Why Does Taking Nitroglycerin Tablets Help Me?

[tinkerbella]

thankful,

check with your doc as soon as possible as you seem so concerned. remember here you are gettin what you pay for, free opinions. I'm just telling you what my doctor told me with my foggy little mind. When in doubt check it out with the pros sweetheart.

[janiedelite]

My poor cardiologist is still unable to get a response from my Mayo neurologist. He did prescribe me Imdur in the meanwhile which is a long-lasting nitro, with regular nitro for breakthrough. I can't wait to start taking it. I'm so tired of this chest pain. I haven't taken the mestinon since Saturday morning but still have quite a bit of chest pain, so maybe it's not connected. I did call my neuro's office and left a message that I'm stopping mestinon for now.

The nitro does worsen my orthostatic intolerance, but I told the cardio that I don't care if I have to do everything lying down as long as this chest pain is relieved!

[janiedelite]

So the Imdur (12-hour nitrate) does help. I can feel when it starts working because a cool sensation spreads across my chest. I can actually feel the spasms coming and going when either the Imdur or sublingual nitro wears off. Exercise doesn't make the chest pain worse, but any emotional stress sure does. And I have more tolerance with being upright while the nitrates are in effect, which is curious because nitrates drop BP and are usually contraindicated in POTS. I'll update the cardiologist tomorrow, and hopefully he'll have talked with Mayo and I can get on a 24-hour medication to keep my vessels dilated.

[erik]

Interesting. I hope they can collaborate and get something that works well overall.

[ramakentesh]

check with your doc as soon as possible as you seem so concerned. remember here you are gettin what you pay for, free opinions. I'm just telling you what my doctor told me with my foggy little mind. When in doubt check it out with the pros sweetheart.

mmm.. I dont remember ever suggesting I was a doctor and I was never suggesting not for her to get professional medical advice.

That being said, my comment is right and I doubt your doctor could demonstrate otherwise.

[janiedelite]

mmm.. I dont remember ever suggesting I was a doctor and I was never suggesting not for her to get professional medical advice.

Hey, I appreciate all of the input I've gotten on this issue. I worked as an RN prior to becoming disabled from POTS and I firmly believe in collaborating with my physicians. But we all know how frustrating it can be when our doctors know there's something wrong with us, but don't know how to fix it. Any suggestions I bring to my docs as a result of your input will just be suggestions. In the end, I'll follow the doctor's advice regardless.

I don't want to put words in her mouth, but I took BellaMia's advice as a concerned response to my prior post complaining of persistent, increased chest pain. I should have included in that post that I was waiting for the dr's office to open so I could give them a call.

Anyway, I appreciate all of your input! I called the cardio today to update him on the Imdur. My chest pain is 3 to 6 on a 0-10 scale without the Imdur, and 0 to 4 out of 10 when it's in effect, and I'm still taking 3-4 nitro sublinguals for breakthrough pain. He told me to double my dose and call him back. It's so nice to work with a doctor who's not afraid of my symptoms and who will try anything to help.

I still don't think he's gotten a call back from the Mayo neurologist. I'm pretty disappointed about that.

I hate how disabling this pain has become. Emotional stress really worsens it, along with things like a ringing phone or my dogs barking. My mom has cancer and needs my help sorting through insurance issues, but it's too stressful for me right now. I hate saying no. I feel helpless. At least I have my helpful hubby who can sort out the insurance issues with her this weekend. I'm only 36-years-old and I feel like I'm 80 sometimes. And after this recent elevation in troponin, I can't help being concerned about the effects this chest pain might be having on my heart. Thank you for all of your support.

[erik]

It is neat (in a very geeky way) that the 3 stages of beta-adrenergic vasodilation are covered nicely by various responses here! The nitrates trigger a NOS release via mitochondrial enzymatic action... the NO/NOS cascades to induce cAMP increase (who's reuptake is the target of the PDE inhibitors like Viagra)... and the cAMP adjusts the calcium-ion channels that come later and sort of do the "work" (and the calcium channel blocker meds tamper with that gently, like norvasc and the like)! It seems like the "collective wisdom" of the board has nice breadth & symmetry!

Anyway, enough geeking out! I came across this which might be another option if the nitrates peter out or docs get uncomfortable (there are always pro's & con's with meds, of course). I assume I snagged & bookmarked it from firewatcher's post a while back:

Symptom improvement in postural orthostatic tachycardia syndrome with the sinus node blocker ivabradine

Anyway, ivabradine is potentially used for angina pectoris. Might be a study a doc could comment on if they haven't already noted it... assuming it applies to your situation. One could bend the notion of "stable angina pectoris" and say that the POTS vascular dysregulation is a substitute/explanation for an "exercise trigger" for example. But it would be important for a doctor to make that judgment call as to whether you have "stable" form or if something else is happening, of course.

I'm still fixated on the vein vs. artery thing, personally. If there were an imbalance sensitizing veins more than arteries, couldn't a totally normal vasoconstrictive signal sent out in response to orthostatic stress (as normal folks do within seconds of standing) turn into an overpressurization in the vascular bed, leaking & pooling via osmotic/oncotic disturbance, lack of return to heart, localized messenger attempts at counter-regulation (kinins, histamines, et. al.) with their side-effects, etc.? In a normal person, the arteries should constrict, which results in simple healthy redirection of blood, without the other side effects. Isn't this a semi-workable POTS hypothesis for some cases?

[firewatcher]

"I'm still fixated on the vein vs. artery thing, personally. If there were an imbalance sensitizing veins more than arteries, couldn't a totally normal vasoconstrictive signal sent out in response to orthostatic stress (as normal folks do within seconds of standing) turn into an overpressurization in the vascular bed, leaking & pooling via osmotic/oncotic disturbance, lack of return to heart, localized messenger attempts at counter-regulation (kinins, histamines, et. al.) with their side-effects, etc.? In a normal person, the arteries should constrict, which results in simple healthy redirection of blood, without the other side effects. Isn't this a semi-workable POTS hypothesis for some cases?"

Erik, the problem is that there are many "workable" hypotheses and that one is just as likely as any in certain cases! This is all "cool" in a geeky way, and would be even cooler if I didn't have it!

[janiedelite]

I have my follow-up appt with the cardiologist today. It's so hard to decide how much information to present. I must admit that when I was in the hospital and tried educating him about my dysautonomia, his eyes glazed over rather quickly. So I've re-read all your posts so that I can present knowledgeable discussion, but I don't think bringing research articles would be helpful. He didn't even want to read through any of my Mayo records. But he IS willing to try to help me, which is great because my last cardio (who was an EP also) said he didn't know how to help me anymore since I don't tolerate midodrine or florinef and had such wierd reactions to them. I guess I so want someone to try to prescribe SOMETHING, I'm willing to try anything, and don't want to scare him off. He mentioned trying me on a beta blocker that had some alpha 1 blocking also, which sounds great to me.

I've been closely watching my chest pain lately, and it seems I have 4 types:

1. Plain old costo-condritis/musculoskeletal pain from being in 2 car accidents. Nitro does not help.

2. Episodic, burning pressure that I've only had twice (first one sent me to the hospital where my troponin went up to 0.35). I haven't had this since I stopped mestinon 1 and 1/2 weeks ago. Nitro completely relieves this type of chest pain.

3. I have chest pain/burning/pressure along with flushing, fatigue, head pressure as a result of most any emotional stress. Nitro does help this somewhat.

4. The more dull, tight chest pain I get whenever I stand up as a result of OI. Believe it or not, nitro actually helps this a bit.

I'm bringing this list with me (along with my handy notebook of medical records) and if he wants to further discuss the mechanisms behind my chest pain (or if I disagree totally with his theories) then I've got all of the info from this post in my arsenal. Thanks, everyone! This is been the most informative thread I've ever read.

[janiedelite]

I had a great appointment with this cardiologist today!!! This was a perfect example of docs who admit they don't know how to treat dysautonomia, but who will research and make every effort to help anyway. He spoke with the Mayo neurologist's secretary today, who explained that the neuro hadn't called him back because of the extreme weather as of late but that as soon as the weather clears the neurologist will call him. This cardiologist has been calling every other day for 2 weeks now on my behalf. He also spoke with a partner who's an EP cardio and they agreed that POTS is a real problem that requires empirical treatment. He read my Mayo notes and said that he gets concerned when a norepi level doubles, but the fact that mine more than quadrupled while standing is rather alarming. (first time anyone's taken this seriously ). He was adamant that he will try to help me, and knowing that I react oddly to medications he's starting me on "baby" doses, one med at a time. First we're trying coreg/carvedilol, which is a beta 1 and 2 and alpha blocker.

He's also keeping me on as needed nitro sublingual tablets, but since this is a non-selective vasodilator he wants to try various meds to see which receptors to block based on my responses.

Yay!!! Woohoo!!!!

[mkoven]

great news! keep us posted!

[janiedelite]

Well, it looks like carvedilol is not the drug for me! I struggle with Raynaud's-type issues since I've gotten POTS, and 5 hours after taking this med my feet are very cold, slightly painful, and a bit dusky. I'm watching them carefully. As a nurse, I know how to check peripheral bloodflow and I'm not in trouble. It turns out that beta blockers can exacerbate Raynaud's spasms. The doctor did mention to watch for this side effect, knowing my prior issues with poor circulation.

Otherwise, I really like the alpha-blocking effects of coreg. No chest pain/anxiety/chest and head pressure. But it has increased my fatigue and shortness of breath slightly. However, I'd still take this drug just for the reduced adrenaline if I didn't end up with these cold feet.

I called the cardiologist's office to let them know. I told the nurse to tell the doctor I want to keep trying different meds, so hopefully he'll call something in soon.

[erik]

Boy it's a pickle. Pluses & minuses to about anything.

Kind of a different topic, but both POTS & Raynaud's can be "secondary"... are there signs of any of the common "primaries"? I don't recall if you've scoped them out... things like Sjogrens, lupus, etc. Pardon me if I am forgetting prior information.

"Erik, the problem is that there are many 'workable' hypotheses and that one is just as likely as any in certain cases"

True. On the other hand, if it were "as likely" that would be way cool! I'd generally expect it to be "easily disproved" or the like I do like the 2 redeeming qualities of a) being really simple (though incomplete of course), and being custom crafted to the thread topic. It would be nifty if thankful bumped into a helpful insight for a particular POTS presentation. With some scouring though, the only drug with similar venous vs artery property to nitrates is a diuretic... theorized to do that magic via prostaglandins. Not much to go on (and to be cautiously separated between "theories" and "practice" of course).

[firewatcher]

Boy it's a pickle. Pluses & minuses to about anything.

Kind of a different topic, but both POTS & Raynaud's can be "secondary"... are there signs of any of the common "primaries"? I don't recall if you've scoped them out... things like Sjogrens, lupus, etc. Pardon me if I am forgetting prior information.

"Erik, the problem is that there are many 'workable' hypotheses and that one is just as likely as any in certain cases"

True. On the other hand, if it were "as likely" that would be way cool! I'd generally expect it to be "easily disproved" or the like I do like the 2 redeeming qualities of a) being really simple (though incomplete of course), and being custom crafted to the thread topic. It would be nifty if thankful bumped into a helpful insight for a particular POTS presentation. With some scouring though, the only drug with similar venous vs artery property to nitrates is a diuretic... theorized to do that magic via prostaglandins. Not much to go on (and to be cautiously separated between "theories" and "practice" of course).

The problem with prostaglandins is their nasty little buddy histamine! In MCADs you can get isolated release of prostaglandins and not histamine, so who knows what I'm releasing into my system. I am doing much better since returning to the MCAD antihistamine regimen, so I still suspect something "ain't quite right" there. I'd love to block the prostaglandins with Indomethacin and see if the headache also disappears, but NOBODY is going to prescribe that for me with a gfr as low as mine, even if the nice nephrologist says that my kidneys are OK. I don't want to take the chance that he's wrong and fry my beans! I guess I'll just have to up my hot dog intake to get my nitrates. I'd try a diuretic, but with a dx of diabetes insipidus, I'd probably dry up and blow away!

[erik]

Then the "kinins" come and crash the party too! Also, bind to histamine receptors but aren't histamines... and can nag the kidneys in their way while also doing peripheral things reportedly. (But the kinins are my personal fixation... and they're just messengers... can't shoot the messenger

Not too long ago when first reading about POTS I read a "treatment list" that as an example of how widely successful treatments can vary, cited "paradoxical effect" of a diuretic as successful POTS treatment. Crazy! I search every now and then in various ways but have not managed to find that web site (and it was otherwise redundant with more thorough POTS description resources, like DI-NET's for example). But it had something to do with a med that is usually a diuretic, acting paradoxically to cause fluid retention at a specific dose or circumstance. One for a nephro-philiac research scientist somewhere to decipher how that somehow works out! It's a great example of POTS med response (and kidney complexity), though.

[firewatcher]

Then the "kinins" come and crash the party too! Also, bind to histamine receptors but aren't histamines... and can nag the kidneys in their way while also doing peripheral things reportedly. (But the kinins are my personal fixation... and they're just messengers... can't shoot the messenger

Not too long ago when first reading about POTS I read a "treatment list" that as an example of how widely successful treatments can vary, cited "paradoxical effect" of a diuretic as successful POTS treatment. Crazy! I search every now and then in various ways but have not managed to find that web site (and it was otherwise redundant with more thorough POTS description resources, like DI-NET's for example). But it had something to do with a med that is usually a diuretic, acting paradoxically to cause fluid retention at a specific dose or circumstance. One for a nephro-philiac research scientist somewhere to decipher how that somehow works out! It's a great example of POTS med response, though.

Diuretics exert a paradoxical effect on the kidneys if they do not respond to vasopressin (nephrogenic DI.) Since there is a paradoxically low level of aldosterone in many POTS patients, it mimics N-DI and diuretics can cause fluid retention by activating that system. (I scared my first neph, can you tell? ) My kidneys respond well to vasopressin, I just don't make enough of it!

We can't shoot the messenger, but maybe we can tie him up and delay the message??

Renin-Aldosterone Paradox in POTS patients

Edited December 11, 2009 by firewatcher

[janiedelite]

Kind of a different topic, but both POTS & Raynaud's can be "secondary"... are there signs of any of the common "primaries"?

I've had everything checked by my docs here and at Mayo. I've always thought there was an underlying disorder. My mom came down with carcinoid syndrome at my age, but I'm negative for that so far.

And I agree with Firewatcher that in most of our cases we can't shoot the messenger but we can delay the message, so to speak. My mom doesn't want me to end up having carcinoid syndrome (and I don't either, but I really don't want to be sick at all). But at least with carcinoid, it has octreotide and other somatostatin analogs to directly counteract the carcinoid tumors.

We are complicated cases. None of our doctors have time to ponder the intricacies of our illnesses. I love my docs because they are willing to work with me and at least listen to my ideas regarding my illness and explain to me their reasoning behind treatment decisions.

These cold feet are just cool now, and the cardiologist said to try to take the coreg at bedtime. I have worse exercise and orthostatic tolerance with this med (fatigue, nausea, short of breath), but I love the decrease in chest pain/tightness, anxiety, and other alpha responses.

Now I need to re-read all of your recent posts several times so I can comprehend your thoughts!

[Notgivinup]

Wow, sure wish I could understand more of this conversation. I don't think even my non-POTS brain could grasp what you guys know.

I think you guys may be the ones to figure this stuff out. I wish you could all work right along side Grubbs, Stewart, and the others.

I'm sure they'd benefit enormously from your input & ideas/thoughts.

[janiedelite]

It would be nifty if thankful bumped into a helpful insight for a particular POTS presentation. With some scouring though, the only drug with similar venous vs artery property to nitrates is a diuretic... theorized to do that magic via prostaglandins. Not much to go on (and to be cautiously separated between "theories" and "practice" of course).

I still like how the nitro sublingual tabs make me feel even more than the carvedilol, in spite of the headache that results. No magic bullet yet, but this doctor seems determined to keep chipping away at my symptoms so I'll keep you posted.

[ramakentesh]

Butchers broom is a diuretic that helped my POTS amazingly for about 10 days - although like everything else it also made me jittery as all ... I just drank more.

POTS is a paradox - think about it - your wired, but your tired, you drink some caffeine and you feel better, so you drink some more and you feel worse, you take some licorice or florinef and you feel a bit better, so you take more and you get a migraine - its like trying to get a balance on a knife edge and never actually managing it...

Add the reactive nature of Ankylosing Spondylitis in my case - certain foods and things trigger it to relapse as well - it flares up like POTS does in my case.

Now excuse me while I smoke a cuba cigar with a friend which I will undoubtedly pay for for a week and I know its evil but its been a challenging week. LOL.

Stewart/Medows theory about the renin/ald paradox is that its cause by elevated angiontensin II levels rather than the opposite as suggested in material from Vandy. They even found the gene that stops the ACE 2 mechanism from working. Looks pretty tidy.

[Rene S.]

Ugh... this chest pain is really getting to me. I tried not taking nitro last night, but just took a bit of vicodin and around 10pm I began to feel wierd, cold and tingly and spacey alternating with the deep aching chest and jaw pain, like I did last Tuesday prior to going to the ER. My BP was 120/60 at 9pm but by 10:30 was 141/95 standing and lying. So I took a nitro and got immediate relief. But since last Tuesday's similar episode resulted in elevated troponins, I was afraid to go to sleep in case I wouldn't wake up in time to get to the hospital if something really bad was happening. I really need a better solution than the nitro tablets which only help for an hour or 2. I just know the standard protocol when you call the doctor with symptoms like mine and they send you to the ER. But I really need some relief.

Hi. I know someone on the boards suggested the possiblity of prinzmetal's angina,or variant spasms. You have classic symptoms, especially since they go away with the nitro. Unfortunately, which I found out for myself, that you can have perfectly normal ekgs, stress tests, etc. The spasms usually occur during rest, and may result in higher troponin levels which I have experienced myself. Some times I can go months without them. I also found that beta blockers unfortunately made them worse. Drs. recommend calcium channel blockers and sometimes imdur a long acting nitro.

I'm sorry I found your posting so late. And the sad part - most drs don't know anything about prinzmetal's/variant spasms, or the think that it's not happening to you.

There's a great wbsite called Inspire.com and if you click on women's heart disease and type in prinzmetal's you will find many of your symptoms.

Good luck I know it's rough going through it myself.

Best,

Rene

[janiedelite]

Hi Rene,

Thanks for your reply! I've read a lot of your posts about Prinzmetal's angina. I did ask the cardiologist if he thought that was my problem while I was in the hospital and his response was "that's really hard to diagnose." The he said you have to have a cardiac cath and have a documented spasm while being cathed.

Whatever! I just want to feel better, which I do on the carvedilol. Not perfect, but I don't have noticeable chest pain unless I'm under stress. It hasn't seemed to worsen my OI any either. I keep the nitro in case I need it, but I've only had to take it a couple times in the last month (and I was taking it 5+ times a day before).

[iheartcats]

Wow I just read through this thread as best I could.

I have pooling (per the specialist I saw) but my hands get so cold. People comment on that! It's one reason we moved from a frigid climate!

But, a Beta Blocker still helps me (Inderal/Propranonol)...should it? But it does. I've never tried Nitro and I only get some minor chest pain.

Thankful - your chest pain sounds awful. Is it fairly new with the POTS or always since you've had it?

[Rene S.]

I know how frustrating it is to get a diagnosis of Prinzmetals I had a cath, no spasms. What do they expect, we should carry an ekg machine 24 hrs? Of course when I do the holter nothing shows up. It's frustrating and no one will give me a definitive. I was thinking of starting back on the coreg but I remember the few times I took it I had horrible palps.

I hope you find your answer. If the nitro is helping you, ask for imdur or a patch which I think someone else mentioned.

Please feel free to email me if you'd like.

ruekat@comcast.net

Rene

[Rene S.]

I know how frustrating it is to get a diagnosis of Prinzmetals I had a cath, no spasms. What do they expect, we should carry an ekg machine 24 hrs? Of course when I do the holter nothing shows up. It's frustrating and no one will give me a definitive. I was thinking of starting back on the coreg but I remember the few times I took it I had horrible palps.

I hope you find your answer. If the nitro is helping you, ask for imdur or a patch which I think someone else mentioned.

Please feel free to email me if you'd like.

ruekat@comcast.net

Rene