Droxidopa/Northera anyone?

[andybonse]

Hey,

So as most of my symptoms correlate with low blood pressure even though my numbers are perfect I'm going to ask to try droxidopa.

Anyone tried it/ on it? Experiences?

I tried Midodrine, but made me worse in my head so want something that's not directly globally vasoconstricting.

[Guest KiminOrlando]

Is your norepinephrine low? If your norepinephrine is not low, I don't know if it will help.

I tried it and it was great for a while, then something changed with me and I started having BP spikes. They took me off. 

I did feel better on the drug, energy, brain fog, tachycardia, everything, but BP spikes are scary and strokes run in my family.  I miss how I felt on that med. The odd thing that they can't explain is that my norepinephrine never went back down to its previous lows. It was like doing a reset to your adrenals with a corticosteroid except this makes no sense. My 'results' were reported back to the company in case someone else has a similar reaction and it bears further study. Midodrine didn't work for me at all. It gave me debilitating headaches- the kind where you go to bed in a dark room, holding your head and don't leave for days. It took me 4 days to figure out it was the midodrine. I would rather be tachycardic and semiconscious on the floor. 

The med is very expensive and this seems to be the stumbling block for most people. Even with insurance coverage, it is typically considered a tier 5 specialty drug and you pay a percentage of its actual cost. I had been approved for financial assistance or I could never have afforded it. That program has since been terminated. Just to give you an idea (maybe you already know), I think I was able to get some numbers and the best I could tell, it looked like that med was roughly $50k US per year. I would be interested to find out what numbers other people found. This is the total price- what insurance plus patient pays.

I hope this med works for you and you are able to gain reliable access to it. 

[andybonse]

I believe it is of normal levels it me, but I think it will help as it will increase the levels which should increase bp? I think!

I am in the UK, so cost is not a problem, we are very lucky with the NHS!! 

Would be nice not to feel lightheaded almost constantly, I could up my florinef after it stopped working, but worrying about potassium levels and getting sick and having to worry about potassium levels, hmm feel better and worry 24/7 or dont worry but feel crappy. Ugh.

[Guest KiminOrlando]

It is supposed to make more norepinephrine, and too much norepinephrine is a problem. Do they think your receptors are damaged and that is why your norepinephrine is normal but you are still having problems? 

I think in your case they will likely have you monitor your BP and keeping a log multiple times a day. 

Maybe someone else with normal norepinephrine can share their experience. 

Good luck with Northera. I hope it works for you and I'm glad money isn't going to be a factor in accessing it.

[andybonse]

I see! What sort of problems? Just Higher BP ? 

My receptors are most likely fine, I have recently done some antibody tests that relate to POTS and had 6 positive so something autoimmune is definitely going on with me I think.

[Guest KiminOrlando]

I'm not a doctor, so I defer to their expertise. I can only tell you what happened to me and the theory as to why. Northera is also known as Droxydopa. Droxydopa converts to norepinephrine (my understanding). My natural norepinephrine was low, but not terribly low. They thought my receptors were damaged (example- only catching 25% of the norepinephrine tossed their way). The fix was to throw more norepinephrine so that even with it catching only 25% the actual amount went up. It started ok. I got up to 300mg (max is 600mg), but instead of staying steady, I would spike a BP for 15 minutes that was at stroke level. It wasn't every day, but it was enough that they decided not to play with it. They retested my norepinephrine and it was high, so they know for a fact the Droxydopa impacted my norepinephrine levels. In me they found that there was a variable they couldn't account for. Did my body start making more norepinephrine in addition to converting the Droxydopa? Does my norepinephrine level go up and down randomly so Northera dosing is impossible? Did Northera do something to my receptors to make them start to work better? 

I would encourage you to get a good BP machine and a notebook to write your numbers down. I checked it in bed, sitting, and standing, three times a day every day and logged how I felt and what I had been doing that day. If I started having episodes or weird symptoms, I checked BP and logged it too. Most likely this log will be something your doctor can use to justify further treatment and let them know when it is safe to increase dosage or when you have attained the correct levels.

I'm glad I tried Northera even though it didn't end up working for me. I hope you have great luck with it.

[bombsh3ll]

How and where did you get your noradrenaline levels tested in the UK? I would really like to get mine checked. I feel mine are high and although I feel presyncopal all the time my BP is actually on the high side not low. I have had two normal urinary catecholamine collections to exclude phaeochromocytoma, but would like plasma levels checked. 

Good luck with the droxidopa if you get it. Another possible option is ritalin. I've considered it but it may not be the best fit for me if I'm hyperadrenergic. 

B x

[andybonse]

2 hours ago, bombsh3ll said:

How and where did you get your noradrenaline levels tested in the UK? I would really like to get mine checked. I feel mine are high and although I feel presyncopal all the time my BP is actually on the high side not low. I have had two normal urinary catecholamine collections to exclude phaeochromocytoma, but would like plasma levels checked. 

Good luck with the droxidopa if you get it. Another possible option is ritalin. I've considered it but it may not be the best fit for me if I'm hyperadrenergic. 

B x

Prof Mathias in London arranged the tests at their autonomic lab, they did it while they did the TTT. They take the blood while your supine and then upright, so pretty simple test to do! 

Yeah, I'm lightheaded all the time now, it's getting me down I just feel rubbish all the time, can't think because of it etc. Prof Mathias did mention a stimulant drug, forgot the name, I'll discuss it with him again. 

4 hours ago, KiminOrlando said:

I'm not a doctor, so I defer to their expertise. I can only tell you what happened to me and the theory as to why. Northera is also known as Droxydopa. Droxydopa converts to norepinephrine (my understanding). My natural norepinephrine was low, but not terribly low. They thought my receptors were damaged (example- only catching 25% of the norepinephrine tossed their way). The fix was to throw more norepinephrine so that even with it catching only 25% the actual amount went up. It started ok. I got up to 300mg (max is 600mg), but instead of staying steady, I would spike a BP for 15 minutes that was at stroke level. It wasn't every day, but it was enough that they decided not to play with it. They retested my norepinephrine and it was high, so they know for a fact the Droxydopa impacted my norepinephrine levels. In me they found that there was a variable they couldn't account for. Did my body start making more norepinephrine in addition to converting the Droxydopa? Does my norepinephrine level go up and down randomly so Northera dosing is impossible? Did Northera do something to my receptors to make them start to work better? 

I would encourage you to get a good BP machine and a notebook to write your numbers down. I checked it in bed, sitting, and standing, three times a day every day and logged how I felt and what I had been doing that day. If I started having episodes or weird symptoms, I checked BP and logged it too. Most likely this log will be something your doctor can use to justify further treatment and let them know when it is safe to increase dosage or when you have attained the correct levels.

I'm glad I tried Northera even though it didn't end up working for me. I hope you have great luck with it.

Sounds scary, don't want a stroke on top of this!!

[Pistol]

 

3 hours ago, bombsh3ll said:

How and where did you get your noradrenaline levels tested in the UK? I would really like to get mine checked. I feel mine are high and although I feel presyncopal all the time my BP is actually on the high side not low. I have had two normal urinary catecholamine collections to exclude phaeochromocytoma, but would like plasma levels checked. 

Good luck with the droxidopa if you get it. Another possible option is ritalin. I've considered it but it may not be the best fit for me if I'm hyperadrenergic. 

B x

Bomsh3ll - I am hyperadrenergic and take Ritalin with good results. My sister is hyperadrenergic as well and does wonderful with Modafinil. 

[andybonse]

2 minutes ago, Pistol said:

 

Bomsh3ll - I am hyperadrenergic and take Ritalin with good results. My sister is hyperadrenergic as well and does wonderful with Modafinil. 

Modafinil is what my doctor recommended, but the risk of heart arrythmias put me off..lol

[bombsh3ll]

18 hours ago, andybonse said:

Prof Mathias in London arranged the tests at their autonomic lab, they did it while they did the TTT. They take the blood while your supine and then upright, so pretty simple test to do! 

Do you pay to see him privately and if so how do you rate him? Is it very expensive to see him and have tests there? I was pointed his way by another clinic when I enquired about getting a transcranial doppler to assess cerebral blood flow - apparently he has access to TCD. I have considered making an appointment with him but been put off by others' experiences. One lady paid over £300 for an hour and he spent most of it asking about her marriage/divorce as if implying her problems were psychological. I would really like to hear an up to date perspective on Prof Mathias. I have an appointment at UCLH in 4 weeks and want to have an idea of other options in case I get nowhere there. 

Do let us know what the stimulant drug is and if it works (if you try it)!

18 hours ago, Pistol said:

Bomsh3ll - I am hyperadrenergic and take Ritalin with good results.

That's so good to know! I don't have a formal classification as "hyperadrenergic" as I've never had supine-upright catecholamines drawn -  on the NHS you are extremely lucky if you get even a basic tilt or stand test and luckier still if the person interpreting it has heard of POTS and isn't just looking for BP drops or arrhythmia - but based on my symptoms and hypertension I "feel" as though I am hyperadrenergic. The hyperadrenergic state could however be secondary to volume depletion. I tried to get my blood volume measured but technical problems spoiled the test so I didn't get a meaningful result. 

I wonder if/how ritalin would help me given that I already seem very vasoconstricted - cold pale extremities, no veins etc. Specifically how does it help you? I am looking for increased cerebral blood flow ie not to be presyncopal all the time, and to be able to stand up (or at least be able to sit upright comfortably without lightheadedness and headache). I am really interested in trying all options. I tried midodrine but it wasn't a good fit - higher BP (which I don't need), still presyncopal and squashed my heart rate. 

Did you try midodrine before ritalin? I am trying to work out if it would help someone who didn't do well with midodrine.

B x

[Pistol]

@bombsh3ll - yes, I did try midodrine and it was not for me. I tried also pyridostigmine, several BB's, … the Ritalin was prescribed for me because of severe fatigue and brain fog. I have vasoconstriction that leads to - proven on EEG - cerebral hypoperfusion resulting in syncope and seizures. When I collapse or seize usually my HR and BP go up severely. I also take guanfacine and it helps with both - HTN as well as cognitive issues. I have ADHD due to hyperadrenergic POTS. I also was just diagnosed with gastroparesis - which usually is from the parasympathetic dysfunction rather sympathetic. I take about 12 different meds. But the Ritalin does help, although I only take it in the am b/c if I take it past 3 pm I cannot sleep from it. 

[andybonse]

On 8/31/2018 at 8:32 PM, Pistol said:

@bombsh3ll - yes, I did try midodrine and it was not for me. I tried also pyridostigmine, several BB's, … the Ritalin was prescribed for me because of severe fatigue and brain fog. I have vasoconstriction that leads to - proven on EEG - cerebral hypoperfusion resulting in syncope and seizures. When I collapse or seize usually my HR and BP go up severely. I also take guanfacine and it helps with both - HTN as well as cognitive issues. I have ADHD due to hyperadrenergic POTS. I also was just diagnosed with gastroparesis - which usually is from the parasympathetic dysfunction rather sympathetic. I take about 12 different meds. But the Ritalin does help, although I only take it in the am b/c if I take it past 3 pm I cannot sleep from it. 

I always thought I may have cerebal hypoperfusion due to over vasoconstriction! Didn't know an EEG can prove this.

[andybonse]

On 8/31/2018 at 3:07 PM, bombsh3ll said:

Do you pay to see him privately and if so how do you rate him? Is it very expensive to see him and have tests there? I was pointed his way by another clinic when I enquired about getting a transcranial doppler to assess cerebral blood flow - apparently he has access to TCD. I have considered making an appointment with him but been put off by others' experiences. One lady paid over £300 for an hour and he spent most of it asking about her marriage/divorce as if implying her problems were psychological. I would really like to hear an up to date perspective on Prof Mathias. I have an appointment at UCLH in 4 weeks and want to have an idea of other options in case I get nowhere there. 

Do let us know what the stimulant drug is and if it works (if you try it)!

That's so good to know! I don't have a formal classification as "hyperadrenergic" as I've never had supine-upright catecholamines drawn -  on the NHS you are extremely lucky if you get even a basic tilt or stand test and luckier still if the person interpreting it has heard of POTS and isn't just looking for BP drops or arrhythmia - but based on my symptoms and hypertension I "feel" as though I am hyperadrenergic. The hyperadrenergic state could however be secondary to volume depletion. I tried to get my blood volume measured but technical problems spoiled the test so I didn't get a meaningful result. 

I wonder if/how ritalin would help me given that I already seem very vasoconstricted - cold pale extremities, no veins etc. Specifically how does it help you? I am looking for increased cerebral blood flow ie not to be presyncopal all the time, and to be able to stand up (or at least be able to sit upright comfortably without lightheadedness and headache). I am really interested in trying all options. I tried midodrine but it wasn't a good fit - higher BP (which I don't need), still presyncopal and squashed my heart rate. 

Did you try midodrine before ritalin? I am trying to work out if it would help someone who didn't do well with midodrine.

B x

That's strange as he's always been well into the medicine side of things with me, he does try to get to know you which I think is fantastic for a doctor, I just can't imagine him sat there for an hour talking about someones divorce lol. - I am seeing him tomorrow, so will keep you up dated.

[bombsh3ll]

22 hours ago, andybonse said:

I just can't imagine him sat there for an hour talking about someones divorce lol.

For numerous reasons women tend to fare more poorly than men in healthcare when it comes to erroneous psychological diagnoses, being seen as "neurotic" or "hysterical". Prof Newton shared her thoughts with me on why POTS & related conditions receive so little interest & research funding, & it had to do with the demographic typically affected. I'm glad this was not your experience though and am still very interested in going there. 

 

22 hours ago, andybonse said:

I am seeing him tomorrow, so will keep you up dated.

Please do! Have you ever had or been offered a transcranial doppler to assess cerebral blood flow? I was told his clinic has that facility. Also do you pay to see him and how much is it, if you don't mind sharing?  Hope the appointment went well. 

B x

[andybonse]

3 hours ago, bombsh3ll said:

For numerous reasons women tend to fare more poorly than men in healthcare when it comes to erroneous psychological diagnoses, being seen as "neurotic" or "hysterical". Prof Newton shared her thoughts with me on why POTS & related conditions receive so little interest & research funding, & it had to do with the demographic typically affected. I'm glad this was not your experience though and am still very interested in going there. 

 

Please do! Have you ever had or been offered a transcranial doppler to assess cerebral blood flow? I was told his clinic has that facility. Also do you pay to see him and how much is it, if you don't mind sharing?  Hope the appointment went well. 

B x

I see, that's really a shame. I'd of never of thought anything like that!

I've not been offered a transcranial doppler(I will ask for it at my further appointments), however today was fantastic. I am being referred to the autonomic unit, a doctor who Prof Mathias has trained and worked with who is very well into this illness, she is currently researching autoimmunity and antibodies, specifically MC3 Receptor Antibodies, of which I did a Celltrend Antibody test and was positive for 6 out of 11, so he was hoping I could see her in regards to being involved in the research I think and possible treatments like IVIG, so that's a HUGE step for me, this will probably include some autonomic tests as well further than what I've had.

I mentioned to him, how can I be light headed with perfect heart rate and BP when I'm sat down or even laid down and the first thing he said is the cerebral blood vessels can over constrict, bingo, would definitely make sense, especially when I felt like this and tried Midodrine I felt awful!

Also for my all over muscle twitches, rather than assuming it's just POTS, he is referring me for an EMG to see if anything is going on there.

I'd say that's the best appointment I've ever had! He's a fantastic doctor in my opinion!

Andy

[bombsh3ll]

 

11 hours ago, andybonse said:

I am being referred to the autonomic unit, a doctor who Prof Mathias has trained and worked with who is very well into this illness, she is currently researching autoimmunity and antibodies,

Wow that is great!!! Do you mean the autonomic unit at UCLH? That's where I'm going in 3 weeks. I am amazed there is someone in the UK taking autoimmunity seriosly as a cause. I had planned to ask them myself about doing the celltrend testing, but my concern about this was even if clear positive results came up, I doubted anyone in the UK would be interested or willing to treat it. 

B x

[andybonse]

7 hours ago, bombsh3ll said:

 

Wow that is great!!! Do you mean the autonomic unit at UCLH? That's where I'm going in 3 weeks. I am amazed there is someone in the UK taking autoimmunity seriosly as a cause. I had planned to ask them myself about doing the celltrend testing, but my concern about this was even if clear positive results came up, I doubted anyone in the UK would be interested or willing to treat it. 

B x

Yes I the UCLH! I've been before for a tilt test and other autonomic stuff it's quite good! I agree, we don't seem to have much of a research field in the UK which sucks! With your over cerebral vasoconstriction, what are your symptoms? I mean I lay down with a normal blood pressure and HR when I am light headed and I am still light headed! 

Andy

[bombsh3ll]

2 hours ago, andybonse said:

With your over cerebral vasoconstriction, what are your symptoms?

I have no way of knowing for sure if I have cerebral vasoconstriction, but my symptoms are constant lightheadedness even sitting with normal BP/HR, chronic headaches which I attribute to hypoperfusion, and presyncope when standing. I however do feel better (but not perfect) lying down.

I will ask about the autoimmunity research when there. I have EDS as well (hypermomobility type) but this was only diagnosed after and because of POTS. Otherwise I would have just accepted that I have "poor collagen" as I was not disabled in any way by it prior to POTS. I was worried they would just attribute it solely to EDS in my case and not look for anything else. I don't believe it is just due to lax vessels as it came on suddenly after a forceful valsalva. Surely venous laxity would develop insidiously?

May I ask how/where you got your blood centrifuged to send off to Cell Trend?

Thanks for all the helpful info, 

B x

[Pistol]

@andybonse - regarding your question about cerebral vasoconstriction: I have hyperPOTS with episodes of severe vasoconstriction caused by sympathetic overcompensation. When I get this then I get the following symptoms: cold hands/feet, chills, tremors, excessive yawning, confusion, slurred speech, syncope and seizures. I usually take seizures rather than syncope from vasoconstriction, syncope I take more if I get vasodilation. 

[bombsh3ll]

14 hours ago, Pistol said:

regarding your question about cerebral vasoconstriction: I have hyperPOTS with episodes of severe vasoconstriction caused by sympathetic overcompensation. When I get this then I get the following symptoms: cold hands/feet, chills, tremors, excessive yawning, confusion,

These are symptoms I identify with too, normal/high BP, sympathetic excess  - chest pain, non psychogenic sense of anxiety, shakiness, sweaty/chills, ice cold extremities but presyncopal, brain feeling very much starved of blood flow. 

What is your best treatment for this? I am thinking that even if I could get ritalin it may be the opposite of what I need for this. 

B x

[Pistol]

@bombsh3ll - once I get this bad it is difficult to stop. Sometimes retreating into a dark, quiet room and lying down helps. Medications do not help for these flares, but I take a ton to prevent them. I take diltiazem, carvelidod and guanfacine for the BP and HR, Ritalin for brain fog and Lexapro, these are my POTS meds. But when I get the above symptoms and cannot stop them then I have to get IV fluids. That fixes everything for me. ( I am getting a port next week and will be able to get fluids at home ). I know that you are having trouble getting them in the UK but if you find someone to order them you would be surprised how good they work!!!! --- Regarding the Ritalin - I thought this myself before starting it but it really works and I have no side effects. My specialist - Dr Grubb - wanted me to go on modafinil but my insurance does not cover that. 

[andybonse]

18 hours ago, bombsh3ll said:

I have no way of knowing for sure if I have cerebral vasoconstriction, but my symptoms are constant lightheadedness even sitting with normal BP/HR, chronic headaches which I attribute to hypoperfusion, and presyncope when standing. I however do feel better (but not perfect) lying down.

I will ask about the autoimmunity research when there. I have EDS as well (hypermomobility type) but this was only diagnosed after and because of POTS. Otherwise I would have just accepted that I have "poor collagen" as I was not disabled in any way by it prior to POTS. I was worried they would just attribute it solely to EDS in my case and not look for anything else. I don't believe it is just due to lax vessels as it came on suddenly after a forceful valsalva. Surely venous laxity would develop insidiously?

May I ask how/where you got your blood centrifuged to send off to Cell Trend?

Thanks for all the helpful info, 

B x

The constant light headedness is like me I'll be sat with a 120/70 HR 62 and feel awful lightheadedness, it's the worst. I can't think and when people are talking or sounds from tv etc really scramble my brain! Even when I lay down, yeah I get a nice relief but I'm still lightheaded and nausea, I do find that eating a large meal makes it go away for a while, strange?

Does gulping water, squeezing something or sneezing make you feel better at all for a very small amount of time?

I went to get a blood draw from someone private in her own home, she is a trained phlebotomist, it was £60. She also centrifuged it there and then. It is in a place called Henley on Thames, I can get you her info if it's close to you?

See, I used to have ice cold hands, be very pale etc and that's when the midodrine made me worse in my brain and tingling in the hands, so I know it was vasoconstriction, but it's not constant, I think I bounce between dilated and constricted in the brain so only getting to the root cause will make me better as if I use a constrictor when I swing the other way ill feel even worse and the other way! So complicated!

Fludrocortisone really really controlled my heart rate, but I still had god awful light headedness, so increasing BP doesn't increase the flow to the brain and over constriction would make 100% sense in my opinion that way, because if it was dilation then more blood would be arriving at the brain and reducing symptoms!

It's nice to find someone who is trying to learn all this and be their own advocate as no other doctor has a clue! I even bought Primer on the autonomic nervous system book, it's fantastic but a lot of it blows my mind, I wish I was well enough to study medicine!

 

Andy

 

[andybonse]

2 hours ago, Pistol said:

@bombsh3ll - once I get this bad it is difficult to stop. Sometimes retreating into a dark, quiet room and lying down helps. Medications do not help for these flares, but I take a ton to prevent them. I take diltiazem, carvelidod and guanfacine for the BP and HR, Ritalin for brain fog and Lexapro, these are my POTS meds. But when I get the above symptoms and cannot stop them then I have to get IV fluids. That fixes everything for me. ( I am getting a port next week and will be able to get fluids at home ). I know that you are having trouble getting them in the UK but if you find someone to order them you would be surprised how good they work!!!! --- Regarding the Ritalin - I thought this myself before starting it but it really works and I have no side effects. My specialist - Dr Grubb - wanted me to go on modafinil but my insurance does not cover that. 

While I was waiting to see my autonomic specialist there was a girl waiting to see him too, she had a PIC line, so I assume POTS and somehow got the saline maybe here in the UK!

[bombsh3ll]

5 minutes ago, andybonse said:

I wish I was well enough to study medicine!

I did, (when I was well of course). I'm a GP. It hasn't really helped me other than being able to identify my diagnoses and then pursue formal recognition of them, and safely access first line oral medication myself. 

 

6 minutes ago, andybonse said:

While I was waiting to see my autonomic specialist there was a girl waiting to see him too, she had a PIC line, so I assume POTS and somehow got the saline maybe here in the UK!

I would love to know where she got that. Prof Matthias' clinic informed me outright that he doesn't treat with IV fluids

8 minutes ago, andybonse said:

I went to get a blood draw from someone private in her own home, she is a trained phlebotomist, it was £60. She also centrifuged it there and then. It is in a place called Henley on Thames, I can get you her info if it's close to you?

It's not close, I am in Scotland but please give me the details all the same, it would not be the first or last time I've had to travel to London.

10 minutes ago, andybonse said:

Does gulping water, squeezing something or sneezing make you feel better at all for a very small amount of time?

Ice cold hand or frozen veg to back of neck & breathing in deeply through nostrils (same principle as impedence threshold device, increases preload) help me marginally.

B x