Sorry things have been quiet and my post have been very sporadic over the past few months...
As you may or may not have guessed things have been quite busy and a bit hectic to be honest.
As stated in my last posts M. and I went to Forster for Christmas.
Over the Christmas break we saw a fair whack of our friends...before Christmas M. had his work party in Sydney, but we were already in Forster so we drove to Newcastle where he stayed with some of our friends for the night and caught the train to Syd.
I also got the chance to catch up with them, but then left to catch up with another friend for a couple of hours before heading out to yet another friends to stay the night- I maximised my time in the hunter for the short time period I was there and saw as many people as I could!!
It was great seeing them all and having a good catch up is always great for the soul!
We had three Christmas'- one with my family (sans Mum, Dad, and my soon to be sister-in-law); one with M.'s Mum, Mum's partner and his brother; and one with his Dad, Grandma, Aunt and Uncles, Dad's partner and her daughters.
We did my family the weekend before Chrissy, we all gathered down at a local park and had a pretty awesome BBQ, had some pretty epic play time in the kids playground, and did presents (well M. and I did- we only do kids for presents, and as we don't have kids we don't get anything. I also give out a small handmade gift to each family- recipes to come).
Then we headed back to M.'s Dads for more presents (the Dad's partners daughters have kids), a massive Roast Christmas Lunch with all of his Dad's side of the family and some relaxed drinks....unfortunately my body had other plans though!!
It isn't nice to talk about but I had a period from hell, it was heavy and extremely painful AND it did end up interrupting my fun on the day- I had to depart the festivities a while after lunch to go rest with ice packs and extra pain killers.
We came back just before New Years and spent New Years Eve having a lovely home cooked meal and some relaxed drinks at a friends place.
After New Years things have been rather busy between medical appts; catching up with friends in our local area; heading back to Forster again for a weekend; and then this weekend just past I flew up to Brisbane to visit my younger brother, his missus and their little one.
A couple of weeks ago, M. and I headed back to Forster to visit family again. M. did some work for his dad at the caravan park he runs and I attended my sister-in-law's (second eldest brother's wife) 30th Birthday Party at the Tuncurry Race Courses, followed by taking my eldest brothers little ones to Stardust Circus and making pizzas!!
It was very windy that day, but we lucked out and found a protected area, which was awesome.
I'm not on any Hormone Replacement Therapy (HRT) meds atm so my cycles are a little all over the place, even so they were normally within 34-40 days, but atm I haven't had a period in over 45 days and my pelvis is very freaking painful!!! At times I’ve had symptoms that would normally prelude a period but it does not eventuate for some reason, so for now I am just waiting.
With my IIH things have taken an interesting turn...
My GP finally listened to me and allowed me to have a blood test to prove that my dehydration was getting beyond the point of reasonable and that I was not able to treat it at home myself.
My blood results came back with some expected but not so good results, my sodium was on the high side of 'normal'; my chloride was was moderately above the 'normal' range; my renal function/kidney function was just inside the stage 2 of CKD (which I am not very happy about as I have been on her about my dropping eGFR for a while now, as it has been slowly dropping), my bicarbonate is on the lower end of 'normal'; and my blood pressure was low- all of these things clearly indicate I am dehydrated!!!
So she finally agreed that yes I am chronically dehydrated and wrote a letter to my neurologist stating that I have chronic dehydration, that my endocrinologist has previously done tests to see if the dehydration, night sweats and hot flushes were caused by hormones, sickness, or likely to be medications- it seems to be more likely medications, with Diamox (one of my IIH meds) being the culprit for the dehydration, as it is a diuretic.
So I recently went to see my Neuro, Dr O. and he agrees the dehydration is indeed chronic and in need of treatment. We talked about how I am still having headaches everyday and that sometimes I am able tell the difference between an IH high pressure headache and a dehydration headache.
Once more we talked about Intracranial Pressure (ICP) Monitoring, but I said that I am worried that with my not knowing the extent of my dehydration headaches compared to my IH headaches I do not really want to go ahead until we know for sure that it is IH. Better to be safe then sorry!
He agreed, and suggested that I come off Diamox, to treat the dehydration and see if the headaches minimise/ or if they get worse due to coming off the Diamox and my ICP increasing. Then if and or when my headaches do get worse then we go in for the ICP Monitoring.
I have now been off Diamox for three weeks and my dehydration has indeed slowly improved, but unfortunately my headaches have increased and the symptoms are more IH high ICP pressure headaches- meaning that coming off the Diamox has been a bit of a catch 22!!!
I am going to wait a bit longer until I decided for sure that we go ahead with the ICP monitoring soon, as I would prefer to wait until the Diamox is completely out of my system.
I hope you have all been well and that your Holiday season was jolly and that this new year brings happiness and joy!