What IIH Feels like

So… after posting on my facebook that I would like to scoop out my brain, because that had to feel better than what I was feeling. And I had people who understand IIH ask for the scoop when I was done, and other people who don’t be extremely confused. So… let me give you an example as to what it feels like.

IIH, for me, is a combination of feelings.

#1. It feels like my head is going to explode. Not just a little tiny explosion… but a nuclear bomb level explosion. There is so much pressure in my head that I often times wonder if my eyes are going to fall out or if I will start leaking brain matter from my nose.


#2. Now Along with the feeling that my head is going to explode… it also feels like it will implode. People may think this is going to cancel each other out… but in fact they are not equal and opposite reactions, they are compounding reactions. The imploding adds to the exploding, and vice versa.


#3. It also feels like because of the pressure that my brain itself is trying to make its way and squeeze into my spinal column. My neck due to the feeling of my brain attempting to make its way down into my spine, is also very stiff, and I have a feeling that the pressure is messing with the alignment of my vertebrae. I can turn my neck and it pops, I can see the chiropractor, and he pops it, then 3 min later, it needs to be popped again… It seems like it is a never ending battle, me vs my neck. The neck being stiff isn’t the only issue… we also have to take into consideration the PAIN that is caused by trying to squeeze this 3 lb organ into a very small space. It hurts…

#4. It also randomly makes me dizzy… now I don’t know if this is just my vertigo flaring up again, or if this is something new, or if it is related to the IIH… but it seems to happen more (not 100% of the time, but about 65%) when I have IIH flair ups.

#5. I also get nauseous… and when the IIH flair up coincides with the vertigo… I have no idea how I am able to hold my lunch down, but normally I do.

Now… at least 3 of these things happen all at the same time… the first three. It isn’t always this bad… but to some varying degree, it always includes the three. The 3rd has just been constant, but the brain going into the spinal column feeling… that gets much worse when the IIH flairs up. People ask me… isn’t there something they can do for you? The answer is… we are trying. I’m on Diamox (which is supposed to help reduce the amount of Cerebral Spinal Fluid my overachieving body makes). I’ve had a spinal tap… which I hope to NEVER have to repeat. I’m still looking for a good neuro-ophthalmologist here, as I lost mine when I moved… but there are none in network within 40 miles of me, or really… even within 100 miles of me… so I have to find one, and stick to them because I have to go through all this red tape to *POSSIBLY* get them covered by my insurance as if they were in-network. So this means I would like to make sure I like them first… so I’m waiting to see if the doctor I’m going to see next Weds has any suggestions… and If I like and TRUST this new doctor. If this doesn’t work, then I’m going to see a plain old Neurologist, and see if they even KNOW what IIH is…


On another note, and yes just a note (for now), I saw my new audiologist Monday… but that is a post in and of itself. 


Leaping forward

used to be my enemy… now its just annoying

To a person with normal balance, the above picture of mud is just that… mud. Its dirty, it gets on your shoes… and its a little slippery… but to a person like me, one with balance issues… ones with vertigo… the above picture would result in a VERY bad day… especially when, like this morning, I was an hour and a half away from home, an hour and a half away from a shower and clean clothes… when I slipped this morning, my first thought was “oh crud… what am I going to do?” (this is the PC clean version)… but what happend in the blink of an eye showed me something… although I was discharged from balance therapy a week ago… and mentally I was more than ready, I hadn’t thought that I was physically ready yet. I still have dizzy spells and vertigo spells every once and a while, I’m still not a fan of the stairs for fear of falling up or down them (that has happend for years) . What happend though? Miraculously… I caught myself from falling!!! I was a bit slippery, I was a bit off balance, but I did not fall and result in the following…

this was not me!

for me, this was a huge leap forward… I can actually learn to trust myself, trust my inner ear to keep me balanced and no longer end up as a big muddy mess when I encounter mud! It may seem little to some people… but to me, it was a huge step.

On other news… I am going to Swedish Medical Center tomorrow for my CT scan, my mom will be with me! (Yes that is right… did I forget to mention that my wonderful mom is visiting from California??) I also have an appointment with the Surgeon set! June 15th! They were wonderful and got me in sooner than they had expected, and set a special appointment with me. If I hadn’t taken that… I would have had to wait another 3 weeks for this appointment. It took a bit of rearranging my work schedule (though thankfully my work is wonderful and is working with me for this). This means that I may become bionic in early July (though this all depends on his busy schedule)!!!

not with the eye… but with the ear… same difference right? I listen with my eyes anyways.

I never thought I would be this excited for it… but I am… my tinnitus is getting worse… and it will be exciting to hear something other than that (as long as it doesn’t make it worse).

All for now… need to get back to work.

Discharged! and VP Update

So my first big piece of news… I am officially Discharged from my balance therapy!!!! I am so excited to be able to say this! I started balance therapy shortly after the beginning of the year, after a very horrible experience with a VGN… which is where an evil tech pumps hot air and cold air into your ears… with the ultimate goal of making me as dizzy as possible… then these weird glasses track my eye movement to see how dizzy I am…

Since then, and finding a slight, but inconclusive weakening to my right side I started balance therapy at South Valley Physical Therapy, with a sometimes evil, pushy demanding Therapist named Kenda. I hated for for quite a while… as well as the Proprio Dynamic Balance System machine (pictured below) that made me want to scream every time I got near it.

Kenda Fuller of South Valley Physical Therapy working with a patient (not me) on the Proprio Dynamic Balance System. it twists, it turns, it makes you sick… but eventually… it makes you better

Along my balance therapy journey, I was also in a scary light room… that more than once made me feel like I was going to have a seizure (though I never did). The goal of this room, was to see if you could stay stable, while having no stable way or using your eyes for keeping your balance (something I apparently did way too much).

the light room at South Valley… very dizzy making.

but now!! I am officially done! I am so happy that I am done, but also very happy that I am better. The pain and the feelings of torture, worth it for the feeling I had today, being told I was DONE!! She explained to me the first day… but I didn’t believe her at that time. It would be slow progress… but once I hit the summet… it would just be done… there would be no warning… it would just be done. I didn’t think that would be the case… but it is… it was… I was just… done. The occasional dizzy spell, but nothing like it had been. She said that I may have to come see her once every year or so, if something creeps up… but over all… I am DONE!!!

Now for my other updates. I am suppose to have a Sorenson NTouch VP installed for free today, but it doesn’t look like the guy who is suppose to install it has gotten it yet, hoping for a UPS Delivery today. If you are interested, are Deaf or HoH and use ASL as your main language, and do not already have a Sorenson VP, you can apply online here. I already have Purple, Convo, and ZVRS… but I do not have a physical VP, only on my computer… and sometimes it doesn’t work properly, due to computer errors.

Sorenson’s NTouch VP

The one Issue I am  having, is my internet connection… I need to call Century Link to see why, even though I am paying for 7mb/s connection speed… normally I am only getting something like this…

Speedtest today… at home… not what I am paying for.

but I may be switching to Comcast… if CenturyLink refuses to fix my issues… but we will see. This is not what I am paying for… and I don’t like having to pay so much for something so little… but we will see.

At 2 I have a Voc Rehab appointment with CHSL to, once again… verify that I am deaf… so that hopefully Voc Rehab will pay for my school! I should get ready, start dinner in the crockpot, do some cleaning, then I will be able to get things done… I am getting ready to edit the fast and furious video mail I got yesterday too… but that will be its own blog post.

Vertigo and I

Its a dance… this life of dizzy then not… then dizzy again. The vertigo dance I have played for almost a year… seems it may (hopefully) be coming to an end! When this whole thing started… I had more hellish bad days than good… more days where for hours on end I was spinning out of control… where my mind could not focus… where I couldn’t think, let alone speak or lipread… I was lucky to be able to stand.

But lately… I have noticed, appart from the odd day… the odd attack, life seems to be getting back to normal… as normal as it can for me. And I must say that is something I am really looking forward to, the end of the dance.

I haven’t quite noticed a pattern, but then again… there has never really been a method to my madness when vertigo is involved… but I keep searching for one.
When I was younger, my madness really involved me passing out and sometimes breaking things, like my tooth, splitting my chin or my eyebrow (once both), breaking of the toes… that sort of thing. Then it stopped for a while, having only a few issues here or there… but mostly being ok. That was my life for 2 years, maybe 3… then the vertigo set in… and fast. One day, I was perfectly fine, then after a single steroid pill (I had an inflamed neck) the vertigo became my constant companion… until now. I am pleased to say… that I have only had one horrible feeling as though I was Dorothy in the wizard of oz, with everything spinning around me inside of a tornado…

That was Saturday… thankfully (sort of) right as work was ending. Meaning I didn’t have to deal with people and feel as if I was going to hurrel my stomach contents on my clients because I was trying to understand what someone was saying… I had a minor attack Monday night when I went grocery shopping, but I was still able to stand and function, walk and think… and to an extent lipread (though that is never really comfortable).
But this to me is a major improvement… the only two days with any vertigo symptoms in a week… a major change from where a day without my dear enemy dizzy was a blue moon. This change I will take and embrase… maybe if I embrase it… it will stick.
What has helped so much? I think it may be the frustruating but helpful balance therapy I have been doing on a weekly basis for the past few months. While it pushes me to the breaking point, it does seem to be helping… as noted in my transformation of days… hopefully *crosses fingers* this means I can be done soon!

I would love to take a weekly appointment out of the mix, expecially since I am going to be adding routine audiological visits and surgery healing time to the pot. Speaking of surgery, I got approval for my CT scan! My insurance company called me and left me a video message with a bunch of information, asking me to call them back. This message was, as I described it to a friend… “holy information batman” message. A rapid fire 59 second video message… that I am sure my google voice would not have had any hope of transcribing… but the interpreter did a wonderful job for me! I will post the message after I have a chance to edit the identifying and personal information out of it… maybe tomorrow… I should also know soon when the actual time of my ct scan is, I know it will should be next Wednesday… but I’m not sure on the actual time yet. And the lady from the CI clinic needs to check with the surgeons assistant to see when I can see him. I was asked for medical records… but except for the occasional ear infection… ok more than occasional… and the vertigo that seems to be disapearing… I am fairly healthy… doctors appointments have gone like this… go in, oh you have an ear infection… ok… here are antibiotics. Your blood pressure is wonderful, a bit overwight… but ok… see you next infection. Is that something the surgeon would really need to see? Who knows, I will have my new and my old primary care physician send over records… so they can see anyways.
That is it for my ramblings tonight… I will update on my new VP from sorenson tomorrow!