Avatar universal

Dr. Suggesting POTS Diagnosis

I started taking Midodrine today, and am tapering off of the Fludrocortisone over the next three days.  In two weeks I will be tapering off of the Pindolol.  Can anyone tell me what to expect with the Midodrine?  How long it takes to start helping with constant lightheadedness, and any bad side effects to watch for?

My general practitioner and a Rheumatologist mentioned POTS this week.  I am concerned though that they are just going to treat the symptoms at this point instead of finding the underlying issue.  I have not been sent to see an Endocrinologist, but am thinking about making an appointment on my own.  I am trying to find someone here at Emory that specializes in this area of medicine.  It seems like with the children’s hospital here that there would be someone.

Also, has anyone had success with the thigh high compression stockings?  Living in Georgia is not a fun place to wear them, especially in the summer, but I am willing to try anything.
12 Responses
Avatar universal
Midrodrine made my son's scalp crawl but after a week or two it became less annoying.  Also, do not lay down while taking it, the one time my son did lay down he got chest pains.
2113262 tn?1346101921
I had the skin crawling as well on my scalp, I never knew it was from the midodrine but it probably was. I always felt like my head was asleep, like when you sit too long and your foot falls asleep.

The midodrine did little for my lightheadedness honestly, but I was also on a high does beta blocker which dropped my pressure even more. Hopefully it brings you some relief because it did not with me.
Avatar universal
CHRISTYDRAKE - thank you for the info.  Compared to the fludrocortisone, the midrodine side effects have been much easier to deal with.

DNP47 - are you still dealing with the lightheadedness, or were you able to get some relief?  I am hoping when I go off of the beta blocker it will help.  How long have you had symptoms?
2113262 tn?1346101921
I stopped my beta blocker a few weeks ago and I do feel less lightheaded then before, but its not completely gone yet. But since I have stopped the beta blocker and all the rest of my medications, I do still have symptoms that I had before.

I think the reason I am getting better is I have increased my fluids ten fold, increased my salt, and Im pregnant so my blood volume is naturally increasing about 30-40%. I may go back to being very symptomatic after the pregnancy is over. Hopefully not, but I have prepared myself for it.

Ive had symptoms for over a year, not long compared to most people on these boards.
Avatar universal
I don't think my symptoms are as bad as a lot of others to begin with.  I am still dealing with occassional blurry vision, burning pain and weakness in my legs, tremors, and lightheadness that is there unless I am lying down.  My symptoms started the week after Christmas.  I am seeing an eye doctor today about my vision, but I do hope the other symptoms will improve once I stop the Pindolol.  I notice a difference in my symptoms if I don't walk/jog daily.

Do you have any idea what caused your symptoms to start?
2078882 tn?1333486061
I have had good luck with the compression hose. I wear the 15-20mm, and have for almost two years, daily. When I was first measured for the hose, one calf was four inches larger than normal, and the other was three inches larger. I have gone in two years from a size large compression stocking to a size small. They definitely help if blood pooling in your legs is an issue.
That being said, summer is awful, because they are like wearing long johns. I buy them from amazon, and like the jobst brand, I also order the toe less kind..they dont seem as bad when my toes can breathe. ;P
I live in washington state, so I dont get the high heat and humidity that you do down south. The compression hose and increasing my fluids, and salt have helped me immensely. I have also been working on exercise intolerance and pushing myself to get in 10,000 steps a day... I usually only make 6000- 7000, but I am feeling better. That and pacing myself when it comes to activities. I am still not diagnosed and go to a new neurologist later today. Good luck!
Avatar universal
I am waiting to hear from someone at the hospital to order the compression hose, but may buy a backup pair through amazon.  Do you put them on before you get out of bed in the morning?  I am going to try that and drink 16+ ounces of water before getting up.  I have been doing pretty well with exercise and getting around, I am just lightheaded all of the time.  Good luck with the neurologist.  
2078882 tn?1333486061
Yes I do put the compression hose on first thing when I get up in the morning. I am glad you are doing well with exercise, that seems to be the hardest part of this disorder. I did not have good luck with the neurologist... he was very nice but doesnt know anything about POTS, so he suggested I go back to my GP and have him send me to a cardiologist... so I am just going to continue to do the best I can to manage my symptoms..after all I figured out what works for me without the help of the cardiologist or the GP... Let me know how the compression hose work for you! :)
Avatar universal
Sorry you are not having much luck with your doctors.  Hopefully you will not have to deal with this after you have your baby.  It is tough enough taking care of yourself and a baby when you are healthy.  Do you have any idea what might have caused your symptoms?

My GP and the specialists I have seen seem to at least be familiar with POTS.  The neurologist’s wife has been dealing with similar health issues, so it helps to be working with someone dealing with this from both sides.  Going on a gluten free diet helped her, so I am giving it a try.  I would like to know what triggered this in the first place, and if this is a long term issue, or something that will go away with time.  There is no one else in my family with low blood pressure, or anything like this.  I also want to know for my daughter’s sake.  I don’t want her to have to go through this one day.
2078882 tn?1333486061
I think you menat to comment to  DNP47... I am not expecting a baby... I m a grandma now :)
As far as the cause of my symptoms, my GP thought that I either had a blood clot or possible stroke, although they could not find either of those definitively... I also had a viral illness that was lengthy... I did try the gluten free diet for a while and did not notice any marked difference. I do try to avoid tyramine, and that seems to help a lot. Here is a link: http://www.fdnow.org/images/TyramineFreeList.pdf
Other than that small meals and dont get dehydrated.  I hope they find out what caused your symptoms and a treatment. I too am the only one in my family with low blood pressure, everyone else has high blood pressure. I worry too about my children or grandchildren and hope these issues are not hereditary.  
Avatar universal
Sorry for the confusion!  I am still looking for the yellow brick road so that I can get a brain from the wizard of oz.

Thank you for the info!
2078882 tn?1333486061
No worries, LOL that makes two of us :)
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