Good Days, Then Bad Days - Getting Used To Medicine?

[thericky]

I'm writing about my wife Michelle's current condition with POTS, which has gone from bad to worse to good to bad.

Previous posts (for those who want more detail on her past):

http://dinet.ipbhost.com/index.php?showtopic=12348

http://dinet.ipbhost.com/index.php?showtopic=11838

She recently found the combination of Florinef, Midodrine, Cymbalta, and Toprol XL gave her the ability to leave the house and do things (other than visit a doctor) for the first time in around 2 years. It was a wonderful week or so where her heart rate was consistently in the 80s and blood pressure was mostly normal. Heat still triggered minor POTS episodes, but nothing major. This all happened within a few days of getting back on Toprol after being off of it for several months.

Unfortunately, that period has vanished and now she seems to be back into heart rates of 120+ and blood pressure is high.

Questions:

1. Does it sound like her body got used to the Toprol or one of the other medicines and it's no longer working? Has anyone else become accustomed to a working medication to the point where it no longer worked?

2. Since feeling worse, she hasn't been consistently taking her Midodrine as her blood pressure is now high and doesn't want to make it even higher by taking it. But I wonder if a consistent dose of Midodrine is what was helping in making her feel normal? Or does that not make sense?

3. What would you recommend we do now? Trying a different beta blocker is just about the only thing we can think of.

Thanks,

Ricky

[arizona girl]

Hi ricky, I understand the struggle. I don't have answers for myself yet and still am waiting to have more tests done, but I do have some experience with the beta's

After trying 4 different beta's, we finally realized that they only lower my heart rate and actually raise my blood pressure. Even at a much higher dose of 60mg xr inderal, it only took about a week for me to overcome it and once again have orthostatic hypertension. The high dose caused me to gain 12 pound in 6 weeks and made me have a constant headache and turned me into a zombie. My doc and I haven't figured out what to do next yet.

Sorry I don't have any answers for you, but your wife isn't the only one here that is having this kind of response.

I also did the salt loading and compression hoses and they didn't seem to bring any improvement either. I haven't tried the Florinef, Midodrine, Cymbalta because they can make your BP higher and mine is always high when I'm standing and when I talk.

Does your wife's BP and HR also drop a lot when she lays down? I actually wake up sometimes because my heart is in the low 50s/high 40's and my BP will be like 90/60.

I'm in the process of being sent to Dr. Grubb, I'm hoping he will be able to help. Don't give up yet! I'm hopeful that we are going to figure this out someday and that there are others on here that have similar symptoms to me. That means I'm not making it up and I'm not the only one going thru this ordeal. Hang in there, it is so nice how you are trying to help your wife, this has been hard on my husband, and he really just doesn't know how to help me.

[thericky]

Michelle was on Toprol only for a long time and doing okay. She wasn't well enough to go out and do things but she could function around the house. Then a hospital visit prompted he to try some new medications. After piling on Florinef, Midodrine, and Cymbalta with some success, we figured adding Toprol back in might make it all work. And it did... for a week or so. Now it's back to craziness.

What's weird is that her blood pressure was actually low for a while, which is why she's on Midodrine. But now her blood pressure is high, presumably from taking too many medications that raise it. But we're not sure which one to drop or alter the dosage of. Too many variables!

She doesn't have any problems when lying down. While she's not supposed lie down on Midodrine because it will make her blood pressure skyrocket, when she's off of it at night and lays down for bed, she feels fine. Whenever she's feeling bad, lying down usually does the trick.

Her next doctor's appointment isn't for a couple of weeks, so we'll probably play with the dosages between now and then (we have the doctor's permission to do so, within reason). Then if nothing works, maybe we'll try a different beta blocker and/or cease one of the other medicines to try to bring her blood pressure and heart rate back down.

[iheartcats]

I finally was put on Midodrine, Inderal (BB), and Mestinon. Together they were helping enough to get me to function and feel just 'ok' for having POTS.

I tried a higher dose of Mestinon the other day and that backfired horribly. But now that I'm completely off the Mestinon I am feeling worse with higher heart rates so my doctor wants me back on the OLD dose of Mestinon. My pharmacy won't have it until Saturday, of course! Not a common medication, I guess.

I was told it usually takes a while to build up a tolerance to a BB and that you can take a 'break' for a few days (I think the doctor said it was a drug holiday or something) or if you're on a low dose raise it modestly. But I haven't had to do that yet and he said many people have to be on BBs for YEARS so this is fairly common to deal with. We'll see...my dose is still ok. You can ask about that or about trying something new.

What is the worst problem that is causing your wife not to function? Do you think the HR is what's bothering most at this point?

My doctor said my Midodrine can be varied a bit, as needed, for me so you may want to talk to them about that. I'm living with a bit higher BP overall to feel better. I've actually quit taking my BP i as much unless I'm feeling really off, but I was told not to worry about anything below 140/95 for ME. You will have to work with you doctor to see what's right for her as POTS is so bizarre. I think with my BB + Midodrine, my BP is behaving better than it used to!

I do feel I've had to compromise on some aspects of my health to function, but it's a choice I had to make. And a lot of trial and error so you'll really want to make a list of questions to bring the doctor and work on a plan...plan a to try this, plan b to try this, plan c to try this. I had to do that to get a bit better. It's frustrating, I know!

[ramakentesh]

Because the medicatipons currently prescribed for POTS attempt to treat the symptoms and not the cause, we tend to develop tolerance to them and they stop working. Happens for me as well other than beta blockers.

[janiedelite]

I did alright on 0.05mg of florinef twice a day for several months. I was still pretty symptomatic, though, so we increased my dose to 0.1mg twice a day. It took about a month but then I began feeling sicker than ever from high blood pressure (headache, chest pain mostly). It's tough when you are desperate and I understand why your wife started so many new meds at a time. Keep trying to find the right combination for her. I hope she starts feeling better soon!

[arizona girl]

Ricky I too always feel better when I get off my feet, but my bp will still drop pretty quick and then I get hypotensive during sleep.

Does your wife check her bp when she wakes up, before she moves around? That will give her a baseline to be able to see where she goes from there during the day.

Though I don't know how to treat my OI yet, I do think paying real close attention to your position, activity and what meds you are on when, will help flush it all out. I agree that she sure was put on a lot of meds at the same time, which makes it real hard to determine which one is doing what.

Since you are experimenting, maybe you could pick the one you think is most helpful and take only that for a week, then add the others back in one at a time. Make notes of how she feels and symptoms noting the time, activity and position and of course the med.

This was how I figured out that after 4 different beta's that they were actually making my hypertension worse. This is a documented response possibility know by the drug makers. My nurse assigned to me by my health plan, told me "oh yes that can happen with beta's, they can cause worse hypertension".

So if your wife is primarily hypertension and tachy, like me the beta's might not be the best choice. Until we figure out what to try next, I do have 10 mg of inderal to knock my heart rate down if it gets real bad, I've found that even 5mg will work to do this. But, I will get rebound hypertension when I do take it. Interestingly 2 muscle relaxers, flexeril and tizinidine do the same thing to me.

hope this helps

[thericky]

It's definitely the heart rate that is her worst problem. Without medicine, it races as if she just ran a marathon. It pounds, gives her headaches and chest pain, and ultimately exhausts her very quickly. High blood pressure also gives her an overall throbbing sensation.

She checks her BP and HR regularly throughout every day... after getting up, before and after activities, before bed. For the last few days, both have been higher than in a while.

Good idea to go back to the beginning and try to figure out which medicines are doing what by slowly adding them. It would be nice to know exactly how each helps her so we could tweak the dosages.

We've considered doubling her Toprol dosage as she used to be on twice as much as she is now.

[arizona girl]

Toporol is a beta, right? She also gets the hypertension on standing, right? If so, that is what happens to me, as well. The beta's make my hypertension worse and the higher dose of inderal made me really sick, I had the worst constant headache from it. So, I'd really be careful if that's a beta. The hypertensions worse since she started the toporol, right? There is your answer, if that is true.

Until we figure out what to try next, I do have low dose inderal short acting, to take when the heart rate is really bad and I know I'm going to have to be on my feet. As little as 5 mg will knock my hr down. I don't like taking it if I'm feeling bad and I'm going to be in bed most of the day, because as your wife probably knows, we feel better when we are laying down, because hr and bp come down to everyone's else's normal or lower. Also I have metabolic syndrome i.e. insulin resistance and the beta's also make that worse. I gained 12 pounds in 6 weeks from the higher doses of inderal. Got off that and my weight is already starting to drop.

I see you said she checks her bp thru out the day. You didn't say if she checks it upon waking, while still, still in bed, before she starts moving around a lot in the bed. Have her check it right upon waking, even if it's in the middle of the night. That was how I found out I was also having hypotention when I sleep. My sleep is almost never refreshing.

I too can tell when bp is up I start feeling real jittery and flu like and my high heart rate makes me feel very fatigued.

If you do try to go backwards and do the add back with the meds, just make sure they can be stopped suddenly without side effects. I know once you've been on a beta for a while, you have to wean down to get off of it, because you'll get real sick if you stop suddenly.

I will let you know if we find something that helps me, since your wife and I seem to be presenting in a similar manner. I just don't even have the answer for myself yet.

It is so nice she has you, trying to help her figure it out.