Monday, April 4, 2016

I told you so - and I was right (Idiopathic Intracranial Hypertension)

A little back story - as you all know last Nov I was diagnosed with Idiopathic Intracranial Hypertension (IIH) which means I make too much cerebrospinal fluid (CSF) and to make matters more complicated I have a narrowed transverse sinus which helps drain the CSF out of my brain down  my back - so while there's plenty of it going in, not enough of it going out. Well when I found out about all this I spent 16 days in the hospital trying to get it all figured out and trying to get the headache/migraine under control. I was absolutely ready to leave when they finally let me loose!

So when I had the follow up with the neurologist he wanted me to see a neuro opthamologist to make sure my optic nerves weren't in jeopardy. 

I was fortunate that I didn't have to wait too long to see them and I actually got in at the end of Feb. Well I was fortunate and the optic nerves weren't in jeopardy. Unfortunately this doctor thought it was a good idea to take me off the diamox that was used to keep my IIH under control because my optic nerve wasn't in jeopardy and so diamox wasn't the drug of choice - I was told to switch to topamax to manage the headaches/migraines.

So fast forward 3 weeks and I could feel that my pressure was building - I was starting to get more pain behind my Rt eye, more headaches, more nausea, and I just knew that it was just a waiting game. Well last week I had clinical so I had to wait til I got back home and the next day when I knew that the car wouldn't be needed, I drove myself to the hospital. I told hubby what I was doing - that I figured that my pressure was elevated again and my vision was starting to get hazy again.

When I went to triage my BP was 181/104! My pulse was running at 135, all because my head hurt so much! When I got to the back and was able to relax a smidgen my BP came down to 156/103 - yes still high but I was still in crazy amounts of pain and I hadn't gotten any pain medication at that point. Thankfully I had an awesome nurse who took my info and then went and spoke to the doc on my behalf so that I could get a dose of pain meds so that I could get a little relief! 

Unfortunately it took waaaay too long for me to actually see a doctor - like as in 7 hrs! 

I saw the doc who wanted me to see a neurologist. I saw him Monday who talked about starting me on the diamox - I told him that I wanted a LP because then that will give the diamox a chance to reduce my CSF production and will decrease the current pressure in my noggen (head) - he told me that this wouldn't help because CSF fluid reaccumulates quickly (already knew that) but I told him that in my best judgement and knowledge that this was the best course of action and that this was the course of action the last time that this had happened (in November) - he said that I could bring this up when I saw the neurologist - so I stated this entire thing all over again to him. He tried to rebuke me but when I explained that the neurologist in the other hospital prescribed that course of action and then I posited back to him whether that course of action was incorrect - well then he turned his position around and freely offered the LP and said that if I wanted it then he was willing to do it if I was willing to take on the inherent risks - to which I was - mostly!

So he set me up in the left lateral fetal position (all curled up) - so that my back was curved - and he tried SIX times - twice he hit nerves and sent shocking pains into my hips and legs - to that I told him all about it - he said he figured he was just in the dural space or was slightly off centered. He said that the needle he was using wasn't long enough. It doesn't help that I'm not exactly a twig figure either and I've gained a few pounds (and by a few I mean like 50 in the last 2 years) because I can't exercise because of the rectal abcess/fistula escapades. So ya, I got poked a whole bunch with no results! And to make matters worse he screwed up my back!!! But he did start the diamox and gave me a loading dose of 1000mg to hopefully stop the production in its tracks.

Thankfully he asked anesthesia to come and see me and she did so the next day and was able to do the LP and did the OP = 31 - so she took off 13cc of fluid and the closing pressure (CP) was 10. I could tell the difference right away. I still had a headache but it wasn't as bad. We completed the tap and I laid on my back for two hours because I didn't want them to say that if my headache was really bad or worsened that it was becaue I got up too fast afterwards! (they've said this before - even though I've always waited the required hour) Thankfully when I got up I didn't have any increased headache.

Now I unfortunately had to deal with the crappy ass headaches and pain in the forehead, behind the eye socket, at the base of the head, at the shoulder blades and the spine from the base of head to about mid chest/back. The back and shoulder blades was pressure and pain - it's hard to describe. Either way it sucked! I was on morphine pretty much every 2 hours! It was no way to live. To top it off, where they did the LP at the L3-L4-L5 they screwed up and so I had shocking pain going down my legs and into my hips - holy mother fucking shit did it hurt!!! Several times I went through 16mg of morphine in 2hrs! and another time I went through 20mg in 2hrs! All because they fucked up my LP!!! Thankfully that pain has decreased as time has gone by.

So because of the pain that I was experiencing in my back my doc decided that I needed four hour around the clock neuro assssments even though I didn't have any deficits when he assessed me and I am and was completely alert and oriented the entire time - I could and can tell you if anything changes! I had told him that I was having tingling in my fingers and my feet and a bit of numbness in my feet - something I had experienced when I was on the diamox previously - a known side effect of the diamox - something to which I was medicating with lyrica.... I had asked for an increase in lyricca actually because we were increasing the diamox and so I knew that these symptoms were just going to increase as well. I was told that I had to wait on this because the importance was on knowing about side effects of diamox or topamax because they were titrating these and so I would have to ask my primary care physician when I was discharged to deal with that. I was so irritated. I wasn't even told that they were increasing the topamax to begin with.

I had gotten into it with them about increasing meds because when the med student came by he had asked me straight out what I wanted. I told him - I wanted the diamox increased. With IIH I make too much CSF. The diamox will ensure that I make LESS CSF. Therefore INCREASE my diamox so I make less CSF. They were concerned because the known side effect of diamox is that it causes metabolic acidosis. The bad thing about this is that it can cause your organs to shut down. Ya it's bad. So they are very leery when it comes to increasing a medication that will cause metabolic acidosis.

With me I am susceptible to metabolic acidosis when it comes to diamox. We know this because I went towards that in November. that's why I was in the hospital for quite a while because we had to titrrate the medication for quite a while (and also work around the doctors shit) - so I was told no - to which I did not take very well because I knew that my VBG (venous blood gas - it measures metabolic acidosis) was stable and that I was only slightly acidotic but that with this med I was/am always slightly acidotic and therefore a trial of increasing the medication should be tried because if not then my pressure will not lower and therefore my pain will remain increased and I will not be able to leave! So the med student left and an hour later the resident came and I said the same thing and he said that he wasn't sure that the answer will be any different but that he would take this information to the neuro team. He was like ya, this is a zebra condition, it's not like we get this condition everyday, we don't know how to treat it easily, it takes time and patience. Ya I know it is, I have not just one zebra conditions, I have two. It sucks!!!

The next day the med student came in and gave me the good news that I got my increase. Then the big guns came in and told me that since I got the increase I could leave that day or I could stay that day or I could leave the next day after I have my blood drawn. I thought it was best if I had my blood drawn after I had my VBG after I had the increase. Additionally, the medication is fast acting so the VBG would be accurate so when it came back sshowing that it was the same as before I was good to go!

So I flew the coop. Hubby and I went out for lunch and then we went to my primary care physician office to make an appt - I got in the next day because I had been hospitalized otherwise it takes a while to get in. When I did see him he wasn't exactly shocked/surprised. We made a plan to have my VBG checked next wednesday to ensure that it hasn't changed. If it's still stable then we'll increase the diamox and I'll talk to him about decreasing the topamax. I'm finding the topamax is making me foggy - other ppl say that this is common. I'm still finding that my pressure is a bit high and an increase in the diamox will help bring it down. But we shall see. Either way, I love my primary doc!

1 comment:

  1. Oh my goodness, Lady! This was quite the nightmare adventure you've been on. I'm glad that you are out and it is such a blessing that you are a nurse and able to tell the docs exactly what you need. However, it sucks that you often have to be your own advocate and tell the MD's what needs to happen... We're all human, but the medical system is becoming increasingly frustrating for me. I'm glad you are being heard, though, and I pray that you continue to get better and hopefully something can be done to heal you instead of just mask the symptoms and problems.

    Many blessings dear friend,