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Please I don't want any medical advice. I just need your experiences with this med if you ever were on it.
My EP just gave me samples (Northera) which is $3200 for one month.100mg 3X daily.
I told him I have Hyperadrenergic pots, but I also have NMH (Not often), which is confusing.
I had been waiting to see him for six months, and finally I saw him couple days a go.
I used to see his partner in the same office, but he has moved to another state. But he has all my test results and medical history.
I told him I am concerned, because I already have a messed up BP (180/110 at times), and my catecholamine study has shown high norepinephrine (1400) on standing, but he said let's give it a try.
Now, I am scared to take it because I did my own research; Northera rises norepinephrine levels.
Thanks in advance.
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I did not do well with Northera and I have low blood pressure but my old cardiologist blindly prescribed this to "raise my blood pressure". I don't do well with vasoconstrictors though, not at all, but this was a harsh medication and very expensive and it does raise blood pressure plus it made my adrenaline worse. After I took it I'd get more dizzy and tired and fall asleep then wake up worse than before I took it. I tried for a week and I was just in a crashed state the entire time and had to quit. I only took it 1x daily. I am very sensitive to meds, supplements, and vitamins, but after researching  I also concluded that this should've never been prescribed for me personally. This is only my personal experience and I cannot speak for others. But like all stimulants it had the opposite affect and made me crashed and incredibly tired b/c of the hormones and chemicals it raises in the brain.  

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My experience was very much like that of @CallieAndToby22.  My BP runs very low, and my neurologist felt this would help raise it. When I took it, I felt "buzzy," shaky, and overstimulated, and not at all well, and then I felt exhausted after it wore off. I have neurally-mediated hypotension, not POTS, and I'm also ridiculously sensitive to medications, so I wasn't sure that Northera would help me, but I'm glad I had an opportunity to try it.

I find that the things I have tried to raise my BP (Ritalin, Adderall, Midodrine) all have had similar effects: my BP might go up temporarily while the medication is in effect, but I don't feel well at all, and I crash very badly afterwards. 

If you do decide to take it, good luck, and I hope you find something that helps!

 

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Yes, Northera raises norepinephrine levels, at least that was my understanding. My doctor took me off of Northera because my norepinephrine levels got too high. My impression of how this drug was received by cardiologists is that 'It is a cure for POTS.' That is all most understand. What kind of POTS? How does it work? What if you already have high levels of norepinephrine? Can your body get too much norepinephrine? What happens then? If you aren't comfortable taking this med, don't take it yet. Call the doctor back. Ask for a telemed appointment to discuss these kinds of things with them. If you don't believe they understand how it works and what kind of POTS you have, go get another opinion. You should feel comfortable advocating for yourself because nobody else will, although, I completely understand your hesitation. I don't know how to answer your question. If I was faced with the same thing, I would ask more questions. It may end up being exactly what you need, but these are important things to sort out. Also, when you get those answers, please let us know. I think there is still quite a bit of mystique surrounding this drug. Good luck.

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I agree with KiminOrlando about asking more questions. If you or the doctor aren't clear on why you are taking it, and what the risks and possible benefits are, then that is a bad situation.

I was prescribed hydrocortisone with the same vague "Let's give it a try" and it didn't go well. I am fine now, but going into it uninformed wasn't good. Also, subsequent doctors now ask me why I was prescribed it and I have to say "I don't know".

Your doctor may have thought things through (mine didn't), but you won't know until you can discuss it further.

You obviously tried to ask questions and didn't get any good answers, so it will be up to you to be a bit assertive. It's not easy. They should do it, but sometimes we have to fill the gap.

 

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7 hours ago, KiminOrlando said:

If you aren't comfortable taking this med, don't take it yet.

I think this is excellent advice.  Our 'cases' are often incredibly complex and while we pay enough and have reason to hope (even expect) that our doctors will have a handle on the details, my experience is that much more often than not, they fail to comprehend all the bits and pieces.  Which it sounds most definitely like has happened in your case, @Heartbroken.  In general, unless something makes sense to me in light of the specifics of my body, I am not going to take it.  I ask for explanation--in your situation, how is a drug that raises BP and norepinephrine not dangerous to someone for whom both are high?--and unless I really understand why it isn't risky or why it should produce a desired result I decline.  

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@Heartbroken - I too have HPOTS and NMS ( neurally mediated syncope, essentially same as NMH ). In my case I have both high and low BP, with low BP leading to presyncope and syncope and high BP so severe that it can cause seizures. Since the BP is so unpredictable it is very difficult to control this with medication, and I had to try many drugs before the right combo was found. However - after reading up on Northera I also would be hesitant to take it. It can cause supine hypertension, which some meds caused for me ( for example clonidine ). It pobably would be a good drug to take for NMH alone but I believe it should be contraindicated for anyone who has high BP ( as you do ). 

I agree - request another appointment or phone call to your doctor and ask him/her to explain what the expected outcome of taking this drug is, and why you should take it when you have periods of high BP. It is possible that your doc does not understand that someone can have two such completely opposite syndromes and therefore chooses to only treat the one. 

You are right in questioning this. 

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10 hours ago, targs66 said:

My experience was very much like that of @CallieAndToby22.  My BP runs very low, and my neurologist felt this would help raise it. When I took it, I felt "buzzy," shaky, and overstimulated, and not at all well, and then I felt exhausted after it wore off. I have neurally-mediated hypotension, not POTS, and I'm also ridiculously sensitive to medications, so I wasn't sure that Northera would help me, but I'm glad I had an opportunity to try it.

I find that the things I have tried to raise my BP (Ritalin, Adderall, Midodrine) all have had similar effects: my BP might go up temporarily while the medication is in effect, but I don't feel well at all, and I crash very badly afterwards. 

If you do decide to take it, good luck, and I hope you find something that helps!

 

Yea all the stimulants just lead to me crashing very very badly. My cardiologist told me nothing about this drug and just said she's prescribing something to "help raise blood pressure" and I took It without researching and I wish I had done what you're doing @Heartbroken which is asking questions and researching and investigating. I asked my local cardio the mechanism of action and she said, "raises blood pressure". Hopefully you can push for more answers. @targs66 I still don't have definite diagnoses regarding dysautonomia but my blood pressure it so low, I was wondering if you've found anything to help that? I have a lot of of syncope as well. 

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8 hours ago, CallieAndToby22 said:

 @targs66 I still don't have definite diagnoses regarding dysautonomia but my blood pressure it so low, I was wondering if you've found anything to help that? I have a lot of of syncope as well. 

Sadly, I really haven't found anything that makes a massive difference. I think that part of my problem is that sometimes my BP can be reasonable (say, 96/65), and I feel at my absolute worst for no apparent reason, so there's obviously something going on that's making me ill other than the low BP.  I do all the recommended protocols (eat little and often, stay hydrated, drink salt water, wear compression socks, etc.) but on bad days I can't say those seem to make me feel much better. 

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CallieAndToby22 / targs66KiminOrlandoSarah TeeJyotiPistol

I can't thank each one of you enough for all your sincere replies. You guys gave me goosebumps for all your knowledge, I wish if those 18 cardiologists/ Electrophysiologists whom I have been to knew what you all know. Thankfully, I have this privilege which I can send messages to all my providers.

I wrote for him:           Dear Dr. (.......)  

I was diagnosed by Dr. Italo Biaggioni, M.D. Professor of Medicine in Vanderbilt with (Hyperadrenergic pots) and that is true, because both of my blood pressure and heart rate will elevate when I stand. And as you know that is due to high Adrenalin.
I was given the same diagnoses by Dr. Ahern in California and by many other EP s. I have provided you all their reports and tests.
My norepinephrine (in standing position) is high (Last test was very high that made my Dr. suspects Pheochromocytoma, which was ruled out later.
Now, my question is, Northera increases norepinephrine and I already have high levels of it, do you think it will be right to take this boosting norepinephrine medication?
I haven't taken it yet because I am concerned.
It is true that I have another condition under the autonomic dysfunction's umbrella, which is neurally mediated hypotension. But this condition in my case is not on regular bases. It happens once in a while.
Best regards.
I will update you all as soon as I hear from him.
Note for Moderators:
Delete my letter if not allowed. 
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I think that’s a very balanced and polite letter. Good for you for being your own advocate. I have similar symptoms, hyperadregenic POTS with NMH and supine HTN and my cardiologist prefers to treat my usually high BP with guanfacine ER twice a day (for high norepinephrine), carvedilol in the evenings for supine hypertension and a tiny dose of ivabradine for HR in the morning. Ivabradine also raises norepi but I do ok on 2.5mg once a day. I have found that an abdominal binder works very well for the OH if I plan to be upright for long because my BP will drop 30 points on standing, then goes up for about 5-7 minutes and then starts to go lower and lower after that. It took years and a ton of meds to find a combination that generally works but weather/flares/overdoing it etc throw it off. PM me if you want to know the brand of abdominal binder. No prescription required! 

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@Heartbroken--glad you wrote that letter.  It is a very responsible stance.  It is so easy, especially when we feel overwhelmed with symptoms and exhaustion to just trust someone in authority.  But you are taking care of yourself by asking the obvious questions and not acting until you feel like the recommendation is right for you and your body.

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2 hours ago, p8d said:

I think that’s a very balanced and polite letter. Good for you for being your own advocate. I have similar symptoms, hyperadregenic POTS with NMH and supine HTN and my cardiologist prefers to treat my usually high BP with guanfacine ER twice a day (for high norepinephrine), carvedilol in the evenings for supine hypertension and a tiny dose of ivabradine for HR in the morning. Ivabradine also raises norepi but I do ok on 2.5mg once a day. I have found that an abdominal binder works very well for the OH if I plan to be upright for long because my BP will drop 30 points on standing, then goes up for about 5-7 minutes and then starts to go lower and lower after that. It took years and a ton of meds to find a combination that generally works but weather/flares/overdoing it etc throw it off. PM me if you want to know the brand of abdominal binder. No prescription required! 

Thanks for your input. I have been using abdominal binder for decades. Hope you continue feeling good with all those meds. 

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1 hour ago, Jyoti said:

@Heartbroken--glad you wrote that letter.  It is a very responsible stance.  It is so easy, especially when we feel overwhelmed with symptoms and exhaustion to just trust someone in authority.  But you are taking care of yourself by asking the obvious questions and not acting until you feel like the recommendation is right for you and your body.

Thanks dear. 

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14 hours ago, Heartbroken said:

CallieAndToby22 / targs66KiminOrlandoSarah TeeJyotiPistol

I can't thank each one of you enough for all your sincere replies. You guys gave me goosebumps for all your knowledge, I wish if those 18 cardiologists/ Electrophysiologists whom I have been to knew what you all know. Thankfully, I have this privilege which I can send messages to all my providers.

I wrote for him:           Dear Dr. (.......)  

I was diagnosed by Dr. Italo Biaggioni, M.D. Professor of Medicine in Vanderbilt with (Hyperadrenergic pots) and that is true, because both of my blood pressure and heart rate will elevate when I stand. And as you know that is due to high Adrenalin.
I was given the same diagnoses by Dr. Ahern in California and by many other EP s. I have provided you all their reports and tests.
My norepinephrine (in standing position) is high (Last test was very high that made my Dr. suspects Pheochromocytoma, which was ruled out later.
Now, my question is, Northera increases norepinephrine and I already have high levels of it, do you think it will be right to take this boosting norepinephrine medication?
I haven't taken it yet because I am concerned.
It is true that I have another condition under the autonomic dysfunction's umbrella, which is neurally mediated hypotension. But this condition in my case is not on regular bases. It happens once in a while.
Best regards.
I will update you all as soon as I hear from him.
Note for Moderators:
Delete my letter if not allowed. 

Good job! 

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Fantastic letter. I saw Dr Biaggioni and send him questions from time to time which he or his NP answer. Have you asked them about Northera? I’m sure they could give great input. Best of luck

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Good for you, @Heartbroken

I have got two important appointments coming up, so I will be looking back at this thread to try to be prepared, and also to remind myself that you can always go back to ask questions or get clarification.

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23 hours ago, CJ65 said:

Fantastic letter. I saw Dr Biaggioni and send him questions from time to time which he or his NP answer. Have you asked them about Northera? I’m sure they could give great input. Best of luck

I saw Dr. Biaggioni back in 2012 and I no more have access to him to send him a question. I am pretty sure he will not approve this medication for me. Plus I have been on Eletriptan for 16 years for migraine and I am still on it, but in the information I read about Northera literary says: Avoid Eletriptan if you take Northera. Do you believe that? how in the world he wants me to take it then?

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11 hours ago, Sarah Tee said:

Good for you, @Heartbroken

I have got two important appointments coming up, so I will be looking back at this thread to try to be prepared, and also to remind myself that you can always go back to ask questions or get clarification.

Good luck for you Sara Tee.

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I just began droxidopa yesterday and appreciate all the comments.  I want to share that I was able to get it at my Richmond, VA COSTCO for $116 for a 30 day supply 100mg TID. This was after someone's comment that COSTCO might be cheaper.  I have Medicare which quoted me $1125 for same quantity.

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