monica

I get very bad palpiations sometimes ( heart beating out of chest sensation ) and usually have a presyncope just after it starts. I really started thinking after a while that I had an arryhthmia of some kind. I was put on a Cardiac event monitor and was able to capture a couple of these presyncopes on it. When I have these presyncopes I always get nausea..sometimes extreme, also feel very hot/start sweating, ringing in ears and then I feel extremely weak and usually slump to the floor. I was told by my Cardiologist that my heart was in normal sinus rhythm with tachycardia when these happened ( tachy into 150s-160s but I have had these with HR of 110-130 also). I just had another one of these presyncopes yesterday and immidiately lied down on the floor because an EP Cardiologist told me to NEVER keep standing as you want the brain oxygen perfusion to return to normal level asap. Incidentally, I was also wearing an EEG yesterday when it happened, so it would be interesting to see what it shows Maybe you can ask your doctor for a holter/event monitor for peace of mind?

Oops! Sorry guys ..my bad for thinking that they were the same..brain-fog I guess

Thank you Hyperpots for the awesome information! I already drink lots of water and add extra salt to my food but will make sure now that I drink even more and will also try the salt tabs. I will definitely look into Dr Levine's exercise protocol too! I am willing to do anything so that I don't have to take meds. I have tried my best all these years to avoid them but it had come to a point where I really needed some serious help. One thing that is helping is eating lots of small meals throughout the day... I don't seem to tachy that much when I do this.

Thank you Hyperpots, I will search for the article and take a print-out to my doctor too. I'm hoping Florinex works for me and I won't need to take a beta-blocker.... Just curious, how long you took florinex/ other med before you saw an improvement in your symptoms/less tachycardia ?

Thanks Alex, Chaos Yeah, 60 mg did seem high to me. Good I asked you guys before starting it! I tachy into 110-120s on standing usually but after eating/hot showers, I sometimes tachy into 130-140s. I am trying to eat very small meals these days to control that.

Yes! That's a great idea You are right...If I start having problems, I will never know which medication is causing it. I think I will see for sometime how I do with Florinex ( on it for 2 days now and so far I'm doing good!). I have an appointment again with the doctor in 2 weeks and I will ask about a low dose of Propranolol. Thank you!

This is very interesting! My EP Cardiologist wanted me to try Ivabradine (Bystolic) 5mg for what he thought was IST.But I never did. Another doctor who diagnosed me with P.o.t.s. wants me take Propranolol 60 mg instead. Haven't started that yet either and I have been wondering if I should try Bystolic instead since the EP said that Bystolic has fewer side effects than other beta-blockers? I too would like to know if anyone with P.o.t.s. had success with Ivabradine.

Thanks for replying! Yes, I think I want to start with a lower dosage for sure, so when I asked the Phramacist if I could cut the tab in half/quarter, she said that I shouldn't do it with this tab. The paper attached to it also says that it shouldn't be cut..so I'm not sure what I should do now?!

Thank you Corina! Naomi, yes! I also believe that all my problems started after the injury/whiplash accident. There is a definite connection..it's like I changed completely after this. I used to be very active, could mult-task etc but gradually over the years, it's just been down-hill. My presyncopes/syncope also got worse....I had maybe 1-2 episodes per year in the beginning but this year I have already had 14-15 presyncopes!

My Doctor has asked me to take Florinex 0.1 mg and Propranolol 60 mg(one tab every day)for P.o.t.s. I have started taking Florinex but I'm extremely sensitive to medications so, only starting with 0.05 mg and maybe build up the dosage later. My doctor said that I could do this. I haven't started the Propranolol yet as I'm very scared to try it ( The doctor said it will help with my Tachycardia and prevent Migraine/headaches). The Pharmacist said it's extended-release and I should take it at night as it can cause side-effects like drowsiness etc. I'm wondering if anyone has tried Propranolol 60 mg? Is 60 mg too high a dose? I mostly see people here mention that they only take 10-30 mg.....Thanks!

This is such a great video!!!! Going to share it with family and friends! Thank you

Hi Naomi! Wow! I thought I was only one who started having all these problems after a back injury! Only my upper back was injured when I stood up straight after bending down, I heard a crack in my back....the whiplash accident happened a few months after this but gradually over the years, the pain spread to my neck and shoulders too. The presyncope/syncope started 1 year after the injury. I don't think I paid attention to tachycardia all these years.. I actually thought everyone had it But I do remember getting bad tachycardia just before presyncopes and also sometimes right after mild exercise. I remember this one episode 3-4 years after the injury, when I had extremely bad tachycardia for 1 hr right after walking lightly on the treadmill...I remember being extremely scared when it happened because my HR just wouldn't come down. I experienced something similar again this year and that's when I decided to show it to a Cardiologist.

Hi Everyone! I’m new here though have been lurking around for a while and have found so much good information here. I have finally been diagnosed with P.O.T.S. and here’s my story…. I had a back injury followed by a very bad whip-lash accident many years ago. I went from doctor to doctor for my pain and they couldn’t find anything wrong on MRI, X-rays etc. Pain medicines didn’t work and after sometime I gave up on doctors and medicines. Meantime, shortly after the injury/accident , I also started having fainting and tachycardia episodes..sometimes I would have warning/presyncopes before these episodes and sometimes I wouldn’t. Gradually , over the years I started suffering from extreme fatigue and would have flare-ups of pain but sometimes felt better for months in between but other things like the fatigue, migraines, dizziness, chest-pain, feeling thirsty, sensitivity to noise/bright lights, fainting episodes, shortness of breath, blurry vision etc kept increasing. Also, the pain spread to my neck, shoulders and arms. So, I went to the doctor again (with a lot of skepticism) and was diagnosed with Fibromyalgia. I started taking my BP at home and noticed that my BP was in 90-100/60-70 range and after the tachycardia and presyncopes/fainting episodes, I couldn't take my BP for 15-30 min and the machine would show always display an error sign. Some days later, after a very bad tachycardia episode on standing, decided to see a Cardiologist too and had a TTT for 45 min (without medications) and the report said that I have no big fluctuations in HR /BP and no Orthostatic hypotension and no symptoms. I did have nausea/sick feeling, dizziness, chest and body pain and did tell the nurse..but for some reason she didn’t mention this in the report. There was no Cardiologist present during the test and the nurse kept talking to me during the test ( I later found out that it should be all quiet during the TTT) and told me a couple of times that my HR was in upper 90s and at one point my systolic BP decreased by 10 points? ( The hospital lost the detailed report of HR and BP readings, so I never found out what the actual readings were during TTT). Was referred to an EP Cardiologist after this and he said that I most likely have NCS ( vaso-vagal syncope). Repeated the TTT again with Isoproterenol and Nitroglycerine and another EP who did the test tlited me for only 15 min and was talking to me the whole time ( I guess he was more interested in the later part of the test). My HR went up by 23 bpm at the 10 min mark, no significant change in BP and I didn’t faint with either Isoproterenol or Nitroglycerine (my HR did tachy upto 150’s after I was tilted with Isoproterenol). I guess all **** broke loose after that because the EP said that I don’t have NCS after all and also because most of my presyncopal episodes take place sitting ( they happen on standing and from sitting to standing also). I was asked to see different specialists and after running from one specialist to another and a zillion tests, nothing significant was found. I was told by 2 Neurologists that I might have POTS and to follow this up with a Cardiologist. Meanwhile I was also put on a 30 day Cardiac event monitor. It showed that my HR would tachy upto 160s especially after meals, hot showers and on standing. The Cardiologist said that I have IST ( Inappropriate sinus tachycardia) and because I recorded tachycardia ( 120-150s ) on the event monitor during the presyncopes, he was also not sure anymore if I have NCS. He said that I might have POTS/Dysautonomia but he’s not sure. Asked me to start taking Midodrine. I was not satisfied with the "not sure" answer and after a lot of research went to another specialist who had done research and clinical studies on NCS ( he specializes in Syncope). After taking my history and looking at the Event monitor and TTT results, he also said that I don’t have NCS and what I’m having is presyncopes due to POTS. He said that he can have me take another TTT but since I had done enough running around already and because he is sure that I have POTS , he’s going to give me a working diagnosis of POTS. I later also showed him print-outs of my BP and HR readings that I took at home lying and standing for 10 min ( I took these with a Withings BP cuff that automatically records the readings on my I-phone and you can print/email them for the doctor). My HR goes up by more than 30 bpm on standing most of the days but not always. I had to go through **** to get this diagnosis but I’m glad that it’s all come a conclusion after years of suffering . I start on Florinex and Propanolol this week and am hoping that I will get some relief. I am excited to have found this forum and look forward to interacting with all of you while dealing with this