fludrocortisone for your symptoms?

[brienh05]

I recently was diagnosed with dysautonomia and was first given metropylol(spelling) and my symptoms worsened so the cardiologist switched me to fludrocortisone. My question is were any of you given this and if so did it made your symptoms worse or what side effects did you experience?  I have sinus tachycardia and occasionally Have atrial tachycardia episodes. I'm 28 yr old female. I have noticed since changing I'm moody all the time very dizzy and pass out more frequently. Thanks!

[bean418]

Only asked because they told me it would be a montly bloodwork to keep check on certain things that can result from fludrocortisone/florinef.

Glad it is working for her.  Great news.

[CorieA]

She has had blood work done once but no one has said anything about the frequency.  

[bean418]

Does she have to get bloodwork often with being on that particular med?

[CorieA]

The dosage is .1 mg twice per day.  She started at once per day but that wasn't enough.  I don't believe there have been side effects.

[bean418]

That's great.  No weight gain or headaches from the medication?  What dosage did your child take?  

I am apprehensive because every medication I have been given puts me further back instead of forward so it is frustrating.

Thanks for your response.

[CorieA]

My 15 y.o. child has improved on fludrocortisone (increased b.p. and helped keep it steady, decreased dizziness and improved ability to exercise).  I don't think there have been side effects.

[bean418]

Sorry, I missed your response.

What other symptoms do you have?

My heartrate is just plain crazy.  Low 40's while sleeping but get woken by racing heart.  Daytime relaxed heartrate is in high 90's and will stay there.  Then the terrible fatigue kicks.  The explanation given to me was that people with low heartrate who get into the 90's is the same as "normal" people whose heartrate gets into 180's and it is scary for them.  So alot of drs. dx anxiety because all they see is our heartrate in the 90's without consideration and it is very high for us.  Took me 4 years to get a POTS dx.

How the heck do you consume 6-8 litres per day ??????  I thought 2-3 was difficult to do.

Nurse recently told me she thinks some of my problems could be coming from all the water I drink and it diluting my systems so need to drink gatorade and such as well.  I already consume 40oz of gatorade per day.

I was rx Toprol by a cardiologist and my PCP said NO!  When he did my most recent EKG I was upset because I am sick and tired of spending my time in drs. offices and still feeling bad so my heartrate should have been pretty high considering being so upset.  But, no it was only 50 and he said DO NOT take that medication.  

For the short time that I took Florinef/Fludrocortisone I didn't feel great on it....he said it would take two weeks to work.  Didn't give it that much time since TTS dr. said do salt tablets instead.

Are you still taking the fludrocortisone?  If so, how are you feeling?

[melanielange]

I "used" to have the classic POTS symptoms but the dr. who did my stress test totally missed them. Betablockers like atenolol, metoprolol and propranolol made my condition much worse, as they can lower your blood pressure. I was on the wrong meds for almost 2 yrs before my new doctor figured out that the problem was POTS. As I tapered off the betablockers, my heart rate stayed the same, but my energy increased a bit and I had much less fainting/dizzy spells. I've lost almost all of the 70+ lbs I put on while taking the betablockers and some of my other symptoms like excessive sweating decreased. For me, the dr. who diagnosed me didn't look any further into my tachycardia than prescribing betablockers. At one point I was taking 150 mg of metoprolol and it still didn't decrease my HR. I drink lots of fluids, on hot days 6-8 litres, consume more salt and these thyings have helped more than meds ever did. Compression stockings helped too. I bought a BP monitor to keep track of symptoms at home, which helps a lot.

[bean418]

Hello!

Did they dx you with POTS, NMH or something different.  

I have episodes that are quite concerning and my ENT and ENDO suggested an Electrophysiologist (EP).  After a major episode I landed in the ER again and admitted for 3 days for the regular battery of tests/scans.  To be release with an uncertainty.  My regular cardiologist suggested a repeat of Tilt Table Study.  But I decided to proceed with the appt. for the EP and get his opinion.  

That appt. he said take Florinef/Fludrocortisone, drink 2-3 litres per day and lots of salt.  After 7 days It gave me worsening migraines, more fatigue, moody, more shortness of breath, etc.

My PCP still wanted the Tilt Table Study so I decided to stop the Florinef and take the tilt table study.

I just got dx with POTS yesterday by the Tilt Table Study.  The first TTS I had was in 2012 and inconclusive but symptoms suggested orthostatic hypotension.  Symptoms persisted and progressively got worse however the medical field is to be desired when it comes to something they don't understand.

The cardiologist yesterday said take 2-3 litres day, salt tabs, tight bicycle pants from waist to ankles.  No jacuzzis or hot tubs, walking in early morning hours before heat or in mall where there is a/c.

What other instructions were you given?  What actual diagnosis were you given?

My understanding is that Dysautonomia is an umbrella term for many conditions.  

I had an injury to my neck which I personally believe is the cause of my situation since I had no prior symptoms.