My diabetes insipidus journey
Posted , 61 users are following.
I'm a 34 years old and was diagnosed with central diabetes insipidus in Sept 07. This diagnosis followed a prolonged headache (about 2 weeks) and fever (10 days) after which I became extremely thirsty and could hardly sleep for getting up in the night to go to the bathroom!
Unfortunately the doctors have been unable to pinpoint the reason behind why I suddenly developed this rare illness, which I understand is likely to be permanent. I now take desmopressin nasal spray about twice a day. I continue to feel very tired and sleep 10 hours a night.
I'd be very interested to hear from anyone else out there who has had a similar experience so we can compare notes and exchange coping tips! I'm fine when I have my spray with me, but am dreading the day when I forget it and am forced to return to the drink - pee - drink cycle.
7 likes, 219 replies
Guest Guest
Posted
Woah this is amazing. I wish I had of searched for this before. I guess I'll start with... Hi my names Nav. Live in Australia. Diagnosed 3 year or so after birth. Almost 25ish years ago. Doctors said it was likely developed at birth.
It's been a wild ride tho hahaah
Have been on the nasal spray as long as I can remember. Tried the pills twice at different occassions and found the spraycto be a lot more convenient and smaller thus sticking to the sprays. The older the I got the more sprays I was advised to take, bu t found it didn't really do anything. They speculated that it may be because as soon as the spray hits my system its life in my body was still about 12hrs (depending on the activities I did) regardless of how much I took. So i generally stick to 3 sprays twice a day. Had been for about 8 years. Generally meaning if I had a long physical day, didn't drink water, etc etc then I would bump another hit.
So I had been doing that right but about a year ago, I've been going to the gym. *highly recommended - atleast my point of view* I am by no means a professional either. Back to the gym though, so this last year I have noticed that I have had to increase the dosage. I am now on 9 sprays a day. Has anyone had this kinda problem before ?.
I drink heaps of water. Like a lot. If I don't take a spray I can drink at least 2 litres+ of water every in about 6secs give or take. I'll have to go to the bathroom not even 15 minutes later. Basically pee out what I drank. Kinda blows.
The only advice I can give you is this. If you forget your meds
Drink a lot of water mindfully. remember it is possible to drown your body by drinking a lot o water. It is not a pleasant feelimg and it ca lead to other issues. If yo forget your meds try to be mindful about the sips of watevyou take. Yes sips. Seriously if yo drink the whole glass it'll just need a refill and then you'll need to pee. It will be hard I know at least until you get to the meds.
Also train your bladder a bit. Like a muscle it'll get stronger and since we all pee a lot it'll help you as you get older too. <- my paediatrician taught me this. Helps. If I have taken my meds I can hold it in for longer wen times are tough to gevto the bathroom. And if I don't take itthen I'll find water ad sip on it for about 30 minutes pee generally takes another 10. sometimes sooner. Its help me the most when I have to travel which I have *protraveltip - always take extra. You do not know what will happen. Carry one on your person. One in your backpack, and one or two in your main luggage..
I am sorry to hear about those who had difficult access to this drug. I hope you find a means t get it. In Aus through our Medicare it cost me 37.70 right now for two bottles lasts me about15 days roughly, less if I got to the gym. I did find out though it does cost a pretty penny with out Medicare. But its prescription only here so you'd be provided withghe govt rebate anyway.
I can't speak for anyone who has had it for longer than I have but I found a few weird things about the pituitary gland. Its a epicentre for control over the emotions . atleast this what I've read and have conferred with doctors who agree. Like I sometimes get a lot angry acsmall situations quicker. Stress faster. Had/have some anxieties. Get upset quicker. Stuff like that. If anyone, new or old, has noticed this I'd love to hear your experience.
Man this is long. Phew I am super stoked to meet my kindred brain souls. I have Facebook please add me if you want a PituitaryPal
. Nav Singh. I actually hope that we could meet in the future in m travels would be awesome. Thanks for reading I've never told anyone these things not because I was scared but coz no one gets it.
Guest Guest
Posted
so basically from birth the dosage has increased until about 8 years ago when I found that 3 sprays a day twice a day WAS good enough. Ill get to why in a sec. also disclaimer; I am not a professional I just have a lot of experience. I don’t know why 6 sprays a day was perfect but I tried more and it would only ever last about 2 hours more regardless if I took 6 sprays a day or 12 sprays a day.
until I started going to the gym that is. My sessions are always high intensity so my body expends a lot of energy and the medicine would go with it. I drink a lot of water during my workout and pee a bit too but I generally take a spray or two after I finish just so I can then keep my body well hydrated while its in repair. Again, I am no professional .. but over the years I have performed a few experiments on my self. Feel free to ask me anything or even if you have tried them coz then we can find out what actually works and what doesn’t.
basically the research I did on the gland it self is actually pretty cool. It is one of the primary glands in a body and so freaking small. For something so small it does quite a few things. One of things is it has an affect on our emotions. Now I don’t know how big or small it is but I do know I get excited quicker and in the same sense i get sad/upset quicker, Id get wayward emotions more the my family members and stuff, use to be a tantrum child, even small things used to bother me really quickly. The gym has helped heaps with the emotions. I have found I am a lot calmer, I can relax easier and sleep better. I used to sleep so bad. Wake up at night toss and turn but now I barely do that at all.
I feel I should stop there. If you read this far thank you for you time. cant wait to hear from you. stay hydrated *thumbs up*
marcos12 Guest
Posted
Noooo, do not drink a lot of water, I remember seeing the Endocrinologists, he told me to stop drinking so much water and to drink only when I get thirsty. No wonder why you people have to take the spray so often (9 times a day, that is just sick).
I have had diabetes insipidus for the past 30 years, I have thought myself to use the spray only once a day, I do admit, after 20 hours. i beguin to have the symptoms of diabetes insipidus,,,however, I do not run for the spray, instead I allow myself to be "miserable" for the next 4 hours.
I did this experiment where I would deny my body the spray, and what I noticed is that the "symptoms" happened only later during the day. For example, let's say that you need to take the spray twice a day, on a particular day, do not take the spray as soon as you have the symptoms, instead try waiting until you can't anymore, and what you will noticed is that the symptoms will star happening later and later during the day, the longer you deny the body the spray, the longer the body will asked you for it.
I posted here that I would like to just stop taking the spray completly, I truly belive that it can be accomplished, I have being able to go for 2 day without the spray, I would be drinking water/bathroom visits constantly thoug.
Again my believe is that if we deny the body the medication, eventually the body will "start producing" the hormone needed for a normal life. I know there are a lot of people that would think that I am crazy, but hey, someone has to be the first to try it...right.
Just remember, please, please people, don't drink water unless you are really thirsty, doing so, will prevent you from having to take the spray.
Guest marcos12
Posted
I don't know what you've been told. youve had it for 30 yearss and still believe that your brain will somehow produce the hormone naturally?. My gland won't. It is basically non existant.
And no one should keep drinking copious amounts of water but your body is predominantly water. My endocrinologist stated to keep hydrated. And I don't know howvyou force yourrself to be miserable. 9 sprays a day is 'sick' but being miserable for a while is any better. I guess different strokes and all right
linda28225 Guest
Posted
I've found that if I take my DDAVP after I lay down to sleep, it lasts twice as long as if I take it during the day or before I'm ready to lay down. I usually only use one spray a day. If I don't have my medicine, staying away from coffee and tea or any other diarrhetic helps.
I have a question about the emotional stuff you were talking about. What pituitary hormone are you missing that affects your emotions?
Guest linda28225
Posted
I've tried less but it doesn't work for long. Am intrigued by the lay down then medicate rather than before I late down? That's what you mean right?
So I've been told its my growth hormone. It affects physical and mental growth. That being said I am six foot tall. Ive questioned it a bit. But honestly sometimes I still feel like a kid in the sense that I haven't achieved an emotional intelligence of that of a 28 yr old. <-- *this being said is just my own experience. Just want to clarify. We are all different. The severity of each condition is different to.* I am seeking help from shrinks because I think that it may be a trigger maybe not. Maybe its me... I don't know or maybe its the gland. A normal size gland is about the size of a pea. MRI's revealed that mine is less than 1/3 of that size. Could also be the reason I require more sprays. How did you get your DI?
linda28225 Guest
Posted
I have DI and hypopituitarism because I had a benign tumor on my posterior pituitary gland stalk. This type of pituitary tumor has to be removed by brain surgery. During the surgery, my surgeon found that the roots of the tumor had grown into the pituitary stalk and he had to cut it out. My pituitary gland is normal but none of the hormones that are made by or pass through the pituitary gland can get out to do what they are supposed to do. I take replacement hormones for all of these. I take growth hormone also. Do you take growth hormone? I know it is very expensive but I have heard that the cost is coming down.
Guest linda28225
Posted
i may ask my doctor and see if it can be prescribed, however i dont know if i would qualify for it. it is definately worth looking into. thank you
diana123456 Guest
Posted
Hi everyone. My name is Diana. I'm 32 yo. I am so grateful for this forum. It's nice to know that there are others that actually understand the pain and frustration of DI. Thank you to all who have shared your stories. I am most appreciative.
I think I have DI. I'm waiting for my insurance approval for a MRI. It first started out being really thirsty. Then frequently waking up throughout the night for water and bathroom visits. I also stopped getting my period. I'm very scared. Especially if there is a tumor in my head. Does anyone know how long recovery is? Any complications post surgery? And could removal of the tumor make DI go away? What's worse: Diabetes nephrogenic or neurologic?
This so bizarre to me. I'm still in a state of shock. I was so healthy before. Must it have been something that triggered this? I'm trying to keep my spirits up but can't help but breakdown and cry. Everyone seems so strong.. Especially sweet young Sophia.
meagan58879 diana123456
Posted
most likely you have central diabetes which is not as bad as nephrogenic becase it responds well to hormone treatment ( it is VERY VERY rare if not unheard of for girls to have nephrogenic, nephrogenic doesnt usually just develop, its caused by genetic mutation present at birth that is only present in boys - girls tend to be carriers - I am a carrier, my son has NDI) The MRI is only necessary to confirm there are no tumors and abnormalities within the pituitary gland or around it, which is responsible for the release of the ADH hormone, which is what tells your kidneys what to do with the water you drink. Nephrogenic is when this gland still produces correct amounts of the hormone, but the kidneys do not have the ability to respond to it. In central diabetes, they give you a form, depending on your age what form, (young children its shots, then pills, adults can get a nasal spray) of synthetic hormone called vassopressin. Most people with Central DI respond well and quickly to this hormone. This is how they diagnose the difference.Now, MOST doctors are unaware of how to actually treat this condition because it is so rare. The way they can confirm that you have this is quite simple. The urin you put out, always looks the same. It looks like you are fully hydrated. If you do not drink any water, your urin looks the same. It does not concentrate and become darker the more dehydrated you become. To confirm that this is happening, dont drink any wayter for a couple hrs, then have your doctors before a blood test. Your sodium levels should be between 130-145. If you have DI, this wont be the case. They compare the sodium levels to the urin concentration. The MRI is not a gaurenteed form of diagnosis. You could have a clean MRI and still have CDI or NDI. Most people that suddenly aquire CDI get this from some medications, head injury /brain surgery, or because an abnormatlity is obstructing the gland.
Its tough to get use to at first, but you will, and you will be ok
ConnieAnne diana123456
Posted
How are you doing Diana? Did you get your MRI? Let us know how things are going. My 29-year-old son's DI came on, out of the blue, this past May. It was unsettling at first. His MRI revealed some thickening of the pituitary stalk, just basically some inflammation, nothing requiring surgery. So he simply takes his DDAVP pills three times a day, and doesn't seem troubled by this. When it was untreated (before it was diagnosed), it was quite distressing. But as chronic conditions go, he seems to be dealing well with this. My hope is that this is your path too. Looking forward to an update.
diana123456 meagan58879
Posted
Hi Meagan and Connie Anne. It's been a long and bumpy ride. I started getting symptoms in June and I'm still dealing with them now. I had a clean MRI and so my endocrinologist ruled out CDI. Following the MRI, I did the water deprivation test, which was complete misery and torture. My doctor told me that I couldn't drink water from 11pm-8am! Even withholding water, I was still peeing the same color and frequency. My doctor called me and told me that she was "confused" with my results. I don't know the exact numbers, but she said my urine went up and my sodium went down, and that she would need another water deprivation test to make sure my results wasn't an error. Since then, I could not perform the test. I would wake up dying for water throughout the night. I broke down and told my doctor that it was impossible. She prescribed me desmopressin pills and told me that this is not a full DI diagnosis. Nobody seems to know what the heck I have so I have nothing to lose trying this med. I'm desperate. I just got my med today and I'll update you guys. Thank you to all for your help and concern.
rod93781 diana123456
Posted
Hi Diana back 48 years ago when development my DI at 11 years old I had to go through the water deprivation test 2 or3 times so I remember all to well what that is like. I think I have and others I have a idea what it would be like to die of thirst. Because if I don't use the DDAVP day or night every 15 minutes,would drink 2 glasses of water,so 8 per hour,and of corse to the bathroom.
But I find when I use the pills if just swallow them they really don't fully kick in,and only sort of work for 4 hours. But if when I use the pill when I go to bed laying down,and put it under my tongue it takes up to a hour to desolve,and will last 18-26 hours.But you can't talk or you will find it will not last as long. So I fall asleep with one under my tongue at night. And if doesn't last that long,I just use a small amount of nasel spray to get me through,till bed time. But if it last longer than 24 hours I have to watch that it doesn't start stacking up or I get a very sore abdomen. So try that I know every one responded differently.
Does anyone else have that problem with the over medication I wonder.
So I certainly understand your frustrations because I still learn things after 48 years what works best.
diana123456 rod93781
Posted
Hi Rod. So I took the pill for the first time right before bed, and it worked! Last night was the first time I was able to sleep throughout the night since my symptoms started. I'm so grateful it works. Hopefully it will continue to work for me.
diana123456 rod93781
Posted
The pharmacist told me that I couldn't drink alcohol with ddavp. Is that true? I'm no alcoholic, but occasionally, I do like to have a glass of wine. Is this ok?
ConnieAnne diana123456
Posted
Hi Diana,
I'm sorry that it continues to be stressful.
As you probably know, DI is fairly rare in the general population. Your doctor may not have much experience with it. The water deprivation test does not need to be done for so long as most docs do it. We live near Boston, so we have access to doctors who have more experience with rare conditions. In just a few hours, the results were showing changes consistent with DI. Also, you can have a clean MRI and still have CDI. I'm very interested to hear if you respond to the desmopressin. If you do, it's pretty much a confirmation of CDI.
Please let us know how it's going!! I wish you all the best.
ConnieAnne diana123456
Posted
rod93781 diana123456
Posted
Hi Diana
I don't know the answer to that I have never consumed alcohol in my life. But do know that if I over eat that my medication doesn't last as long.
meagan58879 rod93781
Posted
the amount of sodium you take in has a huge part in how much medication you will need. my son is nephrogenic and is very severe compared to most cases so we have to feed him a no-sodium diet. The body doesnt relieve salt normal with this condition, which is part of the reason dehydration comes so easy. People with the CDI can usually depend on the hormone replacement therapy to help relieve salt from the body, but in cases of high levels of salt the body has to "catch up" artificially. If I give my son bacon, you would see the amount of water he needs quadruple within the next two hrs. Unfortunately for him, hormone thereapy does not work, so we have to control his sodium levels with diet and diueretics so sodium intake affects him much more drastically than most people with DI. Something to keep in mind
meagan58879 diana123456
Posted
it took the best doctors in the state at the childrens hospital in connecticut 4 weeks to diagnose and treat my son while he sat hooked up to machines in ICU. The doctors on the floor had mentioned to me that no one knew what it was or how to treat it, and diabetes insipidus was the "trick question" on the test to get their medical license. I was accused of intentionally dehydrating my son. In the time we have been living with this I have come to one conclusion... find a doctor that has other patients with this and stick with them. We have one miracle doctor that I owe my sons life to. In several cases before she began treating him they experimented on my son. Injecting him with 5 times the dose of DVVAP than they would give an adult to a 4 mo old baby 10-15 times a day with no results. The bottom line is if your gut tells you this is what you have, and the pill works, stick to your guns and dont be afraid to have another doctor take look at you.
rod93781 diana123456
Posted
Hi Diana just wondering how your medication is working,since I told you about putting the pills under your tongue to dissolve,laying down without talking. Just wondering how long it's lasting for you. And if it's lasting more than 24 hours do you have any indications that your maybe over medicating. For me the pills certainly do very,but on average they lady about 20-26 hours. But if I say a few words laying in bed it is certainly doesn't last as long. And again like I've said if I just swallow them,they virtually don't work at all.
So hope all is well