jenglynn

I am relieved to hear that she is improving but what a scary thing for your whole family to go through. Lots of hugs and prayers sent your way. Nothing is worse than watching our children suffer!

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!!

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.

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

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?

Hi Everyone,

My name is Jen and I am 37 years old. I was officially diagnosed with P.O.T.S about 5 months ago but am no where near feeling better. I guess in many ways I am lucky, especially after reading so many of your posts where the diagnostic phase has lasted a long time. I started having symptoms in April of 2011 and was diagnosed offically in July. Looking back over my life, I think I have always had some symptoms but not to this severity. I have always been prone to fainting and lower blood pressure. I also have always had a lot of discoloring of my extremeties. It never, ever got to the point where I am now.

I am not sure what "kind" of P.O.T.S I have but I know it is hypo because my blood pressure goes way down when I stand and pulse goes way up. My symptoms in April started gradually with one episode of syncope and feelings of fatigue. I had two more episodes of syncope and my doctor ordered a holter monitor to check my heart. Everything seemed fine at the time because all of my vitals and EKGs were always done while I was sitting. Suddenly, in June, one day I was short of breath. It was the strangest feeling I have ever had. Just out of the blue, I couldn't catch my breath. I couldn't talk without losing my breath, could not walk. It was very scary. I felt like I was gasping for air even just sitting upright but especially if I was walking or doing anything physical. I couldn't walk up stairs all of a sudden. I felt like my body was falling apart. I could not regulate my temperature. I had horrible anxiety which I had never had before. By the way, this was diagnosis number one. Shortness of breath was anxiety. Ummm... no... I can distinctly tell you that the shortness of breath came first and yes I am anxious when I feel like I can't breathe. Then it was asthma. No asthma either it turns out.

I got the results of my heart monitor I wore for the month and it showed quite a few episodes of sinus tachycardia. I did not experience any syncope during this time but a few of the episodes I had dizziness and lightheadedness... near fainting. They did a stress test.. where I collapsed on the treadmill after not very long. HR very high.. BP very low but they never gave me the numbers but I was in there for quite some time before I could go. Next step was TTT (ugh, miserable) and that is when they diagnosed me with P.O.T.S.

From there we started the medication merry-go-round. This is mid-August of this year. Beta blocker (Propanol), Midodrine, Florinef, anti- anxiety (Klonipin) and Paxil. We have mixed this up for a better combo or removing some, adding others but nothing has worked. My symptoms have gone from bad to worse. I use compression stockings, drink lots of fluid, water and gatorade, salt my food but a huge problem I have is a complete lack of appetite. I am subsisting mainly on protein shakes at best and can't eat or keep much food down. Since July, I've lost 30 pounds.

In November my symptoms got really bad. I had been having 4-5 syncope episodes per week from Sept. to Oct. and toward the end of Sept. I was unable to work anymore. Fatigue was overwhelming. My pulse was always racing. I felt like I was under a constant anxiety attack. I think I was having adrenal surges because I just always felt like I was jumping out of my skin. I was still able to walk around and do the bare minimum housework but could not really cook anymore. Grocery shopping or any shopping was a nightmare but I tried my best. In the beginning of Nov. syncope was a daily event. Not unusual to have 10-15 a day, which felt like every time I stood up. About 3 weeks ago, I got up one morning and fainted and hit my head on the edge of a metal desk and cut my head open pretty badly. Required 20 staples to close it up and also got a concussion. I was observed, given IVs and told that they can't cure POTS in the ER (which I know) and then sent home. I was more careful after that but about a week later I fainted in the bathtub and smashed my face on the floor of the bathtub, causing significant bruising but no real injuries. At this point, I am having syncope almost every time I am up so I pretty much don't get up unless someone is with me. Until last Wed. I was feeling pretty good so got up in the morning just to make my bed. Next thing I know I am waking up on my bathroom floor covered in blood after splitting my head open. This time I go to the ER again, they give me fluids and do the BP sitting/standing test (after head injury stablized) and sitting my pulse is 67 and BP 100/70. They have me stand for 30 seconds with someone on both sides of me and they told me that my pulse got up to 190 and my BP went to 40/22 but I passed out. They got me back in bed and I started to wake up with my awful headache and feeling pretty discouraged. When will this end? ER doctor said that I couldn't go home because it was too much of a safety risk so they admitted me into the Cardiac Care Unit. I had a team of 3 cardiologists, 1 endocrinologist, and 1 neurologist. Most of the doctors had never even heard of POTS and the ones that had had never treated anyone with it. So they kept me on bedrest except to use the restroom. Same thing would happen. I would be lucky to get back in bed conscious. They checked my standing BP and pulse the next morning and it went from 73 HR and 90/70 BP to 179 HR and 38/20 BP in 30 seconds which of course caused syncope. Got me back into bed and I stabilized but was exhausted. They decided no more orthostatic testing. They had enough evidence. I was there 5 days and the only thing they discovered was that my thyroid in the last year had gone from .68 last Jan to .43 in July to .16 last week indicating hyperthyroid. But when they checked my T3 and T4 numbers it indicated a HYPOthyroid so that made no sense to anyone at all. While I was in bed I stayed stable. They consulted with specialists who said they wouldn't do things any differently and didn't know what else to try with me. Initially the plan was to keep me for weeks to keep me safe but after making sure my resting vitals were stable continuously they decided to release me home with bedrest. If I have to get up, I have to crawl on my hands and knees. Absolutely NO standing under any circumstances.

So now what?????? I am a mother of 6. I am a full time Master's student (online thankfully). I have (had) a busy, productive life and now I feel like a burden on my entire family. Being released from that hospital with no answers other than to tell me that I can't walk was beyond what I could even comprehend. How do I live like this? Even crawling around, I am still having the severe tachycardia (this morning it got from 56 to over 190 in under a minute) but I guess that could be expected from the exertion from crawling maybe? (which is actually really hard work). I just feel lost. I am recovering from multiple concussions and my POTS symptoms have spiraled to the point where I am completely debilitated. What do I do now????? ANY ideas? The hospital made an appt with a specialist for me at UW-Madison (I live in Wisconsin) but I have no real hope with him. He is one of the ones they consulted with who advised he didn't know what else to do to help me. I know this was a very long post and I am very appreciative to anyone who took the time to read (or even skim) the whole thing. I am just frustrated. I just want to be able to take care of my family again and not the other way around. I want answers. I can't continue my life crawling around on all fours on the rare occasions I can actually get out of bed and the multiple syncopes cannot keep happening as I am lucky to have survived the last one. Any help, advice, support would be much appreciated. I am feeling lost and alone and very afraid that this may never get any better. But I am also grateful beyond words to find this forum to talk to others who may be able to relate.

Jennifer