bombsh3ll Posted April 11, 2019 Report Share Posted April 11, 2019 There is currently a study going on in Alberta to investigate the benefits of albumin which should in theory last a lot longer than saline: https://clinicaltrials.gov/ct2/show/NCT03365414 How I wish I was a patient there!! I am confused about the inclusion criteria though, it states idiopathic POTS but also seems to say they have to have abnormal sweating in feet/legs (which I don't think I do but never tested) to confirm neuropathic POTS. I believe my primary pathology is hypovolaemia rather than neuropathy and surely IV infusions are even more likely to be of benefit in volume depletion. Anyway who knows in years to come if this may become widespread if it proves helpful. A new place has opened up near me doing walk in private IVs with all kinds of vitamins and fancy guff in them. I neither know nor care what glutathione is, (bet most of the celebrity love island types who go there think it's something to tone your butt) - it isn't cheap & it's just the volume I want not all the toppings, but I think I may give it a go as an occasional treat. They have said they can omit the magnesium for me from their cheapest litre, so that's good as magnesium can drop BP. B xxx Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 12, 2019 Report Share Posted April 12, 2019 That sounds wonderful. Hmm. I think we have hydration clinics within within an hour of me, but very expensive and of course I'm much better off on my own couch running fluids for 7 hours... Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 13, 2019 Report Share Posted April 13, 2019 18 hours ago, RecipeForDisaster said: That sounds wonderful. Hmm. I think we have hydration clinics within within an hour of me, but very expensive and of course I'm much better off on my own couch running fluids for 7 hours... I know, I would much rather be able to get it at home over the duration I choose! Can I ask what you find better - fast or slow infusion & how much you run at a time? Some people seem to respond better to fast, some slow. I am so volume deplete I am not confident this private place will be able to get a cannula into me if they are just used to dealing with misinformed healthy people who think an IV will enhance their appearance. B xxx Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 13, 2019 Report Share Posted April 13, 2019 I definitely have longer lasting benefits the slower I run it. I was running 1L, now my standard order is 1500mL, and last time I was in such bad shape that we ran 2L (over 14 hours, partly overnight-the first 1L was run wide open to try and fix me quickly). I usually won't bother if I don't have at least 6 hours to run it. Much faster and the benefits are over too quickly. I get up to 36 hours of boost if I run it slowly enough. This last time, getting an IV was almost impossible because my veins were so empty. I can't imagine doing this for vanity... not that that'd work.... it's NOT fun! The stick, the uncomfortable dressings, dragging a pole around, having movement in that arm restricted the whole time... Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 14, 2019 Report Share Posted April 14, 2019 18 hours ago, RecipeForDisaster said: This last time, getting an IV was almost impossible because my veins were so empty. I can't imagine doing this for vanity... not that that'd work.... it's NOT fun! Yes my veins are totally shut down too. It always takes several attempts to get one in me. Before I became ill, I always had really great plump juicy veins, getting blood taken etc was never a problem. Was that the same for you? B xxx Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 14, 2019 Report Share Posted April 14, 2019 Yes, it varies, though. If I'm doing okay (BP generally above 95) I have really nice veins, maybe too distended if anything. The more shocky I am, the less they present themselves... not good! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 28, 2019 Report Share Posted April 28, 2019 So, one of my doctors felt so bad for me, and so worried, that he prescribed the DDAVP even though it's way outside his expertise. He wrote for 0.2mg twice daily, ouch! I tried 0.025mg last night to start with.... I think I felt a bit better afterwards, although my BP actually fell a little. I woke up with a headache but that's not that unusual. Today I'll try 0.05 and see how I do. The doctor told me to take it regularly, but all the studies I've read say that's not safe long term... I'm not sure when I should get my sodium rechecked-I don't have Thursday's results yet. I had tons of labs run. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 28, 2019 Report Share Posted April 28, 2019 7 hours ago, RecipeForDisaster said: The doctor told me to take it regularly, but all the studies I've read say that's not safe long term... I'm not sure when I should get my sodium rechecked-I don't have Thursday's results yet. I had tons of labs run. It is safe to take long term if you are being properly monitored. The prescribing doctor should have made arrangements for you to have a follow up blood test. Assuming your baseline sodium was normal, and you are only taking it at night, a week from the date you started should be reasonable. If you are taking it in the daytime or in larger doses >0.1mg you really should be checked after 2-3 days as hyponatraemia can develop very rapidly, particularly in patients who drink large amounts of fluid as we do. B xxx Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 28, 2019 Report Share Posted April 28, 2019 I'm taking it in the daytime. He has prescribed 0.2mg twice daily! He is a hematologist so totally winging it. He asked ME what dose I should take-I can't fault him, at least he is trying to help. He ran tons of labs (including sodium) on Thursday, but I don't have results yet, and my sodium does tend to stay on the very low end of the range. He's an hour from here so I can't get there for labs anyway-not even to his hospital system-and he hasn't ordered follow up labs. Yesterday I took 0.025mg and this morning I took 0.05mg. I passed out for the first time in a long time, yesterday, BEFORE I got my hands on it, so I wanted to get a boost to avoid IV saline. My plan, approved by another doctor (who didn't have the guts to prescribe this, sigh) , is to take it when I need it, for now. I just don't know the dose yet as I'm trying the tiniest amount. I haven't noticed a big difference, but I'm certainly not hypERtensive! I don't get thirsty, so it's easy for me not to drink too much. I'm probably taking 1500mL fluids these days. I did wake with a headache, but I often do. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted April 29, 2019 Report Share Posted April 29, 2019 FWIW one way to start an iv on yourself is to use those scalp vein butterfly needles. All you have to do is stick it in the vein, secure it to your skin and attach the regular iv line. It's not always as comfortable as a regular iv set up since the actual needle has to stay in the vein, but I get the 23 gauge ones and have run many an iv on myself by myself this way. You can easily do it with one hand. with proper planning. I mean when you're desperate, have the supplies, are alone and don't want to go to the ER... Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted April 29, 2019 Report Share Posted April 29, 2019 Please make sure you arrange a blood test locally within the next few days, especially if you aren't just taking it at bedtime. It really can cause serious problems very quickly, particularly if you tend towards hyponatraemia to begin with. If you end up with a very low sodium, not only is this dangerous but it could lead to the loss of a potentially helpful drug as nobody will be willing to prescribe it again. Taking extra salt and/or a tiny dose of florinef if you can tolerate/have access to it may protect your sodium levels on it but this is something to work out with your doctor and with regular blood tests. I know you didn't get on with florinef before but you wouldn't be using it for its own benefits, this would be using it to negate the hyponatraemic effects of the desmopressin. B xxx Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 29, 2019 Report Share Posted April 29, 2019 I take licorice with it (florinef gave me frequent migraines ) and a ton of salt. Good to know, I'll alert the doctor today. I totally get heat you're saying-I don't want to scare them. I tried not taking any DDAVP today as I won't be upright much. Interesting idea on the butterfly IV set! That does sound pretty easy one handed... but yes a long time to leave the needle in. Quote Link to comment Share on other sites More sharing options...
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