Different Day, Same Head

Good Morning Bleeps.

I am now nine days post Lumbar Puncture and guess what? Yup, still have a bad head. I decided yesterday that I wasn't going to acknowledge the headache any more. I made a concious decision that it was now all gone and I was taking my life back. I got off my back and sat at my desk where my main computer is because I needed to send an email to a client.

As I sat there composing my business email I was aware that the pressure was building up in my head and ears. Nope, not going to take any notice, go away headache because I am not interested in giving in to you today, you are not there.

Oh yes it was and the pressure continued to build. I closed my right eye because my brain was threatening to explode out of the socket. I needed to finish the email because it was a potential new client and I have to earn money. Unfortunately there is no "get out of jail free card" where bills are concerned.

As I hit send on the email I literally burst into tears. The pain was kicking my ass again, I was feeling sick AGAIN. I called Phil crying and asked if he would pick up Alice from school. I was supposed to get food when I did the school run and clearly this wasn't going to happen so I asked Phil if he was OK with us ordering in pizza (again). I sobbed to him how sorry I was and that I feel like a burden, I HATE this. Of course he told me to not be silly and to go and lay down but I was beside myself with pain and sadness.

I was also concerned because have an EP test booked at the hospital on Friday (tomorrow) and so I had a phone conversation with the secretary asking if it would be possible to reschedule. I am nervous that I wont be up for it, that my head will be too painful. The hospital is a thirty minute drive and who knows what the test involves (I don't) but a good friend told me that hers lasted for four hours. The lady told me that I couldn't reschedule the test since I already cancelled once before. I told her that this was the first appointment that I had ever had for this test and so that was a mistake. She replied that no, I had another appointment that I changed already. I insisted that I hadn't but she was having none of it. I guess computers are NEVER wrong?! Fine I said, I will be there. I was starting to wonder, did I piss off some sort of medical God somewhere or am I just terribly unlucky?

Later in the day I spoke to my sister on the phone and she was frustrated for me too. She always knows what to say to make me feel better and yesterday it was the AWESOME news that she had booked her tickets to come over for two weeks in the summer with my beautiful nephew and niece. I joked that I would probably still have my headache at this rate. I also told her how I was in this month's Montel Williams Face of MS video (just over the 5 min. mark). She watched it while I was on the phone with her and as soon as she saw my photo she started to cry. As soon as I heard her cry, I did too. Through my tears I joked that hey, I am finally famous and I never had so many friends before now, so it's all good. It only took a life-changing, chronic illness to make me popular. You have to joke, right?



My friends Krista (2 mins 30) and Sandra (4 mins 52) are here too. These ladies have been a massive support to me along with lots of other people I have met on Facebook, Twitter and via this Blog. I won't ever be able to give enough thanks for the support and friendship of so many lovely people, my silver lining in this big black cloud.


Today I am light headed yet again and my right eye socket is threatening to lose control of my brain. The pressure is building and I am wondering when I will ever be free from this head. I am DETERMINED to get on with it today. I have to get food in this house for my children, I don't care if I walk around with one eye closed and in pain to get it done. I can't give in to it today, I will fight.

My legs are seriously tingly and heavy today too and it's weird because before my LP head I would have been fed up about that but in a weird way these symptoms feel like "old friends" and I don't mind them being here keeping me company. Now if we could just gang up and evict the pain in my head that would be great.

I am not sure what to do if it continues. If I call my GP they will tell me to go to the A&E and we all know how wonderful THAT experience was. I tried calling NHS Direct but the machine said they are only dealing with urgent cases. What is considered urgent? A debilitating headache? I am not sure. It is quite a lonely place to be.

So enough about me, how are YOU?

Is Anybody Listening?

Good Morning Bleeps.

I will continue on from yesterday's blog if that is OK with you because my Lumbar Puncture adventure didn't end on the day of the test.

I woke up the next day with the pain still in my back. I also had a headache but nothing I couldn't handle, it was just the hangover head I had been warned that I might get. I was more concerned and wanted to know if the pain coming from my lower back and down my left leg was normal (or at least nothing to worry about). Because of the massive pain I had felt during the procedure I was concerned that something inside had been damaged. I called the day hospital where I had the test done and was luckily put on the phone with the lovely nurse who had held my hand during the procedure.

I explained what was going on and she said that I shouldn't worry and that it was probably just some bruising. She asked about my head and enquired whether I had any pain in my neck or anywhere else. I told her that I had the headache and yes, some stiffness in my neck but only to the degree that the Doctor had warned me could happen. She reassuringly told me that my back was probably just sore but to keep an eye on it and let them know if it (or my head) got worse.

I took myself off to the hospital for my three o'clock appointment to have my heart monitor fitted. I had a bit of a car park altercation with some stupid cow that decided to hassle me from behind while I waited for a car park space. Now usually I avoid road rage at all costs (I had a bit of a run-in with a psycho that freaked me out many years ago) but this woman was PISSING ME OFF! I was sitting there, with my indicator flashing, waiting for a car space and this stupid woman was behind me, flashing her lights, getting agitated and throwing her hands in the air like I was doing something wrong. Really? REALLY?

I turned around and let her know in no uncertain terms that I wasn't in the mood for her bullying. Just in case she didn't fully understand how much she was getting on my last nerve I threw in some sign language (well, fingers really) to help express my dissatisfaction at her rude behaviour. It is just as well it happened before my heart monitor was put on because it would have probably exploded. I am usually such a mild mannered person (oh OK then, not mild but not usually a Miss Angry) but I had a sore head and a sore back and I wasn't in the mood for some stupid chick with a bad attitude and no manners.

My headache was getting worse so on the way back from the hospital I stopped by the pharmacy for some stronger pain killers. I asked for the strongest ones they sell over the counter and popped a couple right there in the supermarket. Phil got home from driving Megan home and we decided to go to the Indian for dinner. As I sat there in the restaurant my head started to really hurt. I mean seriously, need to put my head on the table, don't care if I am in a restaurant, my head is going to explode HURT. I popped more pills but nothing was helping.

By the time we got home I was in agony. I was literally in a ball on the floor, holding my head and crying. I told Phil (through my tears) that if it was like this tomorrow I would need to go to the hospital, I have never felt anything like it in my life. I thought I was going to get away with the headache from hell that I had heard horror stories about, I thought wrong.

The next morning it was no better. I was in serious pain. I couldn't sit up without feeling like I would throw up from the pain. I called the hospital and I was told that I needed to go to A&E immediately. My fellow MSers had also advised me to go in and ask for a blood patch. I needed this to plug the hole where my spinal fluid was leaking from. I was told that I felt OK while laying flat because my brain didn't realise it wasn't floating and then as soon as I was upright BAM - torture.

Phil drove me to the hospital and I cried the whole way there, holding my head in anguish. I sat in the waiting room of the A&E crying like a baby and not giving a monkey's who was looking at me. It felt like torture sitting there waiting but soon enough my name was called and I went through to a cubicle. I explained that I was post Lumbar and that I had been instructed to come in because this headache needed attention. I asked for a blood patch and was told that she had never heard of it. I was given liquid morphine but I explained to her that no pills/pain killer was working. She told me the Doctor would be with me soon and to get some sleep. GET SOME SLEEP???? What part of "I am in total agony and can not function" did she not hear?

As I expected, the morphine did nothing and we sat for hours waiting. Eventually a Doctor (junior) came in and I repeated my story. She gave me more pills (even though I told her that pills were doing nothing and I knew that I needed a blood patch) and left. In the meantime my Aunt (who is a UK based midwife) sent me a text telling me to ask for a blood patch (she referred to it as a EDBP), routinely done in midwifery for women who have a bad reaction to an epidural. I told her that I already had but that they hadn't heard of it, I had actually started to think that maybe it was just done in America (where are lot of my MSer friends live). She was outraged and told me to stand up for myself. I was trying but it is so hard when you are in that much pain.

Phil eventually got mad at all the waiting and went off to find out what was going on. They said that the Doctor would be with us soon but they were busy. We had already been there for five hours and I was still in agony at that point. I asked Phil to go home and get my Mum as it looked like I was going to be there for a while and I hated the thought of my Mum at home by herself (not that she minded). Almost as soon as he left they arrived with a wheelchair to take me to a ward.

I was informed that I was going to be put on a drip and then they might be doing the blood patch. HOORAH! Finally somebody was going to help me. I was whizzed (and I do mean whizzed, the guy pushing the wheelchair was obviously late for something because it was a white knuckle ride) to a ward. As soon as I was pushed through the double doors my heart sank and I wanted to cry. I was on a geriatric ward (every woman was at least in her 80s) and there was an air of total depression. I was greeted by a nurse who said "I told them I wasn't ready for you yet". Not exactly a warm welcome and I felt the tears welling up yet again.

I have quite a few friends who are nurses and I KNOW the pressure they are under but I am speaking here from a patient's point of view and as somebody that was in a lot of pain and I just feel that there needs to be a certain level of care and compassion. If you don't have it or if you lose it along the way then it is time to get out and find another job, that nurse would have been better off as a prison warden!

I was instructed to sit in the chair where she took my blood pressure and left. Oh well, so what if it felt like I had come to the end of the world, at least I was going to get help now. I really needed to be laying down but I had been instructed into the chair and there was a guard rail up on the bed so I couldn't get up on it even if I wanted to. I sent Phil a text to let him know where I was and before long he came back with my Mum. I had now been sat there for about an hour and none the wiser of my pending treatment.

Eventually the female junior Doctor that I had seen in the beginning came in with a male Doctor who shook my hand and told me that they wouldn't be doing a blood patch as it is too invasive. He asked me about my headache and I explained my journey to that point. He told me that I didn't fit the usual criteria for a lumbar Puncture headache as they usuually come on in the the first 12-24 hours. I explained to him that it DID come on in that time frame but that I also had a bad back and THAT pain was worse. I supposed the fact that my excrutiating pain came on outside of his text book timeline then I wasn't a candidate for help?!

So I was promptly discharged with more pills that DO NOT WORK. I was beside myself. Why wouldn't they help me? There is a procedure out there that would stop this torture and it was being denied. I have worked my whole life, I have paid my taxes into the NHS, I am entitled to care aren't I? Apparently not.

I came home and put my head down. More tears and lots of pain. I was told to go easy on the pills that I was given (codeine) and they can make you loopy apparently. I was at the point of wanting to pop them all in one go in the hope that it would stop the pressure in my head. It was unbearable. I had an awful rushing noise in my ears like I was under water and I literally felt like I was going to pass out from the pain, like my brain was going to explode.

I had been a good patient hadn't I? I had followed my discharge instructions, I was told to go to A&E if the headache became unbearable, which is what I had done. I had been there, in pain, for over seven hours and for what? More pain pills that did nothing. The only thing I could hope is that I would wake up and it would have passed. Sadly this would not be the case. Check back tomorrow for the next chapter of "our health care system is like something out of a third world country and you are basically screwed if you are in pain because nobody gives a flying fart".

So (for now) enough about me, how are YOU?

And The BAB Award Goes To ...

Good Morning Bleeps.

Have you missed me? Well, I have missed you and what a week it has been (and still continues to be)!

I will probably break down my story over the next few days as I have had quite an experience and if I tried to tell the whole story in one go it would take you all day to read it and also if I sit up for too long I start to feel quite poorly. As it is I am writing this laying on the sofa with my laptop propped up on cushions.

As many of you know I went in for my Lumbar Punture on Tuesday 14th (Valentine's). I was told that Phil wasn't allowed to come in with me so he dropped me off at the door and went off shopping in Canterbury with my Mum and the girls. I was taken onto the day hospital ward and asked to change into a very sexy hospital gown, it's quite hard to pop those buttons down your back all by yourself so I only managed the top few and just wrapped the rest of the gown around me. I was a nervous wreck and asked the nurse if I could take one of my Valium pills to help me relax (I came prepared). She told me no and said I would be OK. I was a little upset that I wasn't allowed the drug but couldn't be bothered to argue.

I was in the middle cubicle and on either side of me were other women waiting to have their test done. I was to be the third (and last) person to have it done so I had quite a wait and could hear everything that was happening on the other sides of the curtain. I sat in the chair and listened while the first lady had her test done. The first thing I noticed was that she had her husband with her. I was NOT impressed. I asked my nurse why I was told that I couldn't have Phil there with me for support and yet this lady had her partner with her? She replied that while they don't like it, they can't stop a patient from bringing someone with them if they insist. Maybe that is where I go wrong, I am too polite and play by the rules. I should have just said "sod that, I want Phil there" and then I wouldn't have been alone and scared.

The first lady (with her man) was very vocal during her test. She literally screamed and complained of the pain the entire time. If I wasn't nervous when I got there, I sure as heck was after hearing her freaking out. I had my nurse with me and she shook her head and whispered "don't listen to her, you will be fine". The tone and look that she offered me suggested that the lady next to me was not a typical patient and that I shouldn't judge what it would be like based on what I was hearing.

I knew there was a lady on the other side of me waiting and being the open (nosey, obnoxious) person that I am I decided to have a chat with her. I walked around the bed so that I was on the other side of the curtain and said "knock knock, hello lady behind the curtain?" She replied with a "yes?" (probably wishing to be left alone but who wants to sit all by themselves getting nervous?). I asked her if she had ever had a lumbar puncture before and she replied that she had, about seven months ago and that it wasn't that bad. We chatted for just a short while and then it was her turn.

I sat and listened and sure enough, hardly a peep came from that lady. She was a real trooper and the lack of screams gave me a lot of comfort. She seemed to breeze through the test and so I relaxed .... a little!

Before long it was my turn. A lovely, young lady Doctor came in and introduced herself. She explained that I might feel some pushing and maybe some odd sensations but that the worst part would the anaesthetic as that would feel like a sharp scratch and then a bee sting. I was instructed to lay on my left side with my knees pulled up as close to my chest as possible.

She started to push and poke around on my back, marking out her target spot with a pen. I asked if I had a "good spine" to work with and she replied that I have the "best anotomical back" that she has had in a while. Of course, being the competitive person that I am (think Monica from Friends) I replied "Are you saying I win? I win the BAB (best anatomical back) award? Oh wow, I feel so honoured". You could say I use humour as a defence mechanism. The Doctor and the nurses all laughed and agreed that I did indeed get the BAB award although sadly no large, gold, man-shaped statue or anything was to be given as a prize.

She proceeded with the numbing process, the dreaded "worst part" that I had been warned of. Sure it was a bit of a sting but no big deal at all. This was the worst part? Easy peasy, that other woman must have been a wimp.  She checked that I was numb by poking me with a needle and I confirmed that yes, it was working and that I couldn't feel a thing. Boy, this was a breeze.  The main event started with a little pressure and some odd sensations as she had predcited but nothing I couldn't handle. I have had four kids after all, three of them naturally with no pain relief (not even gas and air!) so I have a good pain threshold. Then I heard her say "oh" and realised that it wasn't going as straight forward as she was hoping. I asked if everything was OK and she informed me that she had some blood come through and then it had all stopped. She thought that the needle had nicked the bottom of the dural sac that contains the spinal fluid and then it had clotted into the needle, nothing was coming out. The nurse went to get another needle and try again. She asked if I was OK to continue and I just told her to do whatever she needed to do to get the sample, no way did I want to have to come back.

The second needle went in and OH MY GOD I had the most intense pain shoot down my left leg and into my foot. I instantly burst into tears. Like I said, I am not a wimp when it comes to pain, I have been through childbirth and labour without even a pain killer but I have never felt anything like this. I felt like I had been zapped in an electric chair. I couldn't stop crying, literally like a baby. I started to feel a bit guilty for thinking the first lady that got tested was a drama queen. Anyone listening to me from behind the curtain would be thinking I was a pathetic baby but honestly it hurt. The nurse came to me and told me to hold her hand, which I did. I was conscious of not breaking her fingers because I was squeezing so hard. I kept apologising over and over for "being a baby" but I kept saying "I didn't expect that, it was a shock, I really didn't expect that". I must have sounded like a broken record but the nurse was lovely and kept reasurring me that I was doing great.

When it was all done I joked that I might not have prepared a speech to accept my BAB award but I did a Kate Winslet and cried instead, even in pain I found a good joke (well, at least I thought I was funny).

I was told to relax for a little while and was given a cup of coffee with a couple of biscuits. I had only been laying there for about fifteen minutes when the cleaning lady (I am assuming this is who she was as she was cleaning all the cubicles where people had left) pulled back my curtain and said "How much longer are you going to be here?" WTF?! I replied that I didn't know and go ask my nurse. Everything I had read said that it is best to lay flat as long as possible but I was getting out of bed, dressed and into the car for my half hour journey home within the hour.

I returned home to a beautiful bouquet of flowers (with chocolates) from my sister and brother-in-law, which was lovely. I received another bouquet during the afternoon from my Dad, also lovely. I was laying down as instructed all afternoon (drinking lots of coffee as caffeine is said to help) but by early evening I was in a lot of pain. I was warned that I might get a headache that was "like a hangover" and let's face it, I am no stranger to those but this pain wasn't in my head. Sure, I had a muzzy head but the pain in my back was unbearable. I knew I needed to lay down but laying down was killing my back. Sitting up was hurting my head. I ended up in tears saying that I just didn't know what to do with myself.

Before my test I had asked the Doctor if I was going to be OK to go out for my Valentines dinner (Phil had booked one of my favourite restaurants) but by about four o'clock it was obvious that I wasn't going anywhere, I was in too much pain and we had to cancel. I was so sad. I dosed myself up with pain killers and laid on the couch, not exactly a romantic Valentine's day but not something that I could help.

I hoped that when I woke up the next day I would be OK but the "fun" was just about to start. It is fair to say I have been in agony ever since. I need to rest now but will continue when I feel better, please let it be SOON!

So (for today) enough about me, how are YOU?

Iced Brain

It is Sunday afternoon and I am sitting on the sofa watching two of my lovely girls do my Zumba workout. They are having a great time, laughing and joking away with each other. I say MY Zumba workout but to be honest I have never even done it.  You see it was around the time that I ordered the entire kit that my symptoms all flared up and the most energetic thing I have done since then is start this blog.

I keep waiting to wake up symptom free, is that ever going to happen? I want to Zumba!

Today I have been on pain pills (the strongest over the counter ones available) trying to relieve some of the pressure in my head.  It feels like someone literally has my head in a vice grip. It is NOT nice.  I have never really been a person who gets a lot of headaches or migraines (in fact I don't think I have ever had a migraine from my experience of friends who suffer with them) and I would rather not start now thanks.

Last night the insomnia kicked in and when I got up to go to the bathroom I noticed a really strange (new) sensation in my head.  It was as though somebody had popped an ice cube into my brain.  Literally the left side (near the top) of my head had a feeling of being freezing cold and almost wet.  It felt weird and more than a little worrying.

When I saw my Neurologist last week he said that he "wasn't worried" about any of my symptoms although he understood that they were "bothersome" to me.

Bothersome?  BOTHERSOME?  Hey Doc, let me stick that pencil in your eyeball and then tell me if THAT is bothersome (sorry but I do get annoyed when how I feel is minimised by someone that should have more understanding)!!

So, once again I am back on the internet to see if the ice cube in my brain is something typical for MS sufferers and sure enough, the cold and wet sensation seems to be quite common.  I think my Google is going to start saying "Oh no, not you again" soon.

I have spoken to so many people who have felt like their Doctor didn't believe them or thought they were exaggerating.  It seems to be such a common theme.  I am almost at the point where I am not comfortable reporting any of these new symptoms or issues as I don't feel like he wants to hear about another "bothersome" issue.  I think that is quite sad really but it just seems to be the way it is.

I truly appreciate all of messages I have received from other MSers sharing their own experiences because it is a reminder that even though it feels like it sometimes, I am not alone in this nightmare journey.

I am determined that I WILL be doing Zumba soon. I just need my friend Caroline to finish the magic fairy dust that she promised me she is working on, which is really nice of her since I would never let her be "Sandy" when we did our version of Grease. I just hope that this new feeling in my head won't be a regular visitor.

So enough about me, how are YOU?