bi-polar and POTS

[Weney3777]

Ugh! I've been on provigil for the last couple of months, and have felt better than I have in a year and a half. Then, I realize that getting up at 4:30 in the morning is NOT a norm for me. I stopped the provigil for a couple of days and BAM!, I feel awful again. Now I'm wondering, have I been manic(I am bi-polar)? Is this just the chronic fatigue again? My BP goes up when I'm on the provigil and I don't even take my midodrine. I'm just confused about my health and wish I could feel "normal" again. This being sick all the time is really getting old. Is anyone else out there having trouble balancing psych meds with Dysautonomia medication?

[Weney3777]

I agree with the doctors communicating. I'll get busy on that right away. Thanks, everyone, for your input. :-)

[Heiferly]

I used a pill cutter to cut the 200 mg pills into quarters.  I started with 50 mg (1/4 of 200 mg pill) and took just 50 mg a day until it seemed like I wasn't having much side effects at all from that.  We didn't have any time schedule planned out in advance, nor did we set in stone what dosage I would go up to--they left it up to me to listen to my body to know what I could tolerate by seeing how my symptoms felt.  (Though we knew 200 would be the max we would aim for if we ever got to that, and that we were trying to take it S-L-O-W.)  Once I felt okay on 50 mg, I went up to 100 mg a day, but in two separate doses: 50 mg when I woke up, and the other 50 about 4 hours later.  After that we did 150 mg:  100 mg upon awakening and 50 mg about 4 hours later.  Finally I worked my way up to 200 mg, taken 1/2 and 1/2, 4 hours apart.  I'm now able to take all 200 mg in one dose in the morning.  A couple of times during the slow taper I would step up the dose and start having side effects and have to back down for a while longer and try again after a few more days.  I had to go off the provigil for some medical tests, so I've had to do this taper on process twice now, and both times it took me about a month to get up to 200 mg, but I'm sure that varies from person to person.  Many people with narcolepsy do take 400 mg of Provigil/day (usually divided into two doses), so it's not unheard of to take that much, but you have to listen to your body.  If it seems like too much of a good thing, let your docs know.  Maybe if you do a slow taper you can really get a feel for what is the right stopping point for you to find your ideal dosage to maximize the benefit you get from it before you hit that tipping point where side effects start emerging.  

As for your psychiatrist, I agree that it's unfortunate that he has such a lack of understanding.  I hope that if you bring him some information or have your cardiologist send him a letter it might help him be better informed.  

[Sonisingh2134]

HI, i'm 20 years old and have been diagnosed with POTS for a year now. I also have panic disorder. I get the same symptoms as u do in the morning. NO U R NOT HAVING A PANIC ATTACK. It is common in the morning time to get racing tachycardia, i get it every morning. My doc said it is all because of the POTS and our blood pressure is like trying to wake us up in the morning so we dont feel fatigue. In the morning ur adrenaline in ur body is higher which causes the HR to rise and in POTS patients adrenaline is even more high. The first thing i do when i wake up is take 10 mg of Atenenol to calm the adrenaline and tachy, then i take my midodrine- i take 20 mg every 4 hours. Then i drink like 2 glasses of water, the water really helps with all the symptoms. My BP and HR is then pretty much stable all day. If i dont take my midodrine on time then i start feeling dizzy and faint. Ur doc is crazy if hes telling u ur having a panic attack in the morning.

[AireScottie]

Have you tried having your EP call your pdoc?  It's kind of stupid of him to deny something that's not in his specialty.  I mean, I know I should used a "politically correct" term, but it is stupid.  EP is an extremely complex, difficult subspecialty (think of a doc, electrical engineer, and chemical engineer all rolled into one), and it always amazes me when docs who know nothing about it try to pretend they do.  Anyway, sometimes docs listen better to other docs, so you might try that.

[Weney3777]

I don't know if you remember from my previous posts and threads, but my Dysautonomia started right after having ECT's. I was fine, physically, before them. It seemed with every shock, my symptoms got worse( I had 8 in a month and then 1 a month for 4 months after). I had to stop before the sessions were suppose to be done, because of the tachycardia and dizziness. I was feeling so weak, from them I assumed, that I was fearing for my life. I'm sure you all have felt like you were dying, before being diagnosed. I read up on all I could, and in my research, found that a cause of Dysautonomia is electrocution. It all made sense, then. So, though I haven't asked, I don't think mine is "curable". I will ask more questions from now on. I was just happy with a diagnosis at first, you know?

[Weney3777]

Wow. My doctor started mre out on 200mg a day. Then the next month, because I was feeling better, he doubled the dose. I'm almost positive, because of your input, that 400mg is way too much, especially for me. Thanks, Heiferly.

I see my GP on Wed. and my pdoc on Fri., so everyone will know what's going on, and adjust my meds accordingly. I'm afraid the pdoc won't have the right words for me, due to the fact that for the last 6-8 months, I've been telling him I have POTS, and some of the symptoms that have been affecting me, and he keeps telling me "it's all in my head" and that I need to get a job. Get REAL! It's obvious he's not educated on the topic; I think I'll bring in some facts about Dysautonomia that I have printed out. He actually told me my tachycardia in the morning was panic attacks and to take xanax when I woke up. My heart monitor showed tachy of 160 for 1/2 hr+ every morning for 3 mornings in a row(during the monitoring). I know it wasn't just anxiety. For my EP, I was taking my BP standing up, sitting down, and everywhere in between, all the time. He even said, due to my tachy and own monitoring of BP, I didn't need a TTT. I'm pretty sure of this diagnosis, even if some of my doctors don't know anything.

I'm just frustrated with not feeling good. After being "alright" for weeks(with minor symptoms), it reminded me of what it felt like to be healthy. I got spoiled. Also, my husband and family don't say they noticed anything "different" about me, except that I was feeling better physically, so I may have overreacted.

That is definitely too much provigil, for me, though. Heiferly, when it affected your sleep, were you up several!!! times during the night, and waking earlier than usual until you were adjusted? Also, at what rate did you ease up to 200mg? I'll have to mention this to my GP.

Thanks, guys. Even though I know I'll never be cured(my bi-polar issues are well controlled for almost 2 years now with meds) from POTS, I at least know, now, that I WILL have good days, so be ready and enjoy them to the fullest when they do come. Talk to you soon!

[supineallthetime]

It's a tough call and I can understand your concern in keeping on top of things.  I think feeling good and getting up early by themselves isn't a clear indication by themselves... I think with various meds and underlying conditions there are other explanations as well like things wearing off in the night or whatever.  If you're feeling "a little too good" or have other indicators too (particularly if substantiated by people around you that are somewhat familiar with you and with the condition), perhaps called "hypomania" rather than full "mania" could be creeping in to the picture.  The fact that your mood swung low by a decent bit immediately upon stopping is sort of indicative that things might not be as stable as you want... but since it's med induced and correlated it should be manageable with some attention and effort like you're giving it.

It's tough because just normal life has it's ups and downs too... and compounding conditions like POTS can throw a wrench in... then having bipolar depression/mania adds yet another complexity and "sensitizes" you to things even more.  I think its good to stay on top of it, but give yourself a little slack too assuming signs are not getting too extreme.  Have friends & family expressed concern too at this point?  Have you continued counseling along with medication related to the bipolar?  The combination of both is said to be the best approach and it can give a context for assessing some of these things and making adjustments as needed.

Any single condition is more than enough to deal with.  Compound conditions is a real bear.  You have my sympathy and I hope this can all be balanced out and improved ASAP for you.  Please do let us know things proceed.

[Heiferly]

Unfortunately, you pose a lot of questions that I don't think I can answer for you.  What I can tell you is that I think all of us wish we could feel "normal" again, but there is no pharmacological cure for dysautonomia.  Stated otherwise, there is no known medication or combination of medications that can cure us.  

That is not to say there is no hope:  Some people with POTS do recover or go into remission for long periods of time (i.e. years).  Some people with dysautonomia have secondary forms and if the primary cause is "fixable," then the dysauto will resolve as well.  Some people do find combinations of medications that work well enough for them to return to a satisfactory quality of life so long as they stay on the meds.  

I'm saying all that to say that you're not alone in your frustration.  This is a frustrating condition to have--for us, for our loved ones, even for the doctors that treat us I think.  There don't seem to be many easy answers.  You can do all the "right" things, and things will be going well for a while and then for no reason everything will go "wrong" again.  And sometimes there doesn't seem to be any explanation for it.  It can be maddening.

You're doing the right thing by being on the lookout for signals that things are out of whack (like waking up at 4:30 AM).  The next step is talking to your doctors about what may be going on.  Are you already on a mood stabilizer for the bipolar which has been working effectively?  If so, that makes it less likely that the early awakening is a sign of mania.  I had problems with getting a full night's rest when my body was adjusting to the Provigil which was not an anticipated side effect for a person with Narcolepsy, especially as I think the Provigil is supposed to have worked its way out of your system by nighttime.  Well, I was having all sorts of other ANS side effects so I knew I wasn't metabolizing it that quickly anyway, and I guess we dysauto people just get all the fun, huh?  It may be the dysauto causing you to have lingering "alertness" from the Provigil long after the dose should have worn off like I did.  For me, because of that and the other side effects I was having, we had to start over from scratch to see if we could get my body to tolerate it better.  We did a VERY slow taper up on the dosage, without even knowing how much of a dose I would ultimately be able to tolerate; I did eventually work my way up to 200 mg/day but it took patience.  We also took a closer look at my sleep med (which doubles as my cataplexy medication) to help me out with sleeping through the night that way.

Hopefully, your docs will be like mine and will work with you like a team to sort through this.  If you're using the mood tracker and the dysautonomia tracker or keeping some type of diary or records of your own, it may be helpful to print some of that out to look for patterns that can help pin down which medications correlate to which symptoms, etc.