Hey Tracey,
I am getting a workup for DI, finally. I have had many hypernatrmic episodes because I have not been able to get this diagnosed, and it has been so many years (7). I also do not have a thirst response so it is literally impossible for me to manage my sodium levels.
Thank you
Hang in there Nicholas
Keep trying the ddvap and ad toy md about anti nausea meds
Also try eating before you take it
Goid luck
Hi Brendan
Hopefully you'll get a diagnosis soon and start treatment. It took a while to get the overnight your nation under control so be patient. For me it ended up taking A couple of years to get things working well
As The most important thing is not having hyponatremia or side effects like vomiting or passing out from the Di
Tracey
Hi, im so sorry for what happened to you and i hope you're getting better!
im 21 years old and i've had DI for a year due to a cyst in the pituitary gland. We had the cyst removed but the DI got even worse and im taking the desmopressine tablets
My endocronologist is really helping me with the medication and im a medical student so i did not have any trouble understanding my illness but i really want to talk to someone who has it. I fel so exausted and i haven't had a good night sleep in so long. Im getting depressed but i feel like i shouldn't because it could have been worse. The cyst caused other hormones to be be unbalanced but we had that covered.
So i really want to know if any of you have tips to get used to this new life.
Thank you so much.
Hello Syrine
Thank you for your post, sorry for the long delay in my reply.
Tips for the new DI life.
1. Patience- your condition may take time to stabilize. It took me 9 years to get the right dose at the right times to keep away hyponatremia, exhaustion, low BP etc.
2. Fatigue- this seems to part of the package. What i find is if my DAVP is wearing off I start to get profound fatigue physically and mentally. My thinking slows and sometimes even my speech is slurred doue to the suden fluid shifts. But one I have the meds it correct quite fast. Trying to get back into regular exercise helps boost the energy levels. As well to have enough sodium in your body to retain the fluids you do have but do not go over 2500mg./day
3. Mental acceptance. What I mean by this is none of us like having this problem, but we will all have it for life as there is no cure. So I have tried to just flat out accept I have it, yes it can be an inconvenience, especially when the meds wear off and the urine starts flowing too much and too often. Try to figure out how you feel when the medication is wearing off so you know how best to react emotionally, physically, mentally. As soon as the slightest bit of dehydration happens we will feel lower emotionally and much more fatigues for sure.
Depression: yes I went through this too. It is a lot to take in ghaving a cyct, surgery and now a life long condition that needs hourly/daily monitoring. But you can and will get back to some normalcy it will just take time. Be kind to yourself. Eat well, exercise, surround yourself with joy and do things that make you happy. Go out doors to nature. If needed seek counseling, it can really help. But aviod doing nothing and letting yourself sink deeper. As for sleeping I have struggled with this for 12 years since the brain injury. I have never slep much or well since. Make sure you have your meds around dinner time. I find if you take it too close to bed time it can sometimes have a stimulating affect (on my ) brain and I cannot sleep. But do not take it to early or you will be peeing all night. You will sfind the right balance over time.
Its a journey this experiemce with CDI that is for sure. It is wonderful to now finally have an online community to talk to, so thank you for reaching out I am happy to help in any way I can.
Be well
Tracey
Make sure to have enough fluids to not be dehydrated.
Watch heat, in really hot conditions I have found I am much worse off. I can no longer tolerate the heat without feeling like I am dying of thirst. So always have water on you.
There are at least 4 generations of my family members that have DI. My mother-in-law, husband, son and grandson. We do not know if my mother-in-law's father had it - as he died when she was 12 years old. My mother-in-law is now deceased, but I deal with it daily through my husband, son and grandson. My daughter could be a carrier, but if so, she has not passed it on to her 2 sons and daughter. All my family members take desmopressin (generic DDAVP) tablets. I'm glad I found this board and look forward to learning from each of you.
Looking for some help for my mom...
15-20 years ago she was diagnosed with DI. Was prescribed DDVAP, minimal issues for a while. One day maybe 12 years ago she was walking our dog and randomly got dizzy and passed out. We took her to the hospital and they thought she was dehydrated and that was it, well over the past few years she has seemingly randomly passed out several other times, sometimes going 6 months to a year without having anything like this happen, but in the last year she was diagnosed with restless leg syndrome and degenerative neuropathy which the doctors thought was causing her to occasionally faint. She noticed if she stands up too quickly she will occasionally become light headed and once or twice this had ended up with her passing out. The doctors prescribed a mild muscle relaxer which she has been taking about half a pill (don't know the name or dosage off top of my head) once a day and that seemed to help for the past 6 months she hasn't had an issue. In October 2017 she was in California on vacation with my step dad and aunt and uncle and my aunt has been a nurse her whole life and my mom ended up passing out and my aunt was there and she told my mom it looks like she's actually having a seizure not just passing out. So Dr just took her word for it that it is seizures, put her on keppra (levetiracetam), then briviact due to side effects, and told her she shouldn't drive at all until they see if this happens again. 6 months later she just got off the seizure meds no issues besides side effects from the seizure meds. Last week she passed out called ambulance the EMTs saw her pass out again was severely dehydrated gave her 2 bags of IV sent her home. I'm looking for anyone who has had experience with fainting related to their DI or other related issues and what can be done to help prevent this in the future. Thank you in advance for any help or suggestions.
She also was diagnosed many years ago with diabetes insipidus and she broke her neck diving into a shallow pool when she was a child so we have no idea if either of those is contributing to any of this but we're looking to anyone we can for any help we can to try to help her to keep this from happening again and help her continuing to live a normal life. If anyone has any information which could possibly help please let me know!
Thanks,
Mike
Hi Mike I had a lot of passing out problems with my CDI as well. My doctor said it was from orthostatic hypotension. Because of her low blood volume we get very little blood pressure. The Two ways she can Improve the situation are by first drinking enough water during the day. And second having enough salt on your food during the day. Are you secure around little McDonald’s salt packages in all my pockets and when I could feel my blood pressure getting lower I would open one and lick the salt and then have a sip of water to rinse it down and it instantly raise my blood pressure. Another good one is just drinking some chicken bullion in hot water once or twice a day to keep the blood pressure regular
I hope that helps. Also she may need a higher dose of DDAVP. Cheers all the best
Tracey
I was recently diagnosed with DI at the age of 24. After the horrible and long diagnosis stage, I've generally had no problems until now. This month I became very ill thinking I was dehydrated, after 3 hospital visits in as many days I finally spoke to an endocrinologist who explained I had dangerously low sodium and this is something I should look out for. When I was diagnosed I received literally no information about caring for my condition and after my recent experience and after reading all of your posts it is really opening my eyes to DI! Thanks for all the education and great stories
Hi can u give me more info about diabetes insiptous my daughter aged 12 jus diagnosed please thanks
Hi can u reply back to me please daughter aged 12 jus diagnosed diabetes insiptous n is on depropressing but her periods hav stopped.. scared 😟 thanks
Hi Ucandy
I have had DI for 50 years,got it from a blow on the back of my head hitting a step falling backwards. Used the spray for years and still do during the day,when the pill wear off. I mentioned this before,but I think well worth typing. The pills swallowed only seem to kick in about half way for about 4 hrs. But if I dissolve them under my tongue with out talking when I go to bed at night,they last from 16-30 hrs. Tried crushing them and using during the day,works a little better but not as well as the nasal spray. Good luck. Really like to here back if it works. I’m from Alberta Canada.
God Bless Rod
What caused the diabetes Insipidus or what does the doctor think caused it?
Hi linda long story lol drinking so much water and goin to toilet during the night - lack of sleep.. but thankfully there’s no side effects r other problems she went thru 33 blood tests 2 mri scans lumber puncture so everything is ruled out so hopefully she grows out of it. I don’t know much about it to tell u the truth so I came on here to get more information but a lot of people hav worst problems so goin to see the main woman who specialises on this condition in 2 weeks il no more. Thanks
It can run in the family miss generation. A hit or a fall.. major accidents it can cause this I think lol new to this
Hi Shannon, I have had it for over 18 years now and these things have never been explained to me either. Fortunately I have not had the issues you have had. Are you in the UK by chance? Seems that the USA and Canada do checks for more often and are probably more advanced with this stuff.
My name is Madeline! I am 18 years old and have grown up with severe diabetes insupidus. It definitely changes the daily routine but is completely manageable. I know it’s scary but your daughter will be fine!
Hi I hope this helps anyone new to this disease. I am a 42 year old female and have had a partial form of diabetes insipidus now for 8 years, ever since the birth of my son. I drink approx. 5 litres of water a day without medication.
The best way to start taking medication is take a small amount and gradually increase it to avoid fluid overload.
I initially started on 2 tablets a day (0.1mg of desmopressin) and worked my way up to 3 tablets. You should be aiming to drink about 2 litres of water a day while on the medication.
Its a good idea to miss a dose once a week or delay taking a dose to avoid too much fluid retention especially when you start taking the meds. Also a really good idea to weigh yourself every day to avoid too much water retention. I find I sleep better if I miss a dose. It took me a good 6 months to get back on my feet but it is manageable. And it is possible to have a good life with this disease
Best wishes
Ellie
Hi all . I am Roman, I was diagnosed at the age of 3, I was cured of this disease by the age of 22, I started therapy at 18, and by the age of 22 I completely eliminated the disease in myself. I’m 35 now, I had a checkup in New York the other day, I’m completely healthy with the exception of minor kidney problems (drinking a lot of water did not go unnoticed) But overall everything is fine.
Just like me, my sister had the same disease, only she did not undergo treatment (the disease was also detected in her sister at the age of 3). My sister is 3 years younger than me and now she is 32 years old. At the moment she has a partial loss of vision, huge problems with her kidneys and the health of the body, she did not do therapy, as I used and uses drugs for diabetes insipidus. all drugs that are intended for this disease have caused irreparable damage to the health of the body
Hello . I am from Russia but have been living in the USA for a long time. I cured this disease in Russia under the strict supervision of a doctor who knew and practiced this disease for 40 years. The preparations that I used for this disease were MINIRIN 0.2 mg, I drank half a tablet of 0.1 mg at lunch and 0.1 mg in the evening before bedtime, I took a break from taking the tablets on weekends and holidays. The disease was from 3 to 22 years. Now I am 35 and I am completely healthy as a bull, I am happy to learn from my experience in this disease if you or someone else was diagnosed with 3-4 years like mine