katyroq

I'm wondering how those of you who have EDS got a genetic test or diagnosis. Do you have to see a geneticist, or could a GP refer you for the proper testing?

My mom and 3 sisters and I all have various different and mostly mild EDS/hypermobility symptoms, and I have POTS.  I'm curious if we might have EDS in the family. From what I understand, there isn't much that can be done for EDS treatment, and those are not my worst symptoms so I'm not looking for a doctor per se.  Mostly I'm wondering if my POTS is likely to just "go away" or if it may be a lifelong issue due to EDS. 

I was taking a multivitamin and a couple other vitamins that were in my records at the time I was prescribed florinef. 

I use Nuun and Banana Bag occasionally for convenience but I honestly can't tell if they help and they are expensive. I usually make my own electrolyte drink based on molar ratios of oral rehydration solution. It's easy to make, cheap, tastes good, and I can feel a positive effect if I drink at least 20 oz/day. It's similar to the recipe on the website Lily posted but here is what I do.

In 1 gal jug:

Fruit juice in an amount providing 100 g sugar. I use the non-frozen concentrate on the juice aisle and it comes to ~1/2 can per gal.  Very cheap. 

2 tsp sea salt

2 tsp salt substitute (KCl) 

Fill with water and refrigerate

It's also easy to scale the recipe which worked really well while I was traveling recently.  I mixed up a 1:1 ratio  of the salt and salt substitute and brought that with me. Then I just had to find some juice and add the right amount of it and the salts to my water bottle.  I even used juice from the free hotel breakfast so it didn't cost anything!  

I'm on florinef 0.1 mg and it's helped me a lot. I almost feel normal, or at least I able to tolerate normal activities such as working, standing in line, etc. I did have a lot of side effects initially but as others have said, starting slowly and also watching for drops in potassium helps. My potassium hasn't dropped below "normal" on a blood test but i have certainly felt the effects of it being lower than what I'm used to. I started eating a high potassium diet which helped. It has taken me about 2 months to get to the point where I feel only the positive effects and nothing negative (even without eating extra potassium), but within the first couple weeks I noticed improvement which is why I stuck with it.

Like you I read this site before starting and I'm glad I did. My Dr. never mentioned potassium issues and actually started me on 0.2 mg and never said to start low. Good luck! 

Bombsh3ll, that's very interesting about florinef potentiating effects of noradrenaline. It makes a lot of sense with my experience. Thankfully for me things have settled down after almost 2 months on florinef. My heart rate is still somewhat higher but the positive effects far outweigh any negatives from that. How long have you taken florinef in the past? 

I agree that it's dangerous to not monitor potassium. My Dr didn't say anything to me about it, but tested mine when I asked after 6 weeks on florinef.  It was 3.7 when in the past my potassium has always been 4.5. So clearly it's lower than normal which could cause some symptoms even if it's not clinically too low.  Interestingly I have been traveling for the last 2 weeks and haven't been too careful about eating tons of potassium, and I haven't had any episodes like what I thought were low potassium. So who knows. I think it's just taking a very long time for my body to adjust to this drug. 

Sorry to hear about your experience with your GP. I have not had the same experience, but it's good you got a referral to a cardiologist. I have had 2 cardiologists and both knew POTS. The first never mentioned it, but ordered a tilt table test. I figured it out after that and asked him about it. So don't be afraid to speak up and ask for the tilt table test. A cardiologist should be a good place to start, and will rule out any other heart issues that could be going on. Best of luck!

Thanks for the replies. I agree that my BP isn't low and my doctor definitely is not trying to raise it. Initially my main symptom was passing out, but a huge part of getting that under control was knowledge of my HR being high when standing or showering, etc. I don't have much dizziness to speak of. I was more curious as to a physiological explanation why taking florinef and salt would not increase BP and decrease HR. It just doesn't make sense based on what we know it does in the body. I know it's not a big deal, I am just trying to understand.

Altogether I do feel better on florinef. It has helped the headaches/nausea after being upright too long and also has made a big difference in my fatigue. Again, I have no idea why because my standing and exercising HR has gone up by about 20 bpm from what it used to be. I am very happy with how this has helped (seriously was wondering if I could ever have a full time career, and now I'm thinking much more optimistically!), but I am just thinking ahead to how to evaluate its effectiveness long term. I know exercise is the only "cure" for POTS, so ultimately that should be the criteria. Florinef makes me feel better on a daily basis but the increase in HR means I can't do the same intensity of workouts. So...I'm not sure if it is the best long-term solution.

Also, I have no idea which drug I would add if I were to add another. My main symptom is fatigue and my Dr. already said there is no medication for that...hence my surprise when florinef helped.

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). 

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. 

I read these forums regularly for information, but I can't find much on my particular response to Florinef, particularly a cough that I get. I also think that I am very sensitive to sub-clinical drops in potassium levels.  Anyone else relate?

I have had POTS for the past 3 years. The first doctor diagnosed it very quickly but said there was nothing that could be done. About 4 months ago, I started seeing a new Dr. who put me on salt and fluid loading, and rowing for exercise. That hasn't helped at all, so now I'm trying fludrocortisone.

6 weeks ago, I was prescribed 0.2 mg/day (split morning and night), but I started with half the dose after reading on here to start slowly. The first 2 days I got a strange cough, felt wired and got a TON done on very little sleep. I could not feel hunger or tiredness, but overall felt okay and went about my life. The third day was awful. Jittery like I'd had way too much caffeine, tightness in chest (couldn't take a deep breath), anxiety, pounding heart, tachycardia episodes when lying down, trembling, diarrhea, constant dry cough which led to more discomfort, pressure in upper chest/neck, and couldn't lie down due to the pressure in my head. The Dr had me go off of it for 2 days, and all the symptoms went away.

She started me again on 0.05 mg at bedtime only, which I took for 3 days, then upped it to 0.1 mg. Aside from some trouble sleeping and adrenaline rush feelings that went away after a few days, I didn't have many initial symptoms. I have the cough, and I feel slightly caffeinated at all times. I haven't read anything about a "stimulant" effect of florinef, but that is the most noticeable constant effect to me. I'm not complaining though. After a couple weeks I noticed that my heart rate was considerably higher than normal.  Walking across my college campus it's usually 100-120 bpm, but on florinef it's now 130-170s. Sometimes sitting in class it will shoot up to the 100s which is abnormally high. I haven't been able to push as hard with my rowing exercise either. Despite the high HR, I have been feeling quite good. I wake up with a rush of energy (which is awesome! even though it causes a hot flash), and overall have much more energy and stamina throughout the day. So I think it is helping. Or maybe that caffeine-like side effect is helping, haha.

One day after about 3 weeks of taking it, the cough got much more frequent, and the next day it was worse, my HR was higher, and the next day I started getting the bad symptoms similar to how I felt when I first started it (chest pressure, pounding heart, extremely jittery and anxious).  I was surprised as I seemed to be adjusting to the medication quite nicely.  Then I realized that I had been feeling so good for the last several days that I had stopped paying attention to eating salt/potassium/water and had also worked really long hours without a lot of sleep. So I rested for a day and ate a lot of potassium rich foods. Within a day I felt better and the cough was back down to a lesser frequency. 

So I think I was running low on potassium (which I know can be a side effect of florinef), and somehow the cough correlates to that. Perhaps its due to increased palpitations with low potassium? That's the only thing that makes sense to me (although I didn't have any typical muscle weakness or cramping caused by low potassium). Also, if I understand correctly, such heart-related effects of low potassium are fairly serious and result from dangerously low potassium levels. In that case I doubt that eating bananas and drinking coconut water could adequately help. Also, this most recent bout of bad cough and symptoms happened just a few days before my regularly scheduled cardiologist appointment. She tested my blood sodium and potassium levels and they were normal (but I was also feeling better by then). So I'm thinking I am just extremely sensitive to small changes in potassium or sodium/potassium/water balance.

Does this experience on Florinef resonate with anyone here? I really am at a loss to understand this because there is so much information on fludrocortisone out there, but none of it matches my experience. I haven't had any of the normal side effects (no weight gain, swelling, BP increase, headaches) but I am clearly experiencing some effects from the drug.  My doctor is not concerned about these side effects and I am not really either (aside from an upcoming trip where I'm wondering how in the world I can get enough potassium-rich foods while traveling). I am just wondering if anyone has a similar experience or can help me explain why these side effects would occur.

I have found some good foods include tomato juice or v8,  chicken broth, bagels, pretzels (high salt to carb ratio compared to other snack foods). I also add 1/8 to 1/4 tsp salt to a serving of watermelon and other fruit, tomatoes, oatmeal, broccoli, and chocolate (ice cream too!) . These foods can take a lot of salt without tasting salty. I usually eat a fairly low carb, low refined sugar diet (aside from a serving of pretzels every day...) and get 4000 to 6000 mg sodium daily without Gatorade, salt tabs, etc. 

Good luck, yogini!  Wishing you all the best.  I just finished week 3 and my POTS symptoms are much less and heart rate is down in general.  I haven't officially analyzed the HR data yet but I'm feeling good and getting my energy back which feels great! 

@ lewis, that's great to hear and makes me hopeful!  Did you try any reintroductions? 

Goodr189, interesting! I am probably eating fewer carbs in general so that could be helping me too. Complex carbs vs simple carbs makes a big difference in my POTS symptoms too . 

Sue1234,  yes I am planning to reintroduce foods slowly after I've completed a month. So I'll update with what happens then. 

Hey everyone I don't post often but i just wanted to share a huge breakthrough and what is helping me. I know there is some discussion here about diet-- gluten free, dairy free, ketogenic, etc. 

Whole30 is an elimination diet where you take out for 30 days most common foods that people are sensitive to. This includes all grains, dairy, soy, legumes, most vegetable oils, and sugar. After the 30 days,  you're a clean slate and can test out adding back different foods to see if you react to them. 

I started the diet a week ago and the first week isn't supposed to be very fun as your body detoxes and gets used to using slower burning fuel. My first week was not bad at all but i woke up on day 6 and noticed something amazing. I didnt feel deathly tired or that my heart was racing when I got up. I had energy throughout the day and promptly overdid it followed by only 7 hours of sleep that night. Even after all that it wasn't until the following evening that the old fatigue started creeping back in. I got a solid 9 hours of sleep which remedied that. Today I spent 3 hours on my feet cooking and my heart rate stayed around 100 when it would normally be in the 110s to 120s.

Something about this is really working! I'm cautiously hopeful but haven't had 3 consecutive days with this much energy in a long time. Maybe I have a food sensitivity that is causing or at least aggravating my POTS. 

Anyway, I wanted to share this and encourage those who can to give whole30 a try! I hope it may help someone else. 

I was wondering this same thing. What is a good target heart rate for us whose heart rates aren't normal? As in how do we know we are making progress and combating deconditioning?

I normally walk 20-30 minutes a day and my heart rate is in the 100-120s range. I don't feel like I'm getting a good workout at all, but even brisk walking won't get my HR much higher. I used to run a lot, so the other day I tried jogging for 15 minutes and my heart rate went up to 190 and stayed there the whole time. I felt fine, if a little out of shape...definitely nothing worrisome. But I don't like the idea of my heart rate being so high and i also do get very exhausted after running, so I'm probably overexerting myself.

So what is the correct zone to exercise in to condition myself but also not overdo it to the point of exhaustion? I have a feeling its in the 130 to 150 range but i haven't found an exercise that keeps me there. Maybe biking vigorously would give me a good workout, but since I'm not upright my HR won't be as high as jogging...?

Keep up the good work everyone! Lily that sounds like a tough albeit nontraditional workout! Shan1212 are the videos you do also cardio or more strength training? 

The last 2 days i have walked. 20 minutes Wednesday, HR about 120. Yesterday 40 minutes total, average HR 135. I am trying to walk every day for 20 min (or more), getting my heart rate up above standing hr (100 to 110).

Shan1212, I have never been able to chat while running either!  Even on long runs of 10+ miles I would huff and puff the entire time. Clearly its not an issue of being in shape...interesting. This also was several years before POTS.

I'll be interested to see what your HR does while exercising. Mine climbed steadily to 190 in the first 3 minutes jogging, so maybe i should try intervals of walking and slow jogging working up to a faster paced run like you do. I wonder if my HR will settle down as i get more in shape. 

Anyway didn't mean to get off topic. Maybe i should start a new thread about this.  But nice work on the interval workout

I just jogged 2 miles. And tilled my small vegatable garden

And i have a question: what is your heart rate when exercising? Mine is around 140 when walking but stayed around 190 when jogging today. I'm kind of surprised it was so high because I didn't feel particularly bad...just a bit out of shape.

I used to run marathons before running got too exhausting. This is my first run after months of just walking. I had never monitored my HR before so I have no idea if 190 is normal for me or high or it is just telling me I'm out of shape. I'm 30 so 190 is technically my max HR.

I have experimented a little and found a mixture that I like. In a 20 oz tumbler of water I add 1/4 to 1/2 tsp each of himalayan pink salt and salt substitute (potassium chloride), some fresh squeezed lemon juice, and some 100% grape juice concentrate. The juice I comes in a can on the juice aisle (not frozen). It has only natural sugar from fruit, and I can add as much or little as I want, though I try to use just enough to cut the salt/acid taste and give it a little flavor. I keep the concentrate in the fridge and a ~$1 can lasts a couple weeks, so it's cheap too. Best of luck finding an electrolyte drink that works for you

My POTS symptoms seem better when I don't get enough sleep. After diagnosis about 2 months ago I have let myself sleep as much as I want...9+ hours per night, except one day a week when I teach early & only get 6 or 7 hrs. Invariably my POTS symptoms arent as bad that day,even though I stand a lot and am teaching all day until 5:30. It does wear me out and take a day or so to recover but during the busy day I feel better. Could this have to do with adrenaline? One thing is I doubt I am dehydrated overnight as i am extremely thirsty and wake up to drink (and eliminate) water 2-3 times and sometimes consume 32 oz overnight.

I have ridges on my fingernails and white spots but I have had them as long as I can remember. My 3 sisters had them too growing up, but only 2 of us have dysautonomia.

Interesting! I did a whole30 about 3 years ago before I had many symptoms and it didn't seem to do much. But as a result since that time I have continued to eat about 80% compliant. Maybe I'll give it another go and see if it helps. Many people seem to be gluten or dairy sensitive so it could certainly help with that!

I recently discovered Kava Kava. I get it in herbal tea form and it really helps. I only use it occasionally if my anxiety seems disproportionate to the circumstances. Some sources say high doses may cause liver problems. It is the only herbal/vitamin remedy that has worked for me.

Anyone else have coughing fits when lying down or after stopping exercising? I get palpitations and coughing when my HR drops by a lot (maybe 30-50 bpm). Sometimes sitting down after walking, usually lying down in bed. When I used to run I would always cough when I finished a run and sat down. I am interested to know if its POTS or just normal me