Medicine woes for POTS & Anxiety

[amycooper]

Hi!  I'm new here.

I'm having some trouble.  I have POTS and GAD/Panic disorder.  I've been prescribed Buspar for anxiety, but had to stop taking it because it makes me so dizzy (I was on it for a month, worked great for anxiety but the dizziness only increased over time, not decreased), I assume this is because it is worsening the POTS.  I was also given an SSRI but reacted badly to it.  Meanwhile for POTS I was prescribed medrodrine and fludrocortisone and reacted badly to both.  Not only did they both give me a LOT of anxiety, but a horrible headache (the fludocortisone was particularly bad).  Both basically made me completely unable to function whereas I was without treatment (albeit with lots of difficulty).

The doctor says these are my only options for treatment and seems a bit frustrated that I won't take them meds he's proscribed, but the meds he's given me literally make me unable to work or take care of my kids or even myself.  They make me so much sicker than I am without them.  But I'm still really struggling.  Anyone have any options I can bring to him during my next visit in a week?

[WinterSown]

Yeah, tell him firmly that the medicine he prescribed is not working as expected and ask him to explain why you should stay on these drugs. Do they take longer to kick in? Are there others in the same class that would do the same? Do you call back in two weeks or a month if still no change, Etc etc. If he remains intransigent and doesn't help you then go doctor shopping. You need the correct medicine that will help you heal and as important, you need a doctor that will both listen and respond to what you tell them. Good luck.

[StayAtHomeMom]

I see no beta blocker. Have you tried propranolol or another beta blocker?

[Pistol]

@amycooper - this sounds like what happened to me in the beginning of my illness. After 4 cardiologists I found one who agreed with me and my PCP that it is POTS but he did not know how to treat it. So he put me on midodrine ( b/c he said it  was supposed to help ). It made things much worse so we tried BB and SSRI and the I went to specialist and went from there. Even then I had to try many meds before we found the right combo. It is OK if meds do not work, what is not OK is if the meds fail and the doctor blames YOU! POTS has many different mechanisms there fore the symptoms might be similar in many but the treatment is not. I agree with @WinterSown that if your doctor is already running out of options then you may have to find one that does a better job. Sorry you are dealing with this - but know that this is unfortunately the norm for dysautonomia patients. Check the physician list and see if there is someone you could go to - in my state there is no one who can treat dysautonomia so I drive 8 hours to see my autonomic specialist but it is worth every mile!

[amycooper]

Propranolol is the only other one they ecen mentioned.  But they said my blood pressure was too low for it.

I could shop for another doctor.  I just started with this one after the previous doctor refused to test me (despite a cardiologist finding me borderline a year and a half ago).  I just don't have much hope.  Doctors in this area don't spend any time with patients, being part of obe of three main medical hospitals/networks and regulated to only about 5 minutes/patient.  They try two drugs, then shrug and move one.  They don't have time for anyone more complicated like me.

[amycooper]

@Pistol yikes!  Sorry you had to deal with that.  My previous primary kept saying it was panic attacks (which I also get) and refused to test me.  I had some trouble two-three years ago and the doctor I saw then said it was chest wall pain and put me on a steriod which, two days later, landed me in the hospital with a heart rate that just wouldn't stop.  I thought I was having a heart attack!

After that I went to a cardiologist.  Everything checked out fine except he did the tilt test twice, on two separate days, and each time I was one point away from the official criteria for having POTS.  He told me I was borderlibe and to keep an eye on it.

So when it did flare up in March, I talked to my primary about it and she dismissed me.  POTS is rare, she said, and I would be much more disabled, unable to get out of bed.  I went back a few times until one day I fell and couldn't get back up for an hour I was so dizzy.  It went to the urgent care and, as luck would have it, saw a PA who also had POTS himsrlf and recognized it immediately.  This time when tested I was very much in the "have it" category.

 

I have not been back to the cardiologist because my anxiety disorder makes me afraid of driving/car rides, but my car anxiety is better under control right now so maybe I should schedule an appointment there.

[Pistol]

That is terrible that your anxiety prevents you from riding a car! Is there any med you can take as needed before a car ride so you can at least get to an experienced POTS specialist? Or how about a bus - would that affect you too? --- I disagree with your PCP - POTS si not rare and you definitely do not have to be disabled by it! -- Could the PA at the urgent care center recommend someone to go to? If he/she has POTS I'm sure he sees a specialist? 

[amycooper]

He recommended the person I see now, who tried two meds and is apparently saying that is all you can take.

My car related anxiety is improving, enough that I think I should be fine now going back to the cardiologist, so maybe I will try that.  Long drives, even if I am not driving, are still pretty iffy, but I did a one hour drive (as a passenger) alright.

I really wish I could go back on my buspar.  I took myself off it because it was making my POTS so much worse.  Every anti-anxiety drug comes with dizziness (and lower blood pressure) as a side effect.

[Pistol]

@amycooperYou said that you took SSRI before - maybe a SNRI ( affects both serotonin and norepinephrine )? Bot of those are commonly ordered for POTS. My sister saw GREAT improvement of her POTS symptoms with Wellbutrin. Maybe give that a try if cardiologist agrees?  

[amycooper]

I've been toying with the idea of talking to the doctor about Wellbutrin.  It's worth a shot.  

I have a doctor's appointment for my primary on the 30th so I'll bring it up there.  (I will also make up my mind, based on that appointment, whether or not to stay with this guy.  I only met him once and he seemed nice in person, but sounded frustrated the two times I called him on the phone about each medication not working).  I'll make an appointment with the cardio later today.

[dizzytizzy]

@amycooper: How low does your BP run usually? Mine frequently runs less than 100/70 standing (I know, not technically low low, but low enough to cause me symptoms) and more like 90/60 when laying. Some of my worst symptoms are what we think are surges of adrenaline at night, so EP just started me on 10mg of propranolol at bedtime and I haven't noticed a change in BP at all. 

Now, I don't know if that would change if I took it during the day too. Here is a research study that talks about propranolol and that less is more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2758650/ 

And I've only been diagnosed with dysautonomia and don't actually know what "flavor" I have, but we are leaning toward hyper. My EP believes that I have low blood volume and that my body is relying on adrenaline to maintain BP so that's why tremors and anxiety feelings are so strong. By increasing my blood volume and leveling out BP/HR, he thinks we'll decrease the release of adrenaline. I actually wonder if getting some adequate treatment for POTS will lessen the adrenaline/anxiety feelings for you. Maybe not take them away completely, but make them more manageable. 

[StayAtHomeMom]

11 hours ago, amycooper said:

Propranolol is the only other one they ecen mentioned.  But they said my blood pressure was too low for it.

I could shop for another doctor.  I just started with this one after the previous doctor refused to test me (despite a cardiologist finding me borderline a year and a half ago).  I just don't have much hope.  Doctors in this area don't spend any time with patients, being part of obe of three main medical hospitals/networks and regulated to only about 5 minutes/patient.  They try two drugs, then shrug and move one.  They don't have time for anyone more complicated like me.

A small dose will barely touch you BP, if at all. Small doses of propranolol have been used to treat anxiety. I was worried because BB can cause dizziness. Which I did not need more of but it actually fixed my dizzies. I currently use a different BB because the propranolol messes with my breathing but it is my number one medication. Along with midodrine as needed. 

[yogini]

There are literally dozens of meds for Dysautonomia. If a dr is telling you you only have 2 options, that person is not experienced in treating Dysautonomia. A more experienced doctor would be more helpful to you. I also think it is helpful to read as much as possible about Dysautonomia, learn all the treatments and then you can make decisions with your doctor, instead of waiting for them to think of ideas.

Also just because one SSRI didn’t work doesn’t mean all SSRIs wouldn’t work for you. Same with beta blockers, sometimes you have to experiment with various medications and doses. Also many of these meds have an adjustment period and you have to tolerate symptoms for a few weeks before you settle in. You might feel like death at first but in a few weeks that could go away. Researching a med before you take it and talking to other patients who have tried it is a big help.

[StayAtHomeMom]

9 hours ago, yogini said:

Researching a med before you take it and talking to other patients who have tried it is a big help

YES!!! Personally if I hadn't read on here that midodrine can cause scalp tingles I would have went to the ER. Neither the doctor or pharmacist warned me. Totally freaky. That being said it is a side effect I live with because it helps so much. I have noticed the more active I am the less it shows up though. When I asked my doctor about it he said, "good, that means it's working"

[Guest KiminOrlando]

My doctor took me off a SSRI because it drops your BP. He said most docs don't realize it. I truly think there is something with the SSRI vs SNRI that @Pistol is talking about. I also agree that if he thinks there are only two drugs to try and if they don't work for you then, oh well, it's your fault for being noncompliant regardless of the side effects. 

To me, it sounds like you doctor claims to treat dysautonomia/POTS, but doesn't truly understand it. 

[Apple86]

Hi Amy, 

I also have anxiety/panic disorder and I'm going through the process of being diagnosed with PoTS. I've been on the SSRI Citalopram since March - my doctor prescribed it because they thought my PoTS was just more anxiety. At the same time, and for the same reason, I was prescribed Propranolol (beta blocker). I was told that the two medicines would balance out my BP as Propranolol would bring it down (slightly) but the SSRI would RAISE it. I've just had a 24-hour monitor and my BP is on the lower side of NORMAL with the two medications, so I believe they're working really well. 

Which SSRI did you try? Different ones can affect people differently, so it may be that you could try a different one? I know Sertraline is another SSRI that some of my friends have been on for anxiety and they said it's worked well. Also, how long were you on the SSRI for? I felt SO much worse for the first 5 weeks before they started to kick in and I haven't had a panic attack since.  Some people come off them too early because of the initial side effects. 

I wish you all the best x 

[amycooper]

Wow!  Thank you for your input and help all!

While I do understand many drugs have side effects and it may time take to adjust, both medrodrine and fludrocortisone gave me headaches so incredibly bad that the migraines I've had in the past paled in comparison.  Both also tripped off my panic disorder.  Trust me when I say I became non-functional on them.  Also, my BP went from 90 to 130 on a half dose of fludrocortisone, and he wanted me to take a full dose.

I'll definitely give Propranolol another look and discuss it with my doctor.  It was my previous doctor, not this one, that ruled it out so maybe this one would have another take on it, if I mention it.

[amycooper]

@Apple86 I was on sertaline for three days.  Trust me when I say the side effects were much worse than the thing it was treating.

It was so bad both the doctor and I are a bit concerned about trying anything in that class of medicine.

[Guest KiminOrlando]

Midodrine completely incapacitated me. I get it. I spent the whole time curled up in a ball holding my head in the dark. No sleep, nothing. Four days was all I could take.

[Ragnar]

@amycooper. Keep on at it! I'm in a similar situation. I've reacted badly to fludrocortisone, Midorine and SSRI's, much to the exasperation of my GP. The Midorine caused painful urine retention but it's not the Midorine it's me! 

As others have said, shop around for a Doctor who 'fits' for you, they are out there, I'm told!

Good luck,

Ragnar

[amycooper]

@KiminOrlando that was fludrocortisone for me, but midodrine was only slightly better.  Both make me incapable of working or taking care of my kids (or myself for that matter) so they are not for me.  @Ragnar this is a new doctor.  The previous one wouldn't even test me for POTS, despite having a cardiologist note me as "borderline" a year before and noting on my record that it should be watched for.  This one was referred to me by the Urgent Care doctor I saw when I was diagnosed, but he isn't a specialist.  I'm going to see him this week.  I think I'm going to see how he handles that appointment first, especially since most of our interaction has been over the phone at this point (he saw me once, talked meds with me a couple times over the phone).  We'll see if he has other ideas when we talk in person or if he refers me to a specialist.

[Ragnar]

@amycooper it can be so frustrating. I'm in a place, like you, where I can't access a specialist. I find that the process of seeing my current Doctor so stressful that I know my symptoms will worsen after seeing him. I'm not a naturally confrontational person but I've had to become one in order to make progress.

I've been told fludrocortisone doesn't have any side effects, the same for Midorine. I've been told there is zero evidence that IV fluids work so there's no point trying. The last visit I was told I could either put up with the 'imaginary' side effects of Fludrocortisone and Midorine or live with the risk of passing out in the street and being run over! 

I liken the process to trying to fix a fine Swiss watch movement when your watchmaker has only got a bag of hammers and, they've got one eye covered up!

As @WinterSown pointed out to me; someone is paying for your visits to the Doctor, whether that is yourself, your insurance company or the State, to provide a service. If you're not getting results hunt around, tell people of your bad experiences but especially let people know when you find a decent Doctor who'll listen.

From experience its a long, tiring road that we often have to travel alone.

Doctors aren't Gods, although some do think they are. I'm still looking for answers and I hope you find yours soon.

Best wishes,

Ragnar

[Pistol]

I often provided ignorant doctors with articles and studies to prove them wrong. There are excellent articles on the dysautonomia international web site under the physician tab if you want to present them to your doctor. OF COURSE do midpdrine and fludrocortisone have side effects - show him the paper that comes with the medications or have your pharmacist print out a list of them for you. And  there is ABSOLUT evidence that IV fluids are an effective treatment for POTS.  There is a updated version of Dr Blair Grubb's article about IV saline infusions that you can print off an give to him. So sorry for all your troubles - I also get bad if I have to see DR's that do not know anything about dysautonomia but think they are experts. This happens to me whenever I need to go to ED - they'd rather push me out the door before they look into the issue. Best of luck to you!!!

[WinterSown]

On 7/29/2018 at 1:04 PM, Pistol said:

I often provided ignorant doctors with articles and studies to prove them wrong. 

IMHO, doctors don't like to be proven wrong--you can do yourself a disservice if you hand them a paper implying "See, I told you so!" Instead, bring to the visit some printouts in duplicate with the pertinent content highlighted, pass across the most important and tell the doctor, "I brought these so we can learn together." Honey works as well on doctors as it does flies, neither one is attracted to straight vinegar.

 

[amycooper]

An update!  I went in today and discussed my problems and contrary to what I anticipated, he wasn't dismissive and had some ideas.  Since my BP is up and I'm having more trouble with anxiety at the moment, he wants to try another SSRI.  He said it should help with both, but especially the anxiety and even though I had a really bad reaction to one, it does mean I will with this one.  Still, he's putting me on a very low dose (pedatric even!) given that I seem particularly susceptible to side effects.

Hopefully this will do the trick.