Where Have I Been All This Time ? …….Pleading For The Pain To Stop xx

So I guess you are wondering what happened next? After two days of Intravenous Immunoglobulin , 20 hours in total , it should have helped not hindered right? well  no, not this time 😦

Throughout the infusions I was having server headaches and low blood pressure, particularly the fist day, but I hoped this would subside after the IVIg had been completed for that time.  However, by the following day , 14/5/14, the day after my two day course of Intravenous Immunoglobuilin……..I had a rare adverse reaction, which left me in a state of crisis. I have never suffered such serious consequences from this treatment before, as I have received IVIg on four other occasions, also same brand,  without any server problems, but they were administered at 36ml extremely slowly. As I explained previously, this infusion was administered at an increase to 80ml on day one and 60ml on day two, not sure if this could have had an influence over the outcome.

My husband phoned the Heath and explained my symptoms, but they did not have a bed available , therefore my option was  to wait at their A&E. This was absolutely physically impossible, not only due to my Stiff Person Syndrome symptoms, but also due to the server adverse reaction I had developed. Tears were streaming due to the immense pressure in my head, my eyes feeling like they were bulging at the socket, not even able to open my eyes as any type of light was unbearable, triggering further head and eye pain. Even my face hurt so bad it was untouchable and my neck was completely stiff and in so much pain. The nausea and vomiting was horrendous, I can honestly say that I cried like a small child , begging and pleading for the pain to stop. What was happening to me at this time was alerting stronger, more powerful spasms/seizures. Once I had medical investigations and treatment, everything that I am describing started to make sense.

By this point, my husband was extremely anxious to get me medical care in a hospital urgently.Jason spoke to a GP at  our local surgery , and thank goodness she was able to admit me  to our local hospital ,Nevillhall . I have to say, the team here were outstanding. From the moment Jason rushed me in, I was placed on a bed and assessed straight away. Things are a little hazy, but I remember having a medical examination, blood work taken, and a cannula put in place with potent intravenous antibiotics being administered in moments of my arrival.  Jason stayed with me all night, holding my hand and not letting go. My seizures were uncontrollable, Jason and the hospital team had to work at great speed to keep me safe. I was given intravenous Lorazepam, which helped alleviate the duration and excruciating pain of my all over body spasms,  the sensation of ripping at my muscles, crushing my bones.

I was moved to a side room due to my admission symptoms, violent spasms and Stiff Person Syndrome characteristics of my bodies sensitivity to any extra stimuli. The hospital team blacked out my room for me, curtains taped together, not allowing an inch of daylight in, and the door constantly closed to try and block any additional sound or light that could trigger another seizure. I stayed in this blacked out room for a week, although time really had no meaning then. I didn’t know one day from the next. However, I was at ease as the expert care and consideration given by the medical team was second to none. They were extremely compassionate, caring and tried their utmost to understand my Stiff Person Syndrome characteristics…….as being one in a million, not many medical professionals have come across someone like me before.

I was continued to be given intravenous  Ceftriatone antibiotic infusion twice in 24 hours and intravenous Aciclovir infusion three times in 24 hours, and additionally intravenous Lorazepam during my extreme seizures, resorting me to tears.

On the 16/5/14 , I was taken for a CT scan of my brain  ( of course Jason was still with me, guarding me like some precious jewel ) , to check I had no visible bleeding, so it was safe for the team to continue with a Lumber Puncher, so they could assess my CFS.  The Lumber Puncture was conducted (me holding the photo frame with mine and Jason’s three precious tots, I studied their  beautiful eyes as the procedure was being done, through squinted tearing eyes, but I knew their little hearts would get me though) with much care and attention, however the first attempt was a failure, the second went smoothly and provided my Consultant with the information she required to give a confirmed diagnosis. The results of the Lumber Puncher gave her conclusive evidence that she was treating me for what she had suspected all along.  The Lab results revealed that I had Encephalitis (swelling of the brain) and Meningitis (high levels of white blood cells surrounding my brain and spinal column) . The bacterial form of Meningitis fitted the jigsaw puzzle together sufficiently, as my body was responding well to the Aciclovir intravenous antibiotics. All my symptoms, including the severity of my seizures were all classic symptoms of my Consultant’s diagnosis. I am so thankful beyond words that she , and her team acted so quickly. Other wise, I may not be led her, typing this to you now.

I remember waking at 4am on the 19/4/14. my skin hot to the touch, yet I could not stop shivering. the pain was so like a living nightmare. My legs, spine, neck , head ,face was in so much pain, almost like an electric shock pain, radiating into my muscles. The wonder staff helped me with personal care as I stared losing blood from my vagina, non period related. My body became a ragdoll like fixture. I was given all pain medications possible and connected to the antibiotic infusion, as I was retching in a sick bowl, tears unable to stop. I was begging in my mind…..please no more , and then I blacked out. Apparently , I had fainted as my temperature was not running accordingly. Thankfully, my secret wishes kept me safe, as upon waking, I was feeling a little stronger and the Encephalitis and Meningitis symptoms were far more under control, and so were my seizures.

I was discharged in the evening of the 20/5/14, as my Neurologist had requested to see me in his clinic on the 21/5/14 in the afternoon to discuss what had happened to me. However, I am still recovering and continuing to take Aciclovir antibiotics orally. I tried so hard to make the appointment , as it is imperative, that I know the next step to my treatment plan. However, my Neurologist did make a personal call to Jason that evening, as Jason had left a message with his PA asking if I please could have the consultation over the phone as I was still to ill to travel to another  hospital.  This didn’t appear a problem at all. so I was told by my Neurologists PA that he would be calling me back in 30-45 minutes, that was a 1:30pm. Jason received a call just gone 8:30pm, when he was attending the weekly fundraising meeting with my ‘One In A Million, Snowflake Of Hope’ Team , concerning avenues for my Stem Cell Transplant procedure. I was continuing to fall in and out of sleep and had no idea that my Neurologist had called Jason’s mobile, until he returned home. So, still as of yet  I haven’t been able to discuss the next step. It was already arranged, as part of my treatment plan , that I would return to the Day Unit at the Heath on the 2nd and 3rd of June , for further IVIg…….will the treatment plan remain the same after my body was so ill from my previous  Intravenous Immunoglobulin???

I am going to include some photos in my next entry, so you can follow my fight against, not only the ghost of Stiff Person Syndrome, but also Meningitis and Encephalitis. Thank you from the depth of my heart, to each and every beautiful caring soul, who stood by my side and inspired me to fight one of the hardest fights in my life so far…….Ilove you xxx




2 thoughts on “Where Have I Been All This Time ? …….Pleading For The Pain To Stop xx

  1. I can’t begin to understand the unbearable pain that you live with daily but only hope you can get the much needed treatment to take all of your pain away and that you get to cuddle and laugh with your “tots” soon! Stay strong x x


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