I
saw my pelvic pain specialist last week and my gyno earlier this week.
They need to stop my current hormonal treatment (Synarel) as it could be
affecting my other health condition (Idiopathic Intercranial
Hypertension).
My IIH reared its ugly head for the first time in Nov last year.... blurred and double vision, swelling of the optic nerve and pins and needles in hands and feet. I was lucky I talked to my GP about it as if it goes untreated it can kill you. So I started seeing an opthamologist and neurologist, we booked a date for a lumbar puncture (this is the only way to confirm the diagnosis and also can be used to help treat it). During the lumber puncture the technician did something wrong and took too much fluid causing me to have a low pressure head ache (my brain was bouncing off my skull instead of floating). I was taken to ED were they attempted another lumbar. The head neuro told ED to make sure an experienced person doing it, but they seemed to think they could handle it.... it was done in ed just on the bed I was on without any guidance what so ever. I did protest about this but they went ahead with it any way.
They went in blind and I ended up guided them on where they had the huge needle they were sticking into my spine was going. By telling them nope that’s not it, ‘why?’ cause my arm is numb!
So in the end they stopped and sent me to intensive care where I stayed for 3 weeks, was only able to walk around and do stuff in the last week.
After that I went on a medication that lowers the production of fluid and helps with the headaches but was told that it was only to be taken for 6 months max. Everything seemed to be going great, things were settling down and we were even able to stop treatment just before the 6 months.
Then a month ago I started getting headaches again, started to get blurred vision again, then 2 weeks ago I had my first ever seizure... man those are scary! I was all alone and kinda knew what was happening but at the same time I didn’t. I felt a funny tingling feeling on the back of my neck and then down into my arms and legs, then it felt like an electric shock, everything went dark I couldn’t talk or move. I don’t know how long that lasted and I was alone so who knows. But I remember thinking “I don’t like this I want this to stop” and it did. After I was a little confused and had a tinny taste in my mouth. I rang my neruo in the morning and he said to start taking my meds again, if I had another seizure go straight to the hospital.
I have now seen him in person and he verified that yes my IIH is coming back and for now just to take the meds. I remember them saying last time that if things didn’t improve or it came back they may have to put a shunt in my brain. I would prefer not to have brain surgery but if that is the only option then I suppose so.
So back to the gynea and pain specialist.... Synarel has been linked with intercranial pressure, not much but does have some affect. So they are taking me off Synarel to see if that makes a difference. This sucks as it was actually helping, yes the first few months on it I had a really rough trot but now things are doing pretty ok, yes I still have underlying hormonal fluctuations, and I still have pain, but things are definitely better on it!
So now after xmass and new years I am going hormonally cold turkey... nothing... to see what my body does and also a wait and see game, will things go back to being worse... I am not really looking forward to it. I don’t like the Tegan that is in pain (I mean 10 out of 10 pain) all the time, the Tegan that becomes anaemic due to blood loss, the moody Tegan!
After that we are looking on probably going to a progesterone based medication... they talked about Mirena again.
I have been on it before and I am telling you now my body did not agree with it at all... I bled more, I had more pain, my hot flushes got worse... my body in the end decided to push it out and in the process got it stuck and they had to go in and remove it....
I was at uni when this got really bad, I was bleeding heavily but needed to be there as it was exam time, I was starting to feel sick, had to rush to the bathroom and vomit then I passed out from the pain and bleeding. A nurse found me and got some people to help carry me to the onsite Dr’s. They took me into the nursing bays and waited for me to wake up. My GP at the time came in to see me (she works on campus) and told the other dr’s and nurses my history. They decided to book an ultra sound for me and rushed me off to hospital when I woke up... that’s when we discovered the Mirena decided to push its self out. They took me back to the surgery on campus and took it out and made me call a friend to come get me and take me back to their place... I wasn’t allowed to be alone.
So yeah my thoughts on going back on Mirena are mixed, I know that my body could have changed and that it might accept it now and it may be good, but there is also the risk that what happened last time could happen all over again =(
My IIH reared its ugly head for the first time in Nov last year.... blurred and double vision, swelling of the optic nerve and pins and needles in hands and feet. I was lucky I talked to my GP about it as if it goes untreated it can kill you. So I started seeing an opthamologist and neurologist, we booked a date for a lumbar puncture (this is the only way to confirm the diagnosis and also can be used to help treat it). During the lumber puncture the technician did something wrong and took too much fluid causing me to have a low pressure head ache (my brain was bouncing off my skull instead of floating). I was taken to ED were they attempted another lumbar. The head neuro told ED to make sure an experienced person doing it, but they seemed to think they could handle it.... it was done in ed just on the bed I was on without any guidance what so ever. I did protest about this but they went ahead with it any way.
They went in blind and I ended up guided them on where they had the huge needle they were sticking into my spine was going. By telling them nope that’s not it, ‘why?’ cause my arm is numb!
So in the end they stopped and sent me to intensive care where I stayed for 3 weeks, was only able to walk around and do stuff in the last week.
After that I went on a medication that lowers the production of fluid and helps with the headaches but was told that it was only to be taken for 6 months max. Everything seemed to be going great, things were settling down and we were even able to stop treatment just before the 6 months.
Then a month ago I started getting headaches again, started to get blurred vision again, then 2 weeks ago I had my first ever seizure... man those are scary! I was all alone and kinda knew what was happening but at the same time I didn’t. I felt a funny tingling feeling on the back of my neck and then down into my arms and legs, then it felt like an electric shock, everything went dark I couldn’t talk or move. I don’t know how long that lasted and I was alone so who knows. But I remember thinking “I don’t like this I want this to stop” and it did. After I was a little confused and had a tinny taste in my mouth. I rang my neruo in the morning and he said to start taking my meds again, if I had another seizure go straight to the hospital.
I have now seen him in person and he verified that yes my IIH is coming back and for now just to take the meds. I remember them saying last time that if things didn’t improve or it came back they may have to put a shunt in my brain. I would prefer not to have brain surgery but if that is the only option then I suppose so.
So back to the gynea and pain specialist.... Synarel has been linked with intercranial pressure, not much but does have some affect. So they are taking me off Synarel to see if that makes a difference. This sucks as it was actually helping, yes the first few months on it I had a really rough trot but now things are doing pretty ok, yes I still have underlying hormonal fluctuations, and I still have pain, but things are definitely better on it!
So now after xmass and new years I am going hormonally cold turkey... nothing... to see what my body does and also a wait and see game, will things go back to being worse... I am not really looking forward to it. I don’t like the Tegan that is in pain (I mean 10 out of 10 pain) all the time, the Tegan that becomes anaemic due to blood loss, the moody Tegan!
After that we are looking on probably going to a progesterone based medication... they talked about Mirena again.
I have been on it before and I am telling you now my body did not agree with it at all... I bled more, I had more pain, my hot flushes got worse... my body in the end decided to push it out and in the process got it stuck and they had to go in and remove it....
I was at uni when this got really bad, I was bleeding heavily but needed to be there as it was exam time, I was starting to feel sick, had to rush to the bathroom and vomit then I passed out from the pain and bleeding. A nurse found me and got some people to help carry me to the onsite Dr’s. They took me into the nursing bays and waited for me to wake up. My GP at the time came in to see me (she works on campus) and told the other dr’s and nurses my history. They decided to book an ultra sound for me and rushed me off to hospital when I woke up... that’s when we discovered the Mirena decided to push its self out. They took me back to the surgery on campus and took it out and made me call a friend to come get me and take me back to their place... I wasn’t allowed to be alone.
So yeah my thoughts on going back on Mirena are mixed, I know that my body could have changed and that it might accept it now and it may be good, but there is also the risk that what happened last time could happen all over again =(
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