diabetes insipidus

Thanks goining through mini hell at the moment as I am not officially recognised with the condition until Blood/Urine samples submitted yesterday have been tested so self managing fluids at the moment & was working fine until this mornings increase in temperatures so going through another learning cycle with Fluid increase trying to avoid another espisode when have to call 111 emergency service for Dehydration etc. Hate being in Limbo.

Yesterday with Water fast From 8pm was also nightmare as Dehydration set in very quickly after 3am but as only had a few hours hung on until picked up by car & taken with my son to QA Outpatiens where with use of wheel chair my son got me to the important testing area. Following giving a sample of blood and urine I was able to have a small cup of & water and within a short period of time managed to re-hydrate very quickly although still had to use wheel chair to taxi to go home for rest etc. Hope nobody else will get what I have & yet to be diagnosed,

Will keep you all advised

Derek

Well it had to happen - another bad turn early Wednesday evening the extreme heat over powered me so was back off to QA by Ambulace again ugh nightmare continued. Was well received at A&E & Young Doctor treating me had seen my symptoms before & was straight on my case. Family & I advised there would be long wait so family went home & left me A&E care. Aprox 6:30pm until 2:30am when I arrived in Acute Medication Ward & was we'll received & cared for for the next 2 days & once again discharged hopefully fully repaired on Friday evening, still with no clear diagnosis but recognition & hopefully formal tests to come.

Should really start my own post but sure you will understand I'm none too well at the moment.

Will update Friday to Monday events later as fairly tired now & this from my iPhone.

Derek

when my son needs iv fluids we have to order special iv fluids with a reduced sodium to .22%. Without this reduction any fluids given will only maintain a steady high sodium level. something to keep in mind? if not responding to the medication (which it doesnt sound like you are because your still dehydrated?) then the hormone therapy might not be for you. Response tends to be immediate. Issue could be in the kidneys, which is treated with diuretics instead. it took a hospital nearly a month before they made this connection with my son due to doctors being unfamiliar with the illness.

Hi meagan58879 hope your Son has settled down to the balanced fluids now. Me I'm still batting with mine and since my latest admission to Hospital have started developing Multiple Sclerosis (MS?) symptoms as well for example my Skin has become very sensitive to changes in Temperature especially the recent Hot Weather we are getting in Southern England. To cooliof I am having to cover myself in wet towls have loads of Fans going & lately invest in a Portable Air Conditioning Unit I can put into any room I like. Have now been invited to meet the Hospital Endocrinology Team in Ocober so hopefully get some recognition started.

?Derek 

Hi Derek

Taking on salt helps keeps the blood pressure stable and maintaining fluid. I would eat 1/2 of one of those small little salt packages before I got the desmopressin spray. And even now I have to take salt on every day. I hope this helps and I hope you get a diagnosis and treatment soon. Tracey

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

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

Sorry to hear you are having these issues Nicholas, hopefully they will get you sorted. I am really surprised that you are having the reaction to the Desmopressin, I have always desccribed it as like spraying a fine mist of water up your nose, no smell, no irritation, etc. I guess I am just fortunate. I am also interested to hear about your 'partial DI', never come across this before and can imagine its very easy to become de-hydrated if you are not getting the thirst. Dont worry about 'going on', that's what this site is for, to get things off your chest to people that understand.

 

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

Not sure about insurance,but in Canada a drug plan with blue cross is about $100.00 a month.

But you may find if you desolve the pill under your tongue laying down it will probably work longer for you mine certainly does. Give it a try. 🤗

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.

 

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