Vasovagal Syncope, Or Something Different?

[gtg287y]

I was recently diagnosed with Vasovagal Syncope, but I'm not sure I agree with it. I have two distinct sets of prodrome symptoms (chest pain, difficulty breathing, dizziness, nausea, feeling cold, headache) and (fatigue, confusion, dehydration, restless sleeping). Both lead to collapse if I'm not careful. The first happens when I'm sitting, and worsens when I'm standing, wheras the second happens when I'm laying down, or otherwise near sleep (usually during the day). Both seem to be worsened by heat, stress, dehydration (but I only feel badly dehydrated with the fatigue one) and certain foods. I also have a high heart rate (sometimes over 130) when standing, but this strangely doesn't seem to relate to any symptoms I might be feeling (except that when I stand up and my heart rate IS normal, I actually am more likely to get dizzy, etc.)

When I do collapse, I lose consciousness for only a second or two, usually being awake as soon as my head hits the ground. There are a few times I might not even lose consciousness at all. Either way, I always remember starting to fall, and then being on the ground. It's the time in between that is often fuzzy.

Details of my symptoms are as follows:

A little over four years ago, (age 19), I was preparing some food, and accidentally spilled a large quantity of steak seasoning onto the food. I ate a few bites anyways, because I had nothing else to eat. Within the hour, I started having major problems. I kept graying out, I couldn't breathe (my boyfriend, who was with me at the time mentioned that a few times it seemed like I stopped breathing entirely), I felt flushed, and had severe chest pain. I WAS, however, coherent enough the entire time to prevent 911 from being called. That is, I have no memory of overtly losing consciousness.

Afterwards, with a quick google search, I concluded that it was probably the MSG in the seasoning I had used, seeing that breathing and chest problems occur in some people after eating it (though I noticed that there was some controversy about this). However, immediately after this episode, I found myself EXTREMELY sensitive to heat, especially in the bath or shower, feeling dizzy, generally 'out of it' and even collapsing a few times after getting out of the bath. I slowly learned to minimize my symptoms near heat, usually by preventing myself from overheating, and staying hydrated.

This was in the fall. In March, I collapsed for the first time outside, while walking from a class. It had been a hotter day than normal, and I was wearing a thick jacket, anyways. I remember being confused, disoriented, and feeling dizzy before I finally collapsed on the pavement. I only blacked out for a second or two, and was fine (if dizzy, confused and unable to get up) for a little bit.

From then on, my collapsing spells seemed to come at random. I couldn't find a correlation between food, or stress, (at least at first). For the next year or so they tended to cluster around fall and spring, and my conclusion was that both times of the year I felt hotter than usual (in the fall, the heat starts running in most buildings I'm in, yet I still have to dress warm enough to walk outside, and in the spring, I'm still used to wearing warm clothing, and yet it's heating up outside). I tended to feel breathless, with chest pain, headaches, and severe fatigue (I would often sleep for hours after an episode, very fitfully, often times partially waking up and sleep talking or walking). I also noticed that the months where I was more likely to collapse had my resting pulse higher than normal (it was usually in the 70-80 range, but in spring and fall I would notice it was in the 90s, while sitting at one of those pharmacy blood pressure machines).

When I went home for the summer, my parents had me go to a general practitioner, who diagnosed me with migraines, because of the severe headache I often felt following a collapsing episode (though at this point I believe it's MOSTLY from my head hitting various hard objects, rather than being an important symptom (although sometimes I legitimately start off with a headache)). My parents didn't agree with the diagnosis, so I was taken to a heart doctor (who put me on an even monitor for a month (no results, but then I never felt like I was going to collapse). When that showed nothing, I was taken to a brain doctor, who also found nothing after a week of monitoring.

Since I wasn't collapsing any more, and I had no symptoms, it was dropped there. Late that summer, I started collapsing again, while working in a very hot kitchen, eating salty food every day (from the kitchen) and drinking very little water. I concluded that salt in general, not just MSG might be a problem for me, and started limiting it in my diet and drinking a lot of water (I also went to an ear doctor at that point to see if it was Menieres' syndrome (it wasn't).

I decided to accept the original diagnosis of migranes as I learned a bit more about them (they aren't just bad headaches, for one), and lived my life up with this assumption until this year. I'm now graduated from college, and working a full time job, since December. In March, I collapsed at work, despite every precaution (and since then have collapsed over six times, and had symptoms even more frequently (44 times), even over the summer). A nurse on scene at work mentioned that my pulse felt VERY fast, so I went to a doctor immediately after collapsing to see if she was right. A quick EKG said that my heart was fine. I went to a heart doctor, wore a monitor, (this time for only two weeks (and again, barely any symptoms), with no results. However, this time something was different. The second time I collapsed at work I went straight to the doctor again (he was just down the road), and collapsed a SECOND time right in his office. (Generally if I force myself to get up before I'm ready, I will collapse again). They managed to get a record of my pulse both before the collapse, and just after. Before it was at 110, and after it was at 137.

This convinced my doctor that I had heart problems, and scheduled an appointment with a doctor to see if an ElectroPhysical study would benefit me.

Meanwhile, I'm a bit freaked out about the heart rate, and buy one of those athletic real time monitors to see what my hearts been doing myself. I find that my heart rate usually goes over 120 when I first stand up, stabalizes to around 108 while walking, and is in more 'normal' ranges of 70-90 when sitting, and can get as low as the 50's while laying down. Some days I found it get over 130 or 140, just by standing still long enough, or raising my hands.

But the weird part is, I NEVER felt any symptoms at all when the heart moniter said my pulse was so high. Rather, I found it the opposite. If I stood up, and my heart rate didn't get over 95, I felt like my heart was pounding, I felt dizzy, and grayed out a bit. That is, if my heart didn't do what was 'normal' for it, then I felt the symptoms.

When I went to the heart doctor, he listened to about half of my symptoms, then said it was Vasovagal Syncope. I didn't feel like he really took the whole picture in. He asked if I was normally standing up when I collapsed. I said ?yes?. But I didn't get a chance to mention that the symptoms usually START while I'm sitting or even laying, that the worst symptoms happen while I'm laying down and then suddenly fall asleep and start sleep talking and stuff, that I'm most likely to collapse if I get up from that. I didn't get to mention all the times I've collapsed, tried to crawl somewhere safer, and collapsed a second time with my head as far down as I can get it. When I mentioned the high heart rate he said that it was irrelevant, and just a sign that there were things wrong with my system, and that the REAL reason I collapsed was that my heart rate was getting 'far lower' than the 50 I'd seen as my low.

He told me to increase salt, drink sports drinks, and do leg things, and dismissed me. I tried to protest that I'd found that salty foods make things worse, and he said that MAYBE I was allergic to MSG, but there was no way salt would make things worse.

I didn't really think he was right (I mean, I know salt gives me a headache, and can start a lot of my symptoms, if I'm not careful)... BUT, I did listen to him. I've been doing the excersizes, I've been drinking powerade...

And nothing is getting better, even after several months. The only reason I haven't collapsed at work a third time is that I'm more careful about not getting up if I feel the symptoms. But I'm feeling the prodrome type stuff just as bad,, and collapsing as much at home as I usually do.

I just don't know... Should I keep doing what he said and hope that it works eventually? Is there anything else I can do? Any other thing I should get checked out?

I'm most worried about the fatigue... I can feel fine, energetic even, and then suddenly be on the verge of collapse because I'm so tired. And BECAUSE of how tired I feel, I can't think straight enough to remind myself to get water, or to avoid walking and stuff. If I do manage to find a place to lay down, I'll sleep for hours and hours, only to feel worse when I wake up... dehydrated, and muzzy.

And THOSE symptoms are completely different from the more standard 'vasovagal' ones my doctor paid attention to. If I collapse without fatigue, then it's chest pain, greying out, difficulty breathing, etc. Maybe some dizziness and nausea thrown in... Stuff that the internet says is pretty standard for vasovagal syncope.

Does anyone else here have vasovagal syncope, or know if my fatigue set of symptoms really match? Should I keep pursing this until *I* am satisfied? Or is it possible it really just is vasovagal syncope? I mean, my heart has checked out fine so far, my brain seems to be fine... The general doctor seemed worried that I had a tachardia, that my heart was fine most of the time, but would sometimes go out of wack. He said an EKG wouldn't show anything wrong, if that were the case. Should I be worried about this?

[potsgirl]

Hi~

And welcome to the Forum. It's good to have you. I usually refuse to even have an EKG done because they can only tell you something if you're having a problem right that instant, and that's usually not the case. Do they do an echocardiogram on you to see how your heart pumps and what your ejection fraction is? Has the cardio or neuro done a tilt table test yet? You need a tilt table test to determine if you have POTS/OI. That's an important test to take. Has anyone mentioned chronic fatigue syndrome (CFS) to you? Sometimes dysautonomia and CFS go hand in hand.

The home page on this site has a lot of info about the different types of of dysautonomia, and someone recently posted this site as a good one to read up on it. It's worth your time to read, I think.

www.supportdysautonomia.org/pots.html

If you haven't already, read up on this site and the one listed above, and see if they answer any questions. We all do a lot of reading and research here, as well as help each other out with what we've learned along the way. Welcome!

Jana

[gtg287y]

Thank you

They've done a stress echocardiogram on me, and said that things looked fine (and I believe them). If anything, they said that I was very good at getting my heart rate to raise quickly, which a lot of patients have problems doing, apparently. (I kind of thought it was ironic, though, because I was having the test BECAUSE my heart rate goes up too quickly).

Nobody's done a TTT. I mentioned it to one of my cardiologists, and they said it would be a good idea, and that they'd try it after my heart moniter was finished. When it was finished, they dismissed me without even trying it, though. I felt pretty annoyed. My latest cardiologist, the one that says it's vasovagal syncope, said that he doesn't believe in TTT, because of how many false positives and negatives they get (he claimed that over half of all people who undergo a TTT faint, even if they have no history of fainting).

No one has mentioned CFS, it's good to hear about it. A quick wiki on it seems like there's no real way to diagnosis it other than by elimination, though. Is this true? If so, I think it might be more trouble than it's worth to try to convince my doctors to check it out. There doesn't seem to be a clear cut treatment method, for it, as well. If I DO have it, would I just sort of be back at square one, trying to figure out how to live my life?

The website you provided is not one I've seen before, and it seems VERY informative (thank you!). It interests me that it mentions that POTS involves the increased heart rate, without any additional heart symptoms.

Thank you for taking the time to get back to me... I've been pretty worried about all of this, and it helps to be able to sit down and put my thoughts in order, and know that someone will *listen* rather than frustrate me like my doctors have been...

[potsgirl]

Jenny,

Another suggestion would be to see a specialist in dysautonomia. Many of us have done this, to get more accurate and detailed information about exactly what's going on with our bodies, and the best ways to treat the particular symptoms we have. Have you seen a specialist in this area yet? I don't know what part of the country you're in, but there's a listing of great doctors also on this site. I ended up at the Mayo Clinic in Rochester, MN, when the doctors in Tucson weren't sure what to do with me. I have both heart problems and POTS/OI (my BP can get very low - I eat a lot of salt, drink a lot of water, and NUUN - similar to Gatorade without the sugar and carbs). I mentioned CFS because sometimes the doctors will tweak your meds to help with this...Are you taking any meds for your symptoms now?

Cheers,

Jana

[gtg287y]

I would see a specialist if I could find one ;; I'm near the Atlanta area, and haven't really found one, yet. *ponder* Although i haven't even looked on my insurance website to see if I can search for doctors who specialize in that. I'm going to try that. Thanks for the idea!

No meds right now. My heart doctor just said excersize and drink powerade, and if I still had symptoms, to come back. Well, I do still have symptoms, but I really didn't feel all that confident about his bedside manner, so to speak... so I want to have something concrete in mind before I try that. I hate feeling like I'm wasting people's time, especially when it seems that they think I'm doing so, too.

-Jenny

Edit: A quick search and no, my insurance provider doesn't let me look for dysautonomia. Is there a particular branch of medicine it might fall under? Neurology, cardiology? Pathology?

[Maxine]

WELCOME Jenny!

Has your doctor mentioned NCS (neurocardiogenic syncope)? If you heart rate doesn't go into tachycardia to compensite for the standing position when you BP gets low you can feel really bad and pass out. Not all POTS patients passout, and having the higher heart rates help compensate for the low BP preventing this.

I don't know if I'm making any sense right now because I'm having a bad day with really low BPs, and my thinking isn't really clear right now. I just decided to take it while typing this because I feel so wiped out. It was 98/68 sitting----------reart rate 68bpm. Standing my BP went down to 88/68-----heart rate of 81, then fell to 83/58-----heart rate also fell to 73bpm. I continued to take it one more time and BP went back up to 88/70------pulse went back up to 81. My PCP has mentioned NCS since my heart rate doesn't seem to compensate like it used to. I might have both POTS and NCS.

A TT test should be done in conjunction with others tests, as they can measure you Blood Pressure and heart rate throughout the test. The test can stress a normal body, but the doctor can also see the BP and HR readings to make a judgement on weather this is a false positive. The TT is only part of the testing for autonomic nervous system dysfunction.

Here's a list from one of the links from this website on how POTS is detected;

http://www.dinet.org/how_is_pots_detected.htm

Hang in there, and I hope you get the correct diagnosis soon, so you can get the appropriate treatment.

Take Care,

Maxine :0)

[peppermint patty]

Hi Jenny!

This is my first post. I am recently new to the group.

When I read your post, I thought of my own symptoms and story. This past March I was standing inside a classroom ( I am a teacher) and my head began to feel very strange. I forgot to mention the week leading up to this I had severe headaches everyday. I thought I should get something to drink at my desk and then I sat down. That was the last thing I remembered until I woke up in an ambulance. They said I had a seizure, but whean the hospital ran all their tests everything showed up fine. Since I have no previous history (and I am 49) of passing out --- home I went.

My family dr. sent me to a neurologist who did an EEG. A couple of days after the EEG, while I was sitting on the sofa, my head began to feel very strange again. I needed to lay down, but then my I felt nausea and was in a cold sweat. I thought I was having a heart attack. I went to the hospital and again they ran tests. I was at that time mis-diagnosed with epilepsy and prescribed a high dosage of Keppra (an anti-seizure medicine). The symptoms continued and became worse. I couldn't stand and was constantly fatigued. I went to hospital after hospital looking for help. I went to one hospital and they said I did not have epilepsy, I was having panic attacks (even though I did not feel panicked). My family dr. knowing me for many years did not agree with that diagnosis. He kept testing me and then sent me to several doctors.

Finally when I went to the cardiologist and I described all my syptoms, she said I had just took a page out of a medical textbook under the diagnosis for NCS---neurocardiagenic syncope (except you usually do not get it at my age). This was just a month ago. She put me on a beta blocker 400 mg. a day. She told me to keep hydrated and drink lots of gatorade. Also I must increase my salt intake. Things have definitely improved for me. I am now able to function most of the time. There are days like today when I get the wierd head feeling and need to lay down. At times I feel very disoriented and extremely fatigued. My heart checks out fine. Headaches have almost entirely disappeared (due to the beta blockers I am told). The point to all of this is that I think you should keep searching until you feel secure with your diagnosis. Also MSG makes me very ill---severe headaches and nausea.

Let me know how it is going ---- Pat

[Maxine]

Yes, MSG can definately aggravate our symptoms. MSG is a flavor enhancer, and in my personal opinion it should not be added to any food product.

MSG makes me very sick, and I feel so shaky with tachycardia, tremors, bloat, ect. I honestly want to climb out of my own skin if I eat anything with MSG. I always make sure foods don't have msg before I buy them, and ask at restaurants when I go.

Maxine :0)

[skyblu]

Yes, MSG can definately aggravate our symptoms. MSG is a flavor enhancer, and in my personal opinion it should not be added to any food product.

MSG makes me very sick, and I feel so shaky with tachycardia, tremors, bloat, ect. I honestly want to climb out of my own skin if I eat anything with MSG. I always make sure foods don't have msg before I buy them, and ask at restaurants when I go.

Maxine :0)

I agree Maxine. MSG should always be avoided. As should processed meats.

[gertie]

I have vasovagal syncope but my symptoms are not exactly like yours. My syncope is usually brought on by pain in abdomen area, odors of food, perfume, chemicals. My neuro told me that some people have a vasovagal response to things like having their blood taken. I do get sweaty, nauseous, dizzy, BP & heartrate drops. I have been to cardiologist several times & by the time I get there he always says my heart is fine. Be sure your salt has no additives. I use Real Salt sea salt. I find I do better to "try" to stay from chemicals as much as possible. I think you should get a second opinion. I have not found a dysautonomia specialist in Ga or Tn & I've been looking for awhile. Good luck!

[pat57]

peppermint patty and jenny,

My story is very similar, I have NCS and OH. As far as false positives on the TTT I'm not buying that because a person can have convulsions its not ,necessarily, just "a simple faint". Also I've had 4TTTs. They recheck after trying new meds. Passed out during all 4. I don't think 4 false positives are likely.

And jenny I had to laugh, I would say I collapsed but was not out too. That was my experience. Onlookers might tell you different. Like the Dr. doing the TTT. I also seize when I faint- who knew!

[ramakentesh]

Vasovagal events are characterised by a prodome of palpitations and adrenal type symptoms followed by a sudden slowing of heart rate and lowering of blood pressure resulting in cerebral hypoperfusion and loss of consciousness.

The fainting in POTS is quite different - there is no such change in POTS - blood pressure usually remains stable and can even increase before fainting. the fainting in POTS can be caused by a variety of mechanisms but all result in cerebral hypoperfusion or cerebral hypoxia.

[pat57]

Jenny,

I just saw my Dr. and he did say they don't use the TTT anymore,for NCS. Also that treatment has improved over the last 10 years.

[flop]

TTT probably isn't that helpful in diagnosing neurocardiogenic syncope / vasovagal syncope because of the false positives. However TTT is the gold standard test for diagnosing POTS.

Ideally you need to see a doctor who understands POTS / autonomic problems and who knows what to look for on a TTT. Try looking on the dinet physician list (on the main DINET website) for a doctor near you. It is often worth travelling to see a good doctor and get a proper diagnosis, you might then be able to follow up with a more local doctor or PCP.

Flop

[juliegee]

Hi Jenny,

Lots of great advice, wisdoms, and recommendations here. My son sees Dr. Peter Rowe at Johns Hopkins. He says that vasovagal syndrome (VVS), neurocardiogenic sycope (NCS) and neurally mediated hypotension NMH) are all different names for the same phenomenon and you are exhibiting many symptoms of it. I hate to go against what others are saying, but the TTT is most definately the diagnostic tool of choice. That's what they use at Johns Hopkins. My son felt awful during his whole TTT, but it wasn't until 35 minutes that he passed out. If your HR raises above 28-30 bpm in the first 10mins, you have POTS. If your BP drops (dramatically) any time in the first 45 mins, you have VVS, NCS, NMH- whatever you want to call it. Rama gave a great explanation of the phenomenon. BTW, my son's HR raised to 130-140 mins, but it wasn't in the first 10 mins- sounds similar to what's going on with you.

NMH has been closely linked to chronic fatigue syndrome (CFS), You also have many symptoms of that. The MSG allergy could be linked to your dysutonomia. Patients with allergies are more likely to have CFS. It is very important to get them under control/avoid triggers to quell your autonomic stuff. It would be wonderful of you could see a good ANS doc for a diagnostic TTT and who could also get you started on a med regimen.

I have Dr. Rowe's current findings on VVS/NCS/NMH and POTS. He has lots of helpful info for you & your treating doc. If a moderator could help me get it on the DINET links page, I'd be happy to share it with you.

All the best-

Julie

[dsdmom]

Welcome!

It sounds like you would benefit from seeing a dysautonomia specialist. Do a search on her for "Atlanta" - I feel like I saw somEthing recently about docs in that area.

Please remember that even if what you have is *just* syncope, you deserve to be feeling better with treatment. You don't need to jus suffer and hope this ither doctor's suggestions work. Therapy is very individualized for these types of things and you need to find what works for you best!

[flop]

Hi Jenny,

sorry if my first post was confusing about the helpfulness of a tilt table test. I think that in your case you definately need one to see what is happening to your BP and HR when you stand, and to see if you can match your symptoms to any changes in BP or HR during the tilt.

What I meant is that the TTT is being used less often by physicians in cases of "barndoor simple vasovagal syncope" (yes VVS / NCS and NMH are all used interchangably). If you went to a cardio and said "a couple of times a year when I am standing in hot crowded places I feel hot, sweaty, nauseous, dizzy, my vision and hearing fade and then I wake up on the floor" and you also said "inbetween times I feel fine and can do my normal work / school and sports". THEN the doctor would say that you had VVS but didn't need a TTT.

The difference for most people posting on here is that we often feel unwell when standing up, or even all the time, or have phases where we frequently feel unwell. That suggests that there is something more complicated than just occasional VVS going on and that testing with TTT is needed.

Hope that makes sense!

Flop

[ramakentesh]

My son sees Dr. Peter Rowe at Johns Hopkins. He says that vasovagal syndrome (VVS), neurocardiogenic sycope (NCS) and neurally mediated hypotension NMH) are all different names for the same phenomenon and you are exhibiting many symptoms of it

The difference between NCS/VVS and NMH is that the former is characterised by generally normal resting nerve activity but an overall decrease in nerve tone on quiet standing, an increase in norepinephrine reuptake in the heart and a sudden loss of nerve tone and blood pressure and syncope.

On the other hand NMH patients often have resting low MNSA activity and blood pressure.

Could all be manifestations of the same thing though.