dpeeps

Hey Margiebee - I have many periods of feeling great with very few symptoms. Right now I am really good. The tachycardia really never leaves, and most days I will have moments of lightheadness, a little dizziness, but who is complaining? Those are the good days!! I have had days, weeks where I felt so good that I was convinced I was "cured". Unfortunately, the more bothersome symptoms always return. I have learned not to panic when they come and tell myself, "I will feel good again, I have been through this before". Everyone is different, so your experience may not be the same as mine. I was physically very active when I had my first major flare last year in March (2012), so in my case it was not due to deconditioning, etc. In any case, I am glad you are feeling good. Enjoy it, whether it lasts a day, a week, or forever ....you know it is possible

I have a lot of PVCs which feel like skipped beats, but I guess they are actually extra or premature beats (?) Typically there will be 2-3 every 60 seconds. I also get random chest pain. I have had a couple of EKGs, and an Echocardiogram which were basically normal. I asked for a Holter Monitor, but the cardio said "no, it is just POTs"

Can you tolerate caffeine at all? (I realize most POTS patients can't).... I too suffer from migraines and a disruption in sleep patterns is one of my triggers. If I drink a little caffeine (just a little bit, like one cup of "half-caff"), it seems to help. Unfortunately, if I drink too much caffeine, it has the opposite effect and it GIVES me a headache.

I can get them standing, sitting or laying down. Actually they are worse when I am sitting or laying. Similar to what someone else said, walking around actually seems to drain the adrenaline a bit. The tea I mentioned before mainly helps me to keep from panicking about what my body is doing to me!!! Traitor! LOL

Resting heart rate is average around 75-80. Standing averages about 115-120. I haven't really noticed much tachycardia while sitting, but I do get other effects while sitting such as light headedness, dizziness, and pre-syncope. Upon diagnosis, I initially debated with the doctor that I did not think that I had POTS since I have these symptoms while sitting.

I get them too, so I feel for you. They are awful and very scary. I was tested for pheo- (adrenal) tumor which was negative. I kind of just have to wait them out. "Easy Now" tea by Traditional Medicinals has helped. They have a stronger version too: "Nighty Night"

I am supersensitive to perfumes, hairspray smell, and incense. Incense will trigger a migraine within just a few minutes of exposure. If somebody is jogging across the street and wearing perfume, I can smell it and start to feel nauseous. I avoid the entire floor of any department store that has a perfume counter. I have to toss the "Ulta" catalog as soon as it arrives, before the little scented perfume cards fall out onto the floor. I am okay with most scented candles, however. As for sweating, I sweat inappropriately. I can exercise and hardly break a sweat. Then I can be sitting or sleeping in a room that is like 65 degrees fahrenheit and break out into a sweat for no apparent reason. Other times I am freezing cold, particularly my hands and feet.

Forget which two posts caught my eye - no pun intended - but, my vertigo or dizziness is like the ground is falling away beneath me. It is similar to being on a boat that is rising and dipping over waves. I don't have this very often, only during bad flares. Somebody else mentioned lights positioned above a ceiling fan. The this effect this makes me sick. I had this happen just recently at a restaurant. The "flickering" was really bad off of the reflection of the utensils. I had to cover them with a napkin, but it only helped a little. I could not engage in any of the conversation at the table. Similiar to the way it is hard for me to focus on one conversation when there is a lot of background noise - it was the same experience. That flickering light consumed all of my energy to try to ignore it. I sound a little crazy, I guess. The flicker competed with everything else I was having to take in and overpowering it at a sensory level. I found it EXHAUSTING trying to ignore that flicker on the table. That is the best I can describe it.

I don't follow any special diet, but I avoid sodas, alcohol, and processed foods as much as possible. I only drink one cup of coffee per day in the morning an no other caffeinated beverages. I feel best when I "graze" all day. I also keep small snacks with me at all times. I lost about 15 lbs during the initial flare of POTs (I was thin already), but I am not maintaining a healthy weight.

The best I feel is when I have only one cup of coffee per day. If I drink more, I feel bad - and if I drink less I feel bad. I know this sounds odd. I find that the one cup perks my spririts and gives me a little energy to face the work day. If I drink more than one cup though, I crash. I seem to have a personal "threshhold" for caffeine.

My cousin has Neurocardiogenic Syncope (NCS).

Yes, and it was very bad during my initial flare of POTs (just prior, during and right after diagnosis). I agree it feels like a jolt of electricity and a major flood of adrenaline. I don't get them as bad anymore, plus when I do, I just tell myself "its POTS" and remain calm as possible.

I suffer from migraines. Everyone is different, but here is what works for me. If you drink caffeine, drink the same amount at the same time every day. I drink only one cup of regular coffee in the morning and never, ever vary. Too little, too much, vary the time I drink it, etc. can trigger a migraine. I have noticed a reduction in headaches since taking magnesium. I only take 250mg magnesium per day. As soon as I feel a migraine coming on, I go into a dark room, turn on the fan and put a wet cloth or ice pack on my forehead. If I think I can get to sleep within 15 minutes, great. If I think I will not be able to get to sleep within 15 minutes, I take a very low dose of Xanax (1/2 a .25 mg tablet). This is what works for me. When I wake up, I feel better. The trick is stopping it before it goes to far and then there is nothing that works and I have to just ride it out, on the bathroom floor vomiting.... no fun.

Adrenal surges and chest pain. I don't like the other symptoms, but I have come to terms with them. I will never get used to stabbing chest pain

My experience was like MargieBee. I had symptoms, but nothing worse than what I experience every day. I did not pass out, though. And I hear that is what makes can make it "bad" for some people. They did not have to use any additional drugs to illicit a POTS response. THe doc had what he needed within less than a minute after Tilt with my HR increasing 50 BPM upon upright tilt. I felt yucky, but again nothing worse than I experience during a flare.

I have random muscle twitches which I pretty much ignore as it is one of my least worriesome symptoms. The most annoying are ones in your eye. One time during my biggest flare last year, my eye twitched every waking hour for 3 months without relenting. Annoying!

I was there for over an hour, but the POTs test was positive within about 45 seconds of upright tilt. My tachycardia comes on extremely fast after standing up, so this was no surprise. The reason I was there so long is that they did a lot of stuff while I was laying down, before the Tilt. I laid down for maybe 30 minutes before they started the tilt. Then afterwards, even though I never passed out, they had to dismantle everything and take the IV out, and they made me hang around and drink several juice boxes. It wasn't bad at all, but then I hear it is worse if you actually pass out. I didn't feel any different than I do when I stand up at home. Dizzy, lightheaded, tachy, vaguely nauseous, etc.

jkoconne - sorry for the delay in responding to your question. Actually I just now saw it. No, I have not had any in depth testing. This probably sounds bad, but I just tell myself "Its Pots!" over and over again until I fall asleep, aided by a Xanax. I don't take the Xanax every day, but I am so tired of hearing the docs say it is a normal part of POTs, meanwhile I am certain this pain is coming from my heart and that it is a sign that something is very wrong. I mean isn't that what pain is? Your body is warning you that something is wrong. Anyway, although something is wrong, but it might not be life-threatening, etc. So, when I cannot cope with it, I just try to sleep it off. It is definitely more prevalent pre- and during menstruation, so there may be a hormonal component exacerbating whatever "it" is (?) Hope things settle down for you. Try to see if you notice it more around your period too.

Issie - thank you for responding I am sorry to hear about your issues as well. POTS is life altering, but when you add the layer of "my brain can spontaneously bleed at any time and potentially kill me on the spot", it is really hard to deal at times. Talk about anxiety!! To answer your question, no my rehab was not bad at all except for excrutiating daily headaches for about a month following. The neuro issues were "word finding" or saying a random word in a sentence where the word made no sense. The other one was an extreme sensitivity to sound. Friends and family engaging in normal conversation sounded like they were yelling. I could not watch TV at all. The lowest setting was too loud for me. Also, peoples voices sounded different - like an octive higher. Weird!! I had migraines before the SAH and still do, but I can tell you that a SAH feels different than a migraine in that it comes on like a freight train. I felt perfectly normal (no hint of any head or neck pain) and then with in about a 20 second time frame I was nearly collapsing from the pain. If it happens, you will know it and don't delay - call 911. I don't mean to scare anyone. I personally don't believe POTS caused the SAH. I do believe the SAH made POTS worse. I was taking birth control at the time of the bleed and that is risky for someone my age (35+). They could not find any AVM or Anneurysm, so no definitive diagnosis on what caused it. My grandparents all lived to be at least 70+, with no strokes or brain hemmorrages. Who knows? There is a website (forum support) for SAH sufferers called "behind the gray". Most of the folks have lingering symptoms which overlap with POTS such as exercise intolerance, fatigue, chronic headaches, brain fog/forgetfullness, nausea, dizziness, lack of concentration, etc. It sounds like they are monitoring you carefully so that you do not go through this, which is good. One of the things the neuro told me post-SAH was to "stay hydrated!!!" (hehe as if I had a choice with POTS)

I had a spontaneous brain hemmorrhage (SAH) and strokes in both Hemispheres in July, 2010. There were some neuro issues immediately following, but resolved within 1 month. I was very lucky since many folks die on the spot. My first moderate - severe POTs symptoms appeared about 8 months later with pre-syncope and veinous pooling. Symptoms progressed from there, but slowly and nothing really stood out until a major flare in March of 2012. Several trips to the ER and lots of tests over the next two months revealed nothing until I saw the Cardio who quickly suspected POTs and confirmed with TTT. The cardio is suspicious that the SAH I suffered was the cause of the POTS, though no one can be sure. I recall when I was in the hospital recovering from the hemmorhage, the physical therapist said, "Whatever (conditions) you had before, may become intensified after this trauma". I recognize that many, if not most of the POTS symptoms, I have had all my life, or at least since puberty, but they were never severe enough for me to seek treatment, nor did I realize they could somehow all be connected as one illness/syndrome, etc. I am just wondering if anyone out there suspects that their POTs is due to brain trauma and whether or not they had "POTS-Mild" before the trauma Am I the only one?

Mixed feelings. My logical side says that pills are unnatural and we should find what we need from natural whole foods and herbs, etc. I have had HORRIBLE reactions/overreactions to many meds. Zoloft was the worst. I am telling you it was the darkest point in my life and it took 2 weeks to feel better. I am told this is impossible, but I was a shaky, crazy, muscle-jerking, eye twitching zombie for two weeks after stopping taking it. I ate nothing and lost 15 lbs in 14 days. Anyway, I took Amitryptiline for a while to prevent headaches and had no side effects except I was starving all the time and got a little chunky . The only thing I take now is Xanax if I am going to a busy or loud restaurant because I am super sensitive to noisy, sensory stimulating environments. It just takes the edge off so that I can enjoy myself without having to try to filter out all of the noise. Seriously, how do people talk to each other in loud restaurants? I have the hardest time tuning out the so-called "background noise". It's like ever sound is at the same level of intensity - loud! All that noise competing for my attention makes me very sick - *sigh* Also, I have to take one to go shopping for clothes. The loud music makes me sick.. I cannot stay long enough to try anything on. I have to grab as many things as possible and get out of there before I start to feel sick. I also take Magnesium with no side effects except a positive one in that it helps me to sleep. I always take less than the RDA for any vitamin however. Sorry I am rambling. This is a good place to ramble

Bebe - that is interesting. My heartrate increase was not as dramatic as yours, yet my cardio told me "you definitely have POTS" He then alluded that there was other stuff he could do (injection?) but that it was not necessary. I remember his exact words "we could go further with the testing, but there really is no need to" My heartrate while lying flat was in the low 90's and it rose to 148 within less than a minute upon tilt. I felt dizzy, light-headed and nauseous, but never passed out. Interesting that my cardio was so sure, while yours only said "probably" - even though your bpm increase was greater mine.

Gluten-free is really not that hard once you get the hang of it. I have never been tested for Celiac because I haven't been well enough to do the scope, but I attribute my digestive tract going back to normal to my Gluten-free and low dairy diet. Also when I was in that state of constant diarrhea, the iron supplements just added to it. Now that my digestive tract is good, I can tolerate iron in my vitamin more often, but not daily yet. Thanks Hope for the info. I am wondering if it is gluten sensitivity - can this be something that develops over time? I mean, prior to POTS I never had any issues with diarrhea. I guess the best thing to do is try it to see if it helps. I bought some gluten-free waffles last week to eat for breakfast because I like to have something startchy texture when I wake up. I thought to myself, "Hmmm.... they taste like mashed potatoes!!! " Then I looked at the ingredients and it said "potato flour" hehehe no wonder. I read the instructions and started toasting them a little longer until they were crunchy. Once I got used to them, they started tasting great!

My hands and feet get so freezing cold that sometimes I have to take a bath to warm up, but then I feek super tachy and tired.

Hi BeBe127. I am curious when you say that you had a positive TTT, but not sure if it is POTS? I thought the TTT was the definitive test for POTs (?) The reason I ask is I am wondering if I have celiac disease primary with POTs secondary. I tested positive (extremely positive) during the TTT, but have never been tested for celiac disease. (Now this is embarrassing, but...) I have had chronic diarrhea for over a year!! No amount of fiber helps, I take Iron for anemia, which is suppose to make you constipated - not me!! Maybe I should just cut out gluten and see what happens. I heard it is a tough diet to follow though.