So it's been a while since I last posted.... I don't bring with me any significantly good news or bad news.....which is.... maybe neutral news. I'd hoped that by now I'd have some kind of answer as to why this happened to me.
I have spoken to another "survivor" of this horrible disorder. He had EVERY single symptom as myself and the others, but also had some stomach issues. He tested negative for celiac's disease, but once he had his endoscopic exam of his intestines it was found that his Cilia was flat. He did his own research and found that this was a sure fire sign that he had a gluten intolerance. He went on a gluten free diet and all of his stomach issues, (which I don't have), went away and the visual symptoms cleared after 6 months or so. I am proud to say I have been on the gluten free diet for a month or so now and have had good results with my headache. It has gone down a few degrees in severity. I used to get migraines a few days a week, it's now been a couple of weeks, if not a few since my last migraine. I am not trying a sugar free diet, but cheated today, so I need to get back on that wagon tomorrow.
Also, I have gotten at least 1 diagnosis that fits and has had some results, but it appears that I have more than 1 disorder going on at the moment. After getting a myleogram, which by the way was one of the most painful tests I've EVER had done, I was only told what I've already known. Cervical herniation, cervical bone spur, 2 hemangioma's, (1 in the thoracic and 1 in the lumbar inside the vertebrae), severe herniation compressing the nerve roots in my lower lumbar and severe spinal stenosis. Can any of this cause vision problems.... "No" says the neurosurgeon. I left yet another doctors office crying once again. At that point I had no hope for anything. I was destined to have the daily headaches and vision problems for the rest of my life only waiting for them to get worse.
I decided to go see a neuro-opthalmologist by the name of Dr. Marc Levy. I went through a gamot of testing, some of which I've had done before, and others that were invasive, such as a piece of paper put in between my eye ball and eye lid to test how dry my eyes were. Anyways, so I was in the middle of telling him my 28 year history and my novel amount of symptoms when he interupted me. "I think I know what you have!" "Excuse me?" I said. My mind just kind of blank and open to try to understand what the Dr. just said to me. I have been to 4 Neurologists, 3 Opthalmologists, 1 neurosurgeon and a partridge in a pear tree and NO ONE has even speculated as to what was going on with me. He began to go back to my head injury that occurred when I was about 4. I have a touch sensitivity on my scalp since the injury. I've also had headaches that would come and go for months at a time and some occasional light sensitivity, usually in grocery stores or malls with fluorescent lighting. Sometimes I would get it pretty bad at night even when I wasn't around lights or oncoming vehicle headlights. He then explained that it sounds like Occipital neuralgia and that a simple injection of an anesthetic/lidocaine with some steroids in it would immediately give us an answer. He excused himself to get the medicine and a nurse came in with a waiver to sign. I signed my life away..... I was willing to do anything for even an iota of relief. As soon as she left and shut the door I bowed my head and prayed. This was my only hope for relied. I imagined getting my life back and doing the things that normal people do. Having fun with son while he is still young and being a better wife to my husband. The Dr. entered the room with a needle. He had me flip my hair over my head and lean forward. He swabbed some alcohol over the area and pressed around looking for sensitive areas. He injected it, VERY PAINFUL, into various parts of my occipital area of my head. He told me to rub the horns they made as he excused himself once more saying it could take a few minutes. I immediately noticed the whole back of my head was numb to the touch. Now me being the anxious person I am, this freaked me out. I did not like the fact that I could not feel the back of my head and had no idea when I would again. I literally had to talk myself out of this panic that was coming on. The Dr. came back in the room a few minutes later and asked me how I felt. I looked around the room and still noticed all of the after images and the flashing visual static/snow. I said.... I still see the visuals. He said that could actually take a week or so or more to go away as it's been there for a while. He also said it sounded like I may have 2 separate things going on. He asked me to stand and lean my head from side to side. He asked if it hurt. It actually did not. The headache in the back of my head and neck was now gone. I could even stand without feeling like my head was going to explode. This was a great start. I left feeling hopeful as he said it would get better and better as the days went on. As soon as I got to work I noticed I could still feel some head pain in my temples and in the front of my head. I guess I was noticing this pain since the other pain was gone. A few hours later the lidocaine started wearing off and my raging headache came back full force. I do not know why it was so bad, but my guess was it was actually the same level it usually is, but I went 3 hours without it that I forgot how bad it usually is. The next couple of days were horrible as on the right back side of my head where 1 of the injections were was very sore. It hurt for the shower to even hit it or to lay on it. I called the Dr. a week later to let them know. They were surprised that the injection hadn't worked and advised me to come in again for another set of injections. The 2nd time around the Dr. asked if it had helped at all and I told him about the few hours of relief. He said that was good and it sounded like I needed a stronger lidocaine and a stronger steroid. This lidocaine injection would last 8 hours or so. He was looking for tender spots and went right back in to the already sore spot. This time my right ear was left numb.... boy is that a strange sensation. I told him about the vision being the same and he again said it could take time. Since then I have also started a yeast detox with a product called ThreeLac and boy did it make me feel horrible. Stomach flu symptoms and it made my vision worse. I have had horrible light sensitivity on top of everything. I can tell you that the back of my head does not hurt much anymore. My neck still does and the front of my head and temple still hurt as well as the top of my head. At this point... I don't think it was much of a success, but it helped curve the pain a bit. I have had an increase in anxiety and know that this is something that will make my visual symptoms worse. I am scared to take my antidepressant anymore, It's been almost 2 years since I last gave it a real shot, and that scares me even more that by not taking them I could be doing more damage. I wish I knew why I have this problem and where it came from. I have such a history with many factors playing a role. It could of been the head injury, adolescent drug experimenting, Prozac/Antidepressant use for years, either coming off of going on, the car accident, stress, or my thyroid disorder. I am at a point where I feel like my life is over, yet still going on. I am a shell of a person with a family to tend to while I am on autopilot. I pray every night and any chance I get of peace it's speaking to God. I have lost a lot of hope in my religion and have started questioning my faith and I DO NOT want to stay in that spot. I have lost touch with myself and my feelings. The only emotion I know anymore is mad or sad. I can cry at the drop if a dime with anything emotional. I wish there was a Dr. who had the answer or who wanted to investigate me personally as I know we are all different.
I received a call from a fellow friend/sufferer who brought me good news about a world renowned neurologist named Peter Goasby. He is one of only a few Dr's who has successfully treated this disorder. As we know there are a number of different causes and as he says, you find something wrong with you and treats it. She said, as he's said before, he is going to start the studies soon on finding an answer to this disorder. He wants to find the mechanism in the brain where this is happening in hopes that he can find an answer. They just hired on a German Dr. who will be on the study for 2 years researching all he can on the disorder, case histories, etc. This is HUGE news for us. There IS someone out there interested in helping us!! What a great man he is to do this! No one else has cared... we have all been just yet another person with an unknown source of symptoms. This man has accepted that this can be caused from an array of problems within the body, but he wants to find the part of the brain being affected to fix it. Maybe he can then find a medicine to help with the symptoms. Just as one would take pain medicine for a headache. I know this could just be covering symptoms, but think of all of the people who would be helped with this. If the numb feeling was all I had to deal with, I could manage that, but having that and all these scary visuals... I feel too distracted and crazy to participate in much of anything.
I have also been corresponding with a guy who also suffers and he mentioned that the Dr. recommended taking CoQ10 and that some people have gotten good results. He has spoken with a girl who all visuals but the static cleared in 3 months time on the CoQ10. I did my own research and saw where Grave's disease patients have the lowest CoQ10 levels in any autoimmune disorder. I have been on my CoQ10 for almost a month now. No decrease in anything at this moment, but I am staying faithful to it.
My new endocrinologist lowered my medicine and I feel as though I am going hyper again. I wake up with my pulse pounding and have so much anxiety. Some days I feel like I can't catch my breath and all I am doing is sitting down. I just took my 2nd blood test and should have the results soon. I am hoping they tell me to increase the meds. They are pushing towards me getting the surgery to remove it.... and well I am playing with that idea as well. I know it's been too long to be dealing with this and it may help with the disconnected feeling a bit as it's common in some graves sufferers.
I really wish I still had my mom hear to talk to. Some days it feels as if my mom has always been gone..... and other days it's as if she died yesterday. It's been over 2 years now and I don't think I will ever get over her sudden death. I want to pick up the phone and call her and tell her how much I love her and how she never let me down, no matter what we'd gone through, she is still my mom and I am still her girl. Our last conversation will forever echo in my mind and the pain forever scarred on my racing heart. I love you mama!
So that's the update. I really don't think I have any followers, but if I do, thanks for reading!!!
