Health Update

Pia‘s recent enquiry in the combox, about my health, reminded me that I hadn’t given a health update for a while. It’s one of those things i meant to do and just never got around to, and then part of me was reluctant to post about this because so many people have/are going through really serious illnesses, terminal illness even, and i don’t like to whine about my comparatively minor health problems, but other blog friends have also asked via email and so I feel like i should do a follow up post on what’s going on in my head.

Did i tell you all that my meeting with the neurologist a few months ago was a complete nightmare? I think i did, if i didn’t, well you know now. Yes, lets just say that the neurologist had a rather ‘holistic’ aproach to dealing with health problems. Taking his advice would have meant i had to, in his words…‘wrap’ myself ‘in cotton wool’, ‘listen to my body’, ‘lie down in a dark room’ and ‘drop the kids off’ with someone else‘ every day when i was in pain…needless to say, life goes on whether or not my head is hurting or whatever so it simply isn’t practical advice. I near enough begged for medication that would enable me to live a reasonably normal existance, but Mr Holistic wasn’t having any of it.

Immediately after seeing the neuro, i got back to the car and i had a good blart  (a snotty crying session ) and said to my dear mother who had accompanied me to the appointment, that i could not understand how he could expect me to live like this for an indefinate amount of time, possibly for all of my life, maybe.

I went home feeling like i’d been resigned to living a life of moderate-excrutiating daily pain and felt that because of Mr Holistic’s dismissive attitude I had been sentenced to living a half life of telling the kids to ‘shush-be quiet-use your headphones-shut up-don’t be so noisy- shut up-must you talk in the mornings- shut up-don’t turn the light on its too bright-shut up-I have to go  lie down so please don’t kill one another-shut up-blah blah blah’.

I thought that after 3 – 4 years of chronic daily head pain, seeing the neuro was going to be the answer to my problems…surely he’d know what to do when the G.P was running out of ideas and medications to try on me.

I was so wrong.

But one good thing Mr Holistic did tell me though, was that the medication i was taking at the time was nasty nasty nasty.

I kind of knew it, but when you walk around most days feeling like someone has stuck a scewer in your eyeballs and is pounding your head with a housebrick, you tend to take anything your doctor is prepared to prescribe. I didn’t ask for the meds, i just took them.

Of course, the drugs rarely worked (they usually took the edge off the pain though, of you know what i mean) and a lot of the days, the pain would be unbearable with or without them but at least i felt like i was doing something about the problem and hey… they…spaced…. me…. out….. man.

Back at my doctors for a follow up appointment after seeing the neurologist, i relayed his holistic advice  to my doc and  though never (of course) stating that the neurologist had been utterly useless, she did agree with me when I said his advice had been utterly useless and impractical. As a single mother of two children, life still goes on and my family needs my input and attention. I can’t just ‘listen to my body’ (another piece of the neuro’s sage advice, along with yoga) becaus ehalf the time my body tells me ‘you’re knackered, go to bed and stay there for at least 48 hours’.

And breeeeeeeeeeeeeeeeeeeaaaaaaaaaaaaaaaaaaaaattttttttttttthhhhhhhhhhhhhh.

Since then, over the past few months, my G.P and I have worked together to try all sorts of combinations of drugs (triptans specifically) to combat  the chronic daily headache and eye pain and to try to treat/prevent migraines,  but so far nothing has worked. Now we are trying something new. I am currently taking anti-epilepsy medication, carbamazepine, and also a drug that is often used for depression but has been found useful to some chronic daily headache sufferers, amitryptiline…in addition to this i’ve weaned myself totally off codipar and now only take paracetamol for the pain. It doesn’t work very often, so i try not to take it since there doesn’t seem much point, unless the headache is extremely mild, which tends to only happen on 3 or 4 days a month, if i’m fortunate.

When at my docs in December the G.P asked me to relay to her specific details of my headaches, eye pain and migraines and i pulled from my bag a rather mucky and tattered looking notepad in which i record the tablets i take (otherwise i would forget and take a possibly lethal dose) and of how i was feeling when i took it (i don’t write p****d off, even if that is how i feel) …the writing is often scrawled and written in different coloured ink from one day to the next and it  really is a very disorganised  account (though i understand it)…she was therefore not impressed and asked me to make a chart of some sort, to record the headaches, migraines and eye pain, and so i kept a ‘pain diary’ for a month and this is a pic of a section of it:

chronic-pain-catalogue

When i went back to the Doctor last week she read it through and said she really isn’t happy that i am having so much pain (and other symptoms) and  she is referring me back to the neurologist.

She hinted again that this could be to do with something that hasn’t been picked up on yet by the neurology department and said that for the frequency of my migraines, eye pain and chronic headaches , the next thing likely for her to do would be to prescribe ‘hospital level’ drugs which she would really rather do only after the neurologist has had a chance to see me again.

Just to mention something about about my first visit  to the neurologist (while i remember)…

Funnily enough just before my 1st neuro appointment i went to have my eyesight checked to make sure their wasn’t a problem with my sight and the lady who did my exam asked why i’d made the appointment as i wasn’t due to  have a check up and don’t wear contacts or spectacles, i told her about the neuro appointment and she said that she had seen a few of the neuros at the same hospital and after a couple of years they were still not sure what was wrong with her. She told me to not expect to get a diagnosis or even to get a lot of support, she actually said that everytime she went there she left in tears! I was so sorry for her because she had also had a battle with cancer around the same time and she needed all the support she could get.

Anyway, the eye test came back fine, so i went to the neuro with a bag full of meds, my eye test results and a list of my symptoms which the doc had advised me to make because i am so forgetful.

And it was the worst thing i could have done to have walked in there and said ‘these are my symptoms and this is the result of my eye test’…because he immediately took the attitude that the eye test had ruled out any problems in my brain and i therefore didn’t need a scan.

He ruled out all of my symptoms (twitching, numbness (started sawing through my finger with the bread knife one day and didn’t even notice till i saw blood on the breadboard), pins and needles , flashing lights appearing before me when there aren’t any there, vagueness, forgetfulness, stumbling, putting wrong words in sentences, stuttering on occassion because i forget the word i am going to say etc)….he said all of that is perfectly normal and to go home and follow his recommended holistic approach…which included eating feverfew leaves if i could grow them in my garden. (i tried that years ago and it didn’t work).

The next time i go to the neuro i am going to handle it differently and not go in there saying ‘these are my symptoms what is wrong with me?’. They can figure me out instead. And good luck to them.

Of course, what this has also meant is that I have generally had to learn ways of going on with my life relatively normally and it does mean that i haven’t blogged as much, responded to comments as much, read blogs as much etc, while I’ve been trying out all these new medications and so I hope regular readers and friends of Ukok’s Place and the host of this blog, know that i really do appreciate your continued visits and understanding. In some ways, the new direction the blog is going in is also about simplifying and paring down my life in some ways, ways that reflect a need in me to live more simply, because simple, is just about all I can handle. Last year was a bad year for me, lots of crappy stress and bother that i needed like a hole in the head, this year i’m trying to cut even more dead wood out of my life.

So there we have it. My tale of woe. I will let you know what happens in a couple of months because it will probably take that long for me to get an appointment.

Thanks for reading this exceedingly long post.

p.s. i’m so sorry if sometimes/all times my posts come out back to front and upside down. I tend to write first paragraphs last and last ones first, i don’t know why it happens that way but it just does, i hope it doesn’t annoy you all too much when you read it.

Thanks to all those who have enquired about my health and thank you so much for caring enough to ask. It sometimes seems to me that I live in a world of ‘how are you’s’ …people ask ‘how are you?’ and often don’t even wait for the answer…it’s become a greeting in a way, like ‘hi’, they forget there is a question mark on the end.

It means a lot to me to know that there are people all over the world who care about and pray for me and mine. (and you are often in my thoughts and prayers too. I pray at each Sunday Mass for the intentions of all my blog buddies)

(((Big hugs to you all)))

Advertisements
This entry was posted in Home & Family, Uncategorized. Bookmark the permalink.

21 Responses to Health Update

  1. Owen says:

    We lift each other up in our woes. Still struggling on this side of the pond too. My thoughts and prayers are with you.

  2. pia says:

    Thanks Deb.. and thanks for stopping by my place. I suffered from frequent migraines years ago, at around the time my mother was getting them very often, too. I don’t know if we were in symbiosis or what. Anyway, now I get them about 2 times a year, which is more than enough for me! But my heart goes out to those who get any form of headache at any time, and especially if they are so frequent! How do you do it? I wouldn’t be able to work or function at all!
    Now for a couple of questions: Are you sure you need a neurologist? Do you think it might be hormonal imbalance or some other kind of imbalance? Headaches can be symptoms of lots of things, you know. You might even do well to see an orthopedic. You may have arthritis in your neck, which can cause serious problems both regarding headaches and all the other symptoms you mention.
    Hoping these ideas bring you some good!
    Pia

  3. Julie says:

    Oh, dear! Do you have an option of visiting a neurologist in some other hospital or clinic? Or is your health system such that you don’t have these choices? Do you have the right to ask for a second opinion elsewhere, someone not into “holistic-roll-in-seaweed-and-call-me-when-you-get-a-rash” type of “therapy”?

  4. Barbara says:

    Thanks for the update.. I had been wondering how things were..

    Thankfully I only usually get my migraines pre-menstrally, mid cycle and only rarely somewhere in between – but as they tend to last about 5 days each they tend to merge a bit…

    I pray that this time they will listen to you and actually come up with something.

    I have seen a vast improvement since I started taking propanalol as a migraine preventer – amyltriptilene was going to be the next thing to try….. I found that the lady doctors I have seen have been far more helpful than the men…

    The two that I have seen have children so know themselves the impact that they (migraines) have on family life, abd I am blessed with an understanding hubby..

    My heart goes out to you and my hat goes off to you for managing to bring up your two beautiful and lovely children as a single mum. Blessings to you Deb xx

  5. Rosemary says:

    Oh Deb, I will be praying for a solution to these problems. Hugs!!! May the docs be given wisdom. God bless you!!

  6. Sarah says:

    Prayers and wishing your results from doctors soon! I love knowing how you are so I can pray specifics. Still. It also makes me so grateful how healthy I am. Relatively speaking.

    God bless you.

  7. Karen says:

    Ditto to what Julie said. And continued prayers for you. [You don’t smoke, do you?[]

  8. mum6kids says:

    Keep at it Deb.
    My neuro has simply dropped me. No letter, no explanation and of course no diagnoses.
    I hope your GP stays on top of this and insists on things being done.
    Can she refer you to another specialist-a rheumatologist perhaps-who would be more willing to have an MRI done?

  9. Judy M. says:

    Hi Deb,

    I haven’t commented in more than a year, however I still read your blog faithfully. I am so sorry to hear about your health problems. I am not familiar with your health care system, but can’t your primary doctor order a head CT herself? It is a good idea to check with an orthopedist, however your primary could probably order plain xrays of your neck to see if you have arthritis.

    Could this be an infection? Is Lyme Disease common in your part of England or in the places you traveled to since you got these headaches? Chronic Lyme Disease can cause horrible headaches, that often aren’t relieved by the usual medication. Perhaps your MD can order some tests for this. However they have to be done by a good lab that knows what to look for and a Western blot should be done. Have you had a lumbar puncture to look for meningitis?

    The symptoms do sound like migraines and if everything else has been exhausted you need to find someone who is specialised in treating migraines. There is no reason you should be in so much pain and there are medications out there that can help you. Don’t stop searching and I will continue praying.

    • ukok says:

      Judy, i just want to let you know how very much i appreciate your comment. I love that you still take the time to read my blog, it does my heart good to know that. May God Bless you and yours. Deb x

  10. Rita says:

    I’ve been saying this prayer I found on the Vultus Christi blog, I find it a great source of comfort. I’m praying also that your physicians will drop their egos and preconceptions and listen to you.

    O my Jesus,
    do Thou in me whatsoever Thou desirest to find in me,
    so as draw out of my nothingness,
    all of the love and all of the glory
    that Thou hadst in view in creating me.

    Mother Yvonne-Aimée of Malestroit:

  11. Suzanne says:

    Prayers for you sweet one.
    I hope things ease up…please Lord for Deb..just help this to ease up and bring her peace. Thanks you, Lord.
    Amen

  12. praying

    I have migraines too (bad ones) but now when I’ve been trying to lose weight – eating better, going out more, avoiding alcohol and chocolate (and crisps) I’ve had fewer breakthrough migraines which is good good news. (I only started cutting back foodwise on Dec 30th and am happy to say I’ve shed a couple of kg though I have a long, long way to go still. I want to drop at least a couple of clothes sizes. Let’s see!)

    I spoke to a neurologist between Christmas and New year and there is a drug for blood pressure which also helps with migraines (as a side effect) and she recommened that if the clusters start again that I ask to be put on that.

    But I feel for you. Migraines and those background headaches all day every day must be really wearing 😦

    I do try to have quiet times at home – even with two kids – they CAN use headphones sometimes 🙂 and also switch off the tv 🙂 and do some homework in peace andquiet. But they hate that! … and I try to have a quiet spell myself (i.e no pc and no reading) each day – in my room – time for prayer and rest. I often doze off but that’s ok. God loves me as much when I’m asleep as when I’m a prayer warrior 🙂

    all this to say – there is a solution for you too Deb. You almost certainly don’t have to suffer like this all the time. Doctors at hospitals are a bit intimidating but if the advice given isn’t workable you owe it to yourself and your family (and the doc too actually) to speak out.

    But there might not be a miracle drug out there -and some lifestyle changes might be in order. At least that’s what I’m finding -and no it ain’t easy. I’d like to eat what I like and spend as many hours on the pc as I’d like – but it isn’t good for me and I’m starting to make small adjustments that hopefully will ease the situation. I hope for you too.

    Praying 🙂

  13. antonia says:

    oh gosh; I genuinely had no idea that you suffered from chronic daily pain.

    I really hope they can find something which helps.

    *hugs*

    xxx

  14. Goodness!!! I have had migraines but nothing like that frequency. I am amazed you can still write at all. Be assured of my prayers.

  15. Renee says:

    Goodness, I am so sorry to hear how awful this is. Have you been checked for diabetes or MS? With those diverse symptoms you really need more than medication, you need a diagnosis. Keep demanding one, you’ll eventually get the help you need. It is just so sad you have to be your own advocate, with no one else to stand up for you!

  16. Alexa says:

    Man, your file must be thick! I’d read this post right after you published it and want you to know you are on our list of prayers for healing…

    Also wanted to let you know that I gave you an award on my blog along with 9 other bloggers!

    Godspeed, m’friend!

    Alexa

  17. ukok says:

    I had a visit with the nurse this morning to do that blood pessure check up I mentioned above, as the doctor was concerned about it last week, well the nurse took my bloodpressure with one machine and then she wasn’t happy with that so she went and found another machine and took my blood pressure again and she still wasn’t happy with that either so then she left the room and said she’d spoken to the doctor and she walked in and gave me a prescription for Ramapril for my blood pressure.

    She asked if i have any stress in my life…gah, where’d you start! I cut it short and just said ‘yes’, basically.

    I’ll be seeing the doc in two weeks time about my ‘head’.

    Thanks friends for your support, encouragement, well wishes, advice and prayers. They are very much appreciated and i will spend longer replying to your comments during the week.

    God Bless x

  18. Jennifer says:

    Oh my, I can’t imagine living with that pain for so long. Can you ask for a referral for another neuro who is not a whack job????

    I use to take tegretol to control my moods. Alot of the meds I take are also used to prevent migranes.

    I get migranes once or twice a month. I think it’s one of the worst pains ever. I really feel for you…praying for you.

  19. Cathy says:

    The only headache I can ever remember being so horrible I couldn’t stand it was after David was born and i had had an epidural block, Thought I wanted to die…Praying for you! (No CT of the brain? Hummmm)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s