Finally Got A Treatment Plan: Questions About Medications?

[Synthem]

I'm sure some of these have been asked about before, but I scoured the search and first few pages without finding any topics directly about them (though if you know of a thread that covers this, feel free to link me, that'd do just fine!) Anyways— I had my second tilt table on Tuesday and finally got a treatment plan from my new doctor. He seems promising, so I've been optimistic so far. However today is my first day on the medication and I'm starting to have some doubts. I figure there's a good deal of you who've been on this at least once, so I'm curious what y'alls experience was (especially those of you had side effects.) I'm specifically interested in whether anyone experienced increased HR on Flourinef (fludrocortisone.) I'm only on day one, but my heart rate has been high. Unusually high, even for me; along with some other not completely unfamiliar but strange sudden symptoms. I'm waiting to see whether it persists or gets worse, but it got me thinking about what the side effects others have experienced might be. Because I know they give you a list of "possible side effects," but I know that I'm not the only person out there who reacts unpredictably to medications.

I'm supposed to start taking propranolol in a week. I've never had much success with the -lol family; they've been known to give me asthma like symptoms and make me suddenly and severely depressed— the thing that made my previous doctor bail. He wasn't "comfortable treating me anymore, given the unusual reactions I had to the beta blockers." So that leads me to question number three: did anyone have unusual behavior / depression / suicidal thoughts with nadolol?

So.

1. What strange and unusual side effects did you have on fludrocortisone?

2. Did you have increased HR on fludrocortisone?

3. Did you have unusual behavior / depression / suicidal thoughts with nadolol?

My doctors and even my family thought that was crazy (the depression with nadolol) so, while I wouldn't wish that kind of scary reaction on anyone, it would soothe my mind SO MUCH to know that I'm not the only person out there that had that and it's an actual thing.

I love my new doctor and I trust him fully, but I also trust my gut and how I feel so I always try to at least be aware of what's going on, stay informed, and be on the look out for side effects. Because you never know, you know?

[YolaInBlue]

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.

[Guest Alex]

1. What strange and unusual side effects did you have on fludrocortisone? My periods were messed up pretty badly - took me a year to convince my dr it was the florinef. Now I'm off it and things are back to normal. I also experienced headaches and frequent spikes in BP from taking florinef.

2. Did you have increased HR on fludrocortisone? No.

3. Did you have unusual behavior / depression / suicidal thoughts with nadolol? Never been on nadolol, but have tired 3 different beta blockers in the past (metoprolol for 1 week, bisoprolol for about 5 months, propranolol for 15 months) - my dr considered unusual the fact that metoprolol and propranolol (these 2 cross the blood brain barrier) I had sleeping issues - insomnia, disturbed circadian rhythm, vivid dreams, even nightmares. I did experience some depression while on beta blockers but I was on several other meds at that time and I think those may have been responsible for that. I believe depression is listed as a potential side effect of betas.

Best of luck and welcome to dinet.

Alex

[looneymom]

It may take some time for your body to adjust to the fludrocortisone. My son's blood pressure was very low before he started this medication. I'm not sure about side effects but I'm am thinking it may be making some things worse for him. My son has an appointment with his cardiologist next week and this medication will be discussed. His heart rate did increase some but not enough to concern the doctor.

[Synthem]

YolanInBlue,

Wow! I'm glad to hear it worked out so well for you. I feel like the general consensus here is that Flourinef can be a real pain for the first few weeks, so hopefully things will settle down and start working well for me, too! I think the sudden drop in potassium might be the culprit here, actually, because I just ate a ton this morning and I don't seem to be feeling so bad. Thanks for the input!

Alex74alex,

Oh dang. It seems the whole BP spike and headache thing is pretty common, but I've never heard of it affecting someone's cycle. And what you said about the beta blockers seems to be my experience so far, too. I had the craziest nightmares and it completely destroyed my sleep schedule. Nice to know that's not unheard of, although it royally ***** for anyone else who has that same reaction. Also, thanks! I'm so glad to be here.

Looneymom,

Yeah. Part of me wonders that if it's just rough for the first month or so because of the sudden change. I know some medications I've taken, even the ones that worked for me at the time, almost seemed to shock my system at first (for lack of a better description.) Doubt it's that simple though.

I hope everything works out for your son!

[E Soskis]

Beta blockers are used for a variety of conditions: migraines, blood pressure control, stage-fright, excessive social anxiety, cardiac arrhythmia suppression, and for strengthening the cardiovascular system and heartbeat. I remember in nursing school, we were taught to be very careful with beta blockers and patients that have asthma. Apparently, an asthma attack can be triggered by beta blockers in certain people who take certain asthma drugs. I would imagine that considering the wide-variety of usages for beta blockers on different types of conditions, there are many varying and unusual side-effects along with certain tolerance issues. I mean, if a professional piano performer takes low dose beta blockers to keep their hands from sweating so much, then that person may have a different side effect that someone who takes a beta blocker for say, blood pressure control. I have been on beta blockers for many years and have relatively few side effects. I have noticed it enhances the dry mouth I already experience from dysautonomia. At times, I want to blame some of my fatigue on the beta blocker even though dysautonomia is known to cause excessive fatigue. I would say keep an active list of the various symptoms you experience while on medications and make notations of changes when your dosages and medications are changed - it will help your physician and you pin down which medication is causing which symptom(s).