I want to thank you for this information. I have looked up and read about
dozens (if not hundreds) of different diseases and conditions looking for a symptom list that closely fits what I have had going on for over a decade. I looked over the website last night (just Googled POTS and hit the first site) and I got goosebumps over the close fit to all of the symptoms. It had to be a 95% fit; when I have never been able to get even over 25% in the past researching other conditions. I do not have these symptoms as severely as some that I read about
but they are very, very similar. I am going to print off this POTS info and take it to my next appointment. Here are the main things I can tick through that I remember being a big coincidence:
Starting around 17 years old (1997) I would experience extreme dizziness and nausea at certain times. The first was while bending over looking into the fridge for something to make for dinner. I felt very dizzy and nauseous and made a b-line for the bathroom thinking I would vomit. I made it about
10 feet (halfway) before I found myself on the ground w/my fiancee standing over me asking if I was ok. My head hurt badly and I was still dizzy. I had a goose-egg on my forehead from hitting a bedroom doorknob when I passed out. I experienced a black hole, tunnel out thing while I was on my way to the bathroom. The last thing I remember thinking is "My God, I'm going blind" before I woke up on the floor. I was out for about
2 minutes at the most (I was told) and I quickly recovered and felt better after than I did before.
These blackouts happened to me several more times over the next few years. I could never tie it to a blood sugar issue (sometimes happening when I had recently eaten and sometimes when I hadn't) and I could never get any blood sugar issues pinned down when I went to a doc. It always came out fine, along w/Thyroid and everything else they could think to check. One time this happened to me right after I moved out to Arizona and I had a couple of new friends over for the first time. They came over and I was sitting on the bed (this was an efficiency and was <400sq feet) so I got up to let them sit down. I stood up and leaned against the counter top. These poor guys (only about
16 at the time) had no idea what to do when I passed out cold about
30 seconds after standing up. I woke up with them saying "dude, should we call 911?" and "is he dead?" I think they were way scared! I started laughing right as I came to and it made them think I was even more crazy! I knew what had happened and they didn't and I couldn't help but laugh at their reactions. When I awoke from these tunnel-out-black-outs I sometimes felt almost giddy. They told me I was out cold for approx. 60 to 90 seconds, tops. I hit my head on the counter top on the way down and woke up with quite a headache, again.
This happened to me a few more times while out in AZ and I got to the point that when I met new people I would just explain first thing that I had a blood sugar issue (or something, who knows, right?) and that I would come to shortly after I passed out and for them to not be too scared. For a time, this issue came to define how I would act with people I just met and people that knew me but hadn't had the pleasure of seeing me have my eyes roll up and my whole body go boneless and hearing me bash my head on something on my way down...
These "spells" continued and have persisted until even recently. I came to recognize the shocky, dizzy, heart pounding, nauseous feelings and became good at sitting down whenever they came on me. I usually have anywhere from 5 to 20 seconds warning before my lights go out and I will just sit down wherever I happen to be. There is just something so terrifying about
knowing you are going to black out within half a minute and there being so little you can do about
it. I have stopped in my tracks and sat down in the middle of stores, the sidewalk, pulled over in my car, at work while on an assembly line, etc. WhereEVER I happen to be, if I sit down quick enough the shocky feeling will eventually pass within a few minutes and I am real shaky (I have tremors to one extent or another all the time but they are WAY worse when these things happen) but I can usually take it easy for a bit and I am relatively ok. When I used to work in a sheet metal factory around huge presses that would shake the ground when they hit the die, I was quite worried about
these blackouts. If I happened to fall into a press with one of these things at the wrong moment, I could have easily been killed or be missing arms today. I held up assembly and stamping lines a few times before my foreman insisted I see a doctor (I used to have to be absolutely dying before I would go to the doctor). They ran all the blood work and could find nothing to explain it. By the time I got into the exam room, I felt more or less ok again and all my vitals would be ok.
As recently as a few months ago I had gotten up to get some water from the kitchen and when I sat back down again, I started to feel the usual shocky, heart pounding (I swear it is hammering my ribcage so hard it would crack), graying/black-spattered vision, etc. This most recent episode was worse than usual and I ended up standing back up and was trying to decide whether or not to have my wife call 911. I ended up sitting back down again very soon because I was scared I would pass out and hurt myself again. I sat for about
5 minutes (longer than usual) and it passed. I brought it up to my doctor (old doc, the one I cannot stand) and he seemed to think it was a side effect of the Fentanyl patch I am on, even with the previously explained history of blackouts, etc. It has been about
7 years since I have actually passed out from this. The only reason I have not passed out is because I have become so quick at sitting down when I feel it coming on. Like I said, I do not have a lot of warning so I have to decide quick (especially in the car or potentially dangerous situations) if it is bad enough to sit down or recline and make sure I don't pass out.
There is much, much more about
other symptoms that match my issues. Just about
half an hour ago, I bent down to look under the couch for a dog toy and I got super-dizzy. All of these issues I have I've always attributed to other things like low blood sugar that they just hadn't been able to "catch" but I am now thinking that all of it, the blackouts, back pain, stomach problems, dizziness, temperature issues (I abhor heat and extreme cold, me and my wife have all-out battle over the temp in the house and car), tremors that get worse with the increased pain, cold and exertion, and on and on and on. I have always viewed the tremors and back pain, blackouts, all of it, multiple problems with various medications, etc. as all being separate things with different causes but I am now thinking it is all due to the same beast. I just thought I was a freaky person who had a lot of issues with a lot of different things. I am not a hypochondriac or anything, I don't look for things to be wrong but there are a LOT of problems I have managed to live my life around. I do not ever even remember to explain them all to the doc because I never think of them as relevant. Maybe all of my problems are my fault because I suck at giving a decent history? Lately it has been hard to get anything coherent across to the doc between all the sobbing like a little girl. My wife is always there to pick up where I cannot continue; there are a lot of subjects that set me off on crying jags that have come up in the past year. I think the Fentanyl makes me super-emotional since I never had these crying/despair issues before I was put on this medicine. Maybe that is all beside the point and a moot issue anyway; not sure.
At any rate, I want to thank you for giving me this avenue to pursue. It looks to be a lot more promising than anything else I have found before. I was in awe as I went through the symptom list for this disease. I didn't quite have time to find out if there was a cure or if it was something that could just be managed. I would assume it is just a manageable condition you have to continue to live with but that certain medications can help with the symptoms.
Again, thank you very much,
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours
Post Edited (skrape) : 8/15/2009 5:01:16 PM (GMT-6)