bethanyh

Thank you for this advice, Katy, it is a great suggestion. Since I am supposed to start the Florinef this week I think I will stay on the Midodrine then after some time (a month or so) on the Florinef I will give your suggestion a try. You are right, I do not want to change anything else so I am able to better determine what the medication is doing. Thanks again!

I was on the Florinef for one week (breaking the tablets in half) but after two days of taking the Florinef, I had a terrible sore throat. I talked to my primary doctor who said to stop the Florinef and see if my body clears of any cold symptoms on its own then retry the Florinef. I will be starting it again this week. Fingers crossed!! I am still on the baby dose of Midodrine (2.5mg, 3x daily) and it does not seem to be doing anything at all to increase my BP. My primary wants to up my dose to .5mg 3x daily, however my cardiologist wants me to eventually wean off of Midodrine so he does not want to adjust the medication. Does anyone have advice on this? I have also read another thread that is asking about generic brands of Midodrine. I take the Mylan and it seems that many people have not found this brand effective for them. Could it be the brand or is it because of being on such a small dose??

Same here, Mike. I have a really hard time breathing and speaking if I have to raise my voice. I also have terrible chest pains (beyond my normal) if I need to raise my voice.

I am thinking about asking my doctor for another sleep test, though I am sure he will say that it is not justified based on his "normal" findings from my prior study. I like the idea of breathing exercises, I cannot sing at all anymore and at times even a normal conversation is hard because I get so out of breath.

I have this happen too, it started before my POTS was diagnosed. I also had a sleep study and some other testing done and was told everything was fine/normal. I wake multiple times in the night seemingly gasping for air but my doctor does not believe me or tells me that I must have been having a dream. Every single morning when I start to wake up for the day I will still dose off and on before getting up but when I am almost back to sleep I gasp, as if I have forgotten to breathe. I have a lot of trouble breathing throughout the day, I am constantly short of breath and there are times when I need to concentrate on my breathing to make sure I am inhaling and exhaling...it is crazy!

Afpayne, thanks for sharing, I will check out some of the recipes. I would be ecstatic if my BP numbers were that high! I definitely agree that one drug at a time is important so you know what it is/is not doing, that is one thing I like about my current cardio., he feels the same way.

What do you make your own electrolyte drinks from? I am curious about making my own instead of the expense of always buying something.

I cannot handle Gatorade due to the coloring so I drink Propel, which is made by the Gatorade company. There are two types of Propel that I drink. One is the vitamin water, which is clear but it flavored so it has artificial sweeteners. The other Propel is their brand new electrolyte water, which is unflavored and tastes like drinking straight saline (gross!). However, it seems to help for a short time with me. Sunshinegirl: do you mind me asking, what type of powder do you use?

I carry around a 32oz Nalgene bottle like it is part of my body I usually drink 2 Nalgene bottles of plain water a day (64oz) then a 16oz bottle of Propel or some other electrolyte drink. Some days I feel decent with that amount, other days I don't.

@dancer: Thank you for sharing your experience! I just stated the Florinef yesterday so I do not know what the next few weeks will bring but I am hopeful too! I am sure it is my body initially adjusting to the medicine but yesterday and today I have been really dizzy/lightheaded, I have been incredibly thirsty so I have been drinking tons of water, my BP is even lower than usual, and I have been in the bathroom multiple times every hour...I am assuming that is why my BP is lower. Sorry if that is too much info! I am hoping that over the next week or two things will even out.

I agree and it took me awhile to reach that conclusion. Before I was diagnosed, I had so many doctors tell me that I was making up my symptoms because no blood work or other tests would validate what I was conveying to them. My pastor gave me a great word of advice~doctors work for you, you are paying to see and be treated by them so you need to hire and fire doctors as you feel necessary. That has been my motto ever since! The medications are so confusing to me and I don't know what to expect or what is "normal". Then again, I suppose there is no normal!

Thanks Katybug. When I questioned my doctor he said he just did not like Midodrine, no reason beyond that. I am really hoping the combination of meds will work for me. Thank you for the encouragement to voice my preferences and opinions.

I was just diagnosed with POTS in January and have been taking Midodrine 2.5mg 3x daily since my diagnosis. I recently switched to a new cardiologist and he has prescribed Florinef 0.1mg, once daily as well as Potassium 10 meq once daily. However, he wants to slowly take me off of the Midodrine. I am not sure I want to stop taking Midodrine, as I feel that so many people have had positive results with it. My blood pressure is typically in the mid to high 90's/low to mid 60's, even on Midodrine. The Midodrine is such a low dose and my BP numbers are low so I am not sure why my cardiologist wants to take me off Midodrine instead of increasing the dosage. Does Florinef really bring blood volume up to the point that Midodrine is no longer needed? Today was my first day of taking Florinef and Potassium but due to being incredibly sensitive to medication (and failing on so many meds over the past year) I broke both of the tablets in half. I plan to take half a tablet of each for the rest of this week then next week take the full tablets of both. I am curious about some other people's experiences (positive, negative, side effects, etc.) with Florinef or a combination of Florinef and Midodrine. Thanks!

Yes, this happens to me. I feel like there is an immense amount of pressure in the back of my head and neck. I also have the sensation of a strong (and PAINFUL!) pulse in my neck on the left side with every breath, almost as if something needs to "pop". For me, it does not seem to matter what I do (eat, drink, move around) the feeling can last anywhere from minutes to an entire day. I asked my doctor about it but he does not seem to have any idea what might be happening.

I have my pain all day, every day with no rhyme or reason. It starts from the moment I wake up in the morning until I go to sleep at night. I often wake in the night with the pain. It is mostly in the center of my chest and left sided but it NEVER goes away. I have talked to every one of my doctors about it but they don't have any explanation for the pain. I have been seeing a pain management doctor for about three months now and no treatments he has suggested have worked, or I have not been able to tolerate the meds. he has suggested. I am planning to ask him about pain patches during my next appointment, I have heard they can be a good option. At times it is worse when I try to do too much or sometimes even move my body a certain way. My pain is coupled with shortness of breath on a daily basis and typically left arm tingling/numbness, jaw pain, back pain is included.

I am short (5'1"), have very small feet (size 3 in kids) and allergic to latex also so finding compression stockings is hard. I bought a pair of open toed the other day but then my toes turned a bright red/purple and felt smashed so I don't know that those will work for me either. I still have not gone beyond the 15-20 compression due to the amount of stomach pressure and "squeezing" I currently have. I have tried only two brands so far which might be part of my trouble. They are just so expensive to "trial" a pair to know if they work for me or not.

This is good to know. I just hope if I start on the Pindolol I can tolerate it!

I have a pair of generic waist high compression (15-20 mmHg) nylons but they drive me absolutely crazy! I feel like I am wearing sandpaper every day and they are so uncomfortable, especially at my waist. I just ordered a pair of Sigvaris thigh high 15-20 compression hoping that maybe the thigh will be enough and if it is not at least the comfort will be better so I can then order Sigvaris waist highs. I have not gone above the 15-20 compression so I don't know about how to factor that part in.

xRobin, thank you, this sounds so ridiculously cliché but I wish this were easier for all of us! My new cardiologist suggested a BB that would not have as much of a risk of lowering my BP, I think he said it was called Pindolol but I cannot remember the exact name. My BP is usually in the 90's/mid 50's when standing, lying down is probably mid to high 80's/50's. He also suggested starting me on Florinef, right now I am only taking Midodrine 2.5mg 3x daily so maybe adding the Florinef will raise my BP enough. I will just have to try it out and go from there!

I have had various workups completed, while in pain and without. The ER often has a hard time completing an EKG because of muscle tremors showing up on the EKG but they have never been overly concerned. I have been told by a few doctors that they do not believe the pain is coming from/due to a heart issue. I have a lot of palpitations and bigeminy (14% on a 24 hour Holtor) but even that does not seem to be problematic from the doctors' side of things. No treatment for the PVC's at this point, especially until my BP can come up to a level in which a beta-blocker would be a safe option.

Before the Morning and Batik: I tried some of the new Propel electrolyte water...it tastes like straight saline but I guess with the ingredient list that makes sense. I thought I would try adding something natural like strawberries or other fruit to cut the saline taste. This way it would have a better flavor without adding artificial sweeteners or too much acid.

xRobin: I am not at all happy that you are feeling this way but I am so glad that someone has posted about this topic. I feel like I am having a heart attack every single day and it is horrifying! On a daily basis I have severe chest pain, shortness of breath, palpitations (PVC's) with bigeminy, nausea, pain that travels into my back between my shoulder blades, and pain in my jaw...all signs of a heart attack. My BP is so low which means that I cannot tolerate beta-blockers well so I just have to deal with my symptoms. The concern/fear is very real and the physical sensations are a daily issue that I cannot escape from. It gets in my head that this time something is different, something is wrong and that exacerbates my anxiety as well, which of course turns into a vicious cycle. Several doctors have told me the same thing, "Go to the ER if it feels different". That is not helpful because every day is different! I completely agree with bellgirl, I do A LOT of praying because there is nothing I can do about my situation beyond what I am already doing! I wish you the best of luck!

I have had this sensation; it happens under my eyes and spans across both of my cheeks. I typically have a daily headache though, so that does not seem to accompany the tingling sensation.

Batik: What I heard about the Nuun was that it can cause unpleasant "side effects" such as diarrhea and in general, GI upset. Being so new to this whole POTS situation, I have no idea and every person will be different. I have heard positive and negatives about NUUN and I guess the best thing to do is just get some and try it. I have gastroparesis and my stomach is incredibly sensitive so I want to be careful about drinking anything that has artificial sweeteners, sugars, or other unnecessary ingredients. I am mainly curious about and looking for suggestions of what other people drink on a daily basis to help them.

Thank you for this information, Batik. Based on your suggestions, I am not sure which route to take now. I do drink coconut water on occasion but need a daily drink that offers sodium in addition to electrolytes but without the added sugars/sweeteners. From what I have read on other websites and heard from other people the Nuun is controversial as well. I am very new to all of this and there are so many items to sift through. I would have never guessed that I would need to question what type of water to drink!