Balancing medications, bp and heart rate

[DizzyGirls]

My daughter's heart rate and bp has been somewhat erratic the last couple of weeks and I think it's because of an increase in her neurontin and an addition of another medication.  She takes 0.1mg of Florinef in the morning.  How do you manage to keep bp and heart rate at a good level when medications make it wonky?  Here's a few of her current random readings as of late:  100/69 hr. 112 while sitting.  A few minutes later she stood and it was 84/58 hr. 154.  A couple of nights ago it was 89/64 hr. 113 while sitting, a few minutes later while standing it was 83/65, hr. 140.  The last couple of weeks have been a real mish mash of combinations.  She tried propanolol for a bit, but stopped it because she started to have this bp fluctuation when she stood.  It was great for her heart rate as long as she was sitting.  Any thoughts?

[Katybug]

Her BP is so low that her body might be raising her HR even more trying to compensate for the low BP. If it was me, I would talk to the doc about stabilizing my BP to see how that affects the HR and the symptoms. In fact, I did just have this conversation with the endocrinologist. During my follow up we were discussing the fact that I've been struggling through this summer with even basic tasks. My BP which has been increased and stable in the 115-125/70-85 range, had been decreasing again during the weeks I was struggling getting down in the 100/70 range. (My BP was even lower when we started this journey...similar to your daughter's and sometimes lower.) But, my sweet spot for my BP is within a few points of 115/80.  My other symptoms were flared too so the endo had me double my steroid doses for the last 4 days. Sure enough, everything is better, except my HR. My BP is up 10-15 points.So, even though my HR has not stayed down upon standing, my stamina to do chores/errands and dizziness are much better because my BP is more appropriate and stabilized again. Don't ask me what we are treating exactly with the steroids because we don't exactly know. The endo thinks I have sluggish adrenals but not full blown Addison's disease. We just know that tinkering with the steroids works for me. So my long-winded point is that finding an answer for a more appropriate BP might (who knows) be as important to dealing with the symptoms as bringing the HR down. I actually had a doctor's appt and weeded 2 flower beds when I got home today...that wouldn't have happened a week ago.

[DizzyGirls]

Hi Katybug!

You know, funny you should mention your endocrinologist.  My mom was just referred to one.  She's not happy about another doctor appointment, but, showing my excitement, she said 'I knew you'd be excited'.  We had just had a conversation a couple of weeks ago and I had said maybe an endocrinologist might be in order.  It seems a lot of POTS issues are related to adrenaline, hence the endocrinologist.  It seems my mom's pituitary gland is not functioning.  We highly suspect she has EDS and Dysautonomia also. 

Anyway, I think I have figured that my daughter's issues are medication related, but for the time being she needs these meds.  I'm thumbing through my brain wondering which doctor to approach about this.  Her PCP doesn't like her being on the Florinef (obviously doesn't understand POTS) and I'm think that a bump up in that might do the trick.  She's got a headache doctor (a neurologist who, unbeknownst to me, wrote a med. journal article on POTS, so he does get it), but we just met him, and then she's going to a new rheumatologist on Thursday.  Probably not her.  I guess my confusion is that we've got several different doctors prescribing her meds.  Possibly her ped. neuro who had originally prescribed her Florinef???  Last time we were there, though, he said that I frustrated him.  So, you can see my dilemma.  Which one would you choose?

p.s.  So glad that you were able to go to a doctor appointment and do some gardening in the same day!!  It gives me hope because I know that you struggle with a lot of the same things my daughter does. 

[Katybug]

I don't know your docs so it's hard to say. I went to the endo as a follow up assuming that's all we were doing and walked out with a plan to make me feel better. Because I don't think POTS when I think endo, I hadn't really expected that. But, he is the most "let's try it, what have we got to lose, must get you a better quality of life" on my team (actually they all are but he's maybe most aggressive about that.) So, my lesson was....tell them all and maybe one of them will have the light bulb moment and prescribe the thing that works.

[yogini]

It sounds like your daughter is having common orthostatic reactions. Her BP is dropping and her HR is increasing  when she stands. It might be the dysautonomia that's doing this and not the medications - maybe she hasn't found the right treatment yet. Does she wear compression hose?

[DizzyGirls]

Katybug - I think you're right.  Think I will tell them all and see which one has that lightbulb moment!

Yogini - She does have compression socks and wears them some.  Sometimes it helps, most times it doesn't.  The problem is that she has a couple of ingrown toe nails and they squeeze her toes.  I need to get her some without toes.  Right now, she is having an issue with her skin burning.  We think it's nerves, mostly her hands and feet and so it's very uncomfortable for anything to touch them.  The neurontin has been helping with that, but it got bad last night.  We have an appointment with a rheumatologist tomorrow morning as we think she might have Lupus.  She has a lot of symptoms.  That being said, I do know that people with autoimmune diseases also experience Dysautonomia.  This recent "flare" of whatever-this-is could also be wreaking havoc with her POTS.  There's so much going on it's really hard to separate them. 

Thank you both for your help.  Sometimes it's hard to see the forest through the trees!

[yogini]

Yes, it's not easy to figure out, especially when there are multiple conditions and meds. Hang in there and keep us posted.