Shirina
02-23-2009, 02:51 PM
The first week in October 2008 is when it all began. My left nostril was running constantly. Thinking I’d caught a cold I took some cold & flu over the counter
medication. This didn’t work. Nose became blocked, again only on the left side so it was off to the doctor for some relief. Throughout both October and November I visited the Doctor several times asking for medication to help me get rid of whatever it was that I had.
Tried antibiotics and various nasal sprays which did not work, my doctor assumed my symptoms were typical of hay fever given that we were heading into spring.
Then the headaches began, violent is probably the best word to describe them. The pain was so intense, I had never in my entire life felt such pain before, I was in tears and couldn’t sleep, and I couldn’t stand light or watching TV, not even daylight. On the days I was sick at home I’d walk around with an eye mask…I actually thought I was going insane.
Again, I visited the doctor and he mentioned that I probably had cluster headaches which were common in men but not in women. Painkillers – (codeine) were prescribed. He also suggested I go to the hospital for a CT scan just to be sure it wasn’t anything serious, which I did and the scan was normal. Around the same time I lost both my taste and sense of smell.
December 2008
First hospital admittance due to headaches
Emergency doctor consulted ENT Specialists who suggested they try oxygen treatment for Cluster Headaches. 20 minutes was the recommended time however the doctor left my husband & I in the room and 20 minutes turned into 40 minutes. This didn’t work as the pain got worse, much worse, I thought my head was going to explode. I was given some paracetamol but to to no avail. Stronger pain relief was required and I was given two doses of morphine both of which did not work. In the end I was given a cocktail of painkillers & inflammatory pills, Tramadol, Voltaren, Paracetamol, I guess at that stage they were willing to try anything. My left eyelid had also become swollen (this I later found out was due to the lacrimal gland swelling up – another symptom) I spent 3 days in hospital, was given antibiotics with a diagnosis called Sinusitis. A further 4 days later, I was back in hospital again...fatigued, more painful headaches the works…I was back on the prednisone & another antibiotic. I saw an ENT specialist who confirmed the diagnosis was severe sinusitis. He was keen to perform surgery but this would have to wait until January as there were no available days and Christmas was coming up. Spent 12 days in hospital on my second visit and was released 22 December with prednisone & other antibiotics.
January 2009
3 weeks into the New Year and Red spots/rashes appeared on my legs (below the knee only), I’d used an epilator (hair remover) and assumed it was because of this. Then both ankles swelled up which became very painful making walking difficult. The same week the swelling appeared I had an appointment with the ophthalmologist. He look one look at me and mentioned Wegener’s. My husband & I looked at each other, didn’t know what to say, we’d never heard of it before. I can’t even remember asking about it but I’m sure he told us what was involved. Before leaving his office that day he spoke with ENT & our Consulting Doctor who managed my case in hospital and it was agreed that I would go back onto the prednisone to try and settle the inflammation around my ankles. During this week I was also experiencing nausea, stomach pain, loss of appetite and tiredness.
Then on Friday 16 January, after another sleepless night I began coughing up blood and lots of it. Bent over in pain, still feeling nauseous and dry wretching off to the hospital we go…various doctors came & went and all were of the same opinion – that I had Wegener’s so they began treatment using IV Methylprednisolone & Cyclophosphamide. A CT scan & x ray confirmed that both lungs were affected – around ¾ of my lungs which also made breathing difficult, not so great when you also suffer from asthma.
However, I’d responded to the treatment, was released from hospital a week later, (albeit reluctantly from the doctor, he wanted to give me a day pass and then I’d go back at night...I wasn’t having any of that but I did promise that I would take his advice and rest, rest, rest)….when I was released my prednisone was 60mg for 2 weeks then tapered to 40mg. I’m also taking cyclophosphamide, 100mg, Co-Trimoxazole – 960mg, Losec – 40mg, Etidronate – 400mg & calcium pills.
Also taking Health supplements - 4Life – Classic Transfer Factor pills (works with the immune system) & CO-Q10 Omega 3 pills.
I’m so grateful that I came across this site, its fantastic and full of helpful information which can only serve to empower us Weggies and our friends & families, thanks for taking the time to read my story and I look forward to chatting with others.
And finally some information about me and where I’m from. I’ve been married for 12 years to the most wonderful supportive man called Andy. We live on the North Shore in Auckland, New Zealand and have a Golden Labrador called Kane whose 12 years old. Should any of you decide to visit NZ feel free to drop me a line, I'd love to meet up with some fellow Weggies.
Take care everyone,
Shirina
medication. This didn’t work. Nose became blocked, again only on the left side so it was off to the doctor for some relief. Throughout both October and November I visited the Doctor several times asking for medication to help me get rid of whatever it was that I had.
Tried antibiotics and various nasal sprays which did not work, my doctor assumed my symptoms were typical of hay fever given that we were heading into spring.
Then the headaches began, violent is probably the best word to describe them. The pain was so intense, I had never in my entire life felt such pain before, I was in tears and couldn’t sleep, and I couldn’t stand light or watching TV, not even daylight. On the days I was sick at home I’d walk around with an eye mask…I actually thought I was going insane.
Again, I visited the doctor and he mentioned that I probably had cluster headaches which were common in men but not in women. Painkillers – (codeine) were prescribed. He also suggested I go to the hospital for a CT scan just to be sure it wasn’t anything serious, which I did and the scan was normal. Around the same time I lost both my taste and sense of smell.
December 2008
First hospital admittance due to headaches
Emergency doctor consulted ENT Specialists who suggested they try oxygen treatment for Cluster Headaches. 20 minutes was the recommended time however the doctor left my husband & I in the room and 20 minutes turned into 40 minutes. This didn’t work as the pain got worse, much worse, I thought my head was going to explode. I was given some paracetamol but to to no avail. Stronger pain relief was required and I was given two doses of morphine both of which did not work. In the end I was given a cocktail of painkillers & inflammatory pills, Tramadol, Voltaren, Paracetamol, I guess at that stage they were willing to try anything. My left eyelid had also become swollen (this I later found out was due to the lacrimal gland swelling up – another symptom) I spent 3 days in hospital, was given antibiotics with a diagnosis called Sinusitis. A further 4 days later, I was back in hospital again...fatigued, more painful headaches the works…I was back on the prednisone & another antibiotic. I saw an ENT specialist who confirmed the diagnosis was severe sinusitis. He was keen to perform surgery but this would have to wait until January as there were no available days and Christmas was coming up. Spent 12 days in hospital on my second visit and was released 22 December with prednisone & other antibiotics.
January 2009
3 weeks into the New Year and Red spots/rashes appeared on my legs (below the knee only), I’d used an epilator (hair remover) and assumed it was because of this. Then both ankles swelled up which became very painful making walking difficult. The same week the swelling appeared I had an appointment with the ophthalmologist. He look one look at me and mentioned Wegener’s. My husband & I looked at each other, didn’t know what to say, we’d never heard of it before. I can’t even remember asking about it but I’m sure he told us what was involved. Before leaving his office that day he spoke with ENT & our Consulting Doctor who managed my case in hospital and it was agreed that I would go back onto the prednisone to try and settle the inflammation around my ankles. During this week I was also experiencing nausea, stomach pain, loss of appetite and tiredness.
Then on Friday 16 January, after another sleepless night I began coughing up blood and lots of it. Bent over in pain, still feeling nauseous and dry wretching off to the hospital we go…various doctors came & went and all were of the same opinion – that I had Wegener’s so they began treatment using IV Methylprednisolone & Cyclophosphamide. A CT scan & x ray confirmed that both lungs were affected – around ¾ of my lungs which also made breathing difficult, not so great when you also suffer from asthma.
However, I’d responded to the treatment, was released from hospital a week later, (albeit reluctantly from the doctor, he wanted to give me a day pass and then I’d go back at night...I wasn’t having any of that but I did promise that I would take his advice and rest, rest, rest)….when I was released my prednisone was 60mg for 2 weeks then tapered to 40mg. I’m also taking cyclophosphamide, 100mg, Co-Trimoxazole – 960mg, Losec – 40mg, Etidronate – 400mg & calcium pills.
Also taking Health supplements - 4Life – Classic Transfer Factor pills (works with the immune system) & CO-Q10 Omega 3 pills.
I’m so grateful that I came across this site, its fantastic and full of helpful information which can only serve to empower us Weggies and our friends & families, thanks for taking the time to read my story and I look forward to chatting with others.
And finally some information about me and where I’m from. I’ve been married for 12 years to the most wonderful supportive man called Andy. We live on the North Shore in Auckland, New Zealand and have a Golden Labrador called Kane whose 12 years old. Should any of you decide to visit NZ feel free to drop me a line, I'd love to meet up with some fellow Weggies.
Take care everyone,
Shirina