Syncope?

[jenglynn]

Hi Everyone,

I am a very new member and I am sure this has been brought up numerous times so I apologize in advance for any repetition.

I have hypo-POTS diagnosed about 5-6 months ago with increasing syncope. I am wondering what the frequency of syncope is for others with our condition. Currently, I am on complete bedrest after being released from a week in the hospital where they could not come up with any answers other than do not stand up and if you must leave bed, you must crawl on your hands and knees.

My syncope before I was admitted to the hospital was happening 10-20 times a day at the very least or almost every time I stood up. I did receive 3 pretty serious head injuries and 2 concussions as a result of some falls. I never receive any warning any longer when I faint.

My question for others? Do you faint and if so, how often? Have you ever had a doctor tell you not to stand at all and be on bedrest unless you crawl?

[julieph85]

Hi Jen, I'm really sorry to hear you are having so much problems. I can't imagine fainting that often. I have hyper pots so I don't faint I have the reverse problem. However, for the last month of so I've been getting pre-syncope out of nowhere when i'm sitting down. I get a sudden pressure in my head and chest and then a very woozy feeling with heaviness in my extremities. Have you ever experienced presyncope sensations like that? They scared the crap out of me because both times I was driving. I hope your doctors fine a treatment that will work for you

[jenglynn]

Thanks Julie. I used to get pre-syncope symptoms which included: dizziness, light headedness, and my ears would start ringing loudly and everything would start to sound far away. For the most part, all of my pre-syncope symptoms have gone away and I really don't get much warning. If I do, it is such a short amount of time- less than 20 seconds- and I think by the time I get the "warning" it is too late because I am not thinking clearly enough to even get myself down to the ground. The last time I fell when I split my head open and was admitted into the hospital I had the ear ringing but I couldn't think at all to do anything but hold on to my bed frame. Obviously, holding on to something isn't going to keep me conscious but it was the only thought in my head. I think by that time my oxygen was already deprived in my brain.

It is so frustrating. And the crawling is so not fun

[Alyssa]

Jen, I'm in the same boat as you. I faint anywhere from 1 - 30 times per day, with my highest being somewhere around 60. I am currently looking into getting a helmet (the kind they make for people with epilepsy and special needs), and I think you should look into it as well.

I've had several concussions, bloody noses, broken fingers, black eyes, etc. I also get little to no warning, but I have learned how to feel for the very subtle signs: nausea, feeling hot, trouble focusing my eyes, chattering of my teeth, and a few other things. These signs generally happen just seconds before I faint, and while I also have trouble staying focused enough to sit down, I have learned to lean sideways so that I fall on my hip and then shoulder - this has resulted in many less injuries, though I must add a disclaimer that you CAN still get hurt.

What kind of meds have you tried?

My doctors have told me the exact opposite - try to be up and moving as much as my body will allow so that it doesn't decondition itself. The more you lay around, the more often you will faint. I find that on the days in which every time I stand I faint, that it's better to sit around as opposed to laying around. I have only fainted once or twice while sitting.

ps: I hope you aren't driving! I haven't been allowed to drive for 2 months now.

[jenglynn]

No.. I haven't been driving for about 3 months (such a hard thing to give up, although I never had the energy to go anywhere when I would arrive).

That is interesting that your doctors gave you the exact opposite advice. I was actually standing in the bathroom this evening briefly kind of by accident and before I knew it woke up on the bathroom floor. No injuries thank goodness. I really wish that I could learn to fall safely. I need to read and re-read your advice, Alyssa and see how you manage.

While I was in the hospital the team of doctors (admittedly not very educated with POTS but did consult with some specialists in the week I was there) came up with this option that I could get up and move but only crawling. No standing. I was a little concerned that it might make things worse so I am definitely moving my legs as much as I can. They did fit me with a helmet. The one thing that I have noticed is that my fainting is less (it still happens occasionally when I am crawling) but my tachycardia is still there... Resting will be in the 50s or 60s but after just a short time crawling or scooting will be in the 170s and 180s.

The answer they gave me for the strict bedrest was the 2 severe concussion and a 3rd that was a little bit more mild in just a few weeks time. Maybe it is just a matter of worrying about future head injuries that they are making me stay in bed and crawl. But I worry that it will only worsen my symptoms as my body gets less accustomed to gravity as it already has been! And this was an indefinite amount of time... until they can get me into a specialist.

I take Midodrine, Florinef (which I may have to stop because it causes horrible brain pressure headaches which have been so much worse since the concussions), I was also a Beta Blocker (Propanoal) but they took me off of that in the hospital because my blood pressure is just so low. I take Paxil for serotonin, Adderall for Dopomine and help with concentration and focus, Klonopin for anxiety (which I really dislike and am trying to get off of as soon as I can) and salt tablets. I also take B12, Magnesium, and iron for anemia. I am sure that there are others that I am just not thinking of right now in my brain fog. Sadly, though, none of the medications have decreased the syncope and in fact it has just escalated increasingly since my diagnosis. The very hardest part for me is that my children (I have 6- aged 8-15) have to witness it and how very scary it must be for them. Especially when I get injured. I am desperate for answers but have no real hope of getting any soon. Any advice or support or virtual hugs are so appreciated. At least I have a place to go where people understand. I find that I have a lot of sympathy from my family, friends and church but not a lot of understanding because no one really understands what is happening to my body. I feel like I explain myself over and over again 100 times and it doesn't sink in. Ahh... such is life. I am grateful that my last concussion, while severe, did not do the damage it could have done and that for now at least I am safe. Thank you for listening. It means so much to me.

[potsgirl]

IMHO, I really think you need to get into a specialist, and soon! I've never heard advice like that, but of course I'm not a doctor, but it seems wrong to me. How low does your BP go when you stand up? Obviously you have orthostatic intolerance/hypotension, and I would think your docs would be working with you to get your BP up, the sooner the better. The Forum has a list of specialists you can find on the Home Page. I'm a fainter and also have seizures, but I have them on average about 4-5 days a week. I can't imagine how horrible it must be to have a total loss of control so often!

Wishing you the best, and that the medical community can help you out quickly. Please let us know what you find out...and do you have a diagnosis yet?

((((hugs))))

Jana

[jenglynn]

I am trying to find a specialist and working with my health plan (my employer ironically enough). I was denied to be seen at Mayo. The approved me to see a Dr. Timothy Kamp at UW-Madison, a teaching hospital. I am not very optimistic because my team in the hospital consulted with him and he didn't have any other ideas. We have also been looking for someone in Milwaukee but so far haven't found anyone my insurance company would approve.

The lowest that my blood pressure gets to (as far as I know) is 35/20 and this is while I was in the hospital. Or something close to that. Very often it is so low in the clinics or hospital they can't even get a reading. And it takes almost NO time for my numbers to change that quickly. The syncope comes with so little warning.

I did get a diagnosis in July 2011 of P.O.T.S but after reading more here it seems like there are many different kinds. All I know is that I have P.O.T.S and that my heart itself seems perfectly healthy. There is still a lot to learn for me and I am doing so a LOT.. until I just can't think about it anymore. They diagnosed me after a tilt table test.

I am desperate for a specialist and just hope I can find someone, somewhere who can help or at least push me in the right direction. I was desperate enough to apply as a research candidate at Vanderbilt and heard back quickly but they rejected me because my condition is too unstable. I am lucky to have a family practice doctor who has had to learn about POTS the hard way through me and she is really working overtime with my insurance to find someone, a specialist, to help. Mayo was her first choice and that was denied and then my appeal was denied as well. Frustrating.

Very happy to have found this forum. There is so much knowledge and you all are light years ahead of me in your research so I am grateful to be able to learn from all of you!!

[flop]

Hi Jen,

It sounds like you are having a really tough time at the moment. When I first developed severe problems with my POTS back in 2004/5 I was also fainting a lot, up to 10 times per day.

Whilst I can understand that your doctors are frightened that you will hurt yourself and have advised bed-rest to prevent injury I believe that bed rest will lead to deconditioning and ultimately make your symptoms worse. When I was first diagnosed my cardiologist told me that I was never to lie in bed all day and that no matter how ill I felt (even with flu) I was to sit in a chair with my legs down. He said this would force my body to try to counteract the force of gravity. He also said when I needed to concentrate to do something I cold curl my legs up in the chair or elevate them but after doing the task I should put them back down again.

Some of the initial measures to raise blood pressure include lots of water, lots of salt, compression stockings and abdominal compression. Many doctors also advocate raising the head of the bed on 2 bricks to encourage expansion of blood volume.

I hope you get to see a specialist who can help you soon,

Flop

[jenglynn]

I guess I should clarify a bit. The doctors did state "bedrest" and said that they didn't want me standing at all... but I am allowed to sit up. I can sit in a wheelchair or in a regular chair. Just no standing or walking. My tachy does get a bit worse with the sitting but I don't think it really affects my blood pressure because I haven't had any syncope while sitting that I can recall. The only thing is to get from bed to a chair, I have to crawl or scoot to get there. They did advise that I do need to exercise my legs as much as I can and they hope the crawling will help with that. Although, my tachy gets pretty high from the crawling along with the dizziness.

This evening I had my first syncope event since being home from the hospital. I was sitting on a chair I have in my bathroom and I had to stand ever so briefly to get myself something on a shelf. I would say I was standing less than 25 seconds. Next thing I know I was on the floor, no warning whatsoever. No injury luckily and my husband heard me fall and came in and saw me immediately and got me back to bed. Such a frustrating life we lead, isn't it?

So I guess I was a bit misleading to use the term "bedrest" although that was what my discharge orders said. They did encourage sitting with my legs hanging. Just no standing at all. I do use compression stockings since I got home, and have been following the high salt, lots of liquids, and elevated sleeping position for a while. It seems like I have tried a lot of meds but there are many I haven't tried.

Even the sitting is exhausting for me but I make myself do it several times a day because I do know it is important. I apologize for the misunderstanding and my poor explanation.

Thanks,

Jen

[Brye]

I did have a doctor recommend crawling as well from my bed to the bathroom especially at night. Door was to narrow for a WC. Fall risk was too high. The good news ... my meds have helped and I don't have to crawl anymore. yeah!!

Brye

[micheller]

Have you tried to see anyone at Froedtert in Milwaukee? I see a GI specialist there and he's the one that diagnosed me. Went to get a consult for GERD and get this instead. It was a shock for sure. But he referred me a great neurologist there also. I'm guessing the doctors there know more about pots and autonomic dysfunction. I can give you the name of my neurologist if you like. I see him right before Christmas.

[Alyssa]

Jen, do you have another doctor appointment coming up? I second that you need to find a specialist asap.

I would really suggest talking with them about it, and also seeing if you maybe up your meds or try something else. There needs to be some sort of long term plan.

I don't doubt that you fainted so quickly upon standing if you haven't been doing any standing/walking for awhile. Even just a few days of not standing/walking can cause you to have problems standing. The less you stand, the less your body will tolerate it.

I know it's hard, I'm in the same situation with fainting all the time, but yet I still have to find ways to get up and get moving.

Maybe you could ask about having standing "sessions" with the help of another person?

[jenglynn]

Thank you everyone for the great advice. It does make sense to me that my body is becoming even less used to gravity and the problems will intensify the longer I am avoiding it.

I do have an appointment with my electrophysiologist on Monday (he actually works in Milwaukee and comes to my clinic once every 3 weeks and he works with a partner who specializes in POTS and he called me yesterday and told me that they have consulted a lot about me so we have a lot to talk about on Monday). I hope this is the beginning. I will definitely look into the Drs you mentioned in Milwaukee and the name of your neurologist would be great, Michelle.

I am also going to ask about getting some walking time every day with assistance. That makes a lot of sense.

I think the doctors at the hospital were just so focused on the head injuries and the concussions that maybe they weren't considering the long term effects of my POTS condition. All they kept saying is that above all else they had to keep me safe. And they were afraid I wouldn't survive another head trauma because of the severity of my last one (which left me unconcscious for almost an hour). But I will not get any better this way either.

You have all helped a lot!!! Thank you for your input.

Alyssa, I know you mentioned you have lots of syncope throughout the day. Are you ever alone? Have you just learned somehow to fall in the "right" way and you just avoid any major injury? After syncope, how do you handle the rest of your day? Do you lie down for a while and then get back up when you are able? It just seems like it is so unpredictable and so difficult to manage these episodes for me.. but I haven't been dealing with it as long as many of you. I was diagnosed in July and had maybe weekly syncope... it hasn't been until the last 2 months that it became daily and then multiple times a day.