dpeeps

I don't like to try new medications. There never seems to be a dose small enough for me!! My body overreacts or it reacts completely opposite to what the drug is suppose to do. I totally understand where you are coming from.

I used to over-commit to everything and was burned out all the time. Since POTs, if I have plans in the evening on a Saturday night, I can do something in the morning, but I plan a long afternoon nap in the middle of the day. I literally plan my day around that nap. No nap, no evening out. I don't care if people don't understand!! I am responsible for myself and I know how to take care of myself. IF there is any sort of silver lining, POTs has taught me how to slow down and listen to my body.

jkoconne - you are not alone. I have chest pain randomly. Upper left side behind my breast. Feels like a stabbing pain in my heart. Terrifying!!! Honestly, I can take the dizziness, nausea, palpitations, tachycardia, chronic diarrhea, light headedness, brain fog, heat intolerance....anything, anything over the chest pain. Two EKGs normal, Echo cardiogram normal. I want a Holter monitor, but the cardiologist says it is all related to POTs. I really do not cope with this symptom well at all. How do we know for certain that our body is not trying to warn us of a pending heart attack? The EKG on tells you if you have alreay had one.

I chose acute and spontaneous onset, but looking back I've always had many of the symptoms (since puberty). My first real flare was 13 months ago and it was severe, sudden and debilitating. I only realized later that most of the POTs symptoms I had in a milder form for most of my life. I didn't know anything about POTs and did not know that all the weird stuff I experienced was all part of the same medical condition.

I too deal with a lot of anxiety, but nothing like the time leading up to my POTS diagnosis. I was CONVINCED I was dying. I had never been so sure of anything in my life. Prior to POTS, my doctor used to give me a hard time that I needed to keep up with my annual physicals, etc. I hardly ever sought or needed medical care. Anyway, I am much better knowing what I have and that anxiety is a normal part of POTS. I don't tolerate any meds well, except Xanax. I take a very low dose and only when symptoms flare or feeling particularly anxious. Non pharmaceutical stuff that has helped me (other than salt and water Talking about the anxiety seems to help a little bit. We always try to be so strong. Tell your family or friends (or this forum) how you are feeling. It does seem to help. Also, this may sound weird, but find a way to laugh. Have you ever been laughing really hard and felt anxious at the same time? It is kind of impossible. (yes, there is "nervous laughter"), but I am talking about genuine laughter. Acupuncture has helped me a lot too, though I cannot afford to go as often as I would like to (my insurance will not cover it). Right now I am hooked on "Easy Now" tea by Traditional Medicinals. Magnesium tablets too. None of these things are magic bullets, but in combination have helped me. I still have bad days too though, so it is a work in progress. I think trying new things also, gives you a sense of power, control and of 'moving forward', all which help lower the anxiety threshold.

Overall, I would say better during and after exercise. I practice yoga with no issues, though I don't like the temperature in the yoga studio (too warm), so a lot of the time I just use dvds at home. I walk my dogs every day and enjoy that a lot, but I have to walk in the morning or evening. Even when the temp is mild, like 68-70 degrees, if the sun is shining, it is too hot for me. I get super tachy, throbbing headache....sometimes a migraine too. There are maybe 4-5 days per month where I am too sick/fatigued to walk the dogs, thankfully I have some help with that. I sometimes wonder if I stopped the walking and yoga for a period of time, perhaps my symptoms would intensify and I would never be able to get back into it

The pads of my feet turn dark blue/purple when I step into a warm bath. I don't stay in the bath for more than a few minutes because my heart starts pounding, but anyway, I do like a quick bath. I never see any purple on my hands. A year prior to POTS, I was tested for Reynauds, which came back negative. Would this situation qualify as veinus pooling? I forgot to ask my POTS doc.

Thank You Alex (suggestion regarding the Beta-blockers). My cardio actually said he would send me to a compounding pharmacy where they could give me the lowest possible dosage which is not normally available in tablet form. It really ***** to be so sensitive to medication. I always say to myself, "better to just feel crappy Potsy, but myself than to endure side effects". The problem is, they side effects creep up on me and seem to have a cumulative effect. With the Zoloft, I started at 1/4 dose for the first two days, then went up to half dose and started having major problems. Even after I stopped, I swear it was like a week before I started to feel anywhere close to normal again.

Well this is tricky. I was put on SSRI Zoloft before right before being diagnosed. I had been to the ER twice and also to see my Primary Care Doc with Tachycardia, Chest Pain, Light headed, and pre-sycope, GI upset (sound familiar?) , all of whom thought I had Panic Disorder (a more severe form of Anxiety Disorder). I lasted 7 days on the Zoloft. I have never been so sick and mentally unstable in my life!!. I laid on the floor an entire weekend staring at the ceiling. I did not eat for 5 days, had horrible GI issues, muscles jerking uncontrollably, I felt completely on the edge of insanity. I had never been diagnosed with depression, anxiety, or any other mental illness before. It was hands down the single worst experience of my life!. A few weeks after I stopped the Zoloft, I was sent to a Cardiologist who asked me all kinds of questions and then said "I think you might have POTS" I had never heard of POTS before, but now think I had a mild form of it most of my life - maybe since puberty (?). I had a traumatinc brain injury about 18 months prior to the POTS diagnosis. After that, the POTS symptoms grew gradually worse up until the time of diagnosis. Anyway, I had such a terrible experience with the SSRI that I am afraid to take any new medication, such as a Beta-blocker which the Cardo believes will help me. I guess a lot of people do well on SSRIs, but they are not for me. It might have to do with the underlying cause of POTS for each of us.... we have similar/same symptoms, but perhaps different causes...

I am in the US.... From what I have experienced of the ER room (only two visits just prior to POTS diagnosis), they are simply evaluating if you are in a "life threatening" state. Once EKG comes back normal, vitals okay, bloodwork ok, they watch you for a little while, then send you home with instructions to see your primary care physician, regardless of how crappy you feel or how scared you are. If you are not currently dying or in danger of dying, the send you on your way. There is also "Urgent Care" which is where you go when you feel really bad and cannot get into see your regular doctor.

I am not sure if I experience phantom smells, but OMG just the thought of incense makes me feel nauseous!! So calling it up from memory is pretty bad too. If I walk past someone with strong perfume or cologne, the nausea and headache (sometimes even migraine) comes on fast! Perfume and Incense are the absolute worst for me. Hairspray is bad, but not as nearly as bad as the other two. If I could magically blast every bit of incense and perfume into outer space, I would!!!

I started taking Magnesium to help me sleep. I do have fewer headaches, but I believe it is because I am sleeping through the night now (most nights anyway). When I don't sleep well, I always have a headache and often a migraine. If I take the magnesium and still don't sleep well, I will still get a headache. That is why I think the Magnesium is "indirectly" helping the headache situation, but only when it is successful in helping me to get a full night of sleep.

I am able to work, but my job allows me to work from home. I have been on a conference call with my boss and said "whoops, gotta lay down". (I get pre-sycope even when seated - no clue why). I am lucky that she is so understanding. We continue the call with me laying on the floor - probably not something I could do if I worked in the office. I usually take a two hour break in the late afternoon and then come back online for a couple hours in the evening. This seems to work for me. The days that are hardest are the migraine days.... On top of having to stop working, get into a dark room to shut down, etc. I have really negative thoughts like - "I cannot do this anymore (work)", "I am missing work and going to get fired!". It's like on top of enduring the pain of the migraine, I have this negative tape running through my mind which is not really even based in reality, but it happens every time. For me migraine = a temporary altered mental state. I just tell myself "This will pass" and pray for sleep.... when I wake up, I am generally much better and things are back in perspective.

My legs generally feel pretty good/strong. I walk about 45 minutes per day, so maybe that helps. What I get in my legs is a feeling like the earth is falling away from me, like I am on a boat or something - the best way I can describe it. My arms however, feel very fatigued and generally 'weak" when doing any kind of lifting or housework. I hate changing the bed sheets - really hard for me to stretch the fitted sheet over the corners of the mattress, plus I get pre-syncope bending over to do this little chore. I am planning to add some weight lifting to my exercise routine. < I humbly acknowledge that I am fortunate to be able to exercise, as I know many are not. Yes, I do have bad days where I cannot exercise, but the next day I will always try again, mostly successful >

My neurologist wants to send me for a sleep study, but I haven't done it yet. My issue is staying asleep. I fall asleep just fine, but wake up between 2:00-3:00 AM, heart racing. Anyway, I heard somewhere that Magnesium helps with sleep. Not trying to push it here, just noticed that my insomnia is about 75% better since I started taking it. I have no idea if it will work for others, but I believe it has helped me greatly. I don't feel any different with any other symptoms - the Magnesium only seems to help with my insomia problem.

I had no idea that licorice could be beneficial for some people with POTS. <Still learning - less than 1 year since diagnosis> However, this is very interesting. First, let me admit - I have always 'liked' black licorice (the Austrailian kind with actual licorice extract). I noticed that I crave it particularly before and during mensruation. These are when my POTS symptoms are at their very worst. During this time, if there is black licorice in the house, I cannot stop eating it!! LOL. Now I will have to try the tea.... thanks for posting this topic.

I had a colonoscopy about 1 year before my POTS Diagnosis. I told the GI doctor that I was super sensitive to medication (I had no idea at the time what POTS was or that I had it). In any case, I was given a "cocktail" of Fentanyl and Versed. Things did not go well..... I did not "come out of it" as planned. My first memories several hours after the procedure were dizzy, disoriented, severe nausea, vomiting. I was in the hospital all day and was finally released later in the evening (my colonoscopy at 10:00 am). They were doing all kind of bloodwork, wheeling me around the hospital for additional imaging, all of which I only vaguely remember. They could not figure out what was wrong with me! I have no idea if what I experienced had to do with POTS specifically, or just a bad reaction to those specific drugs. I wish I had known I had POTS (explains my overreaction to almost any medication, etc.) so that I could have had some extra oversight, extra fluids, milder sedation/perhaps a different combo of drugs, etc.