Migraine: Day 12

Well, this has been yet another fun week. My migraine symptoms have ramped right up and been keeping me company for 12 long days now. Fortunately I have only had to work one of these days, and I am supposed to work tomorrow. God only knows how...

It started with my cycle (as I mentioned in the last post) and just hasn't pissed off. This time it's appeared as a massive migraine headache. Along with the pounding headache; vertigo and nausea have come back to visit. Yesterday they hung around all day.

I have taken so many panadol, you know those huge bulk packs - all gone. The Neurologist has warned me not to take too many over a long period of time but I just don't know what to do to get through each day. I try to hold off as long as I can. The sad thing is they do nothing, My theory is that they can't hurt.

I'm allergic to codeine, it gives me asthma but I've had to pop a few Panadine and Mersyndol as well just to get some relief. The headache is worse than the asthma at this point!

On Sunday we had a few friends coming over, the same group we have now rescheduled twice due to my health issues. I was so unwell but I just couldn't cancel again. So, I decided to drink. Even filled with pain killers, I was still in bits I don't know why I thought it was a good idea to add wine to the equation. Actually, I do know ;

1. I just didn't want to let anyone down or be a party pooper

2. There was no way I was going to be able to get through it unaided.

3. I just wanted to be normal, I just needed the pain to go away for a moment so I could relax and have fun.

It worked for about three hours but the next day was hell. I threw up all day and my head punished me for my stupidity by hammering into my skull and sending piercing daggers behind my eyes. Stupido!

On Tuesday I got some acupuncture/massage with a practitioner I haven't seen before. Giving my medical history was lengthy and depressing. Hearing it out loud again I just couldn't believe what my body had put up with in the past 6 months. She seemed very concerned that in my state I was planning to have a transfer in a few weeks.

She has now made ME very concerned.

If I do get pregnant will it be hell on earth for 9 months? What if I am not well enough to do this? What if I am too unwell to be a mother? I can't even look after myself when I'm like this and I don't know how long it will last.

For the past 12 days, I have had to force myself to engage in life. I force myself to get up, get dressed & put make up on even if I can't go out. I went out yesterday for lunch with a friend, but felt like I was going to pass out with the crazy rollercoaster in my head. The remainder of the day was spent lying down. I pretend to myself and other people that I'm ok. I get sick of saying I'm not well. I've missed so many functions, parties, events thanks to my head and my ovaries!

I was always so active before this, I couldn't sit still and hated doing nothing. My career was always so full on, that's the way I liked it. Things are so different now, when I look back it's like I'm reflecting on someone else's life. It seems so far removed from my own reality.

Charlie isn't sleeping. He is so stressed with all of this. I had a turn when he got home last night. I couldn't move for an hour after it. I had another one this morning over breakfast. I try to reassure him I'm ok, but I'm not. I haven't had one for a good few weeks now, we keep hoping that each one is the last one.

The worst thing is I can't get any treatment for this. Nothing has helped me so far; drugs, acupuncture, massage, chiropractic, chinese herbs, naturopaths. I'm giving a new therapist a try on Monday, he is some type of energy practitioner who is also a chiropractor and reflexologist. My in-laws swear by his magical powers. So, I shall keep you posted.

That's all from the couch for now.

Head Games

These days, with every period (cycle) comes a wave of my migraine symptoms again. Since the migraine is all hormonally driven in my case, any slight change in the hormone levels seems to send me into a spin. It's kind of a little reminder that it's still there.

I was a bit worried about the arrival of this period. It is NEVER welcome mind you. For nearly two years now it's arrival each month has brought with it such disappointment. I knew however after all the ovary issues I've had in the past two weeks this one would be a particularly unpleasant one!

It arrived with gusto in the chemist yesterday. My head started aching early in the morning and was gaining turbulence by the minute. I was out having breakfast so ducked into the chemist to get some pain killers into my system quickly. When I tried to pay, I had a small *turn and couldn't speak. Usually on my 'bad' days my speech slurs or I stutter but this time, nothing.

I carry a note from my neurologist with me for such occasions but my body froze and I couldn't get it out of my purse. It's a really hard thing to try and explain to someone, especially when you can't talk! I feel like a drug addict on a high, and most probably look like one. I dread this happening in front of someone I know, but haven't seen for a while as I haven't told too many people about this.

The poor lady in the chemist didn't really know what to do about my momentary brain pause and tried to determine if I was going to pass out or vomit, all I could do was shake my head in slow motion.

The remainder of the day was spent chewing Imigran to try and aid my pounding head. Never mind the period pain I was so worried about!

Today I had to work, thank god my migraine had reduced to a bad headache so I got through ok. I couldn't possibly take another sick day.

Meanwhile, back down in ovary city....The IVF clinic have informed me that I will need daily blood tests and two or three scans for the next round, the transfer. I thought they said the frozen transfer process was supposed to be easier? And, more great news...I may also need to do a "HRT" cycle; more hormones in my system which means more days like these past few, if not worse. Enough already!

I just want to be well again. Well, and pregnant.

Too much to ask? I really have to hope that it's not.

* During the seizures or turns, I have speech loss/slurring which may last 5 minutes or the whole day, vertigo, my body becomes very heavy and I lose neck control (so I have to lean against a wall) and movements become slow. It is difficult to make eye contact or use my hands to communicate. It's like a little whizz fizz bomb goes off in my head. The actual fuzzy, fizzy bit only lasts about 30 seconds these days. At first, back in November they would last around 5minutes.

The Waiting and Waiting and Waiting Game

It's a strange thing. First, the trauma of the countless pregnancy tests and a rollercoaster of hope,despair, hope, despair. Then the desperation I felt being told there was no hope of becoming pregnant the old fashioned way. I thought THIS was rock bottom but I managed to pick myself up and carry on.

Then, the crazy random migraine thing hit which had a seemingly endless time frame. My emotional survival switched from IVF mode to recovery from crazy migraine thing mode. It's just so hard waiting. I would feel ok one week only to have a series of seizures and not be able to speak again for a week. I'd get better then worse, no end it seemed. I didn't really know if I'd have to wait a month or a year to start the IVF.

So, the strange thing is that we were so looking forward to the time we could actually begin the process! Most people dread it but I couldn't wait until I was well enough to get the show on the road (or in the ovary in this case).

So, in early March I was sick of being sick. I thought I would throw caution to the wind and get myself ready to start IVF at the end of the month. I had a visit with my GP to renew my referral to the Gyno. I was at the front desk paying, about to leave when the Dr called me back in. "I've just noticed you are due to have a pap smear, do you have time now?" she said. Sure, I said. Nothing to it.

Two days later I got the call back.

They had found abnormal cells, not in my cervix which is most common - but higher up in my uterus. AWESOME. I needed a biopsy with my Gyno. I cried in the surgery, at the front desk, walking to my car and in my car I called Charlie and crying turned to wailing. Why me? Why was I being punished?? I felt like I couldn't cope with any more bad news. I just needed a break. A "break" meaning I could get on with the most traumatic thing yet - IVF!

So the biopsy led to my Gyno telling me she thought it looked ok. PHEW! Charlie and I were high-fiving each other walking out of the office. We just needed some good news - actually just not getting bad news would suffice. I called the nurse at the IVF clinic to let her know that finally, I was ready to rock. It was actually going to happen! The nurse said she would call the Gyno to make sure we were all good to start proceedings.

She called me back with bad news..."I can't tell you any details, but you won't be going ahead this month. You need to see Dr tomorrow".

They found cancer cells in my uterus. I needed to have surgery to have them removed, a lovely procedure called a LLETZ. Teamed with that, Gyno decided to leave no stone unturned by carrying out two further procedures; a laproscopy and hysteroscopy to check out the remainder of my reproductive organs and make sure there were no nasty surprises lying dormant.

I had to wait another two months then before I started the IVF. It was another heartbreak having to put things off again. I felt like I'd never get there. I can constantly hear the clock ticking in the background, soon I'll be 34. Soon, my chances of conceiving even with IVF will decrease.

They always downplay the post operative pain. My stomach was filled with gasses (for clearer vision around my organs). This gas shot pain into my shoulder then back to my stomach every time I moved. Apparently this is a very common symptom and I admit they did tell me this however, jesus, I didn't know it would be so painful or last so long! My stomach looked similar to someone who was expecting - any minute - which added insult to injury! Fashion tip for anyone going through this, leggings and tent tops for winter, maxi dresses for summer.

Apart from finding some mild endometriosis all was well downstairs. All I had to do was buy a bulk pack of the largest pads I'd ever seen, avoid any penis's, tampons and movement and whacko the diddlio, all would be well.... in just 6- 8 weeks! Yay. In case you can't detect sarcasm, believe me it's there.

Perhaps this would be the last test before I would finally reach IVF?

Reaching Base Camp

When I wrote that last blog I was at an all time low. I thought things had got as bad as they could get (insert wicked laughter). I was wrong there. I didn't explain too much of what led me to that point, so here it is - the backstory and what followed.

Stupidly I had told everyone that we were starting a family straight away. Yep "watch this space!" I would say confidently, with no idea that it was ever going to become the nightmare that it has. So, they watched and asked. At first I'd cheerfully joke about us having to rush off home early from parties and dinners to get busy. After not too long, my jokes turned to short comments; not yet. Not yet. Oh so openly I had shared my hopes and how I am kicking myself now. How could I have been so naive back then.

At first we were told that it should be an easy fix, I simply had to take some pills each month and I'd be pregnant in no time at all. Bada bing bada boom.

Then, six weeks later we were told it was a little more complicated than that and we would in fact need IVF. I hadn't really let myself think too much about this as a possibility. I didn't know too much about it, I didn't think I would ever need to.

When people had told me they were going through IVF, I had always assumed this was a positive thing, but that was for other people, not us. It's not until you sit in that room with a concerned looking nurse telling you that your only hope is IVF that you realise how hard this journey is going to be.

When it started to sink in, I was angry. While others could just simply have sex to have a baby, we had to go through this traumatic and lengthy process which held no guarantees of success. The nurse at the IVF clinic told us that being told you needed IVF was like being told you had cancer. Why had I ever thought it was such a simple process for other people? I never had any idea that it would hurt this much. I'd never really had to think about it.

I was told to continue on with the pills that I'd originally been given, just to get things rolling along. I tried to be positive although inside I was in bits. So many emotions and fears built up inside me as the monstrous mountain we had to climb rose up before us.

After a day or two I realised we had no choice but to be strong and carry on with the plans. It is terrifying to enter into this having no guarantees or time line. All we knew was that it would be a long and tough journey. What we didn't know was how difficult it would be just to get to the starting line.

This brings us to the part where things actually got worse...

So,two days after the second month of these pills on the 16th of November 2010, I had a seizure. We were expecting friends for dinner and it happened. Luckily Charlie was with me and rushed me to the hospital, where they assumed it was a stroke. I couldn't speak, had residual weakness and was extremely dizzy. A plethora of tests were conducted that night.

This wasn't the first time I'd ended up in hospital. In Ireland 6 years prior I'd had a similar episode and been hospitalised for a week - they told me then that it was a minor stroke.

This time around, the neurologist had a different theory. He believed it was migraine and told me that I should take the remainder of the week off work. Although we were afraid, it was a relief to know that it wasn't a stroke and that my symptoms although bizarre were normal in the migraine world.

The only problem was that two weeks later I still couldn't talk properly, walk unaided, watch TV, read...I couldn't do much to be honest. My speech was slurred, slow and stuttered. I had trouble thinking of words and finishing sentances. I had constant vertigo even just sitting still and I had constant seizure like episodes.

More scans and more visits to various Neurologists and still the same diagnosis; migraine. The strange thing was that I was yet to have a headache, apparently they are only one symptom of migraines!

The hardest thing was being told that it was likely to be the hormone tablets that were the trigger for my migraine. The tablets that I had taken were nothing compared the strength of the IVF treatment that I was to have. I was advised not to go ahead with the treatment as permanent brain damage could be a result.

I was completely unable to speak for the first three weeks. After this initial phase I could speak with a strong slur. Some days I would wake up and it was better but as soon as I got a little tired, the slur would ramp up again. If someone took me out to a cafe as a treat I had to point to what I wanted. I would end up in tears trying to communicate as it was so hard. The harder I tried it seemed the worse it would get. I was becoming very depressed, not knowing when this would all end. I now have a huge respect for stroke victims and those with physical disability as I got the same looks of pity from people when I tried to speak.

The Neurologists told me that it was all energy driven which made sense. Showering and having breakfast was exhausting, by the time this was done I would have to lie down for a sleep again. Then wake for some lunch and sleep for the afternoon.

I spent ten weeks on the couch. My vertigo was horrendous, I felt like I was on the high seas even just sitting still. I longed to write about my experiences at the time, but couldn't look at the computer. My mother offered to bring me some audio books to pass my time but the thought of this was so depressing I said no!

I eventually did get migraine headaches during the four months and they were shockers. My head was in so much pain I cried, vomited and couldn't even lie on a pillow for the pounding. I have to snicker now when people tell me they have a migraine and seem to be functioning fine. You want to see a migraine!?

Although I seemed not to be improving, I tried so hard to be positive.The Dr's couldn't give me answers or time frames as they hadn't seen the migraine last like this before. My life had changed completely. In month two I lost my short term memory, It was hard to think. My seizures had decreased in strength and frequency but were still there most days. .

In late December they started me on some Epilepsy medication. I had tried to stay away from the drugs as they were so strong and seemed to have some crazy side-effects. THings were so bad though that I was willing to try anything to get better. After a few weeks I realised they were doing more harm than good. By February I had totally lost my short term memory to the point where I couldn't have a conversation. The headaches began arriving every day after lunch and growing until they were unbearable by evening. The seizures had not let up and I became even more depressed. Would I be like this forever? I couldn't stand not being able to express myself, some day talking was so hard I just didn't speak at all. Teamed with my speech problems, just trying to remember what I was saying was a challenge in itself!

I spent so much time crying. I felt like I was being punished, but for what? I had made a promise to myself that 2011 would be the year of positive thought. But how the fuck could I be positive with all of this heartache going on? Charlie tried to remain positive and calm for my sake, but you could see the worry in his eyes. Seemingly, his wife had broken.

At that point I decided that the drugs needed to go and I had to just heal my own way. After being weaned off them, I felt so much better. The fog around my brain had lifted and I was able to think clearer again. My depression eased immediately.

Charlie and I started going out again, just for short outings but being able to leave the house was great. The first night we went out to dinner as a "I'm finally getting better" treat. But, I had a seizure at the table and we had to leave which was hard since I thought I was getting better. Charlie had to help me leave, it was embarrassing and disheartening. I would take two steps forward and then three back.

I was too afraid to go out alone or without Charlie as it was hard to explain to people what was happening, especially since my speech was badly effected during and after each seizure.

By March I was able to work a few days a week again, although I was so tired it was great to be back living life again. At first I started half days and I would come home and fall asleep straight away. I had to only work two half days a week but it was great to have been able to progress that far. Everyone at work was very supportive and knew that if I had a seizure, not to fuss but to let me have five minutes to recover in peace. Luckily I don't have to talk too much at work! Days when the vertigo or headaches were bad I wold have to call in sick. There was no warning with this, I'd just have to wake up and see what each day brought.

During that four months of hell, the focus had shifted from IVF to me just getting back to normal again.

We knew the huge risks to my neurological health that were involved in doing IVF however we didn't have a Plan B to fall back on. We desperately wanted to have a baby so we decided that once I was well enough we would risk it and just hope for the best. In a way, getting to that point (of good health) was my driving force to get through the hell I was in. I was determined to recover for our potential baby's sake.

Surely we deserved some good luck, right? Well, you would think...