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.

Twisted

My transfer was set for 730am this morning.

Yesterday, the pain in my swollen stomach became very sharp. Sharp enough that I couldn't walk without limping and expelling anything through any orifice (sneezing, breathing, weeing...I'm sure you get the picture) was very uncomfortable. It's hard to know what to do as you expect a moderate level of pain through all of this, the common symptoms that they tell you to expect consist of (amongst others);

Nausea, constipation, shortness of breath, bloating, severe cramping, tiredness, dizziness as well as post operative pain......so at what point do you become concerned?

Anyway, I called the clinic and they seemed to think it was serious enough for me to leave work and head in for a check. It's hard to explain to your colleagues that you have to leave straight away with no explanation! This stuff is personal, I don't want everyone following every step. I don't want to have to share my pain and failures with too many people. Only those closest to us know about the IVF. I am afraid to tell people now as the times I have opened up, people have said the most stupid and hurtful things.

Upon examination Gyno developed a concerned look. I think she was more afraid of giving me more bad news than anything else. There are only so many tissues in her office. The verdict was that my ovary was swelling badly with a possibility of it twisting, losing blood supply. This would mean I would have to lose that ovary.

Why the fuck couldn't this bit just go smoothly, we were so close.

She said that I had to go straight home and lie down to reduce the chance of it twisting. I was to still go in at 730am this morning and she would decide then if we would go ahead with the transfer or cancel it and freeze my embryos. I cried loudly. She hugged me and apologised saying she just didn't want me to get sicker. If she did the transfer under the circumstances and I became pregnant I would end up in hospital for 3 months.

So, the pain continued all night and was still there when I went in for the transfer. Gyno decided not to go ahead today. I now have another wait of around 6 weeks until I can do another transfer from my frozen test tube babies. The good thing is that it will give my body and therefore the embryos the best chance of a pregnancy. This morning there were 2 great embryo's able to be frozen, the third was a little slower and they didn't have a smooch hope that it would pull through with it's siblings.

I am at home lying down on the couch trying to digest this new delay. I know it's for the best, it's still just so hard and I can't help but feel like I'm being punished again. I just wanted something to go right for us.

Some very good news just came in via a call from the scientists. All three of our little embryo's are able to be frozen, meaning I have three chances of getting pregnant without having to undergo surgery and the hormone injections again.

I'm already proud of them.

And Then There Were 3

Three Eggs. I nearly cried when the nurse told me. I wasn't hoping for 20 but somewhere around 10 would have been at least worth the effort. Why was I so upset with my number? These are the statistics the nurse gave me before my retrieval;

70% of the retrieved eggs will survive the first night

40% of these surviving eggs (now blastocysts) will make it to the next day and become embryos.

From there, you aren't given a % of success for the transfer process (the part where they pop the embryo into your uterus and hope for the best). As my gyno said "It's luck of the draw". Well, that's comforting!

I am no mathematician but when I awoke to the number 3 and a whole lot of pain, the likelihood of me becoming pregnant without having to go through the whole process again was not good. It also struck me that there was a strong underlying expectation that it wouldn't work the first time. The nurses all expected that I'd been in a few times, the surgical nurse even greeted me with "Hi, great to see you again". My surgery a few months ago had been at a different hospital...I'd never seen her before but being an IVF patient, she just assumed I'd been back a few times!

I didn't sleep last night despite the General Anaesthetic still in my system. I was wired worrying about my 3 little eggs, which by now were mixed with my husbands finest sperm.

Hopefully they all survived the night.

The scientist called with GOOD NEWS this morning! Can you believe it!? The three little ones all survived (in your face statistics) and done what they were supposed to do; form blastocysts.

Now, their job is to stay strong and keep on keeping on until my transfer on Friday. No pressure guys.

My job is to try and find clothing that will fit around my hugely swollen belly.

Harvest Day 26th May 2011

Finally, after so long and so much on the 16th of May we began.

I had been waiting so long to get to this point, but when I arrived I was terrified. Terrified of the emotional rollercoaster, the process, the pain. Mostly, we were afraid of what the injections would do to me.

I am happy to report that it didn't go too badly! I couldn't work for the 13 days during the injections as the rush of hormones though my body brought back the vertigo (one of the main migraine symptoms I get), also some days my speech was as slurred as my husband's is after a work "lunch", the memory loss came back which made it imperative that I wrote everything down on a chart I kept on the fridge. That teamed with some whopper headaches, HOWEVER it wasn't too bad - not as bad as it could have been!

Today was the first day in the past 11 that I haven't had to inject myself, which was a nice break. My last injection was the 'trigger' which I needed to administer at exactly 815pm last night. This meant excusing myself from Italian class. It was also State of Origin night, which made for much speculation about my departure! How do you explain this stuff!?

Tomorrow is my first ever egg collection day (commonly known as harvest day, a name which gives me a mental image of my gynecologist at a ho-down every time the term is used) a momentous day in the IVF process. Tomorrow, I find out if my body has behaved as it should from the 1 6 injections I've given myself and produced great looking, well sized eggs. I don't know how it's going to go, I don't even know what a good result is classified as. All I know is that my scans have shown I have around 7 decent sized follicles with who knows how many little eggs inside and my belly is bloated like I have just been to Sizzler.

Whilst I am under the knife, my husband's job is to produce a prize-winning 'sample'..that's right he has to spoof in a jar while I am having surgery.. Gee men have it tough right..

Fingers crossed. Ovaries at the ready...

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...

Perspective

So many times I completely lost my shit thinking I might have been pregnant. Embarrassing visits to the Dr for the morning after pill which would make you so sick it made you actually wonder for a brief flash which alternative was better?! And who can forget the "thank god I got my period" moments. Never before had I been so happy to have those familiar excruciating cramps in my loins.

Then, I got married. Suddenly it was ok to want to be pregnant and the idea of being a mum, which I had never previously let myself entertain seemed so possible, so probable, so real. After a little while my heart had firmly planted this seed and the idea of being a mum grew and grew to full a viable reality, a certainty. My want was overwhelming.

We tried and tried some more, we laughed, we wondered with naivety when it would happen for us. We thought of names and made lists. We put off trips and had our last big festival in preparation for the inevitable. Our friends and family meanwhile announced their impending new arrivals.

And everyone offered their advice. So. Much. Advice. Just chill out. You need to relax. That worked for me. You should take Vitamin E, C, B, Folate etc etc etc that worked for me.Are you seeing a naturopath/massage therapist/acupuncturist/nutritionist. That worked for me. Well yes, naturally they are all trying to help...but after 12 months clearly there are problems Vitamin E can't fix and frankly, you really don't want any more fucking advice. You just want to be pregnant. The most annoying thing is that most of the people offering you this advice have 3+ kids that were all conceived naturally or talk about the terrible, dark time they had 'trying' for 6months...

I was one of those people, I asked friends "When are you guys having kids?", "Don't you want kids?". I never thought for a moment that they might be having trouble, I never knew how common this problem was and how much pain my questions (on top of everyone else's) could cause. I oh so flippantly gave advice.

We tried some more because you know it does take time (so I have been told once or twice..) All the while,more advice came flooding in from 'helpful' well wishers and mother earths. All the while, whilst wondering what was wrong with me, I had to smile and congratulate the expanding group of new parents which seem to consist of everyone apart from us.

No one tells you that there is a possibility, in fact a really strong possibility that you might be one of those people who can't actually have children. There really isn't any way to prepare yourself. I can't even look back in hindsight and think 'Gee, I wish I'd read that self help book..'. Honestly, nothing could really help this feeling.

As you can imagine it was beyond any type of pain I have ever experienced when we found out we couldn't.

I can't say I was surprised because to be honest for the past few years, the God's haven't exactly been smiling on me. I feel like they played a cruel joke on me when I turned 30, they gave me the gift of an amazing partner ( I couldn't have built one better myself!). The potential 'He' was one thing I thought would always make my life worthwhile. In return it seems since then, they have slowly stripped me of everything else I held dear to me.Deep down I kind of knew the privilege of children would not be easily awarded to me.

The worst thing is that every time I start to feel sorry for myself I think of all the people so much worse off than me. But you know, this is just my story. It's not trying to be any better or worse than anyone else's, it's just mine.

I don't even think I can bring myself to post this right now. I don't want any calls or emails from friends with kind words. I don't know if I feel ashamed..what is it I feel? Just sad I guess.

I hope that one day soon I will be able to share this, one day when I can look back on this time - when it is my past, not my future.