The Pituitary Foundation strives to raise awareness about the pituitary journey. To do so, we need volunteers with the courage to tell their stories in the media, radio, print, web and, occasionally, on television. We often get requests for stories but don’t have the volunteers to match to journalists.
If you would be willing to put forward your name and talk about your journey, we’ll gladly put you on our Awareness Stories list.
Please email helpline@pituitary.org.uk to learn more.
Memoirs of A Headache
by Jennifer Zelkha
It all started when I was 11 years old. I developed these excruciating headaches on a daily basis, clutching my head in my arms and squeezing. It was the only thing I could do to try and relieve the pain. Sometimes, I’d just see black, other times I’d get dizzy and occasionally I felt like I was being punched repeatedly in the head. These feelings would last anything from 2 minutes up to 2 hours. My mum constantly took me to and from the local GP begging her to come up with a solution, but we were always told the same thing, “I’m sorry, but I’m sure it’s just growing pains. These headaches will eventually fade”.
After a year or so of the same routine, we decided to seek other help and went to a private GP. He requested some blood tests, an MRI Scan and referred me to a specialist.
I remember the MRI scan so well as it was my first. I was young and naive and hadn’t a clue what was going on around me. I was asked to change into a hospital gown and was taken into this room which was cold and had a massive machine with a tiny hole running through it. The next thing I remember was being asked to lie down on this stretcher, I was strapped down, my ears were stuffed with ear plugs, I had an emergency button to push in one hand and headphones playing the song “Angels by Robbie Williams” in full blast. I was slowly moved into the “tunnel” and the machine started making excruciatingly loud noises. For the first time in my life, I was scared.
I vaguely remember the day the results came out. My parents were sitting on either side of me with worried looks on their faces whilst I was swinging my legs and staring aimlessly. It was at that moment the specialist announced I had a Benign tumour on the Prolactin gland which was located on the base of the brain. There were only two words that I caught onto and understood. The first was tumour and the second was brain. I immediately grew to hate the doctor who gave me the news; there wasn’t a single thing I liked about him. Those two words reverberated constantly through my mind throughout the appointment. I had stopped listening to everything he was explaining to my parents and because of this, I immediately thought of the worst case scenario.
When we got home, mum and dad sat me down and told me that benign meant non cancerous and that the condition I had was treatable. I listened but didn’t say too much because at the back of my mind I still was hearing those two words over and over again. I didn’t know who to believe or how to cope. From that moment, I knew that things would be different. I couldn’t sleep; having a tumour was all I thought about. I didn’t dare tell anyone, not even my friends. I didn’t want anyone to think I wasn’t “normal”. I just wanted to carry on with how life was before I went to that doctor.
The following day I started taking Bromocriptine 3 times a week. I got into the routine of taking it on a Monday, Wednesday and Friday and it did wonders. After several months my Prolactin levels reduced heavily and my headaches had disappeared. I was living life as normal, a happy go lucky teenager or at least that was the image I was trying to portray… School was becoming a struggle with friends, I was losing my appetite by the day and I started to distance myself from my family. I’d run upstairs after school and tell my parents I’d have heaps of homework. The truth was… I was becoming very depressed. As time went by, it was getting worse. I was becoming moodier. My weight was at an all time low, although my prolactin levels were just about normal.
We went to the specialist and he came to the conclusion that loss of appetite and depression were common side effects of the Bromocriptine. It was time to start a new drug " Cabergoline. This suited me much better and over the next few years everything had settled down again although I did not feel truly happy. I had been transferred onto the NHS as I was no longer covered on medical insurance and didn’t need check ups so often.
Come the age of 17, I decided to stop taking Cabergoline. It was pretty foolish and stupid, especially because I hadn’t been instructed to do so, but I was rebellious and “couldn’t be bothered” to take medication anymore.
Over the years, I’d grown to hate my tumour as well as myself because I felt there was something wrong with me. I wanted to lead a normal life. So I developed a routine every time I got a headache; I’d take Cabergoline for a week and then stop it again. I would tell the doctor I forgot to take it from time to time. Occasionally I’d get a telling off but this method suited me fine, as I didn’t care at the time. This vicious circle went on for a while, where I would shut out everyone around me, because I didn’t want to talk about it nor did I want any help with solving the issue. Believe me, I had a support network all around, but I lost my trust in everyone over the years, all starting with that doctor who gave me the bad news.
When I was about 19 years old I started taking Cabergoline regularly again and the prolactin levels were still pretty normal. I had finished school and was out in the real world, working hard. I was in a full-time job trying to prove myself but found that the more I got stressed the more my headaches would come back. After a couple of years I grew to hate my job, fearing that I had been walked over but didn’t have the heart to leave. One day my team and I were called into the office and were all made redundant. Although I was stressed at the time, I soon learnt that the grass was greener on the other side. I soon moved to another company and am very happy there, but soon after I turned 22 my head started becoming worse again.
I will never forget February 4th 2008. I was in a meeting at work and my boss turned to me and said “you look terrible”, he asked if everything was ok and I said that a headache had suddenly come on. I was sent to the company doctor who diagnosed me with a Migraine. He prescribed me to Imigran which I had an allergic reaction to. I went back and was told to try Migraleve " this did nothing for me. It was at that point we established that these headaches weren’t migraine related.
A few weeks went by and I was still off work. I was suffering with a headache that was mainly one sided. My symptoms were very similar to those of a migraine; I couldn’t stand the light and the only thing that helped was trying to sleep. I was so tired yet I would sleep for about 15 hours or more a day. I went to the GP and was diagnosed with EBV (Epstein Barr Virus) and Viral Meningitis. I was off work for months recovering. Throughout this time my prolactin levels were starting to creep up again. In April, I was in and out of the doctors having MRI scans, and many other tests. I met up with Neurologists and Endocrinologists to see if there was anything else we should be looking for.
From June 2008, I was able to work from home. My company were so supportive and had everything set up for me… I’d increase my hours on a weekly basis however my headaches were still a killer, my breasts were lactating, and I was constantly tired, lethargic and feeling at an all time low.
In August 2008 I met my boyfriend and it was the first time in 10 years that I really started to open up about having a Prolactinoma. He helped me approach things differently and I soon realised that having it wasn’t the end of the world but just a “challenge”. I was on trial and error pain killers to try and relieve the symptoms. You name it, I was on it. Amitriptyline, Indometacin, Gabapentin, Pregabilin and others. The side effects of some were just awful. I would hallucinate, have tingly hands and feet, feeling dizzy and nauseous on a daily basis.
As more time passed, I became increasingly convinced that it was my Prolactinoma that was giving me such bad headaches. However the doctors wanted to look at every angle and the idea was dismissed. A couple of months later I went to see another Endocrinologist, one that I had seen a few years back and he requested some blood tests. Although these tests were generally repeats of ones I had a few weeks previous they started to show that my prolactin levels were still going up. He phoned my main Endocrinologist and asked him a few questions and from there they decided to increase my dose of Cabergoline. I was being monitored regularly between the 2 doctors and the question of surgery arose. At the time it was a last resort and we didn’t go into too much detail about it, although I was referred to see a surgeon in November 2009. When I spoke to the surgeon about the possibility of surgery she was dead against it. I was too young, and my levels of prolactin weren’t high enough although well above the normal limit for a macroadenoma. There were just too many risks. I returned to work on a daily basis but with reduced hours to take my mind off things which helped.
Come December I took a holiday with my family. We thought that maybe I needed one. (Oh and boy how I did!). Everyone was hoping that I’d come back fully recovered any maybe everything was just stress related. In an ideal world I could leave all my headaches behind!
When I returned in the New Year, sure enough my headaches came back with me. I knew it was my prolactinoma craving attention. I decided I wanted to try and doing something a little different, to help myself and others around me. Although I had done no sport for years, I entered myself into the Bupa 10,000 run. I wanted to run on behalf of a charity for people with Pituitary problems and that’s how I came to find The Pituitary Foundation. I now had something to focus on and was very excited. Every time I trained my headaches would become worse but I just ignored the pain. I didn’t care, I had a goal to aim for and didn’t want to stop living life because of my 24/7 headache! The run became my motivation in helping me feel better.
In April I returned to full time work. In early May 09, I was referred to a pain specialist who wanted to inject some of the nerves in my head, neck and back to try and help me manage the discomfort I was in. I was aware of the 3 injections I’d be having and decided I had nothing to lose my having them. On the day, I ended up having 9 and I have to say " that was the most painful experience of my entire life. Just thinking about it now makes me squirm. I was given tramadol to relieve the pain and was told to take this over the next few months. I was told to avoid any exercise for a few weeks but I had the run at the end of the month and I didn’t want to quit. I couldn’t, I had worked so hard towards it. So after a week in bed I announced that I would be taking part in it, even if I had to walk.
On 25th May 2009, an hour and ten minutes later the run was complete. I didn’t walk once but stopped for a 10 minute toilet break as the queue was so long! I managed to raise over £6,000 and I was on such a high. Mission Accomplished!
In the meantime I was slowly becoming addicted to Tramadol as it was helping the headaches subside a little… or maybe it was making me suffer with other side effects that I just didn’t focus on the headaches as much? Who knows. The pills were described to me as a necessary evil but all I can say is they were a nightmare. I wouldn't wish them on anyone.
In early July it was decided that my Prolactin levels had been rising because I was no longer responding to Cabergoline. I was so angry at the time, because I couldn’t believe it took the doctors over a year to finally listen to what I had been saying. Surgery was now definitely on the cards.
I caught up with the surgeon that I saw in November 08 and although she was suddenly very keen to operate on me and told me that everything would go OK. However my family and I decided to go with another surgeon that the other Endocrinologist had suggested. He explained that the surgical procedure would be as follows: They would cut through just in front of my 2 front teeth into the upper lip and then through the nose and remove the Prolactinoma. My mum asked him if I would still look the same after the operation and after he said yes and we all had a good cackle I was booked in!
Yes, 2 weeks later, my prolactinoma was going to be removed! It suddenly hit me, and I became very nervous. I worked up until 30th July 2009 to save me from thinking about the operation.
The following day, operation day, I woke up as normal and headed out to the shops. I wanted to buy lots of things to take keep me busy throughout my stay in hospital. At about 10:00am we headed to the hospital and I got settled in. The day started to drag and the surgeon was running late. My mum started to worry and get worked up. I had to stay calm to try and hold everything together but deep inside I just needed to let it out. I had to be brave. I remember changing into the hospital gown and thinking “this is it”. I hugged everyone and told them I loved them.
A couple of hours later it was time to go down to the operating room. My mum insisted she came down with me to hold my hand until I was put under anaesthetic. The room was very cold and I remember the surgeon coming in saying that it was my turn. My mum was growing increasingly more agitated. I was asked to lie down on the bed so that I could be injected with the anaesthetic. What seemed like an eternity but was really 5 minutes later, the anaesthetist still had no luck with inserting the needle and said, “Ok. We’re going to have to gas you.” My mum was asked to leave and I became very much panicked. I don’t remember too much after that apart from telling the surgeon I was scared and wanted to cry.
After that, I guess I was sound asleep. The next thing I knew I was in the recovery room. I was told I needed to go into ICU for constant care for the night. I asked to see my family before I went in and my mum and dad came down to see me. Next my brother and boyfriend came in. I vaguely remember my brother looking scared and saying a few things before he left the room. I then remember asking my boyfriend if I looked that bad and scared my brother. He told me not to be silly and that I looked beautiful. I was then wheeled into ICU.
Being there was horrible. There was constant noise, bells ringing and people rushing around. Doctors would flash torches into my eyes every hour, my heart was being monitored and I was in pain, uncomfortable, felt depressed and wanted to go home. It felt like time had frozen because there was a never ending wait for me to be moved back to the ward upstairs. Half way through the night I remember saying to the nurse that I think it was about time I get up and go to the bathroom, I had been since the operation and I needed to go. The nurse smiled at me and explained that I had a catheter attached to me and that I had been going to the toilet regularly. This was needed as Diabetes Insipidus was a risk. I had been letting out about 1.5 litres every hour or so and I didn’t have a clue!
At about 5:00am it was bath time. Within 10 minutes I was bathed, in a new nightgown and bed-sheets were fresh. How that was accomplished, I have no idea. And the fact that I didn’t even move from the bed, well that was just unbelievable! I’ll tell you something; the nurses there were pretty amazing. But I can only say that looking back on it now; because I don’t think I really appreciated it that night, as I was too drugged up and in way too much pain.
At about 6:00am I started to wonder more and more what I looked like, how swollen my face was etc. I couldn’t move my head around too much but I knew I was still bleeding from the operation. By about 10:00am my mum and dad were allowed to visit, but not for a long period of time. I was so happy to see them, it meant the worst was over and things could only get better.
When I was moved back upstairs I felt excited as I would be able to see people but I was in so much pain and was so tired that I kept falling asleep. Over the next couple of days I tried to do a bit more. Eating was difficult because the operation really affected my mouth and I was becoming more and more self conscience with the way I looked. I got to a point where I had to take a photo of myself to see what others were seeing.
The next day my catheter and drips were removed which enabled me to walk around again and go to the bathroom! It’s funny how much you can take your body for granted until certain things happen. A few days later I was free to go home. The first few nights were pretty uncomfortable but the swelling on my face went down slowly each day. 8 weeks after the operation I returned to full time work, although it took a few weeks to get back into it, I was glad I wasn’t stuck at home dwelling in self pity from the pain I was in.
Five months have now gone by and I’m doing so much better, my headaches have pretty much disappeared with the exception of when I am stressed and my prolactin levels are nearly normal. Although I’m still uncomfortable from the operation, the doctors are so pleased with my progress that I don’t have to see them again until March…
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