blueroses79

Thanks!  I hope it goes away!  I'm taking 2.5mg twice a day right now.  It's not actually lowering my heart rate that much, though.

Does ivabradine make anyone else dizzy?

I recently started ivabradine for POTS (diagnosed via ANSAR).  It does seem to help me with my heart rate a little; I feel calmer.  But I'm having a significant increase in orthostatic dizziness.  When I stand up, the blood rushes down and I get dizzy, and my ears pop.  It lasts throughout the day instead of just happening in the mornings.  Has anyone else had this side effect?  It's frustrating, since there are only so many options for a person with POTS  and high blood pressure.  And beta blockers give me chest pains and overheating. 

It could be my imagination, and this is just a side effect of warmer weather, but I noticed it when the weather was still cool.

I have hyper POTS (or at least POTS with high-ish resting BP, drops a bit when I stand), and have been advised to use compression stockings, and of course to increase fluids.  I also have varicose veins,  and have been advised to wear them that too.  I haven't had a blood volume test, so I don't know if that's my issue, but I definitely have pooling (can see it), so I wear the stockings when I can.  The stockings help, though I admit I don't always wear them in the summer (when I need them most!).

I suspect in my case the high HR and BP are compensatory mechanisms for blood pooling, and possibly low blood volume, so preventing the pooling can only help.  My BP is also not that high, though.

3 hours ago, yogini said:

If you drink water without adding salt it would tend to lower your BP.   However I would not add salt if your doctor told you not to.  

Have you had your blood volume tested?  Can you sleep in a reclined position rather than lying all the way down, to avoid hypertension?

Did you mean me, or OP? 

In my case, fluid loading doesn't seem to be lowering my BP.  The orthostatic drops I get when I feel dizzy are to fairly normal BPs, and it's otherwise highish (systolic in the 140s).  Does tend to go even higher (160s-170s) when supine, which is usually when I feel best.  I suspect cutting caffeine would give me a lower baseline BP, but lead to even more orthostatic dizziness and syncope (the latter has mostly disappeared since my BP became high).  It's a balancing act.  I haven't had blood volume testing.  Just ANSAR and HUTT (results, POTS and NCS, respectively).  Will ask about it.  

This is my situation, too, and I have no idea what to do for it.  My BP is moderately high most of the time, but drops when I stand to a normal BP, and I get dizzy.  I feel worst when my BP is lowest.  I drink fluids constantly and it doesn't seem to do anything.  Currently on ivabradine, which also doesn't seem to do anything.  I have a history of syncope, again associated with low BP (since my BP has risen as an adult, I faint less, but if anything lowers it, that's back on the table again).  Ugh.  

But to reply to the original question, I've been advised NOT to add sodium to my fluids/diet because of the potential BP increase.  I have had low potassium before, so that's fine to add. 

Bumping an old post here.  But did you ever find out why this was happening?  It seems to be happening to me too.  Feeling feverish with no fever has always been a part of my dysautonomia but it's increased by at least 80% since I started propranolol.  Exactly the opposite of what I wanted and expected to happen.  My veins have been hurting more also.  (I have varicose veins, so that can happen, but not normally, you know?)  I guess I'm going to have to ask my cardiologist for a different drug.

It's weird because I'm not a very "allergic" person, at least for my family.  Occasionally I get hives for no clear reason.  And a few months ago I got random burning mouth with a single hive.  But no shock reactions ever.  I guess I should look into MCAS.  (It would fit.  I am also hypermobile.)

On 2/23/2012 at 8:42 AM, brethor9 said:

Hi All!

So I am having a weird symptoms since starting my bisoprolol beta blocker 5 days ago......I have a really horrible time with side effects and have been fighting tooth and nail against taking them but I have been having irregular heart rythmns so my Dr says not being on one is no longer an option. Here is the thing though; every time I take a dose I have major heat flushing and night sweats.. and then cycle into cold chills....I know it has to be related because it wasnt happening before. I also find that my veins ache especially in my hands, arms and feet. What systems in the body besides vascular does Beta Blockers affect? Do they effect hormones at all? Or could this be an MCAD thing? (I am still waiting for official diagnosis on that)

Has anyone ever experienced symptoms like this while taking a beta blocker? I just cant figure it out? Also I have to take it a night because of the fatigue and nausea it causes even on a 1/4 tablet

Thanks for any input!

Bren

Just now, kalamazoo said:

Propranolol kind of saved me. But i have hyper pots. High blood pressure and heart rate. Usually just my diastolic is high. Around 90. But my propranolol helps me not feel like a tense rubber band. 

I have hyper POTS too! (Suspected, anyway.)  Lots of sympathetic nervous system symptoms.  That's why my doctor was eager to try it; she's been worried about my high BP for years.  My diastolic is often around 90, and systolic usually in the prehypertension or outright hypertension range (often high while lying down, sometimes when I stand).  Does propranolol not affect your sleep at all?  Do you avoid taking it at night? 

My awesome GP did some research and agreed to treat me for POTS (yay!!), and I started propranolol 20mg 3/day.  The first pill was fine; I didn't really notice any effects aside from a normal (lower) HR when I tested it.  On the whole I felt a little better.  Zero dizziness.  (But dizziness for me is largely a seasonal and occasional symptom at this point; sleep deprivation and humidity..)  I took a second one before bed, and couldn't sleep despite being very tired.  When I did fall asleep, I woke up from a dream into presyncope that lasted a few minutes (2-3 cycles of nausea, the sound flooding into my ears, sweating--all while lying down).  It makes sense that a med that lowers HR and BP would be most likely to induce syncope when someone's HR and BP are the lowest--when they're asleep; but the only other time I've had either syncope or presyncope lying down I had a high fever.  Has anyone else experienced anything like this?  Or does it mean my nervous system is extra weird?  

This morning I was scared to take more of it (especially on around 3 hrs of sleep!), but having chest pain, so I cut one in half and took 10mg.  Feeling a bit better.

3 hours ago, Potsie_Girl said:

I initially saw Beverly because it would be more than a year to see Dr. Grubb. I got in within a month or so and she was wonderful! I'm scheduled to go back next month for a follow-up and don't mind seeing her again. She has been with him for several years and the meds and advice she gave me were spot on. I think it's definitely a good route to get your foot in the door.

Best wishes!

Thanks!  That's super encouraging!! 

2 hours ago, DizzyGirls said:

I have never met Dr. Grubb or Beverly, but have heard good things about both.  What I might say is that we have been to a major Autonomic doctor in CA and often see his PA.  She's just as good as he is, in my book.  Because they work so closely together they work kind of as one brain, you might say.  She is far more accessible than he and, therefore, we get more help.  They all have their limits, but if I were you, I would make the appointment with her and if she feels like there is something that he absolutely must see, she will find a way to have him meet up with you.  Our PA has done this several times!

Thanks so much!  

Hi everyone,  I seem to have POTS with high BP (prehypertension range consistently), and no one will touch it since Florinef would raise my BP.   My last Dr. suggested I see Dr. Grubb, go to Mayo or Vanderbilt (in that order, I think).  Toledo is closer to me than the other places.  But I would have to wait to see Dr. Grubb for nearly a year, and the symptoms of sympathetic overactivity are pretty distressing.  I could see Dr. Grubb's nurse (Beverly) sooner.  Has anyone with hyper POTS seen Dr. Grubb's nurse?  Is that a good route??

I have what's most likely hyper-POTS (sometimes orthostatic hypertension, sometimes hypo, always standing tachycardia), and have been on Spiro for a couple years for my skin.  Recently I dropped it because I thought my insurance was expiring, and my tachycardia got much worse.  Weirdly it doesn't seem to lower my BP much.  It's always in the same (slightly too high) range.  It certainly doesn't make me feel worse.  One reason might be that spiro increases potassium, and I have low potassium.  But it hasn't cured me, either.  I still have temperature dysregulation hot spells, standing tachycardia, and BP spikes and dips.  But my baseline HR seems lower on it, which is good.

I have, but it probably wasn't the right time of day; they were normal. That happens to me too, but it's much more pronounced if I haven't had enough sleep.

This is an interesting idea, though! I take Spironolactone (for acne), and have noticed it makes me feel better in the morning. Without it I tend to wake up with a headache. Spiro increases cortisol levels. I still get very lightheaded in the Summer, though. And sleep deprivation nausea is still bad.

I asked because if I get up within 15 minutes of waking, I am somewhat lightheaded and can feel that my vessels aren't constricting to keep my blood flowing. That causes my POTS symptoms to be at their height. I literally have to lay around for at least 20 minutes after waking, then get up. It's like something doesn't kick in until I've been awake for a while.

I also asked because I was wondering about low cortisol levels. Have you ever had your levels tested?

A daytime sleep study is what they use to diagnose narcolepsy. Mine showed severe daytime hypersomnia but not narcolepsy because I didn't reach a REM cycle when I fell asleep. Have you had one of these studies? They are a fairly common test.

Nope. I'd love to have one, though. If it looks likely I'll ask my neuro about having one.

Does that feeling of nausea, etc. happen at different times of the day? Or, for instance, you say if you only get 4 hours of sleep, so does that mean it happens at 3 a.m.? Or anytime during the day?

It tends to go away as the day goes on, I think. By evening I'll still be out of it, but less nauseous.

I've been thinking about my symptoms lately because they're such a confusing mishmash of neurological issues, and it struck me that a common theme is sleep. Here's what I have:

--dizziness during summer months on humid days / overheating feelings

--sleep-deprivation triggered dizziness and fainting: this started about 10 years ago, before which I could lose sleep without any such problems. Basically, if I get less than 4 hours sleep I'll be nauseous and lightheaded, and maybe faint. When I do, the faint feels a lot like falling asleep. I dream, and people have said my eyes move like in REM sleep. But it also feels like a BP drop, with foggy ears and nausea before it happens.

--once I peed when I fainted; I was on the way to the bathroom, lol.

--when really tired (always late in the day) my face tingles and a feels puffy, diagnosed as migraine without headache

Tests:

MRI: normal

Sleep-deprived EEG: abnormal in sleep region

Non-sleep-deprived EEG: normal

TTT: positive

So I guess my question is, does sleep-deprivation trigger fainting or near-fainting for any of you? It's not even a sometimes-trigger with me; it's an always thing.

I experience this when I over-exert myself; I'm dizzy then, too, which makes me think it's connected to POTS. But I also get it when I drink wine at parties. I feel like my BP is lower then too, but it might be dehydration induced in that case. Then again, my jaw is crooked, so it could be TMJ. :/

I also have the opposite: when my hands are hot--particularly if I'm holding a hot cup of coffee--they'll go *very* red (and puffy) and itch. I also assumed it was from pooling, but not totally sure there aren't histamines involved too.

OMG. Constantly! That has always been my main symptom. I feel feverish and dizzy, exactly as if I had a fever; but I don't. My temp. is normal or low-normal. No idea what kind of dysautonomia I have, though.

I take amitriptyline, 75mg/day, originally prescribed for depression (well, technically, to take the edge off the Wellbutrin prescribed for depression--ugh!), and stayed on it for migraine prevention. That said, it doesn't totally prevent them. I still have various levels of migraines and fog-inducing head pressure daily. But my attempts to taper off and quit the amitriptyline have been abominable; horrible migraines and stomach upset for up to a month. I'm replying, though, because it significantly affects my POTS--negatively. I hadn't fainted for years before I started taking it. It significantly increases OH. The last time I fainted I'd taken a little bit more than my normal dose to stop a migraine. It worked...but I fainted. :/

I get that sensation pre/during headaches/migraines. Topamax stopped the sensation for me (so far), so in my case I am sure it was related to migraine activity. You might want to talk to your neurologist about it.

Really? I'm going to ask to try this tomorrow! I've had pins and needles on my forehead and nose since I was 12, mostly in late afternoons or evenings, depending on when my day began. It's been diagnosed as migraine, but nothing I've tried yet (mainly elavil and neurontin) affects it. I do think it's related to my OH, because it feels vascular; but what do I know?

I understand your hesitation to take Florinef with high BP. I would feel the same, as it's a pretty rough medication. as far as i know, it only brings up BP, and does not even it out. it also takes a few weeks to kick in and can be hard to get off of. Is your doctor a POTS specialist? You may want to think about getting a second opinion.

My Dr. is definitely not a POTS specialist, and is no longer even my Dr. because she refused to believe my dizziness was cardiologically related in the first place. But there aren't any POTS specialists near me. I'll try to get to one at some point.... Still, I've never had a negative reaction to anything that raises BP; but anything that lowers it will always make me dizzy.

Standing BP (just now): 145/109. Lying down: 117/87. That was unexpected. I know I usually run high, but usually there's a drop on standing--or perhaps that's just during exacerbating conditions (my logs are all of humid days when I felt dizzy). Complicated business! 117/87 is around where the "feeling dizzy" readings were, too. I'm going to ask for the data on my Tilt Table Test (if any were recorded), for more clues. (All I know is that I passed out. Nothing about how quickly my BP dropped, or what my heart rate did.)

People often make the mistake of equating compensatory blood pressure swings as signs of overt and dangerous blood pressure. In true hypertension there is excessive blood volume, often increased renin and there certainly isnt fainting.

For me when Im feeling terrible my BP is normal, when I feel ok unmedicated it is high. When I start any medication that is aimed at addressing POTS my blood pressure always comes down and my autonomic doctor told me this is because my arms and legs are constricting to compensate for POTS and when on the meds they have to do this less.

Many of the problems of hypertension are aused by sustained increases and excessive volume - neither of which occur in POTS or related disorders.

Interesting! So there might be clinical differences between me and a true high blood pressure patient.... So maybe it's worth giving Florinef a tentative try with close monitoring. I was worried about the possibility of more migraines with it.

Hello All,

I've been fainting a lot less lately...no particular cause I can discern other than lower humidity. But I'm starting a new relationship and want birth control, ideally a combined pill, which they refuse to prescribe to me as my BP is always in the 140/90 range at appointments. It's no use to explain that I have a massive problem with fainting. I told the cardiologist that my BP is such that gynecologists always want to send me straight to the ER lest I *explode that very moment.* But she said Florinef--which she prescribed but I haven't taken yet--would "even my BP out." Now I'm thinking maybe that's worth a try--if it would actually do that. So... does it? Would Florinef give me a consistent lower reading rather than the very high/very low readings I have currently?

I should say that even just before a faint, when I'm so dizzy I need to sit, it's still not *low*--not until I actually pass out.

(I'm currently using a progestin-only pill, which is fine, except for the constant unpredictable periods. I do get menstrual migraines--which I know is a counterindication for both estrogen and Florinef.)