YolaInBlue

I had problems with Florinef the entire first month: blood pressure spikes, horrible headaches, strange pressure in my eyes. At the time, I was seeing a local doctor who said this is the only medication he's aware of for POTS, so I just needed to stick with it, but I might adjust the dose. I was started on 0.2mg at the hospital from the day of diagnosis, not gradually, and I think that was the main problem. If I knew what I know now, I would have started from 0.05mg, slowly increasing. I lowered the dose to 0.075 (half a pill in the morning, quarter in the afternoon) and was on that dose for several months, as it seemed like the best dose for me, keeping me hydrated, much less lightheaded without nasty side effects. I don't know how much it helps me now, but I cannot imagine pulling myself out of initial flare without it. It was either Florinef or IV fluids. Midodrine comes close second for me out of the meds I've tried.

If you decide to try Florinef again, please make sure to supplement potasium (I take 20meq) and possibly magnesium. When I was on initial dose I tested low on potassium.

For me, lightheadness, brain fog mostly happen when standing up or sitting. Tachycardia is worse. As for other symptoms, that list is long, I don't notice a relation to orthostatic posture.

I went for 4 sessions of biofeedback to a local therapist that was himself diagnosed with dysautonomia 8 years ago. He is off meds now and functioning at about 90%. I am amazed that I can actually slow down my heartbeat with breathing technique. So far tried 5 times when I got sudden tachycardia and it worked every time. The key for me was not to panic and run for bed, but stand still, put one hand on my stomach, one on the chest and breath slowly through the stomach, trying to relax. Raising temperature of my cold hands and feet takes longer but also almost 100% success. It never helped me with other symptoms, though. I plan on going for more sessions.

Khaarina, reading your posts, your symptoms look a lot like mine. Only I am not passing out. For several months I was able to build up to standing and taking evening walks without significant tachycardia, but that changed again for the worse about a month and a half ago, without any reason I can think of. I am shaky now, dizzy, tachy (biofeedback helps me sometimes with that), I have sudden jumps and falls in blood pressure, tingling and numbness in hands, shoulder and neck pain, bulging veins in feet and hands , nausea and sort of burping, head pressure, ear pressure, feeling hot with the exception of my very cold feet, not to mention the weird thing my pupils do, but that doesn't depend on orthostatic position. Brain fog is worse when standing. Some of this symptoms I get also when sitting or lying down, which seems strange for POTS, so I am trying to get an appointment for MCAS testing. Definitely all my symptoms are worse when standing. Standing and walking (when I can) leave me exhausted.

I will be looking into MCAS. I have many symptoms but haven't been tested yet. All those vials of blood to be drawn for the tests scared me a bit. I was doing better for a while but recently flared up and that motivates me to look for the cause of my dysautonomia and better treatments again.

I can't do fasting well. I was fasting for colonoscopy few months ago, but had to stop after 9 hours. I was tachy, vomiting, shaky and had a massive headache. For the second attempt my GI doctor put me in a hospital, on IV fluids with glucose. It was a little better, but still I had an awful headache (always get them with fasting) and stomach cramps. Now I tell doctors in advance that I can't do fasting without IV fluids. Also, they try to schedule me in the morning as a first patient. Maybe you can try that.

I get "you look good" from people that hardly know me or see me for the first time. My closest friends notice that I've changed a lot in a year. They told me that.

I am very pale, look tired most of the time, move slowly (I was very energetic before), lost my muscles (that hurts, I was a fitness instructor). During flare ups I loose weight, my hair falls out, my skin doesn't have a glow and is dry, dry eyes, dry lips, often dilated pupils (or just one). I don't see a healthy me looking in the mirror.

Sorry to hear about your experience.

I've been there many times, waiting months for appointments, with high hopes, only to come out disappointed. It is hard to find a doctor interested enough in this condition, and even if you find one, to come on his good day, when he is not tired or in a hurry. I know it can happen sometimes, doctors are human, too, but if you feel that lately he's not helping you, I agree with others, look for another doctor.

I am having a relapse now but it's not as scary as last year, when I got sick. I have doctors that listen to me, even though this condition is over their heads, they are trying to help and are not hesitant to write for tests or try new medications while I am waiting for Mayo appointment.

You need to find a doctor that will be interested in helping you. Don't give up on that. It is your life, you have to live with all the scary symptoms, not knowing what's going on.

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I got sick a year ago. I had some fainting and near fainting episodes for about a year, at 15, which went away on their own. Probably my ANS was always weak.

Hm, I only had to change watch battery once. The strap part has a pop lid for battery compartment, so it shouldn't be hard, I think.

I have been using Polar FT4 for 6 months now. Just changed battery for the first time recently. I use it on average 6-8 hours a day. You have an option to set your hr zone and have an alarm sound on or off. Even if it's off you can still check your max. and min. heart rates for the time you were using it. I don't pass out so I turn the sound off usually. It has a chest strap, which is not the most comfortable thing, especially that you have to wet the part where transmitter is before putting it on.

I have done some research before buying this hr monitor and found out that those with chest straps are the most accurate. The readings match my finger hr/o2 monitor.

Overall I like it. It is more convenient on outings than my finger hr monitor.

I can't take a whole tablet at time as well. I feel exactly as you describe. I take half and never on an empty stomach.

I try to avoid them in general and rather salt my food extra with sea or pink himalayan salt.

I am sorry to hear how hard things are for you. The way you deal with what life throws at you is truly inspirational. I hope for new treatment options available soon, that will make your life easier. It’s nice to have you on the forum.

I noticed for the last 3 weeks slowly loosing water weight despite drinking a lot of water and electrolytes and eating large ammounts of salt. My pupils were doing strange things at times: dialating unevenly, pulsating- enlarging and shrinking and I was waking up jittery and weak. My heart rate and BP only slightly elevated. I called my dysautonomia doctor but he is out of state. I increased my Florinef from 0.075 to 0.1. My blood pressure went up to about 122/85 but Iwas still dehydrating and my eyes doing strange things. I went to ER Monday night. They were very impressed with my pupils going crazy. They did basic blood panel, brain CT, EKG.

All normal. One good thing- I got a bag of IV fluids.

With my fluids in I was a little better on Tuesday. Yesterday morning I started peeing like crazy. My blood pressure still ok, heart rates elevated to 110-120 standing. I lost 4 lbs in 6 hours despite drinking 4 cups of water and 2 bottles of Pedialyte and taking 4 thermotabs. It got so bad I had trouble walking and standing. My body was jittery, I stopped sweating, pupils pulsating, stomach growling. I went to ER, to a hospital where they diagnosed me. Thankfuly they took me seriously, even though the doctor admitted that he doesn't know a thing about dysautonomia. They put me on IV fluids again and admitted me overnight. I have seen the doctor in charge last night. His idea is to increase Florineff and put me on beta blockers to decrease blood pressure. I was thinking maybe to try dessmopresin. Is there anything else I can try? Whatever I drink I just pee out. Only IV fluids seem to work. I am scared right now. I was doing quite well on my meds till 3 weeks ago.

Any ideas?

I drink 2-3 cups of tea a day without a problem. I make leafy black or green tea.

I can't have more than a sip of coffee, though. It makes me tachy and jittery.

My heart rate is controlled well with medication nowdays,but I have blood pressure drops throughout a day and moments of feelig dizzy, black dots in my eyes.

I don't see any difference on days I don't drink tea, so for me it doesn't have a possitive or negative effect.

Thanks Hanice. I will research that and ask my doctor about it next time I see her. It is not present all the time, I get it with my dysautonomia "episodes", which are overall milder than last year. Before they were dialating evenly during episodes. This is someting new, that I noticed twice so far.

My pupils dilated unevenly. First time I noticed 2 months ago, but the difference wasn't that big. Last Saturday I tried to read a book, but couldn't see anything with my right eye. After taking out and rinsing a contact lense twice, I looked in the mirror. My right pupil was huge and left one was normal size. It took around 7 hours for it to return to normal.

I looked really weird, took out the camera and snapped some pics. I showed them to my primary care doctor yesterday and she couldn't believe I haven't done anything to that eye.

It is possible that Florinef is not the best medication for you, but my start with it was also rough. I had horrible headaches and blood pressure spikes, and was still tachy with occasional episodes. In fact, my blood pressure was all over the place the first month on it. I was told by my doctor to decrease dose to half a pill (I was on 0.1mg) and increase back slowly. I went to 3/4 pill and a month into treatment everything finally stabilized. I'm staying on 3/4 still (0.075mg) after 9 months. It helped me a lot in the long run. I have whole days now without symptoms, as long as I avoid triggers, like heat. I can exercise on recumbent bike for 40 minutes a day and take 1 hour walks. I was bedridden for over 3 months, so this is a huge improvement for me. My other doctor added 2 more medications in January, but Florinef was the first big step.

I was told that Florinef is one of those meds that you need time to see if they work for you. I was also told at that time, that there is nothing else they can prescribe for me, so I felt like I had no choice but to give it time. First month was horrible though.

On the other hand, there are many people here for whom Florinef didn't work at all.

I've been living in Florida 12 years now and loving it until my dysautonomia started last summer. I wasn't sweating and couldn't go outside even for 10 minutes. My condition improved overall, but heat is still my major trigger. I'm good to 78F. At 79F I'm symptomatic. I'm stuck at home from 9 a.m. till 8p.m, thinking about moving somewhere cooler. I can't imagine another summer like that. If I have to go out I take midodrine, wear compression hose, cooling scarf and take a bottle of electrolyte drink with me. All those things help a little, but not completely.

I went to the beach with my family 2 weeks ago, in the morning, for just an hour and right after I came back home my eyes were hurting. I looked in the mirror and my pupils were dilated (and unevenly, right one was larger), I was lightheaded, tachy, thirsty and urinating frequently. It basically put me in bed for 2 days.

I'm working with biofeedback therapist right now, I hope that will help a little. I'll let you all know if it does.

10 months and I don't know the cause or type of dysautonomia I have. I have been able to eliminate some possible causes (adrenal tumors, pheo; brain, upper neck and spine check) and find medications that help me. I've spent a lot of money and time on doctors. I'm taking a break now and concentrating on finding alternative solutions to help my symptoms. I hope it doesn't get any worse, hopefully gets better and slowly I will find out.

Thank you for the article.

My ferritin was at 7, when I was diagnosed. I took iron for several months and was able to bring it up to normal. I stopped supplementing and within 2 months it went back down to 7. I'm taking 150mg of poly-iron a day, again.

I've built up exercise to 2 miles walking and 4 miles on recumbent bike on most days. On bad days I reduce or skip walking. I do light free weights and ab exercises twice a week. I used to work as a fitness instructor and did aerial silks before dysautonomia. I used to feel great after exercise. It's frustrating that I can do so little now and I feel so bad after my walks. My blood pressure drops, I always have to lie down. I was bedridden for over 3 months: from September until about Christmas of last year.

I had a rough start with Fludrocortisone, but in the long run it is the medication that helps me the most, apart from saline IV. For the first 2 weeks I had horrible migraines almost every day and big spikes in blood pressure. My heart rate was still quite high (120s-140s standing). I was told by my doctor that it takes time for Fludrocortisone to built up in the body and work as it's supposed to and to stick with it. After about a month and dose adjustment I started seeing improvement. I've been on it since October 2012. I take 0.075mg (3/4 pill) a day now. I haven't had a bad episode since January. I get migraines sometimes, but I had them like that for years. I don't get blood pressure spikes anymore. My blood pressure is more my normal: 95-105/60-70. I am more cautious now about triggers and I wear a heart rate monitor most of the time, take breaks when I see my heart rate climbing, but I probably would be still bedridden or at least house bound, if not for this medication. Since January I also take small doses (2.5mg or less) of Pindolol and Midodrine once or twice a day (depending on how I feel). Overall I think my treatment plan is good, but I I worry about side effects with long term use of Fludrocortisone. Also you need to monitor your potassium level while taking it. I take additional potassium and magnesium with it.

Mine goes up 10-15 beats while drinking and it takes about 3 minutes to go back down. I had it go up to 130 twice for about 30 seconds after drinking water while sitting, It felt like part of my heart was fluttering, really strange and scary, but was over quickly. I wear Polar heart rate monitor for most of the day, so I'm able to catch these things.

Congratulations! I'm happy to hear that he was able to attend the ceremony. This is a big step in his life and a moment of pride for a parent. So good that you both could participate in it.