Update from the Dr visits: in short I feel like they are doing nothing to help figure out the cause of the headaches nor are they helping me to deal and manage my daily headaches. It was as if they had no insight at this visit they just seemed like YesMen. I asked for an MRI and they said sure. I asked for a possible sleep study and they said sure. I asked for continuing PT they said sure. I asked to go off of Lyrica and they said sure. I told them the reaction I had from the Botox which was a forehead full of pimples and terrible itchy scalp and their response was, it doesn’t look that bad lets still do the next round. It was nuts. It felt like such a waste of time. Plus the new neurologist came in introduced himself by shaking my hand said two words to the PA I was speaking with and walked out. It was so rude and not a way to make a good impression on a new patient. So the only thing that one Dr set up that he already had a plan for next steps is a C2 nerve block. So that will get scheduled, I will stop Lyrica, get an MRI, possibly do a sleep study, and get the next round of Botox is Sept.
I am so frustrated. Plus they are not getting their paperwork into long term Disability so I am now going in to no pay period because of paperwork ugh. So the headaches rage on day after day after day for 7 months straight now. I am starting to go a little crazy. The C2 block and the next round of Botox and I believe they can give me no more help. They acted yesterday like they had all given up on my case and I am again without a way to manage my daily pain. Sorry to vent. It’s just getting old.
The last 24 hours have been horrendous…no pain meds at all, only the magnesium. Oh and in the midst of this horrendous pain, they decided to do the MRI. MRI + Massive Pain = severe anxiety and no MRI. As I sat waiting for my turn in the MRI I began have a panic attack because I knew there was no way I could possibly make it through…my nurse finally came down and pumped me full of morphine. It was as if I could feel all of my worries and pain melting away. I made it through the MRI and brought me back to my room.
A neurologist finally came in and laid out a plan to treat the rebound headache. And so it begins. They have given me the first round of medicine, Topomax, to treat this, what should I call it, shitty headache. I’ve been told that the side effects could be interesting. For example my nurse who had also taken this medicine told me it made her stupid. She would order food at a fast food restaurant, go to pick it up and wonder who ordered it for her or she would get up to go to the bathroom and couldn’t find the bathroom in a one bedroom apt. so this should be an interesting next couple of days.
They tell me it could take 2 to 3 days for this medicine to work, if it works, and if it doesn’t work they try something else. so it looks like I will be in here for a little while yet. On a positive note and even though I feel bad, I am really happy that my mom and Bob are coming home. When I was going into the MRI and was in so much pain all I could think was ” I want my mom” and now I get my mom. Up until today Dan had been so sick he couldn’t come up to the hospital. I was so glad that he was feeling well enough to come visit today and bring me a few things from home. I am so thankful for such a supportive family and so many supportive friends I love you all and thank you for all you’ve done including all the prayers. I’ll try to update again tomorrow.
Valentines Day! What better way to spend the day than to spend it with people waiting on you hand and foot. I got a Valentine Day card this afternoon. The doctors decided to admit me after doing an MRI and running a bunch of blood tests. They decided that I have a rebound headache. Apparently when you stop all over the counter and narcotic medication all of the sudden you can be left with one of the most horrible headache ever.
“Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.”
So they stopped any and all pain medication instantly and started me on Magnesium for 24 hours. The pain was the worst pain I had ever experienced. The photophobia was horrendous as well as the phonophobia.
“Photophobia is a symptom of abnormal intolerance to visual perception of light. As a medical symptom, photophobia is not a morbid fear or phobia, but an experience of discomfort or pain to the eyes due to light exposure or by presence of actual physical sensitivity of the eyes, though the term is sometimes additionally applied to abnormal or irrational fear of light such as heliophobia.”
“Phonophobia is an anxiety disorder, not a hearing disorder. Phonophobia is a fear of loud sounds. Phonophobia is also called ligyrophobia. The name “Phonophobia” originates from the Greek words for sound and fear.”
Today I learned many new terms and discovered that head pain could really be that bad.
But today I also felt like a new woman for about five minutes and it was fabulous. A huge shout out to my friend Dawn Tomlin for bringing me toiletries so I could shower and brush my teeth and balloons too. It looks like I’m going to be here for a at least a couple of days as they try to both determine the source of the headaches and to control them. Thank you for all of the prayers and please keep them coming. Tonight’s probably going to be a rough night as the first step in trying to find a new medicine to control the headache means eliminating the pain reducing medicines.
Clean Hair!!! It is a wonderful thing.
The great feeling of the shower only lasted for about 15 minutes, but it sure did feel good to be clean.