The next morning when I woke up, the pain was as unbearable as before - no relief whatsoever. Everyone kept trying to pressure me to go to another doctor, but since I had no insurance and flat broke, I knew no other doctor would see me if I couldn't pay. So I suffered. As a couple of more months rolled by, a few more symptoms began cropping up. I didn't have any idea all of this was connected so I just kept pushing forward and suffering in silence (sometimes not so silent).
Mid-June arrives and suddenly the headache eased considerably enough that it was just a "nagging feeling". I was more relieved to finally have that indescribable pain gone than words could ever express, even though some of the other symptoms had stayed with me. On the first Saturday in July we moved, so being mostly pain free for that month was a blessing in more than one way. It allowed me to pack and do everything I needed to do. On August 7th, I had to go grocery shopping. I was still feeling pretty great! As I was putting up groceries, I accidentally bumped my head on the freezer door. My head began hurting - but not that bad - nothing compared to what it had been a few months before. I went about my day in the normal fashion, trying to fit everything I possibly could in those few hours. That next morning, the migraine had returned - full force.
By this time, the other symptoms had progressed even further and I was beginning to get really concerned something was drastically wrong. A few weeks went by and I finally got up the nerve to talk to my mom about everything I'd been dealing with. She'd only known about the headaches - nothing else. She tried to talk me into going back to the health department and I told her I just couldn't do it. They wouldn't help me.
I'll break in here and tell you two of the symptoms that were progressing rapidly -- my vision was one (but I was just starting to account that to my growing older). The second was severe tingling/numbness in my arms & hands. About the middle of October, the headache had gotten so much worse that I was wearing sunglasses anywhere & everywhere, just so the simplest light wouldn't make it even more dreadful. Mid-afternoon, I was laying on the couch with a wet cloth on my eyes trying to hold the nausea and dizziness at bay. Suddenly, my left hand and arm went completely limp. I couldn't feel it. I couldn't move it. I had been dealing with this for a few months but these episodes would only last anywhere from a few seconds to no more than 5 minutes. I looked at the clock and waited for 5 minutes to pass. Five minutes passed -- then 20. Thirty minutes rolled around and I started bawling, thinking that something terrible had happened and that paralyzed feeling was going to be permanent. My mom was sitting there reading and she looked up, asking me what was wrong. Through the sobs, I finally managed to get across to her what was going on. She came closer and started moving my hand and arm in every which direction - trying to see if she could "help" bring the feeling back. Nothing worked. Suddenly after about an hour had passed, the feeling slowly returned and I was able to move my hand & arm like nothing had even been wrong in the first place. I knew, then, that I definitely needed to seek medical help, one way or another.
My appointment at the health department was that Thursday morning. The doctor did several "tests" - if you want to call them that. She checked my eyes, reflexes, balance and a few more - hand to eye coordination type things. After she finished, she told me I could sit back down and without any warning, she spouted off, "I'm 95% sure you have a brain tumor." I know I went slack jawed and began crying. She said, "I'm not saying this to scare you but if it's not on your brain, it's on your spine. I'm only telling you so you'll know how serious it is for you to go to a more qualified place for tests." So I asked her if there was any way she could set me up an appointment for an MRI or something like that at the local hospital. She said, "No. Since you don't have insurance, they won't perform an MRI on you without you paying up front first and that's several thousand dollars worth." Then she suggested that I go to a "big-city" hospital to the ER and they'd run every test on me till they could conclude what was wrong. When I told my best friend, Bridget, what the doctor had said, she took off work the next day and drove me and my mom to St. Thomas Hospital in Nashville. They scheduled an MRI and put an IV needle in my arm while I was waiting to be taken back. After the MRI was finished, a nurse put about 3 different medicines in to the IV needle. He said one was for pain, one was for nausea and I can't remember what he said the 3rd one was for. I don't remember much after that - you guessed it - it was the same medicines as they'd given me a few months before in shot form at the other ER. Next thing I know, we're close to being home and Bridget filled me in on what the ER doctor had said. The MRI had showed that my sinus cavities were completely blocked but there was no sign of a tumor. However, he had spoken to a neurologist and said he wanted to see me before any other test were run on me. I had to wait till Monday to make an appointment since it was nearly 6 pm when we got home that evening. Then, I had to wait a couple of weeks before I could even see him.
The day of my appointment, I'm scared to death of what he's going to tell me. WHY would a neurologist want to see me if it's just my sinuses? A million questions were going through my head. He checked my eyes and some of the same things the health department doctor had checked. He, then, told me that he had a feeling he knew what it was but he was going to do a couple of more tests just to make sure. He scheduled me for an EEG and an LP a.k.a. spinal tap. The EEG was to test to see if I had a damaged nerve somewhere that was causing the paralysis episodes. He discovered I had a bad nerve in my neck but he went through with the LP. A few minutes after he inserted the needle into my spine, all I heard was, "oh my goodness! I was right! You have Pseudo-tumor Cerebri." Of course, my mind was boggled so I had no idea what those words were. After he finished the spinal, my friend and mom came back to the room so he could talk to us all. He told us that I have Pseudo-tumor Cerebri or IH (Intracranial Hypertension). He told us that normal pressure level was 10-15 & my opening pressure was 41. He explained that IH is where the Cerebral Spinal Fluid doesn't drain properly and builds up to add pressure on your brain. The reason that the health department doctor thought it was a brain tumor is because IH has all the symptoms of a brain tumor without an actual tumor being present. He also told me that since my opening pressure was so high and my optic nerves were already quite damaged I have a higher chance than some patients for losing my vision altogether. He prescribed me a few different medicines and I was to go back in a couple of weeks for another spinal to see if the medicine was working. The second spinal, my pressure had already increased to 27. So, he upped my dosage and scheduled me for another just two weeks later. Two weeks later, my pressure was 25. He told me that he was going to try the spinal a few more times - try a few different combos of medicine and if nothing seemed to be working he was going to send me to a neurosurgeon to begin talking about a shunt that would help drain the excess fluid.
I went back January 21 (for what I thought was going to be another spinal) but turned out he just wanted to talk to me. I suppose the fact that I don't have insurance (even though he had said at my first appointment that didn't matter & he just wanted to help me get some relief) has finally kicked in. He told me he couldn't help me anymore and he wasn't going to give me another spinal. However, he did tell me to come back in about a month to see how I was doing. Well - I cancelled that appointment. Why? I didn't see the point in driving two hours there (& 2 hours back!) just to "see" him when he had already told me he wasn't going to help me anymore. Plus, he didn't have a nice thing to say to me at all that last day (& he was always insulting me & degrading me each time he was doing the spinal tap anyway) and I wound up feeling worse emotionally & physically than when I went in. So, I feel like I should get the same personal treatment as the next patient would, regardless of my financial status, gender, race, looks -- whatever the case may be.
Currently, I'm trying to get insurance - I have been for a few months but it's a long and slow process. I'm hopeful that if I get the insurance I'll have more options of doctors I can go to and hopefully to one that is much closer to home.
Some people seem to go on to live normal lives after they get their symptoms under control...and there are others who never seem to get anything to work for them. I don't know which group I'm in yet, but I do know some days are better than others - those are rare but I know I'm blessed to have one here & there.
My vision has gotten increasingly worse - there are days that all I can see is a big blurry blob....there are some days when I have complete blackness....and there are a few where I can see clearly (even if it is mostly just tunnel vision - imagine looking down the tubing of an empty ink pen...that small speck is all you can see - no peripheral vision whatsoever - that's what I see every day, when I can see.) Every day I have anywhere from 10-15 dizzy spells. Some days I can't move my head an inch without vomiting or feeling like I'm going to pass out. The tingling/numbness/paralysis has gotten worse -- they can last hours now at a time..and it's not just my hands & arms now - it's grown to my feet & legs. Several times a week, I get so sick I can't move a muscle to even wet my face to keep me from passing out. Luckily though, my dog Snickers is very protective. When he senses it's about to happen, he goes to get my mom - even if she's asleep, he'll still wake her up. She'll come bearing a cold, wet cloth to wash my face over & over till I regain some color and the tremors aren't nearly as violent. Those nights are when she sleeps on the couch so she'll be closer if I need her again. She's a Godsend! I don't know what I'd do without her or Snickers. They both take very good care of me! There are other things I face on a daily basis but I think I've shared more than enough for today.
Today, February 28th, is Rare Disease Day so please wear Blue & Green to help raise awareness for this debilitating disease called IH. Hopefully soon, there'll be a cure found and we can get back to our lives.
There are so many illnesses out there that are invisible. You never know what someone is dealing with.... I found this picture online & speaking from experience, these sentences hurt more than any healthy person could ever understand. So please read them, understand them and take them to heart for the next time you meet someone who does have something wrong with them. Even if you can't "See" their disease, that doesn't mean it doesn't exist.
To all of my family & friends who have stuck by me through this entire ordeal - I thank you and I love you. There are times I do feel all alone but knowing I have you all in my corner supporting me, loving me and praying for me means more than words can say. So again, I thank you!!
And to anyone out there who doesn't know what IH is, please go HERE to find out more or to donate to the cause for research of finding a cure.