Part 1 of my family doctors plan is being carried out right now. Back to the Emergency Room we go. I believe that the Topomax had begun to wear off again and the headache was back and in full force. And since the Dr. recommended that I go to the ER if the headache returns in the same severity, it was off the to ER I went.
All set for the trip in. Bright sun not good for rebound headache at any level.
All checked in to the ER. Going to get another CT, more blood work, an pelvic ultrasound because why not. My period started when I left the hospital on February 19th and hadn’t stopped. So I suppose it’s just a precaution. This was the worst test ever and I am already in so much head pain…did they really need to throw that fun test in.
“Pelvic ultrasound is used by doctors to examine female reproductive organs. This includes the uterus, fallopian tubes, ovaries, cervix, and vagina.”
I have quite the collection of hospital bands, I should make a collage:) (Oh that collection just keeps growing and growing).
By the end of today I have been admitted for the 2nd time in a month. This time I brought a change of underwear, my rice bag (which has already been heated up for me once PTL), ear plugs and my pillow. (I actually keep a bag packed at all times now, just in case, even a year later). I am one room over from my last stay and have already been seen by the same PA and the same night nurse should be here soon. Great staff here on the 8th floor at Sparrow.
I went to my family Dr today. It was supposed to be the apt that would clear me to go back to work and I would be all better. No such luck.
The new game plan is two fold. Part 1 is if I experience anymore of the unbearable pain I go straight to the Sparrow ER. The other part of the new plan is that he is referring me back to the neurology team that treated me in the hospital. My leave from work is extended for 6 weeks as far as my dr is concerned. It still has to be approved but hopefully it will be.
My current medication, Topomax (Topiramate), has so many side effects it’s crazy, so my family dr said I could start stepping it down if I wanted too. On the flip side I finally got a couple of days of minimal relief. So it is a toss up!! so I pray specifically about this. The meds are only just helping and only a little, but the relief is welcomed. I did figure out that when I got my first dose of 25mg Topomax at the hospital (Wednesday), I woke up the next day and the photo sensitivity was a bit better and the headache wasn’t so severe. Thursday the doctor upped the Topomax to 50mg and I felt a little bit better. Friday they added Elavil because my anxiety was really bad and sent me home on 50mg Topomax. By Saturday the tension part of the headache was gone but the pain over my right eye was still there, just a little bit better. This continued for Monday/Tuesday. But by Wednesday the headache returned in full force and continued to increase in intensity through Thursday and Friday (when the cognitive disabilities began). The intense pain continued through the weekend into Monday. On Monday March 2nd I increased Topomax to 75mg and during the next 3 days the headache pain level had decreased to manageable. I believe there is a trend with the Topomax but with every increase in dose, the side effects begin to increase as well.
Side Effects of Topomax: At times I don’t remember where I am or how to turn something off I have turned off 50 times (all brief but scary). My mind gets so jumbled I can’t answer simple questions. I have great difficulty starting a conversation. I switch words around. I can’t do simple math problems. In other words cognitively, Topomax isn’t so good for me. So weird that medication can do such strange things to the brain.
How could an allergic reaction to an allergy shot have landed me here? That’s all we want to know!! And when is someone going to help stop this damn headache.
When they first gave me a diagnosis of the Rebound headache, they told me it was extremely difficult to treat and that it was going to be an extremely difficult road. I was already in the middle of what I thought was the difficult road when I asked how long this would last. Their best guess was two weeks or so. I clung on to the former, the two weeks. In fact I almost counted down, as if at the 2 week mark I would magically be better. Unfortunately I fell into the “or so” category and the difficult road had not even really begun, well it had, but it was far from over and I believe it is still far from over.
The more I learn about the Rebound headache the more I am amazed about it. I am amazed that I fell victim to it…I was far from an abuser of medicine, I was simply taking medication according to doctors it’s just that I had seen so many doctors over the course of 2 weeks time that I was on so many different medications and had received so many through shots that when I decided on my own to stop them all cold turkey so that I could go to work with a clear head there were major consequences. And those consequences I am now dealing with every day.
I am on day 16 of this Rebound headache. I have never really known anything so persistent in all my life. It never leaves…it might lessen, but it has never gone away in those 16 days. And then come the times when it is so bad that I don’t know what I am going to do, how in the world I will ever be able to push through the pain. Night times seem to be the worst this week. And then came yesterday, the pain was this bad all day. Every time I tried to overcome it I would get so nauseous that I would have to take something or risk finding out what it might feel like to throw up with this headache. I chose Zofran!! After having experienced a full blown migraine that lasted 9 days and a spinal headache that resulted in a spinal blood patch, over the course of my Saga, the pain that I have experienced during this 16 and counting day Rebound headache can really only be compared to….I got nothing! Nothing to date in my life had really compared. Most likely due to the longevity but also the utter intensity of the pain at its worst.
So today I was exhausted from pushing or rather relaxing through the pain alI day yesterday. I have learned to accomplish this in a very dark room, laying flat in bed, with a heated rice bag over my eyes and head. On days like yesterday, when the bag starts to cool, I get it reheated (by Dan or Josiah) and start over and when that no longer gave relief, I finally took a shower and then finally sleep. The day after one of these days is spent mostly sleeping most likely from exhaustion (Later I would figure out that this is what a migraine hangover or postdrome is like after everyone). So today I have slept most of the day, but the headache has lessened enough to provide a real update.
So with all that said, this is not over and I am very much still in the middle of this awful Rebound Headache. No idea what tomorrow will bring, just the nature of this thing and we have no idea what the “or so” really means. So I continue to pray and I know many of you out there are praying for me and I thank you for that . Other than that, things are pretty quiet around the house and the boys are figuring out their routines without me or with me only to help here and there to minimally prod them along in the right direction.
Bloody hell. It is as I had feared: Rebound headache take 2. And I am at one of the peaks tonight. Oh boy could this get more fun!!! I thought I had long cleared this hurdle. I had no idea I would ever have to clear it again. Not sure if it is really a second one or still the first but a second round of not fun. It seems every time I am on the verge of feeling better something else or the same thing knocks me back down. Trying really hard to keep spirits up because I know it could be so much worse but a continuous pain in the head for 2 weeks wears on yah. I had a few points today that were bearable, so it isn’t 100% excruciating all the time. It’s just always there and sometimes it’s just really bad. But I’m not really functioning. I’ve been in bed or on the couch for 2 weeks now. I’m on leave for sure until the March 5th.
It has been almost 2 weeks since I went into the hospital. I was there for 6 days and never had any desire to leave my room. I have now been home for a week and have only left one time for a dr apt on Mon. Other than that I really have had little desire to leave the house. I know we live out in the middle of nowhere but I am up for visitors, even though I don’t want to leave I will always be social and I am off work for sure through March 5th.
I think when I want to start going places, maybe this will be the indicator that I am on the mend. So weird to not be experiencing cabin fever at all. In fact I don’t even want to leave my room much. I know I will and I
look forward to those days ahead.
Apparently my light sensitivity was much greater than I realized. I just hung blankets over the windows in my bedroom and wow (little did I know they would remain on the windows for almost a year until I replaced them with room darkening shades), what a difference. Looks like I will be hunkering down in here for the foreseeable future because we do not have a blanket big enough to cover the bay window in our living room. But wow, do my eyes feel so much better. Good thing my bed is comfy.
Just an update on the very weird blue fanged cat vampire bat fang bites only acquired at the hospital. Healing up just fine. Still look weird but the itch so I know they are healing. Thanks to those of you who gave advice. I don’t think we’ll ever really know what happened. It’s the size of a pencil eraser maybe a little bigger. I just did a little looking on CDC and there is no swelling or tenderness. The black looks weird but is really due to the dye in my shirt likely. And when it scabbed it turned black. I will definitely keep an eye on it and I will be back to the dr in a week. I meant to show him on Mon but forgot. To much to talk about with the head.
I kept waiting to do an update because things were plugging along with little to no change with a headache that was always there but I was learning ways to cope with it by taking showers and lots of naps. The medicine was making me extremely tired and I was napping a lot. I am also adjusting to being home; the sounds, the lights, the smells even. I am still preferring a dark quiet room though which is to be expected with a headache of any kind. I am starting to gain back some energy as well. The Dr told me that it would take 3 days for every day I was bed ridden to recover. Ugh! 3 weeks to regain the strength I lost during my hospital stay.
Yesterday I went for a follow up apt with my family dr and we have a game plan. I am so grateful that my dr understands Topomax both on a personal and professional level. I feel so much better knowing that I am in good care. So that is good. However, after every Dr visit over the past 6 weeks something always and I mean always got worse. And this visit was no exception, nothing major. But my headache got worse within hours of going to the Dr, nothing drastic but the headache kicked it up a few notches which is a big bummer but not entirely unexpected really. It could also be the weather adding to things. The Drs said the worst of this rebound headache would be for the first couple of weeks and then only time will tell. But it sure is making me start to wonder whether or not I should just stop going to the Dr altogether:).
At any rate dark, quiet places are my friend and are truly lovely.
On a positive note: Gideon got excepted into the Great Start Readiness Program for next year. How exciting!!! My little boy is
going to preschool!!!
I’m going home!!! Luckily my mom and Bob are there to take help take care of me and my boys.
Utterly exhausted. It turns out that only walking back and forth to the bathroom for 6 days leaves you quite weak. I made 2 trips to the bedroom and 1 to the kitchen and I am short of breath feel like I need a nap. Only I just woke up from a 3 hour nap an hour ago. Guess I am going to have to ease into home life a little slower. They told me that for every hour of bed rest it would take two hours to recover. Head is feeling ok still but I can tell meds are wearing off and I can’t take another until tomorrow night. I’m good with that because it is the means by which I will prevent another rebound headache. Everything is so bright at home though so until the sun sets I will be sporting lovely sunglasses:). It’s pretty fashionable anyway. No change on the unexplained blue fang marks so that’s good. Overall glad to be home and it is soooo great to see the kids and snuggle with my Gideon.
Thank you to those of you who have provided meals to our family this week. What a blessing our church family and our friends and family have been. By the way who made the taco lasagna. It is awesome!!
I got my IV out!! Yay!!!! Ok so I am thankful for little things. It was in my right arm so it made everything a little more difficult. I am feeling quite a bit better today but the headache remains ever stubborn. The new meds have given me slight reprieve and for that I am truly thankful. But the best medicine of all was the paczki from Roma Bakery. I was just as surprised as you that my Dr would order such a thing but thankfully my friend Stephanie Jordan got the memo. Hoping to continue on this road to recovery.
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.