Nauthiz Posted April 27, 2009 Report Share Posted April 27, 2009 Im about to get my first TTT scheduled, and my cardiologist says hes suspect i may not have pots since i don't faint or get syncope. But i have so many other corresponding symptoms such as heart rate increase on standing and blood pressure. Here is my tell tale symptoms.Chest pain,Head aches,Gastro upset,Pelvic pain syndrome(only sometimes)Trachy random times(not that often)Brain Fog,Confusion,Increase heart rate/BP on standingbut i don't faint or black out ever. Once in awhile ill get a black haze when standing up but it quickly wares off. Quote Link to comment Share on other sites More sharing options...
Katja Posted April 27, 2009 Report Share Posted April 27, 2009 I don't faint. I actually seem to remember reading, in some journal, that most patients with POTS don't have syncope. Orthostatic symptoms, plus a significant increase in heart rate, is enough for a diagnosis, generally. Quote Link to comment Share on other sites More sharing options...
Nauthiz Posted April 27, 2009 Author Report Share Posted April 27, 2009 I don't faint. I actually seem to remember reading, in some journal, that most patients with POTS don't have syncope. Orthostatic symptoms, plus a significant increase in heart rate, is enough for a diagnosis, generally.Yeah i read this too... im not sure why my dr is so skeptical just because i don't have fainting problems. I said i had these chronic pains for awhile now and he said that POTS patients usually don't have chronic pain???? Quote Link to comment Share on other sites More sharing options...
all4family Posted April 27, 2009 Report Share Posted April 27, 2009 I do faint, but I also know that you don't have to faint to have POTS. It is syncope, or near syncope. If you "feel" faint when standing, then that is a symptom. Suzy Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted April 27, 2009 Report Share Posted April 27, 2009 For POTS diagnosis the requirement is a HR of at least 120 bpm and and an increase of at least 30 bpm from supine to tilt (anytime during).Syncope is not a requirement and has more to do with NCS (Neurocardiogenic Syncope). But, syncope can occur with POTS, but not required for diagnosis. Quote Link to comment Share on other sites More sharing options...
summer Posted April 28, 2009 Report Share Posted April 28, 2009 I almost never faint (I have very rarely). With me, I get lots of warning if I'm going to faint and so I can almost always sit down, lie down, squat or whatever to prevent fainting. I am sure that fainting is not part of the diagnosis. When I had my TTT I was upright for 30 minutes with a HR of 140 - no fainting- but feeling like I was going to any minute --Yuck. Summer Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 28, 2009 Report Share Posted April 28, 2009 I always feel like I'm going to and have to sit, lay, drink or eat something. thirst is like crazy and lately hungry. horrors in the middle of the night with low BP. I trip and fall going to the kitchen to find food and while there check my BP. What a Trip! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted April 28, 2009 Report Share Posted April 28, 2009 POTS has nothing to do with fainting but some 'may faint' of course. you just need Min 30BPM HR increase when upright..some of us have 50 or 70 when upright increase.I feel horrible with PRE syncope issues as do many others and some doctors have written these patients are sicker as they are always on the edge of feeling faint. (visual black outs or tunnel vision, cognitive impairment, feeling disoriented)Aside from the obvious risks of REAL FAINTING and hitting the ground suddenly, some faint then recover and feel better. Thus I have read many fainters can keep jobs and still work. Their bodies crash and then rebound quickly. Although some of course faint and feel horrible for hours/days afterwards. No real neat box for ANY of us thus the complexities.It's the catecholamine and HR screaming that keeps us fatigued.Sadly some TTT are not INTERPRETED correctly unless a patient faints. I had the attending doc tell me my TTT was "inconclusive" and I needed to 'consider lifestyle changes'?? after being disabled 8 years. I left that TTT depressed and despondent since my ANS doc thought this would be "our answer" to my issue with gravity. It was days before I saw my "real cardiologist" as this idiot was not my doc but a young member of the cardio group. My doctor said I had obvious autonomic dysfunction as did my regular ANS doc. and when Dr. Grubb saw my TTT results said at first glance "obvious POTS"Hope you get some answers with your test. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted April 28, 2009 Report Share Posted April 28, 2009 About the chronic pain well i have it as well and it's not in my head. I cry myself to sleep with the pains in my legs. oh, everything hurts!Today I'm done in from trying to be a good mommie and grand mommie over the past few days. payback the worst! oh nooooo a huge heat wave is passing through my body, i knew i shouldn't have stood up and walked as I can feel my pressured dropping right now. Every time i start to sweat I close to passing out. Luckly for me I'm lying down. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 28, 2009 Report Share Posted April 28, 2009 gees that doesnt inspire much confidence in your doctor... It is actually quite rare for POTS patients to faint or experience syncope - infact only around 10%-30% of patients report actual syncope and even though my POTS at times have been totally disabling, ive only ever actually truly fainted twice. Julian Stewart's recent article entitled 'Orthostatic Intolerance: An overview and Blair Grubb's recent article in Circulation on POTS both report that actual syncope in POTS is rare. Refer your misguided doctor to their work. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 28, 2009 Report Share Posted April 28, 2009 I must agree with the others that your doctor seems misguided. Syncope usually occurs in NCS and orthostatic hypotension. I have two doctors that don't agree on my diagnosis. One says POTS, and the other severe orthostatic hypotension. I can faint daily during my bad spells, and I also have lots of 'grey outs' where I'll just suddenly fall. I hope your doc figures it out correctly!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
all4family Posted April 28, 2009 Report Share Posted April 28, 2009 Jana, in addition to outright fainting I also get what you describe with just suddenly falling. It feels awful. I just suddenly feel like I have no muscle control, like I am made of jell-o, and down I go. I read somewhere about this loss of posture, but as usual I have read so much I can't rember where I read it. Do you get a jell-o like feeling when that happens? Suzy Quote Link to comment Share on other sites More sharing options...
flop Posted April 28, 2009 Report Share Posted April 28, 2009 When I first got POTS I fainted a lot (up to 10 times per day). As I was put on medication and started learning how to live with POTS my actual syncope episodes got much much less frequent.My local cardiologist and my ANS specialist both agree that I have POTS (never fainted during a TTT but tachycardia up to 170/min). My EP cardio actually says that I don't have POTS as you can't have POTS if you black-out, he labels me as neurocardiogenic syncope, tachycardia ?cause. (I know that he is just as wrong as a doc that says all POTS people faint).Basically fainting is not part of the diagnosis of POTS - most people don't actually faint but often feel like they are about to faint.Flop Quote Link to comment Share on other sites More sharing options...
arizona girl Posted April 28, 2009 Report Share Posted April 28, 2009 Jana, in addition to outright fainting I also get what you describe with just suddenly falling. It feels awful. I just suddenly feel like I have no muscle control, like I am made of jell-o, and down I go. I read somewhere about this loss of posture, but as usual I have read so much I can't rember where I read it. Do you get a jell-o like feeling when that happens? SuzyHi guys, this is so interesting. Since I was a kid I would get episodes where I'd get queasy, light headed, pale, clamy, ringing stuffed ears, heart pounding, and things would look orangey, then I would slowly fall to the ground and not be able to get back up, I'd be crawling around kissing the dirt, don't think I ever totally passed out. Then it would pass and I'd be fine again. Sometimes years would go in between the episodes. So fast forward...to my recent TTT test finally, stand there with hypertension and tachy for 20 minutes, then nitro, then BP starts to drop, heart rate shoots way up, still standing, then they say we can't get a BP on her, then all my lovely episodes symptoms hit me and then I collapse and pass out. Which I didn't realize I had when they put me down. So by the time I collapse I pretty much have no blood pressure and it happens very suddenly.So it's seems on a daily basis I get the orthostatic HYPERtension and tachy and then something happens once in a while, or more often if I wasn't so good at avoiding it, I get the pre-syncope, that if I don't get off my feet would be outright syncope.I get the jell-o thing, I always called it rubbery legs, like you go to take a step and your leg turns into bendy rubber, like you don't have any bones in your legs. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted April 28, 2009 Report Share Posted April 28, 2009 Hi Suzy~Absolutely! It's like I'm standing one minute, and then the next I go into 'jello form' and just drift right down to the floor - more like a splat! Not very ladylike, I'm sure.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
mkoven Posted April 28, 2009 Report Share Posted April 28, 2009 sounds like there's a lot of misinformation out there. i also heard a lot of this when seeing cardiologists who are not expert in ans issues. it's wearing. i was told i couldn't have orthostatic hypotension as only old people get that. i was told i couldn't have pots and OH. i was told i would actually have to lose consciousness on the ttt for it to count. i was told that orthostatic hypERtension does not show an ans problem. ARRRGH! my body does different things at different times-- all showing ans issues-- sometimes i drop my bp when i stand, sometimes i drop my hr, sometimes both go up, sometimes one goes up and the other goes down. sometimes i feel fine when my vitals are awful. sometimes i feel awful when my vitals look okay. (and when that happens the docs definitely want to give you the nutcase diagnosis). and i can't believe i'm the only ans patient with this kind of variability!!! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 28, 2009 Report Share Posted April 28, 2009 I don't allow myself to get to the point of passing out.I do all this behavior modification. I did try (foolishly) to do a "stand up MRI" to help the doctor see the extent of my pelvic collapse and forgot that you can't move during an MRI...OF COURSE I PASSED OUT!!I haven't had a problem since I became very intune with the level of compression that helps and sitting down when I must. Quote Link to comment Share on other sites More sharing options...
LindaM Posted May 5, 2009 Report Share Posted May 5, 2009 About the chronic pain well i have it as well and it's not in my head. I cry myself to sleep with the pains in my legs. oh, everything hurts!Today I'm done in from trying to be a good mommie and grand mommie over the past few days. payback the worst! oh nooooo a huge heat wave is passing through my body, i knew i shouldn't have stood up and walked as I can feel my pressured dropping right now. Every time i start to sweat I close to passing out. Luckly for me I'm lying down. Hi Bella, my fibro/chronic fatigue doctor found two viruses in me and put me on Amantadine for the HHV-6 and Valtrex for EBV. After taking the Amantadine my leg pains cleared quite a bit and the HHV6 is a past virus. The EBV is still high and I need to do Valtrex again, but keep forgetting to take it. Ugh. But unless it's a coincidence, I really think the Amantadine helped. May want to do some viral tests. It helped me a lot. LindaM Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 6, 2009 Report Share Posted May 6, 2009 Fainting is not part of the criteria for POTS... only for NCS and related issues. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 7, 2009 Report Share Posted May 7, 2009 Linda, Thanks for the info. i been tested for EBV and i never knew i had had it. The doctor's office said they had never seen such high #'s. I didn't currently have it, but could get it again in the future. I really thought I had it as I'm so fatigued, but this past summer I had a cancer scare and the meds the put me on made my POTS so bad my heart got so tachy and I got so tired. I will ask about the HHV-6 TEST. IT IS IT STRANGEST PAIN , and after reading about it last night I worked with preschoolers forever and I believe it's related to roseola. I also had problems with my bone marrow being supressed years ago from a medication for depression and anxiety when all along it was POTS. Do you by chance get planter fascitis that really never goes away? thanks again for reaching out to me I felt blessed to get that message last night.I hope you are feeling better. I'd love to know more about your pain and how long you had it for if you'd ever like to chat.sincerely,Bella Quote Link to comment Share on other sites More sharing options...
EarthMother Posted May 7, 2009 Report Share Posted May 7, 2009 I also get high titers for EBV periodically I didn't realize you could treat that.Putting HHV-6 down on my list for my next work up.~EM Quote Link to comment Share on other sites More sharing options...
ana_22 Posted May 7, 2009 Report Share Posted May 7, 2009 i dont faint.... Quote Link to comment Share on other sites More sharing options...
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