low sodium counts does not actually mean your sodium is too low; it means your fluid levels are too high and diluting your sodium. this is why restricting fluids works so well to get the sodium levels back to normal. it was a hard thing to get used to but once you have had hyponatremia (dangerously low sodium levels) and felt like death it is pretty easy to stick too. i also have siadh which is also a sodium issue. carbamazepine is also a factor in this along with hypothyroidism, chronic pain and a head injury or surgery. four strikes and you got siadh. a healthier response to low soodium is not upping the salt but rather cutting back on the fluids a bit. as low as 1000mls is likely too low but try 1500-1700 to start. of course discuss this with your doctor first. not everyone needs to do this.
i will look into the lupus factor. thanks for the heads up.
That's interesting, Patty. I'm sure I read somewhere (on here?) that Carbamazepine leaches the salt from your body though - is that not true? It does seem kind of odd that it would somehow be increasing fluids - unless it's causing fluid retention?
Can I ask - how did you know you had SIADH - what symptoms did you have?
Patty said:
low sodium counts does not actually mean your sodium is too low; it means your fluid levels are too high and diluting your sodium. this is why restricting fluids works so well to get the sodium levels back to normal. it was a hard thing to get used to but once you have had hyponatremia (dangerously low sodium levels) and felt like death it is pretty easy to stick too. i also have siadh which is also a sodium issue. carbamazepine is also a factor in this along with hypothyroidism, chronic pain and a head injury or surgery. four strikes and you got siadh. a healthier response to low soodium is not upping the salt but rather cutting back on the fluids a bit. as low as 1000mls is likely too low but try 1500-1700 to start. of course discuss this with your doctor first. not everyone needs to do this.
i will look into the lupus factor. thanks for the heads up.
i had never even heard of siadh till i was admitted to hospital with dangerously low sodium levels. i had a really bad headache all day; just could not get a handle on it. my husband called and said he would be home from work in a few minutes. i went to the bathroom feeling not different than i had all day. by the time he came home 5 minutes later i was on the bathroom floor shaking and feeling like i was dying. we went to emerg and it was discovered my sodium was incredibly low and i had vertigo. only three days earlier i had been diagnosed with a blood clot in my brain and had been put on twice daily warfarin injections. the immediate thought was that i was having a brain bleed but a ct scan and other tests showed the clot to be stable. scary times. i was immediately put on fluid restrictions of 800mls per day and they reduced my carb by 200mg.
i was initially diagnosed with vertigo hyponatremia. the next day my sodium was up and so was my pain so my carb was brought back up. since then i have had my sodium checked twice daily initially during my week long hospital day. then daily upon leaving the hospital. then every few days, then weekly and now every few weeks.
i was diagnosed by an endocrinologist and a internal medicine doc with having siadh.
Hi Patty - no I'd never heard of it either. I had to go look it up when you told me you had it! It sounds like you had a really scary experience with it.
So it's the Carbamazepine that causes this, and they reduce your fluid intake to stop it happening? I assume you tried other drugs without success?
carb is part of what causes this but mostly i suspect it’s the mvd surgery. any brain surgery is also considered a brain injury and brain injuries can cause siadh. i am uber sensitive to the meds and have not had much success with other meds. oxicarb is better for pain control but worse for sodium issues.
Yeah, know what you mean, Patty. I've had a hard time with the meds too: couldn't get past 600mg of Carbamazepine without "toxic" side effects, tried Lamotrigine and found it very good on pain control but it gave me the worst migraine for six weeks - no exaggeration, a full 24/7 migraine with nausea, motion sickness, light and sound sensitivity. It was ferocious. After that I tried Gabapentin but it didn't work at all, although it gave me plenty of side effects. Now my Carbamazepine seems to have disrupted my thyroid, caused Sjogren's Syndrome, brought me out in a rash, induced anaemia of some sort and has produced a steadily worsening neutropenia, Not a great track record, that!
I suspect my doc may be going to suggest I stay on it, but I'm really not keen. I'd hate to think I was in a period of genuine remission but wasting it by staying on drugs that are causing so much havoc. I'm waiting for blood test results (yet again - it's all I seem to do) so hopefully we'll see just how bad/good things have got.
I have both also. Altho I don't seem to have pain on the right side. Its my left side. Taking Tegeretol and I always feel like I am in a fog. The worst o the pain is kind of gone yet still there. I am loosing hope on all the things to try.
I was like that for a long time, Moose. Don't give up hope. For ten months I was on Tegretol and other things in combos. While it got rid of the electric shocks, it didn't remove the background sensitivity that still made it too uncomfortable to eat, brush teeth, etc. I despaired of ever getting one of the magical remissions people talked about, but within two months of getting B12 shots, I suddenly went into remission. That may not work for you, of course, but remissions and improvements in pain can both be sudden and come from unexpected sources - you just have to keep trying and moving forwards. Best of luck. X