Taking A Break/Health Issues Taking A Toll

[Deleted member 541]

I just posted in my diary how I feel after 1 day of being on this medication......Ddavp is a synthetic hormone that I will have to be on for the rest of my life.......In one day, it has proven to be a miracle for me. Not just in reducing the insatiable thirst and the urination that I have been having, but with symptoms I have just accepted, or blamed on other things over the years. All of them GONE.......Gone in 1 day, with 1 pill....

I want to cry, and probably will before to long. The relief, the feelings, the pain, and all of the symptoms that I have had for years and years.....Just GONE!!!!! This is incredible......

It's amazing what we learn to deal and live with, when there is no explanation. How we learn to compensate for things and issues when there are no answers.......I am so grateful for my Dr, for pushing me and demanding me that I be admitted into the hospital, you don't know. I can't wait to see her next week, to thank her from the bottom of my heart, for giving me my life back.......Now I AM crying.....

 

[amethist]

So pleased for you after one day and you feel the effects, that's wonderful for you.

Go have a good cry release some of that built up tension. Then you can begin again with a smile on your face.

You got me going now lol

Amethist

 

[pandora]

I am so glad it is working out in a positive way!!!! That is great news to hear...I am sooooo happy for you!

 

[TLight]

Great to hear She Cat. I had a Dr. tell me one time when I was really bad with the Fibro and I didn't want to take meds...........she was very wise and she said; "there is no need for needless suffering."

I'm glad its working for you.

 

[Deleted member 541]

Not so quick.......I think I jumped the gun, and jinxed myself.

Most of my symptoms are back. Not as severe, but they are back. The sever night sweats, sweating during the day, headaches, pain in abdomen, thirst is still an issue... I am not peeing as much, until the first pill of the day wears off, then it increases, till I take my second one.

My BIGGEST issues are......


1) I don't know how much fluids I should be consuming during the course of a day. I am trying to keep it at a limit, but I am thirsty all the time. Part of the disease. Yet, I have to keep hydrated, so I don't become dehydrated.

2) I have been on this med (Ddvap) for 5 days, and so far I have GAINED 5 pounds. It's from fluid retention, as the Ddvap is an ANTI Diuretic.

I am not willing to put on a pound a day. Period, end of story. But, on the other hand, I can't spend the entire day, with a bottle of water in one hand, and spending my entire life in the bathroom either.

Leave it up to me, to get a very rare disease.............This just pisses me off. NO PUN INTENDED!!!!!!!

 

[amethist]

Hi She Cat

It's early days yet, give them time to set the right dose for you. But a least you kicking up a stink about it so you must have got some of your fight back

Don't think I would be impressed about the weight gain either. Maybe there is another way round this bit, you will have to ask the boffins.

Hang in there you will get it sorted.

Best wishes

Amethist

 

[Deleted member 541]

There is NO other treatment, or drug on the market to treat Central Diabetes Insipidus. I am so ticked off about the weight gain, it's really an issue for me. I do an hour a day on the treadmill and I still put on 5 pounds so far in 5 days......Plus, I am on the LOWEST dosage right now, and they have already told me my dosage will have to be titrated UP....OMG!!! I can't even fathom being on MORE of this shit drug....

 

[amethist]

I did mean about the weight gain She Cat.

Sorry if I upset you with what I said, I did not mean to.

I do hope you manage to sort it all out for the best.

Amethist

 

[Deleted member 541]

No problem with you at all, Amethist....so don't worry. I am just really upset with the symptoms being back, the weight gain, and the thoughts of having to up the dosage.

I just feel like right now, it's either drown in my own fluids, from the fluid retention, or piss myself to death. Not a cheery outlook!

 

[cherryblossom]

Like you said She - the 5lbs is probably water. You have probably been in a state of dehydration for so long, that your body is just restoring the balance. Also you may not have been storing glycogen properly which also may contribute to the weight gain.

She, you will not gain a pound a day for the rest of your life, so don't let this stress you out. This is not fat gain, it is your body restoring it's correct balance.

It will also take time to get the dosage right, so you will have to be patient.

regards, CB

 

[amethist]

It's OK She Cat I can tell you are upset about this, either way it's not the way you want to be.

Keep fighting

Amethist

 

[Deleted member 541]

Thanks, I am trying really hard to take all of this in. It's been a really stressful month or so, and then to be hit with this diagnosis.....It just sucks.....