Does anyone else have this happen to them.

[sarah0683]

I am not sure if this happens to anyone else but for the first time in a long time I managed to go out for a nice dinner with my father. We went to a buffet style restaurant. While sitting, eating and trying to have a conversation... I had the weirdest sensation come in waves...it was so odd and scary. I kept getting this feeling where my stomach would feel like it was sinking/rolling and my body would go completely numb, I would get a warm sensation from head to toe but not like a flushed feeling, my throat would get tight, I found it hard to concentrate and it would make me catch my breath. It would last for about 10 seconds and go away I would feel ok, a bit dizzy, shaky and my mind was a bit foggy but better than I feel normally when I am having what I call a "POTS flare up"......about 20-30 seconds later it would happen again. I could almost compare the sudden sensation to feeling very startled it would come on fast like that and it honestly was what it felt like. I was not anxious, my father and I were having a quiet dinner just talking about everyday things... nothing upsetting that would cause anxiety. This is not the first time it has happened but I always wonder what causes it or if anyone else gets these sensations. I have been diagnosed with POTS, IST, vasovagal syncope.

[LivingInHope]

Well, I think perhaps some of the side effect of personality are long lasting (went off that drug back in 2003), but I've lost some of the weight that drug caused me to gain, so I'm thankful for that.

[klm0624]

@Surgi: I had huge concerns about the Celexa and was desperate so I stuck with it... Thankfully, I haven't had any adverse affects beyond the initial side effects while adjusting to the medication.  I hope things are going better for you now...

@LaLa4:  Mine symptoms also came out of nowhere... My drs kept saying it was "anxiety" and I knew that wasn't the case.  When I experienced TRUE stress or anxiety, the episodes didn't happen.  But they did happen in the middle of the night, while watching tv, in the drive-thru - totally random.  Your symptoms sound very close to mind, the "waves".  It is very scary... One nurse told me to inhale and hold my breath for several seconds during the presyncope and this would increase oxygen in the bloodstream and to the brain and it helps.  The Celexa did work for me, I really hope you get the help you need.  Best of luck to you all  :-)

[LaLa4]

wow, I am so glad you all brought this up.  I've had episodes very similar to this, a couple times while driving. For me it feels like everything (sounds and vision) are coming in and out like waves and my senses are all distorted and I feel floaty and outside my body. It's scary and it's happened while I'm driving!  But it happens completely out of nowhere.  
Someone mentioned it possibly being related to an oxygen decrease in the brain and that seems to make sense to me.  I also have adrenaline surges and that's a big issue for me so that could be related.  It doesn't seem like a panic attack to me because while I get palpitations during it I don't think my heart rate drastically increases which I think it should with a panic attack.  On that note, I do take klonopin for the adrenaline surge issues but I don't think I'd reccommend it for this state if your heart rate and bp are low...it calms your system down even more, but I'm not dr. so I could be totally wrong.
I think this state has a name but I can't remember it, does anyone know what I'm referring to?
If you guys find any research on this, please post a link!

[LivingInHope]

Celexa- what it did to me (took it for I think about 2 years)- changed my personality, loosening the lips and brought out anger that wasn't like me, seemed to exacerbate migraines and caused me to gain I believe it was 35 pounds, making me weigh heavier than I ever had in my life.  I hope these things aren't/don't happen to you on it.  Since I've been off it, I lost part of the weight I gained.  

[beema36]

I am on a betablocker which has helped the tachycardia. Now my hearts very slow. I also have very labile bp which I.think r from adrenaline surges from the AD. I have a diagnosis of.ncs. I am unable to be on my feet long or my bp.drops and I.faint. I.have presyncope most of the time. It has change my life dramatically for the worse. Ssris and related drugs cause me to have life threatening hyponatremia. I was on severe fluid restriction 7 yrs b4 drs figured that out. I am glad ur helped by yours.

[klm0624]

Celexa (and other SSRI's) can help block the bad "signal" from the Vagus nerve which causes the drop in BP triggering the VV symptoms.  It doesn't work for everyone apparently but it was a miracle for me.  The side effects were so bad that I almost stopped taking it but it helped the VV symptoms and I have adjusted finally to the Celexa.  My doctor told me to give it a few weeks and she was right.  The symptoms improved within a few days but are now almost completly gone, it's been a couple of months.  I'm sorry that this isn't an option for you, what does your doctor recommend ?  How severe are your symptoms ?  I really feel for you, it's not fun I know.  I was pretty much bed-ridden for more than a month... with barely a clue as to why...

[beema36]

Kim- can u explain to me how celexa would help.the vasovagal malfunctioning? This won't be an option for me as can't take those drugs but am interested as I have never heard this

[klm0624]

Research Vasovagal Syncope and the Vagus nerve.  The malfunction of this nerve affects your BP and is also related to stomach issues (the nerve travels from your brain stem down both sides of your neck down around the heart into the abdomen).  The Vagus nerve signals your body to drop BP sometimes dramatically resulting in sharp drop in oxygen and blood flow to the brain.  I also had these "episodes" - it feels awful and I do not believe it's anxiety related.  At first, I drank a lot of Gatorade (sodium and electrolyes help.)  My doctor then prescribed Celexa which was difficult for me to adjust to (rough side effects) but really has ALMOST completely rid me of the Vasovagal and BP issues.  I truly thought I was dying but honestly feel so much better... Good luck :-)

[sarah0683]

Well, I managed to get a bp/hr reading while having one of these episodes. My supine bp was 93/63 and I had a hr of 48,Standing my bp is 86/52 hr of 84. I have had an odd day today feeling rather drained/nauseated spaced out kinda feeling. My heart rate has been quite low today which is abnormal for me... I am usually racing along when I wake up I was only at 82 this morning prior to taking my Atenolol. Following my medication I have been in the high 40's low 50's. I probably should have skipped my meds today but I am not sure if I should be skipping doses after being on them for a year or not... I found when I had to skip my meds for the 5 days prior to a test/ procedure I was ok for the first 12 hrs off then ended up feeling way worse than before I started taking them. Probably some sort of a rebound effect.

[tkimber]

Hi Sarah,
I do have this happen to me frequently when I'm out to dinner or just having dinner in my own home-talking seems to make it worse. I know that sounds weird, but it's almost like something is being dumped into my stomach and then I start flushing, and I get a strange feeling in my brain and feeling like I'm going to black out.  Sometimes I don't really know what happened in the few seconds of the episode.  A few times I have passed out.  It's humiliating!  I sometimes wonder if it has something to do with oxygen also. Once they took me to the hospital and gave me oxygen and I felt better immediately.  Sometimes it happens when I'm just sitting there not doing much of anything, but it does get worse the more I talk or get too excited and if I eat too much.  I only have autonomic neuropathy, but I do have some problems with blood pressure but only during crisis mode.  I feel your frustration with these episodes.  

[LivingInHope]

I get a sinking/jelly- like feeling often just before I get a hot flash.  I started getting hot flashes I think in my late 20s, but the feelings of jelly like flacid muscles/sinking sensation didn't come until after my hysterectomy.  I don't think you always have to flush with a hot flash.  Might it be you are having a hormonal roller coaster?  Maybe it's catecholamine related, but could it be female hormone related?  I know prior to my hysterectomy, my hormones were out of whack.

  The tightness in your throat and the startling at sounds sound like stress feelings- you say you were sitting with your father (versus standing) and that time with the sounds startling, your pulse was 80s and 90s (not tachycardia at the time).  Maybe you are having subconscious stress since you don't think you were stressed at those times?   I know after I eat a large meal, my POTS gets worse.  I know in the past I've had someone ask me about stressors in my life and I couldn't think of much.  But later, when I started thinking more about it, I realized there were alot of them.

I don't know that you'd want an SSRi.  I had one psychiatrist suggest that with my tachycardia and feeling wired with the rapid heart rate, maybe one of those wouldn't be such a hot idea, because she wouldn't want me bouncing off the walls.  Plus, a lot of them can give you unwanted side effects, such as weight gain.

If you and your doctor decide you should try one, you might ask about trying one of the oldest SSRis, prozac, at a very low dose and see if it helps any.  I imagine one of those SSRis that also has a norepinephrine reuptake inhibitor might not be a good thing, given with POTS, you get those big surges in norepinephrine.

  

[beema36]

U could give them a try. They really can't stop the adrenaline surge but may help your symptoms. I can't take those drugs as they are deadly to me so not an option. My Dr did give me.rx for.klonopin but said he didn't think it was a good solution as this is a long-term thing and u shouldnt take benzos a.long time due to addiction so I have never even took one. Talk to your Dr though as ssris might help u if u can take them.
Beema

[sarah0683]

Would an SSRI help with these symptoms or something used to treat anxiety? Or would you only be treating the symptom and not the actual problem of adrenaline being dumped?  

[beema36]

My electrophysilogist says that my panic attacks are not mentally induced but caused by my body inappropriately dumping massive amts of.adrenaline which causes same symptoms of.panic.attacks. It's a terrible feeling and.apparently there really aren't any meds that help it. He also.says it releases it at its own will.that nothing I do could really stop.them.
Beema

[sarah0683]

I would agree it is very similar to a panic attack but same as you there was nothing at that present time that was causing me any stress.  I will dig around in my storage closet tomorrow for my bp monitor and see if I can't catch one of these episodes this is very much a possibility to be the cause of it! I was also wondering if it could be a sudden release of adrenaline? Or the sympathetic nervous system kicking into overdrive. I will try and remember to bring it up to my family physician and see what he thinks.

[sarah0683]

I am pretty sure that sums it up.... I was thinking more about it today and I am in such a zone or brain fog during it feels like everything and everyone is buzzing around me and I am kind of  "stuck" its a scary feeling thats for sure. It oddly enough happened again after I posted last night. I noticed that after I am wired for sound...any little noise would make me startle. The sound of the thermostat quietly clicking on made me jump. My dogs nails clicking on the hard wood floor sounded amplified and would make me jump even though I was watching her walk towards me... it wasn't like the noise she was making was startling me because it was unexpected. I have took my pulse during and immediately after it happened last night and during the episode and after my heart rate was low 80's and 90's. I have not been able to locate my bp monitor since I have moved recently but I will try and dig it out and take my bp during an "episode".

[beema36]

I.don't know the reason for it but I have this happen quite often. I am thinking its possibly a Sharp drop in bp or heartrate but really not sure. I hope somebody can give us an answer. It's an awful feeling.