Shaking & trembling

What causes the shaking and trembling that I notice some people experience. My 3 yr old son does it, mostly really early in the morning when he first gets up? Is it dehydration?

I get like that when my DDAVP wears off, my blood pressure drops. But when I take the DDAVP, it brings my blood pressure back up and I’m fine afterwards.

Subject: [diabetes-insipidus] shaking & trembling
Date: Sun, 24 Feb 2008 05:34:55 -0500

I experienced the same thing, mild shaking and trembling in the morning. I believe its time to take another dose after hours of sleeping. I will also be shakey when I’m too long in the hot sun (I am living in a hot weather country). I had once could not get my doses for few days due to supply problem at the hospital; I got very dehydrated, shaking and trembling badly, nauseated and confused.

When I wake up in the morning, my husband gets my minirin spray and a cuppa, as he knows I’m not able to do much until Ive had it. It’s like a full bladder, headspin, dehydration, and physical weakness all at the same time. Make sure your son maybe has his medication the same time every moring by you, before he is due to wake, then he won’t sleep in to the shaking point, it a horrible feeling. Poor little guy, only 3.
Just an idea.

I get the shaking and trembling as well. It is actually the DI wearing off and dehydrating starting to set in. That is why you see it in the morning when your ADH levels are at the lowest because you may not take medicine throughout the night (unless you are like me and have to get up for that 2am fix). I also notice that when this happens my tongue starts to get a grayish tint that my doctor says is also related to the dehydration. Just little things to look for, but he will start to notice the symptom his self someday and will know that means to take his medicine. (He will also someday learn how long he can hold off taking it before it gets to where he can’t function, which sounds like a bad thing, but it is good to learn your own body’s reactions)

Oh, I forgot to add… Nini, You really see your blood pressure go up when you take your DDAVP? I am the opposite. When I get dehydrated my blood pressure goes up (less fluid in my vessels = high blood pressure) and when I take my DDAVP my blood pressure drops. This is also because DDAVP is a vasodialator which means it makes all your vessles get larger. If you watch someone about 15 to 30 minutes after taking their DDAVP their pupils in the eyes even dialate (my husband says I look like I am on something). My blood pressure is normally really low (90/55) which my doctor says is part of the DDAVP. Just wondering why yours is a little different.

Actually blood pressure will fall with dehydration. It’s one of the classic signs. If your blood pressure is rising simply by taking dDAVP it is very strange. High blood pressure is MORE pressure against the blood vessel walls. I’ve had DI for 40 years and severe high blood pressure (up to 230 / 140) for 20 years, until the cause (an adrenal tumor) was discovered and removed with surgery. I lost several kilos, dropped a shoe size, my wedding ring falls off etc, since it’s been solved. Although I was on diuretics (as well as diuretics) some of the blood pressure drugs work by relaxing the blood vessel walls, so that the increased blood volume does not cause so much damage.

There is no vasodilator effect from desmopressin, although there is a small amount from (naturally occuring) vasopressin, and also from the old drugs, like pitressin tannate (originally considered a suspect for my high blood pressure).

Heidi I wonder if the stress you would (automatically) feel when you notice the ddavp wearing off is causing your blood pressure to rise. My endocrinologist thinks untreated DI is no more than ‘inconvenient’. I’ve got news for him. I HATED being caught without treatment, which used to happen to me frequently in the days of the pitressin injections, which lasted about 36 hours for me. The newer treatments literally changed my life.

There’s absolutely no evidence that dDAVP causes low blood pressure. Having said that the tests run on it are so minimal as to be irrelevant, but it’s certainly not a common problem. Until I had a high blood pressure problem my blood pressure was 120/70 - all the time, every time. I don’t know how you can stand up without falling over!


HeidiA wrote:

Thankyou everyone,
for your responses to my questions. I am learning more about the day to day, living with and management of DI, for my son, than I feel I will ever get from his doctor.
I’ve pretty much been left to work his dosage out myself. Which has taken from xmas to now. With a bout of tonsilitis in the middle, to really throw us a curve ball. With a three year old I am relying totally on the fact his thirst mechanism seems to be fine.
I keep reading where it is recommended to monitor sodium levels, to make sure the dosage is right. I asked my doctor about this and she said it was not neccessary to monitor sodium with DI?
I am at the point where I think he is getting enough ddavp to control the symptoms but am not sure if it should be a little higher, he still seems to have no appetite, which I am told is due to having a stomach full of liquid and no appetite as a result. So I wonder if he is getting enough ddavp, as it is not helping in this, at this stage.
Thanks again, Jane.

Valhallajane said:
I keep reading where it is recommended to monitor sodium levels, to make sure the dosage is right. I asked my doctor about this and she said it was not neccessary to monitor sodium with DI?
My son is 18yrs. old and has had DI since he was 10mths. When he was 18 he transferred from paediatric care to adult endocrinology. We had been incresing his DDAVP for years as he grew the paediatric doctor said this was OK. However, the endocrinologist said this shouldn’t have happened as it affected his sodium levels - low sodium - and advised he adjust his DDAVP to a lower dose. This caused many problems as he was used to the dose he was taking and adjusting to a lower dose meant more visits to the loo. He has regular checks on his sodium levels now but we don’t understand why the paediatric doctor allowed us to continue increasing the DDAVP dosage when the endocrinologist said this will cause problems.


Thanks Maureen. It could be the stress of it. I don’t know. That is what my physician had explained to me. I agree that it is WAY more than an “inconvience”. I was so sick all the time until I was put on medicine and when I feel it wearing off I get a very panicky feeling.
Also, in terms of monitoring the medicine… Everyone has to find what dosage works best for them and when is best to take them. It cannot simply be determined by blood tests from my experiences. I often have to change my dosage with the seasons, when I exercise, and when I eat lots of good old sodium! I now take 0.2mg pills and take them between 3 and 4 times daily depending on the things I mentioned above. My physician started me on 0.1mg pills and at one point I was taking tons of them it felt like. With a three year old I am sure it is really difficult to judge, but each person is going to be different in what they need and when they need it. Only you as the patient really know what works for you.

With your low blood pressure, and having to take salt, are you sure you don’t have adrenal problems? Has anyone ever measured your aldosterone levels?

Re the ‘inconvenience’: when my DI first started at 12, it wasn’t diagnosed for six months, and I could hardly stand up in the end I’d lost so much weight. Without desmopressin, my appetite is absolutely zero.


HeidiA wrote:

Yeah, they measured it when I was first diagnosed. I actully gained 60 pounds during the 3 months it took to diagnosis me. They thought I might have Cushings in the begining. I gained the weight because all I wanted to drink were ICE COLD drinks and even in the middle of winter my favorite were slushies. TONS of sugar, hence the weight gain. Every test I had came back fine except the DI tests (BMP, 24 hour urine, and water deprovation). It has been 10 years though, so next time I go see my doc I may ask him if he will run EVERYTHING again. It can’t hurt.