and other drivers not to mention my own life.

But yeah I just had a pretty major episode Saturday mid morning with adrenaline surges that seemed like they just wouldn't stop. I felt plastered on the bed like I could not get up. Next time don't try it. Stay down til you feel like it's safe to get up. Drink fluids and let yourself rest til you get out of that touchy mode you were in.

It scares me though I think how can I work at all like this??? And I'm scheduled Friday yikes I wish not I wish there was a different way for me.

Okay I'm going to go drink some water after having this convo I want to do what I can to stay hydrated.

We bought one of those large "rain" shower heads with hard pressure so that I could shower sitting down. I probably haven't taken a shower in almost a year standing up. I also shower every night around 9 pm. Works well for me! Just a thought, wouldn't want to be stinky. LOL

[lieze]

Oh I love the advice on not being stinky

[Sarah4444]

I have had trouble taking showers for a very long time now, but after starting Cymbalta in February of this year the episodes became more severe, much like you are describing. I stopped Cymbalta and the "I'm going to die right now" episodes stopped, although I am still housebound and unable to look after my kids.

Sarah

[jenwic]

I tried Zoloft for POTS and I didn't faint, but I felt like I could many times. I was dizzy, heart just flying, very weak, extreme orthostatic intolerance. I ended up in the ER with a heartrate of 160. After IV fluids they sent me home. I stopped taking the Zoloft and went back to normal (or what "normal" is for me anyway).

[lieze]

OMG my SVT's started after I started Zoloft and didn't go away after I discontinued it.

The Zoloft did not stop my presyncope at all. I just still felt like I was going down and dopey as I did it.

To be fair and honest I was only on it for about 2 weeks and I had one day in there when it was in my system when it did make me feel less anxious. But just as I was to increase my dose I did and broke out in an allergy type rash and got flu like symtpoms. They told me allergy to it was rare to continue to try to increase and everything just got more intense so I quit cold turkey.

Anyway yep Zoloft then SVT's. I'd blip to 170-190