Desmopressin - Weakness And Fatigue - Anyone Else?

[persephone]

Hello all - long time no see!

Have checked through past posts and not found anything on this specific query:

Does anyone else get weakness or fatigue or brainfog on desmopressin? I started it 4 days ago and am sleeping on average 12-14 hours a night, and feeling so weak that I am supine the rest of the time I am awake.

I've just had a 2 week hospital stay following a UTI which caused a massive POTS flare. My hydration went wonky; no matter how much IV I had- even one day having 6 litres, I still peed it all out and went into 'negative fluid balance'.

The desmopressin means I don't spend my entire time in the bathroom, but I feel REALLY weak. Hard to tell if it's because I was flat on my back in hospital for days on end, or the desmopressin. I think the desmopressin is doing something weird though because my brain is so fuzzy.

Any feedback, suggestions, or experiences would be very welcome.

Thank you all

[corina]

hi persephone!

can't really help with your questions just want to let you know that i'm sorry you've been in hospital again. hope you'll be back on your feet soon,

take care,

corina

[HopeSprings]

It's hard to keep track, but I'm pretty sure this was my reaction to desmopressin. I remember taking it the night before (as I do all new medication - hoping to sleep through the side effects) and feeling as you describe the next day. I tried it a few times and got the same result. Maybe it takes time for the body to adjust - if you can tolerate it for a while?

[janiedelite]

I took desmopressin 0.1mg twice a day for 2 months. At first, I thought it was a miracle drug! I had SO much less nausea and fatigue and pain... I could even see more clearly and my BP/HR were normal! As time went on, I had less and less positive effect. I even increased my dose up to 0.4mg/day. I kept track of my sodium and it was always in normal range. Finally, I actually started having more hyperadrenergic symptoms while taking it (fatigue, chest pain, tremors, hypertension with any activity, tachycardia, flushing, brain fog, etc).

I'm so bummed. I really was hoping that this would be helpful for me. Does anyone know WHY we have this reaction to desmopressin?

[Serbo]

I have been on it for a couple of months now, spray as opposed to tabs, 10mcg twice a day. Diagnosed with central diabetes insipidus and awaiting autonomic test outcome.

For me, it's been generally good. I actually need it, once it wears off my body dumps all fluid. Lost 5% of body weight in 3 hours during dehydration test.

It's really helped with bp. used to struggle standing up for 10 minutes to shave, now no problem. Managed 15/20 mins on tilt test until i felt dizzy, could not have done it with out it.

The big bummer for me is the headaches. never got headaches until i started on it, now i get acute sharp headaches, often bought on with stress. The ability to do more stuff outweighs this though. the 1st 2 weeks i was on it were weird , slept more and felt tired more. I figured this was my body adjusting to normality. Previously would go to bed and get out 3 times to pee before i slept! i had almost a constant head ache for the 1st 2 weeks, spoke to my endo, she upped dosage and now i seem to be doing OK.

Really have to watch the salt though. i was eating out a few week ago, and had major salty food, starter and main. DDAVP suddenly wore off, dump'd am lot of water and felt very unwell. Had my eyes shut at the table and was almost asleep, but i didn't realise! Left the restaurant had a couple of banana's and a lie down, some pre syncopal "rushes" the next day and then felt ok later.

The fatigue the OP describes was how i felt when i salt over loaded and lost a lot of fluid i think. Maybe speak to your dr about adjusting your salt levels/increasing your K? My Endo reckons must less salt is needed when on it.

[Serbo]

most people on here are on the DDAVP pills, i am on the spray. my endo thinks that for people with gastric problems, and in general spray is the better option. absorbility she thinks in more varied with the pills.

Thankful - i had tachy, chest pain before DDAVP and still do, don't think it's made them any worse. Blood pressure is higher now, specifically it goes higher with stress, e.g 140/80 in the doctors office! However i had similar high Bps before it when trying to manage with salt.

[janiedelite]

It's been 2 weeks since I last took ddavp and I tried 0.1mg today since I've been so fatigued and painful lately. Once it started working, I only had worse exercise tolerance, tachier than normal, and the chest pressure started. It doesn't benefit me at all unfortunately. Thankfully I have coreg on hand and it counters all of these issues.

[persephone]

Hi all,

Thanks for the responses. Serbo- can you help me understand why I need to reduce my salt? Funnily enough, I've been craving and taking a lot of it- and today I haven't had as much and it's the best day I've had on the DDAVP pills so far.

[Serbo]

I am not sure, but I'll ask my endo next time I see her. She didn't say to stop salt, I couldn't, but she did say that i wouldn't need as much. However this was pre pots diagnosis. Whilst my body got used to the DDAVP I dropped some salt and felt better.

She may have said it because the DDAVP allows you to retain more salt as your not losing it through fluid loss, hence not needing ad much as pre DDavp.