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  1. Today
  2. New here!

    Thank you!!
  3. New here!

    Thank you for your response! It’s pretty crazy to me that a doctor can get to decide who’s “bad enough” to get the privilege of being treated by them. It’s beyond frustrating. I thought I was doing okay on my current regime until these last 2 weeks, I have completely crashed and burned. Trying to hang in there but it’s getting hard!
  4. Yesterday
  5. Ive been searching but finding it hard and need inputs. Doctors here dont really know about pots. So is there a website or something that seems official, credible that can make them take it seriously/pay attention. (That can be used worldwide because im in asia). I think the one from mayoclinic? But is there something that seems more credible and official/worldwide. Because i try to tell them about it using an article but theyre close minded and dont really acknowledge about it. Thanks in advanced.
  6. I take a half tablet daily of Florinef and drink ~4 liters of fluids daily. I drink herbal teas/Trioral rehydration salts and take 4-5 Vitassium salt/potassium caps a day plus eat lots of salt. I have found, and I think one of the expert Drs recommends, that if I "slam" 500-1000mls of fluids every few hours, depending on bp/hr my bp goes up quickly and stays up for a couple hours rather than if I sip liquids all day. My bp though is quite variable. Sometimes too high, sometimes to low.
  7. I was dxed with "POTS with hyperadrenergic tendencies." My supine BP is usually 90/50, sitting goes to 100/70 and standing can go to 170/150 or 99/88 depending on the moment. I get headaches, flushing, tremor, cold extremities, shaking and grey-outs, but have never fainted. My HR goes from supine 40 BPM to 120+ BPM on standing and 180+ with exercise.
  8. I'm so overwhelmed...

    Thank you all for replying - you don't know what a comfort I feel in just knowing others out there understand what I'm experiencing...or maybe you do. It's Thanksgiving morning and I just called 911 - they checked me out but by the time they arrived the ativan kicked in and I chose to stay home. The ER always sends me away with 'palpitations". After my C=section and blood clots I noticed that I would get these random feelings of "fading away" or like an inner dropping sensation....then my heart would kick into overdrive. The early morning tachycardia is the most frightening - I know it is not "anxiety" although it is similar feeling to a panic attack. My blood pressure is always elevated when they take it in the ambulance....like 144/81 - then drops to normal after lying on the stretcher for a bit. I am so tired and frustrated. How do you all manage the fear part of the tachycardia?
  9. Last week
  10. Hello all. I’ve had really bad lower abdominal pain for the last two weeks along with consistent urgency to urinate. I finally went to my obgyn who prescribed me metronidazole/Flagyl cream for a bacterial infection. I always research medications prior to taking them since my dx because I am now extremely sensitive to medications I never had issues with previously. Many sites say that individuals with central nervous system conditions should be cautious about taking this drug and the side effects sound like amplified POTS symptoms. My doctor is aware that I have POTS, however I’m not sure she had that in mind when prescribing the medication. I cannot reach her now for a few days due to the holiday, so I wondered if anyone with POTS or other forms of dysautonomia have had negative reactions to it. It is in the gel form, not an oral tablet. Any feedback will be greatly appreciated. Thanks in advance!
  11. I think this is what is called HyperPOTS, several members here are diagnosed with HyperPOTS. If I remember well, clonidine is used in specifically this type of POTS to lower bp. Hope this helps!
  12. BP won't respond to salt or florinef

    I am on Florinef 0.1 mg also once a day in the morning. I too could not tolerate higher dose as it kept me awake at night. I do not track my salt intake by milligrams I just add salt liberally to foods and drink water and Gatorade. I did find I felt better on the florinef than before I started taking it, and when the doctor's office did not call it in for a refill and I missed 3 days of it I felt terrible. My b/p is normally about what yours is, which for me, is not low enough to make me feel bad.
  13. I've had POTS for the past 3 years. For the past 4 months I've increased sodium and water intake, and for the past month I've been taking florinef. I get about 5000 mg sodium and 100-120 oz water per day, and now also take 0.1 MG florinef. My blood pressure hasn't budged at all. It runs low normal (and is not my main symptom so I'm not necessarily trying to raise it), so 100/60 lying down and 100/80 standing. I take my BP lying and standing almost every day and I'm a scientist so I have analyzed the numbers and there is no statistically significant change between salt alone and salt + florinef. For those on florinef, how much sodium and water do you get per day to see an increase in bp? Does anyone get benefits from florinef without an increase in BP? I have also experienced an increase in heart rate which is the opposite of what I expected. I would consider increasing the florinef dose but Im having some rather distracting side effects (cough and feeling wired all the time, which I described in another long post).
  14. Florinef strange side effects

    Thanks for your response, Jan. I actually tried taking florinef in the morning once and had more trouble sleeping that night. When I take it at night, I take it right before falling asleep and then I seem to sleep through the worst of the jittery feelings. I actually have slept really well since starting it. I read that aldosterone peaks at 3am so maybe taking it around midnight isn't that far off. I definitely want to try to play with the dose a little but I'm not sure whether to go up or down first. My blood pressure hasn't gone up at all in the past 4 months of high salt /water diet and the last 1 month of florinef so I'm tempted to go up, but I don't want to worsen the side effects.
  15. Hi I am a newbie💛 ‘I have been using sound reducing headphones & hats/caps/visors. Overstimulated by car travel unless just a few miles. wow I am just figuring It all out. Ty for this post
  16. Help!

    Thanks for the response! I was seen by a Cardiologist on Friday 11/17/17 and he took all my information and gave me a diagnosis of POTS. He also referred me to the Autonomic Clinic and scheduled multiple tests (Cardiac Tilt Table, Hemodynamic testing, and an Echo). I was also prescribed a low-dose Beta Blocker. It's been such a long haul and my symptoms have gotten significantly worse over the past month. I'm so glad I took video of what happens with my heart rate so I could show the doctor. I've had an awful time with doctors that I'm almost conditioned to expect the worst, so it was fantastic to finally feel like I was/am being taken seriously! Obviously the diagnosis causes a conflict of good and bad reactions in me; I am so glad to finally feel understood and validated in the situation, and at the same time I am scared as **** about what my future holds. The uncertainty about whether it will continue to progress, even out or improve leaves me unsure of how to cope with the stress. To think I was doing really well during the summer of 2016 (I was running, working out 4 to 5 times per week, visiting friends in different states, able to work hard at my job...) and now in Fall/Winter 2017 I feel like I am a totally different person in almost every way (Can't think straight most of the time, pre-syncope multiple times each day, dizziness is constant, headaches, abdominal pain, constipation/diarrhea, food intolerance, can't sleep well ever, Brain fog, muscle twitches/spasms, cold hands and feet, tingling/numbing/odd sensations in my extremities, difficulty even standing for more than 10 or 15 minutes, and missing so much work that I am worried I will be unable to work in the foreseeable future...). Sorry to ramble on and on, this experience is just awful. I have been researching POTS and saw that the constant fluctuations in heart rate upon standing and sitting/lying down can cause spikes in Norepinephrine, which causes increased anxiety and a state of general hyper-arousal. That information helps me a lot as I have been agitated and have had a general feeling of dread which has increased exponentially over the past couple of months. I don't know how I'm going to get through this, but I will keep trying to plug along.
  17. New here!

    This may be helpful in terms of "what works" to address symptoms: https://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/ Here is the clinical definition of POTS: https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/
  18. Need advice please

    Thanks--yes I am so happy she is better too! Have you tried doing a search on the forum? This topic has ben discussed in the past. But those members may not be active on the forum anymore.
  19. New here!

    I do have the awful nighttime tachycardia and rotten sleep. The part about not actually seeing the neurologist resonates the most with me. I was excited to see a dysautonomia expert neurologist in Boston and waited almost a year... he required testing before I saw him and I didn't meet the criteria he wanted, so I never saw him and was ditched. What a feeling!! I thought he was going to help me. I have seen about 6 more doctors since then, and 3 have each put me on a different helpful medication. It's crazy but it's starting to finally work, I think! Hang in there, keep fighting. I don't feel good but it's a fair amount better than a few months ago. I'm on a similar regimen (midodrine and metoprolol plus lots of unrelated meds) with the addition of pyridostigmine just this week-it's helping.
  20. New here!

    Hi my name is Jessica and for the past 10 months I have been a observer of this website desperately looking for answers. Googling all my symptoms before I knew what in the world was going on with my body and usually something on this site would pop up. I suppose I will start with my lil story; in January of this year I had a SVT attack. I have had SVT attacks since my early 20’s but never one like this one. This one lasted longer and almost made me pass out. I was also very sweaty. Once it was over my heart wouldn’t go below 170 so I ended up calling 911. The docs didn’t know what was happening and they kept me in ICU over night. The next day the cardiologist decided to blame my high heart rate on my thyroid and placed me on Atenolol and sent me on my way. Long story short this WASNT my Thyroid. After dozens of different doctors visits, ER visits, even a heart ablation to fix the SVT to see if that helped anything my symptoms remained. Constant heart rate 120-130. Attacks of sinus rythym of 170-180 with impending doom and feeling horrible. The constant sweating of my palms and my feet. I finally was convinced I had dysautonomia and POTS and I think the SVT induced this. I did the at home version of HR check going from sitting to standing and I would go from 70 to 140. I begged my EP to refer me to a neurologist and he did, I waited 4 months for my appt with Dr. Cortez and I was oh so excited to pick her brain about this condition since she was the POTS specialist in Utah and the only doctor that would know anything about what I am going thru. Little did I know I would never get the chance to meet this doctor. Anyhoo, she did a chatocolomine blood test and my norepinephrine levels are slightly elevated at 729. She also did a tilt table test and my HR and BP went thru the roof! But since on minute 7 my body started going down and my heart went from 150 to 99 she said I didn’t fully meet the criteria for POTS and she refused to see me. I guess I am here because I am still so lost. I am still struggling everyday and I cannot seem to find a doctor to help me. How can I not fit criteria for POTS when my HR goes 30-40 beats faster everytime I get up? My Diastolic BP is also high 85-100. My biggest symptom right now however that is plaguing me is the attacks. Most nights after 2-3 hours of sleep I wake up in a sweat and tingling and my HR goes thru the roof. Doesn’t matter if I do deep breathing or anything, it goes off until it’s done. These attacks are starting to happen during the day and it’s causing me the worst anxiety which in turn only makes the attacks worse. Has anybody had any relief with these and if so, HOW? Is there a medication that specifically calms the SNS? My honest opinion is that I am having adrenaline rushes and since my norepinephrine is already high it’s like a volcano. Someone help!! ps I am currently taking 10-20mg of Propanolol 2x a day and midodrine 5mg 2-3 x a day per my cardiologist. Thank you for reading my novel. I look forward to being apart of this lil community and actually communicating with people who can relate!
  21. It's not really like dizziness, at least to me. I asked my PT today and she said sensory overload, highly sensitized to lights, noises, smells, visual patterns. So I'll try everything you all have suggested plus these. Thanks so much!
  22. POTS questions

    Thank you! And I hope things are getting better for you now. What kind of thing helps you the most? Thank you. I have no idea what my HR is walking around. Can't really walk a whole lot anymore and am looking into getting a wheelchair because of it. Struggle even walking around the house and can't go downstairs very easily (the walking issue is a POTS and EDS thing though so hoping if I get POTS under some kind of control then I can work on my EDS). Kind of embarrassing as a 23 year old. Will look into getting an electrophysiologist referral. They specialise in the autonomic system right? I did find a list of POTS specialists in the UK on a UK based POTS site. If the cardiologist that I get referred to first isn't helpful then I'll ask my GP to refer me to one of the POTS specialists listed here or on the other site. The person who diagnosed me no longer works within the NHS, and my mum wants to try and not go down the private route for POTS testing due to how expensive it will be. Having said that, the private place I have a referral to for my EDS does have an attached autonomic unit (Hospital of St. John and St. Elizabeth) so if the NHS route fails I know I have the autonomic unit to fall back on. Just don't currently have the money to go private for everything at the moment and would much rather not be so much of a burden on my parents. Thanks again!
  23. POTS questions

    You can of course keep good records, it won't hurt. I just meant don't stress out or make yourself sick doing it. We get a lot of posts in this forum from people asking about POTS. Usually I think maybe the person could have POTS, but what you describe seems pretty spot on. I think even an electrophysiologt would be concerned about an HR of 160 walking around - if you can't find a POTS specialist near you, that's who I would try to see. If you have a doctor who diagnosed you with EDS, that could be another person to ask, since many people have both POTS and EDS.
  24. Need advice please

    @MomtoGiuliana Thank you for your sweet reply. I'm so happy your friend is better now. I struggle with the decision to come off the valium and worry so much about getting those horrible adrenaline surges and overall hyper-stimulation at all times. I wish I could talk to someone who had dysautonomia before going through a benzo taper. Everyone I've found developed dysautonomia during or after their tapers. So upsetting...
  25. How about vertigo? Is it sort of like vertigo?
  26. Anyone in the uk ?

    I know it's appalling. I've bought my own too, it is a G-lite pro. It is lightweight and not too expensive and better quality than the NHS ones but you're right we shouldn't have to pay. The sad thing is if you've smoked, drank or eaten yourself half to death the NHS falls over itself to help. I hate being so bitter about the organisation I worked my whole life in but it's true.
  27. Anyone in the uk ?

    Hello, I'm a fellow UK POTS patient, I live in Scotland. I traveled to Newcastle to see Professor Newton for diagnosis but as I don't live in England that clinic wouldn't provide ongoing care so I am left with no care or treatment at all. I am trying to get a referral to the NHS autonomic clinic in London but funding issues make this difficult if you don't have an address/GP in England. I am a GP myself so have been fortunate to be able to try all applicable meds myself however none have helped - fludrocortisone was more vasoconstricting than volume enhancing for me so net effect same or even lower blood volume. I really wish we could get IV saline in the UK - if anyone has managed this I would love to know where and how!!!
  28. Need advice please

    So sorry you are having a difficult time. I have a friend, w/o dysautonomia, who has struggled with tapering as well. I know she is doing better now but it took well over a year and it was very difficult. The good news is she is off it now and much better.
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