Are any of you on Desmopressin/DDAVP? I just started and am curious?

[joiedevivre]

I take .2 mg twice a day. It definitely helps a little but I feel a higher dose might help more. If you take it what's your dose? 

[bombsh3ll]

Sometimes I take 1/6 of a 0.2mg tablet at night ie 0.033mg. That is enough for me to get a break from the polyuria & have a full night's rest. I am sensitive to small doses as I have no endogenous ADH production. It doesn't help me stand though and I don't tolerate higher doses (not peeing for a whole day, worsened headache and high BP), and would find the necessary fluid restriction difficult if I were to take it during the day, although I have on occasion eg for a long journey.

I am also at risk of hyponatraemia due to mineralocorticoid deficiency, so my endocrinologist advised me not to take it more than 2-3 nights per week. 

I am glad it is helping you, do you have a diagnosis or been tested for diabetes insipidus?

B xxx

 

[RecipeForDisaster]

This is coincidental, I've been asking to try this for emergencies or times when I really need to be somewhere. The other night I had to cancel plans and run in 2L saline over 14 hours because I was doing SO badly, and it'd be so nice if DDAVP could stand in for that sometimes... or prevent me from needing it. If anyone has tips on getting it prescribed.... I would appreciate it. My neurologist said he didn't see indications for it "because my TTT didn't show severe autonomic failure". Um.... who cares? My BP is 72/45. I don't care what you call it (and doing painful and scary biopsies DURING the test does not make for an accurate result).

 

My baseline has declined, and I haven't wanted to eat in 2 weeks. I've been forcing in 500 calories or so most days, but it makes me feel worse when I eat (dysautonomia wise-tachy, nauseous, weak)and I had a 30 hour stretch where I didn't eat at all. 

 

Unfortuately I can't really get help-two doctors didn't answer my latest emails and don't have any ideas for me. I think they've given up and some have told me to get used to the way my body is now. Sorry, I can't live feeling this uncomfortable, needing to lay on the floor, and force myself to eat anything I take in. I feel very uncared for.  I'm grateful to have the fluids to bail me out, but that's not a long term solution.

[Pistol]

@RecipeForDisaster - is your inability to eat caused by gastroparesis? I am not sure if not eating is a typical autonomic symptom and it for sure will make your POTS worse. I would absolutely take this very serious - even going to ER if your docs do not respond. Can you not see one of them tomorrow? The fluids will provide you with temporary stability but will not do anything to improve what is causing this. Please seek medical care - it does not sound typical for dysautonomia, there might be something else going on. 

[bombsh3ll]

Couple of ideas - have you seen an endocrinologist? If that doesn't work out, a urologist might be worth seeing if you have significant night time polyuria (and who with POTS doesn't!)

Emphasizing the nocturnal polyuria rather than expressing a wish to be able to stand or walk though is more likely to be successful with a urologist as they may be scared off by dysautonomia stuff!

Also, if you are in the US and have doctors who accept that saline benefits you, is there any potential for having longer term venous access placed & regular infusions?

B xxx

[bombsh3ll]

PS I also struggle with eating enough with POTS & I don't have gastroparesis, it is just that when you are so lightheaded you feel nauseated and don't want to eat. When you are volume replete and getting enough blood flow to your brain, the appetite improves unless you do in fact have something else as well. 

Definitely worth having a GI issue excluded though and I second going to the hospital if you aren't able to maintain your oral intake. 

B xxx

 

[RecipeForDisaster]

I always find that when I'm in severe shock, I don't want to eat. I consider that normal... I'm probably not sending much blood to my gut, so my body doesn't want food, and if I eat, it's overwhelmed trying to digest. This is part of my usual worsening. I don't think I have gastroparesis or really any GI problems. I normally MAGICALLY get my appetite back when I'm running saline in, but this time I was really bad, and even though it helped, I didn't get hungry. Every other time, it's been "run and get me food!". When I'm doing okay, I eat pretty well-I'm a foodie, and I surround myself with tempting and delicious things that I know I usually want to eat. I eat snacks almost constantly when I'm doing okay.

I know the ER won't be able to help, and I don't even think most doctors want to see me. It's really depressing.

I've recently been cleared by an endocrinologist who was pretty useless and only wanted to see if I had Addisons, and I saw a different one a few years ago who didn't really help.

I actually don't have nocturnal polyuria at all. I do pee out most fluid I drink, which makes no sense, because that doesn't happen with IV saline even though my oral solution is the same osmolarity.

I have multiple clotting disorders, so unfortunately permanent access of any kind is not allowed. Otherwise I believe I'd be doing daily saline and managing a LOT better. It helps me so much. I also don't have much support from doctors on that- most don't think I SHOULD need the fluids and don't want to prescribe for them. Sorry, as much as I don't enjoy getting the fluids, I DO need them. I can't explain why, but I do. I need a new IV every time because of the clotting.

The saline did help dramatically... air hunger, chest discomfort, blacking out constantly were all improved by a ton. 

 

It really scares me how I keep getting worse despite adding more interventions, and the doctors don't seem to care. My baseline BP is at its lowest ever and I'm on a TON of meds and interventions to raise it.

[Pistol]

19 minutes ago, RecipeForDisaster said:

actually don't have nocturnal polyuria at all. I do pee out most fluid I drink, which makes no sense, because that doesn't happen with IV saline even though my oral solution is the same osmolarity.

I am exactly the same. When my POTS is bad I pee constantly, despite drinking and taking in salt. Once I get the IV fluids the peeing stops and my BP comes down - which is completely the OPPOSITE of what is supposed to happen. That is why docs do not approve of IV vs oral fluids: they do not understand this weird mechanism. --- Have you tried Ensure or other liquid nutrition like instant breakfast etc? Protein shakes? --- What have they given you so for for your hypotension? 

[dancer65]

I think I am lucky my Dr agreed last week  for me to try this as an occasional med for special occasions , my son is getting married and the journey sitting eating will likely end with me having to leave early . I plan to give this a try one day this week and see how it goes .

Thanks for sharing your experiences .

[RecipeForDisaster]

I make myself pick at healthy snacks, and I drink V8 and broth. I'd do protein drinks but it's not really easier on me than eating regular food, and at least I like the taste of real stuff. No matter what, I feel worse after.

 

I take midodrine every couple of hours, mestinon, adderall, use multiple layers of compression garments, and am prescribed 15-20gm salt daily. The head of my bed is raised and I don't let myself get hot. I got some bad migraines and edema from florinef and not much benefit. I'm also on a lot of other stuf including low dose naltrexone. Nothing that lowers BP, though.

 

I didn't pee at all after the first liter of IV fluid. That's crazy. I otherwise pee basically whatever I drink, no matter how salty it is.

[Pistol]

@RecipeForDisaster - have you ever tried Florinef?

[joiedevivre]

7 hours ago, dancer65 said:

I think I am lucky my Dr agreed last week  for me to try this as an occasional med for special occasions , my son is getting married and the journey sitting eating will likely end with me having to leave early . I plan to give this a try one day this week and see how it goes .

Thanks for sharing your experiences .

Let me know how it goes and what dose you're on. I hope it helps!

[joiedevivre]

14 hours ago, bombsh3ll said:

Sometimes I take 1/6 of a 0.2mg tablet at night ie 0.033mg. That is enough for me to get a break from the polyuria & have a full night's rest. I am sensitive to small doses as I have no endogenous ADH production. It doesn't help me stand though and I don't tolerate higher doses (not peeing for a whole day, worsened headache and high BP), and would find the necessary fluid restriction difficult if I were to take it during the day, although I have on occasion eg for a long journey.

I am also at risk of hyponatraemia due to mineralocorticoid deficiency, so my endocrinologist advised me not to take it more than 2-3 nights per week. 

I am glad it is helping you, do you have a diagnosis or been tested for diabetes insipidus?

B xxx

 

I only have a POTS diagnosis, no DI, but I've suspected I have it since I heard of it. I feel like 0.2 mg makes me pee like a normal person ( I still pee some on it), and if I took more that would be the POTS treatment part. I guess I should try to see an endo soon, I have to anyway. 

[bombsh3ll]

17 hours ago, dancer65 said:

I think I am lucky my Dr agreed last week  for me to try this as an occasional med for special occasions

Hi dancer65,

Who is your POTS consultant who agreed to this? I have found POTS specialists in the UK hesitant re desmo even Dr Gall who was familiar with the evidence from Vanderbilt. I have to import mine from Europe. It doesn't help me POTS wise but having it does improve my quality of life re sleep and polyuria. 

Do try a very small dose at first. I took the nasal spray (1 spray being equivalent to 0.1mg orally) and it was WAY too much. 0.33mg gives me a full night's sleep. 

9 hours ago, joiedevivre said:

I guess I should try to see an endo soon,

You should see one asap if you are taking those doses of desmo daily & have not had testing. 0.2mg bd is in the range of treatment doses for full DI. Is your blood sodium being monitored?

B xxx

[RecipeForDisaster]

I did try florinef for quite a while... a tiny dose didn't seem to do anything but give me some edema, and as I slowly worked up, I got frequent migraines and bad edema with very little improvement. I did think that licorice helped somewhat without side effects, so I might go back on that. 

[dancer65]

Hi Bombshell

It was my GP who agreed for me to try it, he's been my Dr for over 25 years so he knows me well! He has said he only wants me to use it occasionally if it helps. 

My consultant is Dr Salukhe at the syncope unit at Royal Brompton London. I have only seen him once, he was very constructive and although it was not a long appointment NHS I didn't leave feeling I hadbeen rushed, my husband was with me so he spoke to both of us and he seemed very interested in what my husband had to say. I keep in contact with the nurses and if I have needed  any advise they return your call in 24 hours but mostly the same day.  I can ask to see Dr Salukhe again  any time but as I am coping I haven't. 

I only waited 5 weeks to see him from my referral from GP I was pretty impressed with that . I can only speak as I found but I have been pleased with my treatment . He does also do private consultations and was recommended by STARS who he does speak for at their conferences. 

[bombsh3ll]

2 hours ago, dancer65 said:

My consultant is Dr Salukhe at the syncope unit at Royal Brompton London. I have only seen him once, he was very constructive and although it was not a long appointment NHS I didn't leave feeling I hadbeen rushed, my husband was with me so he spoke to both of us and he seemed very interested in what my husband had to say. I keep in contact with the nurses and if I have needed  any advise they return your call in 24 hours but mostly the same day.  I can ask to see Dr Salukhe again  any time but as I am coping I haven't. 

I only waited 5 weeks to see him from my referral from GP I was pretty impressed with that . I can only speak as I found but I have been pleased with my treatment . He does also do private consultations and was recommended by STARS who he does speak for at their conferences. 

That's great info will look into him thanks. 

B xxx

[bombsh3ll]

5 hours ago, RecipeForDisaster said:

I did think that licorice helped somewhat without side effects, so I might go back on that. 

Yes i have just come off Licorice root (swanson 450mg caps, 2 daily) they were my miracle for a good year.

I came off them because the volume enhancing effect had ceased & they were causing high BP (which I never needed in the first place) but if a BP raise is what you're looking for they could be a great fit. I had no other side effects on them either.

B xxx

[RecipeForDisaster]

I will try again-it's weird, I went off licorice to go on florinef... who would think that the licorice would be more effective? I am not surprised that it had fewer side effects.

All I know is that I'm in really bad shape with few options. My husband just wants to put an IV in almost every day. I'm layering more compression on top of compression and going up to the full amount of adderall I can take (I don't love how my chest feels on it, but oh well). Feet up whenever I possibly can. I drank a liter of V8 while my IV was running!

I'm getting the Mayo autoimmune dysautonomia panel run this week.  I don't know what results I am hoping for!

[bombsh3ll]

6 hours ago, RecipeForDisaster said:

I'm getting the Mayo autoimmune dysautonomia panel run this week.  I don't know what results I am hoping for!

I don't know maybe something that might get you access to IVIG? I'm considering Celltrend which I believe is similar. 

I wish my husband could put an IV in me! Seriously I know you have a clotting disorder but what about with blood thinners? 

B xxx

[RecipeForDisaster]

My husband is a nurse and we are both EMTs. If I had another hand, I could put an IV in myself. 

 

Yes, if I come up with something on the Mayo test, it'd likely lead to IVIG. I wouldn't look forward to that, but wil do it if it's the answer! What I meant was that I don't know if I want to come up positive for something or not. An answer would be great, and I have a positive ANA and seem autoimmune, but who wants an autoimmune disorder?

 

Anticoagulants are something I avoid very much since I fall and get hurt so often. I don't have a great immune system, either, so it's not just the clot risk but the infection risk that keeps me from a PICC or a port.

 

My cardiologist wrote again and said he'd consider letting me try DDAVP when he gets back from a trip. I don't think it's going to be magic for me, but might be a useful tool. I was hoping for nasal spray for quicker action, but the dose can't be adjusted that way...

[bombsh3ll]

17 hours ago, RecipeForDisaster said:

I was hoping for nasal spray for quicker action, but the dose can't be adjusted that way...

Having tried both I would highly recommend the tablets which can be broken into small pieces. With a spray, you cannot really control your dose. Also it is not that easy to administer - you don't know whether to sniff or not, and it all just seems to run back out again, leaving you wondering how much if any has been absorbed.

The tablets act quickly, especially if taken on an empty stomach. Sublingual wafers also exist that dissolve under your tongue but these are more expensive and probably harder to access. 

Good luck I hope they help and would love to hear how you get on with them. 

PS instead of saline which is short lived have you ever had opportunity to try a colloid infusion?

B xxx

[RecipeForDisaster]

I had a hard enough time getting saline-I'd love to try lactated ringers, but I doubt I can. I'm not even sure I can get a refill on my saline!

 

i won't have any chance of trying DDAVP until the cardiologist gets back at the end of the month. Even then, I'm not sure he's going to do it. But that's good to know... I'll go for the tablets.

 

I just don't really know where else to turn... often when I really need IV fluids, I am alone and can't get an IV. Plus, I can't get a new IV every 2 days and it doesn't last longer than that....

[Pistol]

1 hour ago, RecipeForDisaster said:

Plus, I can't get a new IV every 2 days and it doesn't last longer than that....

When I used to get Saline infusions the effect was very short lived and most of the fluid ended up being retained in my tissues. Since doing LR this has not occurred - every valuable drop ends up in my vascular system, no swelling or weight gain, and the effect is much longer lasting. The LR solution keeps the infused fluid within the blood vessels rather than it permeating into the extra-vascular space - hence the longer lasting benefit. 

[RecipeForDisaster]

Last time I asked, I got denied for LR... but I'll try again! I literally will be grateful to get my NS Rx refilled... but I am pretty sure LR would help more. Especially times like now where I'm hardly eating. There's other stuff in LR that is helpful.