stellaluna

I'm sorry I don't have suggestions on the food thing. I'm not sure I have noticed particular triggers other than too much of anything at one time. Though, my diet is a bit non-traditional. I have a few food allergies and am semi-vegetarian. I was surprised to read your doctor said don't drink water unless you really need it... From my doctor and from my reading & understanding ( my non-medical education that is) is that Florinef's action is dependent upon your body's intake of water and salt. Florinef is helping your body retain salt which is helping you retain fluid, increase blood pressure, etc....affecting other symptoms/effects. One doctor suggested 3 liters was too little for me (this was before I was on Florinef). I have found I cannot trust my thirst to get enough fluid in me or I will be behind on my water intake. I am still working outside the home and if I get busy and don't make a point to drink water throughout my day, I become more symptomatic. I tend to drink about 2 liters or so water plain and probably a third liter in 2 cups of coffee, juice, etc. I know we have to listen to what our doctors are instructing, I am just continually surprised (I shouldn't be...) at how many different medical approaches and philosophies there may be for specific situations. I know what you mean about finding kindred spirits here. When I came here the first time as the diagnosis was happening, it and the people here seemed to help everything make sense. It is so comforting to be able to vent or ask questions to a group of people that understands one's struggle. I hope you can find some tools here to make your day-to-day a bit easier.

Hello Darling (love saying that!) welcome! nauseous....yes. I am fairly newly diagnosed. I am only a few months into Florinef and only about 6 months into earnestly adding salt do diet. Salt, possibly the Florinef, and consistently keeping up with the water intake seems to make a marked decrease in my nausea. I cannot tolerate Gatorade, etc. I drink Smart water often though expensive and occasionally (once/twice per week) use an EmergenC (the regular kind--not the specific electrolyte one) as an electrolyte aid---it has LOTS of vitamins, minerals, etc. I am not measuring how much salt, just using often a salt shaker of pink himalayan salts on my meals. Yes, temperature is an issue often.

Yes, I feel like I want to/need to lay down if I eat too much/a big meal and a few times I have noticed an increase in bpm--will watch more often. I try to eat smaller meals but sometimes I wait too long and just feel I need to get calories in! I feel much better an hour or so after a big meal and if I am keeping up with my water as others have said. Your mention of rolling over in bed struck a chord with me. Since i've been wearing a Polar wrist monitor and sometimes look at the data or glance at my watch during insomnia, ----YES my tachycardia kicks in just from rolling over or switching positions in bed. I started .1 once per day Florinef (fludrocortisone about 8 weeks ago). At first I thought maybe I noticed a big diff. in heart rate. Now ... I'm not sure. There are so many factors in this dysautonomia puzzle. For me, Florinef may be helping with the dizziness and near syncope. Though, my walking-around heart rate still varies between 85-140. Since starting Florinef, the panic of pass -out feeling is near gone and I feel the urgency of needing to sit down less, though I do sit down more often as I assimilate to this "new normal". Since starting Florinef, my resting bpm has gone down. Laying down or sleeping it is between 48 and 95. I still see a huge jump in bpm especially if I am not drinking lots of water and eating salt & get up from sitting and sometimes even seemingly randomly as I try to figure out more triggers. I tried Propanololol (sp?) (Inderal) many years ago before diagnosis. I know many POTs people find it helpful but when I was on it (for Tacychardia and chest pain poss. related to MVProlapse) I eventually found it made me too tired though as I said this was pre-POTS diagnosis. As many with POTs, I have seen many doctors, PCP and cardiologists before settling with this decent one with POTs knowledge. I go back to him in a few weeks... we'll see.

Lavender oil may be poisonous if ingested. Please consult a doctor. I believe some people use it as an environmental spray such as on bed linens.

My heart soars for you!

Oh Josh, I feel your pain and frustration. What a slap in the face to read a "professional"'s report so obviously non-objective--the "agenda part" (I've been there too both with the "professionals" in front of me and reading words and my misquotes on charts and reports and placing judgement. Please don't give up the fight. If you don't have good medical professionals on your team, you have to be the sole advocate for your self. Obviously easier said than done. I know that everyone's insurance plan and medical financial situation is different--but... Each time I was met with difficulty recently, I moved on to a new doctor /facility. Unfortunately, this was fairly costly (with copays and deductibles). Even one of the "difficult" cardiologists who said after some battle "even if it is POTs, there's nothing I can do for you" and when I was tearful raised her voice at me and told me to stop crying, that wasn't helping and "stop thinking of myself as a sick person, I'm fine"---even this cardiologist did relent and give me the Tilt Table Test I pushed for (some cost out of pocket for me and ultimately a positiveTTT) I never went back to her after that. I finally have a good doctor who listens and has knowledge of dysautonomia and have begun the trial/error process of treating POTs symptoms ( he said the primary diagnosis is a rise of 30bpm upon rising). Best wishes in finding hope and a treatment plan and a good medical team, stellaluna

Thanks Kris4444 For some reason, since I started Florninef, I have not felt the need to take my regular allergy med -over the counter (though it is well past the season for outdoor allergens where I live- I still sometimes take it for indoors during winter). I may try taking it again and try an outdoor walk again and see what happens. I walked indoors for about 15min the other day and no symptoms-ofcourse the temperature was fine.

I know what you mean Faye. Every dr. appt, there is more info I feel I need to share to add to the puzzle to try to find peace or something. Wow.. That is a lot of info to digest and a lot I may have connections to. Sad that I haven't heard about this before but glad to have the information now. Thank you maybe I will take that to my pots dr. next time.

It happened again--so something going on. I hadn't read about mast cell before. Sounds like there may be some connection for me.. possibly. Explains some other things like occasional wheezing -not with exercise/virus, etc. (and never been diagnosed with asthma). Thanks katybug.

I was also on propranolol (not pindolol). I believe it is same class of beta blockers. I took propranolol many years before POTS diagnosis though for some same symptoms ( palpitations, heart rate, BP). The only side effect I noticed and recall is fatigue. I stayed on it for two stretches of a few years each. I am chemically sensitive and likely to react / have a side effect to EVERYTHING! I hope you find something helpful.

Oh yes. Hate getting up to use the bathroom. Will surely be up for a long time due to palpitations/heart rate. But can't go back to sleep if bladder full. Catch 22. Need water. Need to sleep. I have chest pain that comes and goes sometimes I can have a few weeks without any. But this is not new to me. I have had mild heart valve issue (whole life). My chest pain has changed and increased slightly with dysauthonomia issues in past year or two. I have many diff. types of chest pain some of which might be like what you are describing. Sometimes laying on one side vs. the other helps. Water helps...again the catch22! Worth mentioning to dr. next time you are in of course. If dr. says it is nothing then you may not have the adrenaline of worry that of course makes chest pain worse you know?

Before severity of symptoms last summer, I was walking nearly every day a few miles. Since ...I have only walked distances a handful of times. Today, I finally mustered the (something) to get out with a walking buddy. It was fairly cold and I my heart rate was ok and I lasted about 15 minutes. Halfway in, I noticed an odd sensation in my thighs--just the skin. At home, they were itching, burning and slightly painful but mostly it was the itching that was most bothersome. They were entirely red (only thigh-not lower leg or arm/hands), flat not splotchy and not hivey per say. It only lasted about 20 minutes after back in warm house and done walking. Wondering if this is dyautonomia related or if anyone ever has this weird thing happen in cold weather/ exercising? Now I guess I'm in the habit of wondering if EVERYTHING is related to POTS...

Thank you Ks42 for all your ideas. I cannot tolerate most commercial products like pedalite/gatorade --they make me nauseous or more nauseous than I am already but I have hope that some of these ideas might work for something other than the super-expensive smartwater I've only been able to handle.

I am so sorry to hear you are feeling this--what I mean is I understand I don't wish this on anyone. I wish there was a magic something that would make all the awfulness go away. I too would like to know if antidepressants help with POTS symptoms-would love to hear experiences. I recently (finally) saw a good POTS doctor who suggested an antidepressant because he said it sometimes helps with POTS symptoms. I was not ready to start one/add it to the mix as I am starting another med and want to be able to discern the effects and know what is helping/not before I try something else. Along the way, before my dysautonomia diagnosis I was misdiagnosed with MANY things one of which being depression. I have suffered/fought depression many years ago and know how it feels but I was adamant it was not depression a few years ago-- but told the DR. I would give the med a try. I felt like I was jumping out of my skin and did not last more than a few days. BUT one needs to find the right medication for the right person. I was misdiagnosed at the time and perhaps now a different antidepressant would help my POTS?? I have taken anti anxiety meds for years and now hard to say which came first the anxiety or the dysautonomia? I have been trying to watch, the anti anxiety med doesn't necessarily affect my heart rate but changes how I deal with it emotionally/mentally (OR not deal with it--try to go about my business...). I have sadly realized the ER is not what I thought it was (for myself and family members) at least in my part of the U.S. They try to treat simple things (ie-Kidney/UTI, dehydration)and/or stabilize conditions and then send you on your way with a referral to see a dr. on Monday or the next day. I had assumed you would see the cardiologist on staff, Urologist, etc. Ofcourse, they can do IVs, EEGs and often I have found helpful nurses but ... Oh, the crazy stories I could tell... Obviously the ER is there when I am at the end of my rope and you must go if you don't have a good doctor yet & to follow up if you have having issues with something like a spinal tap. Sad realization for me though--the ER is not what I thought... Evergreen, again I am so sorry you are feeling this way. If you are feeling hopeless, I urge you to see a doctor. Maybe medication would help? I often feel episodes of desperation and sadness; "side-effects" of chronic illness. Maybe a medication has a two-fold benefit for POTS patients if you find one that works for you. Best wishes, stellaluna

Faye, I'm sending you strength. Ditto on what dancer65 said. & Thank goodness for helpful family members and "the team work".

Interesting the arms thing, I often sleep with one arm under the pillow- another pillow also over my head with the other arm over the top pillow. Sometimes I have circulation/numbness & arm tingling issues with this but I will have to think/see if palpitations and racing may be related. (I got into that odd pillow habit in college to drown out dorm noise and now many years later a difficult habit to break...) Sleep... that elusive prize I often chased to no avail. I'm not sure I have answers... ( sometimes my PM Zanax will help me fall asleep but does not help me stay asleep all night... I recently started Florinef that appears to be lowering my heart rate and MAY be helping with the sleep wakes... fewer nights of waking every hour, we'll see if this is really a pattern....) I often wake to a racing heart or just randomly. I often wake at 2:oo/3:00 and will be awake for the day. What has worked for me: Instead of causing further stress and worrying about how little sleep I am getting and how difficult it will be facing the day, I just accept it and go with it. I stopped fighting the laying in bed for hours attempting to sleep as I once did. I just sit up/get up and do things. I know this may not be a solution for everyone. I don't have young kids/babies but I do face twenty-some children in my day job. Though everything I have ever read on insomnia in the past and have thought I knew was to stay on a schedule and try to go to sleep and wake at the same time approximately every day. Lately, I am going with what my body tells me and if my heart rate is low enough and I feel like I am drowsy, I try to sleep even if it is 7pm. Sometimes I am able to sleep 5 hours straight and maybe even go back to sleep for more which is amazing for me. I guess maybe water may help me too. I have been trying to sleep with a big smart water bottle next to me and often wake to wanting or needing that too. I've often had that awareness of heartbeat thing. Sometimes its more noticeable than other times. I always thought it was related to another condition I had but now when my heart rate is up its super-annoying. Calming music can be distracting & helpful.

I feel you. I am early in this dysautonomia diagnosis rollercoaster of emotions and physical issues but... As for myself, I am a very analytical person and I can admit controlling sometimes. I want to know what to expect. I want to know why. I want to know what I can do. That's what I guess is hardest about this illness; that there is no direct plan or path that I can expect for my specific body. As I try different things and start this med, I notice symptoms day to day and feelings and get caught up wondering what the cause is or is this the new normal, etc. I am caught between the contrasting ideas: that book (though the concept was not created by author) "The Secret" 's idea of manifestation and mind over matter and my perhaps pessimistic personality of always preparing for the worst (and mostly hoping for the best). In a panic of very low HR but normal BP yesterday all day, I came across a thread and people mentioning thoughts I try to keep in mind and like you said Faye, be thankful for the moments. For some reason, this past year AA mottos keep coming to mind (though I've never been involved--the past year the words kept coming up in diff situations, some so true and inspiring) "One day at a time" though for some of us, one hour or less is sometimes a better focus. I certainly have moments of breakdown and tears and desperation. I'm trying very hard to be present and focus on what I CAN do and what is still possible. I feel I'm rambling. This post is for me. Thanks for listening. I am so thankful for the kindred spirits on the other ends of computers here. I hope you have more good moments and more moments strung together Faye.

A good friend at work ( I don't trust others in general--I'm a friendly but guarded person but have connected to this person the past year or two...) gave me an unexpected holiday gift. I could cry thinking about it---a scarf...AND a pink Himalayan salt grinder. It means so much, the small gesture that shows that someone understands my needs/life even in a small way. I knew someone on here would understand and appreciate the little story...

I took my first dose of Florinef today...after many misfires and countless medical bills, I saw a great doctor from the physician list here. Wondering what experiences are with Florinef (good/bad and otherwise). Also, could I really be seeing positive effects already? I have had an awful few days with countless symptoms and HR as high as 14Os and low as 50s resting. This morning I was in 120s walking around the house. Now a few hours after dose I am at 90s. Hoping this continues... The pharmacy bottle says "may require refrigeration" but no other info. Does anyone keep it in the fridge?

I get this sometimes too Alma. It alarms me but I usually change positions and/or activities and the numbers (S/D) become further apart. I know what you mean about going to the doctor with too many issues or questions. I feel like I have to keep the doctor "focussed" on one or two things per visit or they get off track and I'm certain to get another misdiagnosis or "brushed off" or steered in the wrong direction again. Frustrating, but par for the course thus far. I am seeing a EP cardio I found rec. on dinet. hoping....

Thank you this made me smile today because I get it. (the join the traveling circus thing). Thank you for helping me find moments of amusement in this chaos.

I have some very small numb spots on my face that come and go occasionally diagnosed long before thoughts of POTS ---diagnosed as facial parathesia and my neurologist (after thorough testing) concluded it was part of my atypical migraines (along with arm numbness, visual issues, other...). Now I wonder...

Thanks for input. I am giving Polar300 a try. It does come with the chest strap on Amazon. Trying it out tomorrow.

In my experience with UTI in past 2 years (before POTs diagnosis though likely beginnings of lots of POTs symptoms...) I went back to dr. after 4 days or so if not experiencing improvement. I actually went to the 4th different antibiotic (ER injections & diagnosed kidney infection). I don't mean to scare you, but if an antibiotic is not giving relief for UTI specific symptoms, I would certainly at least call the dr./office if not go in if it was myself. Maybe the dr or office you saw gave you discharge instructions about how soon you should experience relief. Since then, I have had UTI symptoms but never enough white or red blood cells to treat as full-blown infection which makes me think it was POTs related (severe malaise, nausea/vomitting, increased urination, and other symptoms...) On a separate note, I am dealing with a rough cold/virus and having a hard time fighting it off and definitely increase in POTs symptoms. Maybe others have similar or diff. experiences....

Thanks Bigskyfam, I am also wondering about chest strap, hoping for the best... ANCY, Looking on Amazon, it's hard to tell, does the polar H7 chest strap come with the polar3oo or do you remember if you had to purchase it separately?