What Are Your Experiences With Pots Medications?

[Lemons2lemonade]

Mine are:

Florinef: solved the tachycardia, increased weight gain, initial anxiety, increased fatigue, eventually reduced panic, stopped frequent urination, increased shortness of breath

Metoplerol: helped with presyncopal feelings, did not reduce heart rate, increased ability to exercise, increased panic, increased palpitations, helped with shortness of breath

Midodrine: did not help heart rate, increased chest pain, increases syncopal feelings, experienced periodic bradycardia, increased blood pressure

Methyphenidate (ritalin): did little for focus, increased jittery feelings

Citalopram(celexa): helped reduce heart rate, helped reduce panic, decreased clearness in vision , increased fatigue, helped stabilize emotions

Lorazepam: helped with panic like symptoms, increased anxiety upon withdrawal, increased fatigue

Tylenol: reduced chest pain, resolves headaches

Promethazine: eliminates nausea

Tums: reduces acid reflux/upset stomach

Albuterol: increases heartrate does little for shortness of breath

Probiotics: helped regulate digestive system

Prozac: does nothing for pots

Coq10: improves focus, increases pots symptoms upon withdrawal

[peregrine]

Diltiazem (calcium channel blocker) - slowed heart rate, made other symptoms worse

Atenolol (selective beta blocker) - slowed heart rate, increased standing time, markedly increased fatigue

Propranolol (nonselective BB) - slowed heart rate, somewhat increased standing time, worsened shortness of breath

Pyridostigmine (indirect parasympathetic stimulant) - slightly increased standing time, slightly decreased fatigue

Cymbalta (serotonin-norepinephrine reuptake inhibitor) - triggered POTS! decreased chronic pain but worsened spaciness

[Mytwogirlsrox]

Celexa -- helped with anxiety attacks, stabilized blood pressure, possibly lowered HR, may have caused eye floaters & visual snow?

[Sif]

Florinef: Increased blood pressure and decreased thirst and urination.

Metoprolol: Decreased tachycardia, chest pain, shortness of breath and the shaking. Also decreased blood pressure, increased presyncope symptoms and fatigue. Caused occassional bradycardia.

Midodrine: Decreased tachycardia, sometimes raises blood pressure but sometimes has little to no effect.

Pyridostigmine: Slight increase in blood pressure, clears vision. Causes muscle twitching and upsets stomach.

Salbutamol (Ventolin): Induced tachycardia and a nasty case of the jitters. Did nothing for breathlessness.

Ivabradine: Decreased heart rate. I've only taken a few doses so far so time will tell. It's decreasing my resting HR too much along with the midodrine. My HR is still increasing 30-60 bpm on standing though so I might need to go back to the beta blocker or stop the midodrine.

[Lemons2lemonade]

Sif, its interesting thst the metoplerol also made your presyncope feelings worse

[icesktr189]

Sif, its interesting thst the metoplerol also made your presyncope feelings worse

I took that also...it makes it worse because most of us need that high hr to keep up our blood pressure. The same goes for adrenaline. Without high hrs and adrenaline my bloodpressure goes right in the toilet.I cannot tolerate any bbs without either midorine or sojething to raise my bp to counter act the affects of not having a high hr.

[Libby]

I took that also...it makes it worse because most of us need that high hr to keep up our blood pressure.

I'm not sure I agree with that. Tachy works to keep your bp up initially, but becomes counterproductive after a certain point. When your heart is beating THAT fast, the chambers don't have time to properly fill, meaning your bp is actually likely to decrease the higher your heart rate climbs.

It's what happens to us whose bp suddenly drops on the tilt test. BP keeps slowly falling, triggering the HR to climb - but it's past the point where that will actually help - so it keeps looping (falling bp increases tachy) until finally the brain decides to put a stop to it and drop you.

[Libby]

Propranolol - Increased fatigue significantly, increased breathlessness, lowered hr slightly

Metoprolol - Decreased hr significantly, decreased nausea, decreased the number of times that I black out upon standing slightly, lowered bp slightly, slight increase in fatigue

Florinef - Weight gain, gave me awful headaches

Midodrine - Increased bp slightly (mostly seen supine), decreased the number of times that I black out upon standing significantly, increased chance for a headache later in the day (usually if I take more than one dose), increased chance for headache when I lie down

Prozac - Leveled out mood swings caused by fluctuating bp, not sure if it did much else

Ritalin - Decreased brain fog slightly

Adderall - Decreased brain fog moderately, decreased fatigue moderately, increased bp slightly, increased chance of headache in the afternoon (usually if I take more than one dose), slight decrease in appetite

[icesktr189]

Libby-I have had two cardiologists tell me that and i think my old neuro knew a little bit... basically for me atleast, POTSis a defensive mechanism when my bp drops. Anytime I try to stop my hr hrs, my blood pressure always bottoms out. I actually feel better with tachycardia and dont even notice it until it gets in the 150s and up.

[icesktr189]

Also hr can only help bp for so long, same for adrenaline.When I used to go shopping on Metroprolol, I could barely stand 5mins. I had a decnt hr and no adrenaline, but without those, I cant function.

Ugh sorry for all thetypos, Im on my tablet

[McBlonde]

Has anyone else experienced positional vertigo from Midodrine or am I the only one?

[Libby]

Dani - in a non-POTS person, yes, increased heart rate will result in a peak cardiac output at a hr of around 180, resulting in raised bp. But there have been studies suggesting that the same doesn't apply to many people with POTS - cardiac output is actually reduced. (http://www.ncbi.nlm....pubmed/11503949). Dr. Stewart did an interesting study back in 2007, to see if the same applied to POTSies while they exercise. He looked at blood volume in different parts of the body during exercise and his findings suggested that instead of bp regulating hr and cardiac output, the blood pressure reflex was actually uncoupled from heart rate/output due to an increased baseline state of sympathetic activity in POTS patients. For POTS patients (particularly low-flow) BP was maintained through peripheral venous constriction, not through increased cardiac output. Cardiac output was only slightly increased from baseline and dropped to below baseline during recovery.

I got my masters in biology (cancer research, specifically - spent 2 years in a lab playing with mice), so I'm a bit of nerd about this stuff. Sometimes, I don't even mind having POTS because it means that I can experiment and understand some of the results firsthand.

Anyway. Everyone's body is so different - responds differently to different meds, behaves differently under certain circumstances...Propranolol slowed my hr, but it made getting up off the couch practically impossible. Studies can only tell you so much - you just have got to do what's right for you.

Lemons McBlond (ugh, my brain. sorry!) - what position do you get your vertigo in?

[brethor9]

I actually have the same reaction as Dani.....oddly enough I think my system has been so used to the high HR and massive adrenaline that when I lower it all too much I basically flatline....I dont think my system knows how to react without it..... all of the BB's have been horrible for me and especially made the pooling worse....antihistamines have been the most helpful but they have their own side effects on the system....with POTS you can never win it seems.........

[Wendy C.]

McBlonde, I may have positional vertigo and I am on Midordrine, but I'm not sure if that is what it is or what is causing it. I only notice mine when I wake up from having been asleep for many hours, so I am groggy and still have my eyes closed - but it feels like my eyeballs are rocking up and down inside the sockets, kind of like when you are on a boat in rough seas. When I open my eyes it stops, perhaps because I have control of them and am focusing on the ceiling or wherever. I haven't noticed if it happens more when I have just rolled over in bed, but I am guessing so, since that is typically what I do when I wake up and feel so uncomfortable in the current position. If I am remembering correctly, this began a few weeks before I started taking Midodrine though. Plus, I take my last dose of Midodrine at around 1pm, so why would it take until around 6am to give me the rocking eyeball/vertigo thing? Anyway, I don't now if this helps at all, this is just the info I have so far.

Wendy

[Sif]

I took that also...it makes it worse because most of us need that high hr to keep up our blood pressure.

I'm not sure I agree with that. Tachy works to keep your bp up initially, but becomes counterproductive after a certain point. When your heart is beating THAT fast, the chambers don't have time to properly fill, meaning your bp is actually likely to decrease the higher your heart rate climbs.

It's what happens to us whose bp suddenly drops on the tilt test. BP keeps slowly falling, triggering the HR to climb - but it's past the point where that will actually help - so it keeps looping (falling bp increases tachy) until finally the brain decides to put a stop to it and drop you.

I think we're all probably a bit different? My blood pressure skyrockets when I get really tachy and that's when I feel my worst.. the metoprolol really, really helps with that. The only time my BP actually drops on standing is when I take a little too much metoprolol and that's when I start feeling woozy, dizzy and black out on standing. Honestly, I'd rather faint from low BP than start passing out from a really high heart rate.. it just feels so **** awful and takes much longer to recover from. Man.. our bodies are so weird!

[McBlonde]

Libby and Wendy.....

I had never had any vertigo before. It started on about the 6th day of Midodrine. It was positional vertigo. IE when I rolled over in bed in the AM it felt like I was on a boat and even when I stood up, it continued for a few minutes and then would go away completely. The Midodrine was so great because I could be up and functioning again, but I was afraid if I continued the Midodrine, it might cause permanent vertigo. After I dc'd the Midodrine, the positional vertigo very gradually disappeared. It's bee 6 weeks now and it's almost completely gone. That part doesn't make any sense to either because Midodrine has a short half life is is supposedly out of your body very fast. I also never took it past 1:00 PM, yet it took six weeks for the side effect to go away. I don't understand that.

[diamondcut]

Also hr can only help bp for so long, same for adrenaline.When I used to go shopping on Metroprolol, I could barely stand 5mins. I had a decnt hr and no adrenaline, but without those, I cant function.

Ugh sorry for all thetypos, Im on my tablet

I have to reply to this because i experience exaclty the same as you with out the Adrenalin, i find it very hard to push through the day, but how do you realistically maintaine this day after day, week after week etc.

BB's are out for me as they do not like me one bit and Clonidine did exaclty the same to me in the sense it lowered my HR rate ever so slightly but i couldnt go to the shops when i was on it!!!

Its such a difficult balance.

I would like to know how many poties give up with just specifically trying to lower their heart rates, if the drugs that do this make you feel weaker.