Anoj

Wait, so is it saying a vit D defficiency, or vit D as cause? My holistic doc pounded my low Vitamin d levels into my brain years ago before i had POTS. I blew her off. Now I wish I hadn't!

Wow, that is so interesting! Thanks for sharing. I only go to the movies when I've had a long good streak. Even then I take earplugs.

This angers me. I feel so bad for you! Ugh! And people who are depressed can get disability? It's so wrong.

by the way, i was also tested for diabetes when this all happened, and i did not have it!

These POTS Dr's need to make up their minds. I had a POTS Dr. tell me that he noticed a lot of us (me included at the time) have a low BMI and he thought this might be contributing to POTS symptoms. He told me to gain weight. Well, since having my second child, I am ten pounds heavier and a totally normal BMI and guess what, still have POTS! I don't understand what exercise is going to do if one has neuropathy... which causes the pooling because blood vessels can't get the signal to constrict... which then in his words triggers the hyperadrenergic response? Nerve damage is nerve damage. I think this is where Dr's should be looking. Why do so many of us have neuropathy - what is damaging our nerves? Can I ask a question - did the Zoloft come before or after all the symptoms? I recently found out that SSRI's can cause nerve damage - for some it's temporary, for others perhaps not. This was disturbing to me because I had been on Paxil and have neuropathy. If the symptoms began before Zoloft never mind about that, but I'd still look for underlying causes of neuropathy. your response is right on! i DID NOT have these problems before the zoloft! however, i did have "minor" problems. for example, i was unable to take pain pills after dental surgery because they made me faint. however, this was a minor nuisance and temporary. it wasn't until i weaned off of zoloft and then drank some alcohol that i had my true POTS crash. that was the trauma. three beers one night, and i was done. can you tell me where you found this info about SSRIs? also, do you mind if i ask - did you have a hard time weaning from the paxil? i have heard horror stories about it, and i had a rough time weaning from the zoloft. i want to go back to what you said about nerve damage and venous pooling. in my case, the doctor said that my blood vessels constricted very tightly. however, i guess this is AFTER the pooling? how does this info fit into what you are saying about neuropathy and pooling? i'm just trying to understand. so, in order to understand more about the neuropathy, i should see a neurologist? would they be able to explore autonomic neuropathy as well? thanks!

hi claire, the neuropathy was determined with something called a "pseudo scan." i've googled it and can't find any good info. they made me place my hands and feet on these metal plates on this machine, and it scanned me. what i'm wondering with this is what is the point of the test? the only thing he mentioned was my weight and risk of diabetes in relation to this test. but doesn't autonomic neuropathy mean something different than diabetic peripheral neuropathy? i just feel like he's missing the bigger picture with the autonomic system here. i'm 220 lbs. now, but when i got sick i was 160. the weight is definitely because of the zoloft. i was 140-145 my whole adult life and generally happy with my weight, then got on it for stress and gained 20 pounds in 2 months. i weaned off because i didn't like the weight gain, and then i started having fainting spells and then "crashed." cardio put me back on it, and i've been on it since. i feel like weaning from the zoloft the first time caused the dysautonomia. the doctors think it was "masking it." funny, because i never had problems before i got on it. i did NOT want to get back on it, but i was desperate to get back to work. i went back to work for about a year and now am on FMLA again due to the TTT and resulting fatigue, not to mention all the switching in the meds. i don't want to be on zoloft. i hate it. i hate the weight gain. first doc acted like "do you want to walk or do you want to be fat." that's the way i justified all the weight gain. "Well, at least I can walk!" now i have other problems because of the weight, or at least that's how they're making it out. i'm allergic to celexa and lexapro and will not touch paxil because of the short half-life. i was on effexor a long time ago and had some disturbing problems - started to have "withdrawals" before it was time for my next dose! two hours before it was time, i would get the dizzies and brain zaps. so, i'm going to see if i can manage my health without them.

Hi there! I wanted to share my results from recent testing. I got more than a phone call this time - met with doctor for a full discussion. Some of it is still confusing to me! This is the basic summary: Upon HUT, I have extensive veinous pooling. My body reacts to that by increasing heart rate, BP and vasoconstriction. Baseline was 92/63 with 85 bpm. Upon tilt, rose to 169/119 with 107 heart rate. It took 11 minutes for pre-syncope, with 105-110/75. The slowest heart rate was 62 bpm. After the 19th minute, BP went back up to 140-165/95-105. Normal response to isuprel stimulation. Blood tests: Baseline: Catecholomine, plasma 480 (ref range <504) Norepinephrine 442 (ref range <420) this was high-out of range on baseline Epinephrine 38 (ref range <84) Dopamine <30 (ref range <60) Upon HUT: Catecholomine, plasma 611 Norepinephrine 479 Epinephrine 132 Dopamine >30 48-Hour Holter: Bpm varied between 55-139 No PVCs PACs avg. 1 per hour Spectral measurement of HRV suggests diminished vagal control during active hours and poor vagal control during sleep Waking tachy of 120, which he says is abnormal and suggestive of sleep apnea 1 episode of dizzy reported corresponding with walking - HR 120 sinus tachycardia Pseudo scan: (I have no idea what this is - I placed hands and feet on a machine and it scanned) Suggest early systemic peripheral autonomic neuropathy OK, now for summary of the consultation. The doc says that I have POTS, although he doesn't like the term because he says it's becoming "trash can terminology." He says that my problem is pooling, and my body reacts with a hyperadrenergic response. I find it odd that he said POTS since my HR didn't meet the true criteria - raise 30 points or get up to 120 (although my symptoms are consistent with POTS regardless). I am not sure if the labs point to hyperadrenergic POTS or partial dysautonomic POTS. A bit confusing since I have elevated BP and catecholomines. Yet, I have early systemic peripheral autonomic neuropathy and the norepinephrine levels are not up to 600. As you can see, my other levels rose drastically. He said my adrenaline kicks in "with a vengeance" once the pooling starts. So, is it possible to have overlap with different kinds of POTS? Does that even matter anyway? He said that rising HR of 120 is abnormally high, so I will be doing a sleep study. He says this is a possible indication of sleep apnea and this is why I feel constantly fatigued. It's like I'm sleep deprived - despite the fact that I get 9-12 hours of sleep per night! I am disturbed by the peripheral neuropathy findings. I am obese now - 220 pounds. This is due to the Zoloft. My normal weight was 140-145. I have gained 80 lbs in 2 years since I began taking it. At this point he says I am at risk for diabetes, and we decided to start weaning from the Zoloft. I am a bit scared of this because the withdrawal has always been terrible for me - will make my dizziness worse, and who knows how the POTS will react. The treatment of choice is beta blocker - have discontinued Florinef and Midodrine. Here is the part of the conversation that I don't necessarily like. He feels that the POTS is a result of deconditioning. UGH. I wasn't athletic when this hit, but I was definitely very active. Don't get me wrong - I absolutely subscribe to the notion that exercise helps and have even experienced that myself. But he basically said the illness depends on me exercising and losing weight, as if that is the be-all, end-all solution. (I wasn't obses when this started!) Again, I am a willing participant in his treatment plan, but I guess I feel like this deconditioning theory diminishes the seriousness of the syndrome itself. All in all, I am pleased with this doctor. It always takes nearly 2 hours to wait for him, but once you're in, he spends TIME with you. He does not rush you out the door, explains things and doesn't act as though your questions are bothersome. I am also very surprised that he is so close to my hometown. I feel like I have more answers to what's actually happening. (Along with more questions, haha.) I already have an appointment with my endo about my thyroid in a few weeks. I plan to bring him all of the test results and discuss the neuropathy issue. I wonder about the point of this test in a cardiology setting - I don't know why he's focusing on possible diabetes - shouldn't the test be some sort of indication of autonomic problems? If anyone can shed light on that, I'd appreciate it. Thanks for reading; sorry so long.

i was EXTREMELY stressed and overactive when mine hit. two factors that came into play: weaning off of an SSRI and drinking just a little too much alcohol one night (3-4 beers, nothing crazy).

thanks. i'm just sooo frustrated. i felt this dr. and this med was going to be The Answer. i feel like i've tried all of the major things, and i'm starting to lose hope. after this guy, this med, then what? i'm just afraid that i am stuck with this for the rest of my life. it's been a year and a half. it's hard for me to keep my spirits up now. i just hate feeling hopeful for this one thing to work, and then it doesn't and i feel hopeless again. of course, i have hardly given this med a try, so i will keep trying for now. i just don't feel like it's going to work.

It has only been 4 days since I started the beta blocker (at half dose), and I am feeling absolutely terrible. I'm ridiculously dizzy and practically bedridden. When I am upright, I feel like someone is pushing on my head downward. This is worse than before I was on the drug. I don't know whether these symptoms are typical of beta blockers or whether this just isn't the right drug for me. This is why I've never stuck with them before. I'm going to stick with it at least until I see the doc again. Is dizziness & fatigue common for BBs? Does it go away? The nurse said the fatigue would "level off." Not sure about this dizziness. I still don't know about mast cells. Although it did occur to me that I was diagnosed with interstitial cystitis years back, and I believe that is related to mast cells. Well, I will be sure to ask the doc about all this. I was just wondering if it is typical to experience these things on beta blockers? The dizziness is out of control! Ugh.

It looks like you have a narrow pulse pressure, which I think indicates low blood volume. There may be others on this forum who can explain better, but that's my thought. Good luck.

Does clonadine/channel blockers lower the adrenaline like the beta blockers do? Or do they just lower BP.

why are betas not good for MCAS? i got an improvement with the hives by taking antihistamines, but no noticable improvement on the dysautonomia. what else is used other than antihistamines to treat hyper POTS? clonadine? it's just so weird. it seems so counterproductive to me to take anything to lower BP.

i agree with all that exercise does help. i was in a PT program that ended and recently went back because it helped me so much.

Thank you for your quick reply, Issie! You are right, I feel like I am getting very important info. I also found out that I'm not hypovolemic. The 48-hour holter monitor showed a "vagus response" - whatever that means, and still waiting on results from the sweat test. I've tried beta blockers before, but they made me soooooo much tireder than I already was. They also made me feel short of breath. Truthfully, though, I didn't give them a good chance. This time, I will stick it out longer and see what happens. Like, you, I rarely faint. I just have the excruciating pre-syncope, followed by about TWO MONTHS of recovery. Now, how do you know if you have MCAS? How is it diagnosed? I find it funny that I've read things about antihistamines as a treatment for POTS/MCAS, right? A few months ago, I came down with bad hives/itchy bumps and ended up on 2 different types of antihistamines. Now, I'm starting to wonder if I don't have a mast cell problem that is leading to the dysautonomia and and hives. I also wonder if I'm gluten intolerant. Thank you again for your response.

Hello, I have recently had some autonomic testing done, and I have received the results over the phone. I have a follow-up appointment with the doctor to discuss everything. I don't have the lab paperwork, but I plan on requesting it.Until then, I'm wondering what it all means. Some of the info sounds quite contradictory. For example, I had extensive veinous pooling but with vasoconstriction. How can these two things co-exist? Results also said "excess adrenaline" and "transient vasodepressor reaction" (which I guess means pre-syncope, or I didn't faint). Anyway, the treatment is to discontinue Florinef and Midodrine and start Betaxolol (beta blocker), 1/2 pill then 1 pill and upping the dose every 3 weeks as necessary. Another thing I thought to be strange was that before the pre-syncope, my blood pressure actually INCREASED instead of dropped. It wasn't until I was almost fainting that it plunged. It went up to 140/something then dropped to 90/something during pre-syncope. I'm beginning to think that I have hyper-POTS. I have never actually been diagnosed with POTS. I always thought that my syndrome lacked the tachycardia necessary for a true POTS diagnosis. I don't feel that I have tachycardia, however, I have been checking my HR lately, and it goes up about 20 beats from sitting to sanding. Not sure if that qualifies for the 30 beats necessary for POTS. Also, the smallest activity, like getting out of the bath or doing laundry, causes my heart rate to rise significantly and make me out of breath. New development: tonight, I spent nearly an hour cooking in the kitchen and began to feel shaky, weak and faint. Went to the bathroom and noticed that my face was FLUSHED. I'm a little freaked out now, because I am afraid that I have hyper POTS. I have never noticed the facial flushing before - but then again, I never looked at myself in a mirror during these episodes. I am a little concerned that I have hyper POTS and this may not be recognized by my doctor. I'm also afraid that the beta blocker is the wrong treatment! I don't know what is normally used to treat hyper POTS, but I have read that it is not beta blockers. If anyone has any insight whatsoever, I would greatly appreciate it. I go to the doc next Friday, and I will have TONS of questions for him!!! Thank you!!!

Bumping this up in case anyone has feedback. Also, unfortunately the TTT has taken me out pretty bad. I'm very fatigued and dizzy now. I have no follow up appt. and having to miss work. I hope I get some news soon.

i'm always nervous to start a new med. i didn't have any problems with florinef. i started by breaking the pills in half then upped it. i ended up getting BP spikes that were very uncomfortable, so i tapered back down to the half pills and stayed on that.

what is the test for mast cell issues? is this a simple blood test?

OH - by the way! it took them 1.5 hours each time (blood volume & TTT) to stick a vein. does this point to low blood volume? i would think so.

hello all. here's an update and questions. so far i have had the following tests done: vestibular testing - normal blood volume 48-hour holter (where he would look for "different" things than usual - don't know what those things are) sweat test - put hands and feet on a scanner type machine TTT - blood was drawn for baseline & post-syncope - measured for aldoesterone, catecholemines and renin isoproterenol injection - he let me do this supine instead of repeating head up tilt i'm impressed that i've gotten all of these tests locally. i thought i'd have to travel to vandy, etc., for this type of thing. what i'm wondering is how this testing measures up to what's at larger, specialized facilities? what do you guys think? this sounds pretty thorough, eh? i don't have any test results yet. now, for my questions. when i first came down with all of this, my BP was low. after a major crash and hospitalization it was 80/50. during my first "simple" TTT, BP and heart rate dropped drastically. i had pre-syncope after being given NTG but didn't faint. this was in 2010. fast forward to 2012. yesterday, during the TTT, my BP actually went UP. this is something i started to notice during car rides when i would get that sick fainty feeling - measured my BP during one of these spells and it was high. CONFUSED. i thought your BP was supposed to DROP when you felt faint, not rise? so yesterday, after they tilted me up, my BP went up to 140/something. i did not faint during the test but got bad pre-syncope. at that point when i almost fainted, she said it had a sudden drop down to 90/something. for some reason my body seemed to recover, because they did not put me down, and i continued to remain upright without fainting - although felt like death. there were no drugs administered at this time. however, after the tilt, the doc did give me isoproterenol. i was allowed to remain supine, and my heart rate & BP were measured. is this weird? has anyone ever heard of this? i thought they were supposed to raise me up again. maybe he felt he had the info he needed. anyway, i felt like my heart was going to race out of my throat during this injection. i'm not sure what they're looking for there. i am not sure what my heart rate did during the TTT. i have never thought i had true POTS because my heart did not tend to race. HOWEVER, now that i am off all meds, i have noticed that the slightest activity causes my heart to beat faster, and i get short of breath. i guess that's what they call "exercise intolerance." my heart rate doesn't rise just from standing, however, so i never thought of this as being POTS. i am not sure that i meet the true criteria for POTS. can you have POTS if your heart rate doesn't jump upon standing? what about with simple exertion? for example, if i take a bath, just the activity of drying myself off or getting dressed causes my heart to beat fast. is this a symptom of POTS? i am starting to think that maybe i have the hyperadrenergic form of POTS - although i seldom get tachy - but i do have frequent heart palps. can anyone shed any light on this? i am really confused. i cannot wait to get these results!

i have had the same question/problem. my BP has been rising lately when i feel bad, but i still feel faint. idk how you can feel faint and have "high" BP at the same time. i did my 2nd TTT yesterday, and my BP went up to 140/90 when i was rasied, then during pre-syncope dropped to 90/?. i don't have the answer, but i would like one.

i am fortunate enough to say my friends did this for me. they raised about $1,000 for me. all i could do was hope i deserved it. i used to be a musician, so the music community came together and threw a local concert for me. i don't remember trying to educate people about dysautonomia though because i wasn't as educated at that time.

this was excellent. thanks for sharing.

i have been on midodrine and florinef since nov. 2010. recently i have discontinued both drugs in preparation for medical testing. since discontinuing, i've improved in some areas and declined in others. WORSE: Dizziness, weakness, shortness of breath, nausea BETTER: Less "excited," able to travel without blood pressure spikes, not as sensitive to stimulation. one of the biggest problems i've had since dysautonomia is extreme sensitivity to motion or sound. when traveling in a car, about 20 minutes in, i would start feeling faint, like i was going to "lose it." one time i brought a blood pressure cuff to see what was happening. to my surprise, my blood pressure and heart rate had spiked, not fallen - but i still felt like i was going to faint. during these episodes of increased stimulation (whether via car or noise), i felt the "midodrine scalp tingling," which was abnormal considering the tingling as a side effect had virtually gone away long ago. it seemed like any overstimulation would "excite" whatever the midodrine was doing. while on midodrine, sometimes i just felt like any little movement was going to set me off or cause pre-syncope. for example, when i would drive to work and park in the parking garage, i would have to sit in my car for 10 minutes or so to let my body calm down. the vibrations of cars driving in the garage were setting me off. i don't know if that was related to the midodrine, but after my successful car ride today, it kinda seems like it. in the past, traveling was a nightmare. i'm actually sort of excited about this new development, as i feel that possibly discontinuing the midodrine might solve some of my problems. (i think i'd like to resume florinef, but i'll discuss this with the doctor.) i guess my questions are: can midodrine make you sensitive to stimulation? can you feel faint from a high blood pressure spike? can you faint with high blood pressure? does midodrine cause intercranial pressure? during these episodes, i always felt like my head was "full." can this also cause a pre-syncope feeling? can midodrine cause your blood vessels to squeeze too tightly, blocking circulation to the brain and then causing fainting? i've noticed fainting listed as a side effect on the drug info! i know these are very specific questions, quite possibly more appropriate for a medical professional. however, i thought maybe some of you might have some ideas. when the doc told me i'd have to get off my meds before the tests, i was apprehensive and scared, but so far it's not as bad as i thought! TTT is on tuesday, so i should also have a more proper diagnosis. i have never been diagnosed with a specific form of dysautonomia, just "dysautonomic syndrome." another big question is when do you know it's time to gett off of a drug? i thought my body would just tell me, but apparently not. i saw another post about when you know it's time to get off of an SSRI, and i think it's an interesting topic. i was just cruising along without any plans to change my routine! thanks in advance for your replies.