Effects of propranolol and possible POTS

[stooshiecat]

I've been suffering from numerous symptoms for about 5 months now.  It started off as dizzy/light headed spells and nausea.  My blood was tested and the found I was anaemic (my iron level were half what they should be but have since went back to normal).  I started noticing a pattern to my dizzy spells.  They would happen when on my feet for more than a couple of minutes.  I would get breathless and my fitbit would show my heart rate ranging from 110-140 when my sitting heart rate is 75-80..  I got a bit worried when I had an 'episode' during physiotherapy where I almost passed out and had to sit with my head between my knees.  It took about 4 attempts at standing up (each leading to feeling like I was going to pass out) before I could get home.  I mentioned this to my doctor and she sent me for an ECG.  The nurse doing the ECG implied that I might just be unfit and that my heart rate would stop going way up (sometimes up at 180+ while exercising) the more I exercised.  I was sent for a 24 hour ECG which came back showing I had a normal heart rate with occasional extra beats.

About 5 weeks ago I had to go to the emergency doctor because of these episodes.  The doctor explained that the hot weather we were experiencing could exacerbate tachycardia.  When she examined me, my blood pressure was normal, my heart rate was 101 sitting down and I was panting for breath.  She said she thought it might be anxiety (which the previous doctor had mentioned as well).  I do suffer from anxiety but it's social based anxiety.  I told her I wasn't feeling anxious and wasn't worried about anything going on in my life at the moment but she said I might not realise I'm feeling anxious when I am.  She prescribed 40mg of propranolol 2-3 times per day (I'm already taking 10mg buspirone and 50mg sertraline for my anxiety).  She said at the very least it should control my raised heart rate.  She also advised me to make sure I stayed hydrated in the heat.

I'm sort of fed up that the doctor keeps dismissing my symptoms as anxiety.  I've been suffering from anxiety for over a decade now - I'm pretty good at recognising my symptoms and triggers.  From reading online, I've noticed that many of my symptoms seem to fit with POTS: dizziness, palpitations, breathlessness, headaches, fatigue, brain fog and poor sleep.  Also I have IBS and hypermobility syndrome which seems to have a link with POTS.  I've been paying more attention to when I experience symptoms and it's only when I'm on my feet, when it's hot or after eating.  

I've been on the propranolol for weeks now and while I've found it useful for controlling my heart rate, I feel like it's been making my lightheadedness and nausea worse.  I still get dizzy and feel sick when I'm on my feet for more than a couple of minutes.  Does anyone else experience this with propranolol? 

Right now I'm only taking 1 propranolol per day.  I don't like taking it on days I work out because it makes me really nauseated so I have to wait until after any workout to take it.  Plus, it seems to be making my fatigue worse.  I've already been struggling with my energy levels and feel constantly drained.  On days where it's hot I'm basically non functional - I  can't even gather the energy to do basic house work.  I feel like I'm also checking the clock for when I can go to bed but then I have trouble sleeping.  I wake up a lot due to pain (I have shoulder instability causing pain and numbness/pins and needles).  Most days I suffer from headaches and what feels like strained eyes.  I sort of feel like my brain isn't working.  Like if I'm reading or watching TV etc, I can understand what's going on but I'm not retaining anything or I'll forget words when I'm speaking.

I've got an appointment with my doctor on 18th August.  I think I'm going to ask to be tested for POTS but I'm worried about being dismissed again.  I'm worried that they won't be willing to investigate because my main symptoms - the heart palpitations and breathlessness - are being controlled by the propranolol.

Has anyone else had this problem (i.e. being told it's anxiety or something else instead of actually investigating) getting a diagnosis?  Right now I just feel like I'm never going to feel 'normal' again.  In your experience is there something else I should be discussing with the doctor?  Has anyone else diagnosed with POTS had a problem with propranolol making things worse?

Information about others' experiences is appreciated.

[haugr]

Hi Stooshie, I'm so sorry you are dealing with this. It sure sounds like it could be POTS. Eye strain, brain fog, headaches, and tingly hands and feet are consistent with what I deal with. 

Some on here have reported that Propranolol has negatively impacted their symptoms, but some have said that it helps. There may be other options too depending on the underlying cause. 

A diagnosis of anxiety is common. There aren't many doctors that have experience treating POTS and both have a tendedency to activate the sympathetic nervous system leading to some overlap with the symptoms.

[stooshiecat]

Thanks for the response.  I was beginning to think I was imagining the way propranolol was effecting me because I couldn't find anything like what I'm feeling when searching online.  This whole thing just seemed to come out of the blue and I'm so sick of feeling exhausted all the time.  I was almost in tears last night because it was like my brain wasn't working.  I was trying to write a to-do list and I just couldn't focus and kept thinking of the same tasks over and over (I have to go to the shop, I have to phone the opticians, I have to go to the shop, etc) and it was so frustrating.

I phoned my doctor this morning to see if I can get a closer appoint but was told they didn't have anything until 1st Sept!!  So I guess I'm just going to have to wait until the 18th August.  I'm gearing myself up to not leave the doctors until they're actually willing to do something to help.  Hopefully it goes well

[Clb75]

A lot of your symptoms seem consistent with pots. It's very common for people to be misdiagnosed as having anxiety when it's really dysautonomia. The day I went to the ER for my "pots attack", they said it was a panic attack until the ekg and some labs came back pointing to a cardiac issue. They referred me to a cardiologist fortunately.

One of the main differences between anxiety and pots is that it's positional. Pots symptoms get better when lying down and worse when upright while anxiety will remain consistent despite the position you're in. Also, as you pointed out, pots patients may have physical symptoms that mimic anxiety but will lack the cognitive piece of it. They will not have the fears, worries and ruminations that an anxious person will have. Plus, an anxious person's tone of voice, facial expression etc will usually be loud, pressured and worried at the same time they are having the physical symptoms.

Beta blockers can be tough! I went through three before I landed on one I felt was helping. You may want to call your doctor to see if you should hold the propanolol for a day or two before your appointment so it won't mask any symptoms or affect any testing they may do. Also, it may be helpful to keep track of your vitals sitting and standing a week prior to your appointment, and show it to your doctor as evidence that things change when you're upright. Hope it goes well!

[haugr]

You probably know this already, but when the brain needs additional blood flow, the brain triggers an increase in heart rate and blood pressure. Since beta blockers can effectively inhibit that natural process from happening, it makes sense why they might make someone might feel worse if there is a lack of blood flow to the brain.

[stooshiecat]

Thanks for the replies!  I was thinking about keeping a symptom tracking diary showing when I'm 'triggered' in the couple of weeks leading to my appointment.  This should be helpful because sometimes when I get into the doctors office I forget half of what I was going to say.  @Clb75  thanks for the advice about stopping the propranolol a couple of days before my appointment.  I'm in the UK so for any testing (beyond blood tests) I'll need to wait for a referral to the hospital (which can take months) but it's probably a good idea to show the GP what I'm like without the propranolol lowering my heart rate.  I'm not going to let them dismiss me this time without some kind of investigation because it's been almost 6 months now and I feel like I'm getting worse not better.

[HangingByAThread]

Hi Stooshiecat,

You mentioned your blood pressure being normal when the doctor checked you, but you didn't mention what it is now that you are on the propranolol.  I was thinking maybe the medication is dropping your bp down too low (I get in a real fog and feel like sleeping all day when my bp is too low).  I think the diary - or a time line - is a great idea.  I also used to print out a monthly calendar and note my symptoms because it is hard to remember all of that during doctor appointments.  I was told to stop meds 5 days before my autonomic testing (beta blockers, allergy medication, blood thinners, etc.) 

I used to get the line about it being "just anxiety" as well.  Fortunately, years before the POTS symptoms started I did have a fixable heart issue but before diagnosis of that I was told by a bunch of doctors, EMS and emergency room staff that it was just anxiety but I knew it wasn't.  Eventually after wearing a monitor for a whole month my issue was found (and then corrected).  Then when I had my thyroid issue after giving birth, I was given the same load of nonsense "you're just an overtired new mother".  No, it was Grave's Disease and could have killed me.  By the time the Dysautonomia symptoms started and I was told it was anxiety by various doctors, I decided to check in with my EP, who performed my first ablation and, since he knew me well, he took me seriously. 

[stooshiecat]

Hi!

I'm not sure what my BP is on the Propranolol and I've had to stop taking it now.  I was at a doctor yesterday because of my constant headaches.  He asked about other symptoms, felt my neck and told my it was tension with no mention of my other symptoms!  I wish they'd look at my symptoms as a whole instead of individually.

I read that, other than the tilt table, a 24 hour ECG is also used for diagnosis but mine didn't show any red flags.

One of the reason I'm so frustrated that they're not investigating is I had a problem with my heart last year.  I was going through pre-op for shoulder surgery (which didn't happen) and the nurse found I had long QT intervals.  Luckily it was being caused by my medication (which they changed) and cleared up a month or so later.

[haugr]

On ‎8‎/‎4‎/‎2017 at 2:51 PM, stooshiecat said:

Hi!

I'm not sure what my BP is on the Propranolol and I've had to stop taking it now.  I was at a doctor yesterday because of my constant headaches.  He asked about other symptoms, felt my neck and told my it was tension with no mention of my other symptoms!  I wish they'd look at my symptoms as a whole instead of individually.

I read that, other than the tilt table, a 24 hour ECG is also used for diagnosis but mine didn't show any red flags.

One of the reason I'm so frustrated that they're not investigating is I had a problem with my heart last year.  I was going through pre-op for shoulder surgery (which didn't happen) and the nurse found I had long QT intervals.  Luckily it was being caused by my medication (which they changed) and cleared up a month or so later.

I had occassional extra beats and occassional missed beats, but otherwise my ecg was normal too.

[StayAtHomeMom]

I just wanted to add my two cents in really quick. I did the propranlol at first. My POTS symptoms initially started with dizziness, nausea,  lightheadedness, loss of appetite and breathing difficulties. The last being the worst. The propranlol helped a little but not enough and it was making my breathing worse. So my cardiologist started me on a calcium channel blocker which helped some things but not all. Now I am taking metoprolol.  This has been my life saver. Had to up the dosage a little but I function ok now. When my breathing gets bad I eat french fries dipped in salt and I feel a little better. I have more symptoms then I did when my POTS started but I can get out of bed and push most days so I figure things are looking up. I hope things get better for you.

[kalamazoo]

You know, I stopped taking propranolol, and once I did my blood pressure went down (after slowly going up for about 6 months) and I feel like I can breathe easier. I will say though, that a lot of the symptoms you have described sounds like stuff we POTsies deal with regardless. I am nauseous every day, and short of breath. I have vertigo and dizziness etc. I find I do feel better though OFF medication. Yes my HR is high, but overall I just feel more "normal" 

[Flight272]

I've got POTS and neurally-mediated syncope, as well as OCD, possible Ehlers-Danlos, and a sleep disorder similar to narcolepsy without cataplexy/hypersomnia. It's kind of freakish you mentioned numbness and tingling and memory problems, because I've got those too! The memory problems especially have been awful lately. I've also had doctors try to attribute my symptoms to anxiety, depression (I'm not depressed, which is actually surprising given my situation!), and deconditioning/lack of fitness, which is, of course, a lazy attempt at diagnosis and utterly wrong. 

Like Clb75 said, anxiety disorders aren't positional. You can tell doctors you're not overly anxious till you're blue in the face and they can overrule you, but they can't easily deny proof that your heart rate skyrockets while standing and falls as soon as you lie down. Those conversations with doctors always remind of that scene in Star Trek TNG when Data goes to see holographic Freud because he's been having nightmares:

Freud:  I believe you are experiencing a classic dismemberment dream. Or in your case, being a mechanical man, a dismantlement dream... Now the image of Counsellor Troi, a female, is devoured by you, clearly indicating an unconscious desire to possess your own mother. 

Data: But I do not have a mother. 

Freud: Do not interrupt! The knife in its violent connotation suggests a certain feeling of sexual inadequacy.

Data:  But I have no sexual desire.

Freud: Ach! Impotence on top of everything! It is all becoming clear to me now. There might be a paper in this. 

Data:  I do not believe I am being helped by this session. 

 

I had a 48-hour Holter monitor test which showed my heart rate averaged 95 and was over 100 50% of the time. I had a tilt table test and fainted after about 5 minutes. I've been on propranolol for about 4 years now, and it helps prevent the gasping feeling when your heart rate goes up to like 150 from climbing a flight of stairs, but I've also had to go down to 25 mg/day because I felt like it was making me even more lightheaded. I would say it's only been a minor help, and has certainly not impacted my quality of life much. 

I'm glad I'm fairly skinny because I know if I was overweight the doctors would tell me that was the cause of all my problems. Even so, they keep suggesting exercise - like rigorous, running on a treadmill exercise, which I did for a few months, but it didn't help, and they never take into consideration that I do a ton of walking as a mode of transportation. Most people I know are far less active, and they don't have POTS. 

It's becoming more and more incapacitating for me (the POTS/neurally-mediated syncope). I can't go shopping anymore unless I know exactly what I want and where to find it, get in, buy it, and get out. Stores are always overheated, and if I have to stand still for a few minutes, I faint. If I keep on the move constantly, and it's nicely air-conditioned (and there's no uphill walking), I do much better. Whatever I do now, I have to carefully consider beforehand whether I'm likely to encounter a situation where I'll be left standing, like in a line-up or crowd that's not moving anywhere, or if I'm going to enter a non-air conditioned environment. If I do get stuck standing in a line, I end up just crouching on the ground despite the looks people give me. I don't care anymore. 

One doctor advised me that I have to be my own advocate and pester doctors until they give me the testing or treatment I need, but I'm too tired to do that anymore. I'd spend most of the doctor's visit explaining my complicated health history, explaining what POTS was, explaining how it is I know it's POTS and not anxiety or lack of fitness, only to be brushed off or told there's nothing they can do other than to advise me to drink plenty of water and eat a lot of salt (which I already do). My day is only 10-12 hours long because of the sleep disorder requiring 12-14 hours sleep a night - I don't have time to pester doctors. 

I hope you can at least get a diagnosis though. Hopefully your POTS won't get as bad as mine.