Monday, July 19, 2010

Windlost Gets Botox

(And no, it's not what you isn't a beauty thing!).

If you've read this blog a while, you know that I suffer from chronic head pain.  I don't always call it "headache" because it has gone beyond headache to become an invasive, debilitating head pain that occupies my mind and body on a daily basis.
Headaches suck

My neurologist is the best headache expert in Canada.  He has diagnosed me with "chronic daily tension-type headache with a pericranial component, and a migraine component".   What that means is that I have headache 30 days out of thirty and I always have a stiff, sore, and aching neck to go along with it.  In fact, my mid-back, my traps, and my neck are chronically sore and very painful.  To top it off, I have a bad back which means that I frequently have back pain on top of the daily head pain.  

Although I generally have all-over head pain, I also have the auras and intense one-sidedness of migraine, and particularly have headaches in and around my right eye.  Most days my headaches sit squarely and heavily in my forehead, over my eyes, and up the back of my neck to the top of my head.  It is exhausting to say the least.  Besides trying to be a good wife, daughter, friend, and blogger(!), I work full-time as an engineer, which is not an easy job on a good day, so I am not exaggerating to say that in the evenings I am always soul-tired - emotionally, physically, spiritually, intellectually.  D R A I N E D.

My head hurts and my heart hurts from coping with this.  Maybe it would be easier if I gave in and gave up, but I try to live a full, active, normal life.  I am a go-getter and a curious life-loving person who wants to do and see and learn everything.  If I could, I would be taking courses, exercising, working on the house, and enjoying my various other hobbies a hundred times more than I am able to right now.   

I've done just about everything conceivable to "heal my headaches", as though that were really within my control.  You see, the fact is this:
 Headache is a disease and it is no easier to heal than cancer for most headache sufferers.  You just try to manage it and hope that some day it goes away or something magic happens.

I have had headaches for twelve years, so I've gone through a litany of possible cures including regular chiropractic, physio, massage, acupuncture, countless drugs and medications, psychotherapy, yoga, rolfing, exercise, no exercise, weight training, dry needling, facet joint cervical vertebrae injections (cortisone), meditation, self-help books, elimination diets, supplements, etc.

I have not seen a naturopath, a psychic, nor an intuitive healer.  I have not tried Feldenkrais nor Pilates (yet!).  Nor have I quit work or gone on disability.  This is not a life option for those of us without trust funds.  So I don't intend to go this route until or unless I reach the end of my rope (which often seems terribly close).  

Instead, I just keep going...ONE DAY AT A in AA.

Sleep helps...I do best with 9h (honestly, who gets that?  I have to try...)

What does help is the following: 

1. Regular sleep hygiene and LOTS of it (not a cure, but definitely a mitigator).

2.  A caffeine-free diet (I adore coffee but have not had it in years).

3.  Avoiding intellectually busy or overstimulating environments (parties, meetings, big gatherings).

4.  Constant work on my head/neck posture.

5.  Medications:  Only one really works for me, namely Elavil (amitriptyline, an old-school antidepressant that helps these types of headaches).  But it is so sedating for me that I cannot take it in adequate dosage to fully reduce my headaches and still get out of bed before 10am and get myself to work (a long drive).  If I take enough to really improve my headaches, it is like taking a handful of sleeping my favorite drug must be rationed.  I also get relief from Maxalt on migraine days (accompanied by a day of sleep).  

6.  OTC medications:  I adore Robax Platinum to reduce my neck pain and sometimes headache but I take it maybe once a week as I don't want to over medicate.   It is marketed as a muscle-relaxant but is actually a central-nervous system suppressant.  

Exercise increases my pain dramatically, but I do it anyway for my mental health, and try to walk, garden, do yoga and be active at least 5 days a week.
Exercise hurts me.  But I do as much as I can.  If I exercise slightly too hard or even moderately one day, I can suffer terrible back and head pain the next day and can even flare up into a very bad headache cycle that lasts for days.  So I have to be very gentle or suffer the consequences. 

The only remaining therapy I haven't tried is Botox.  Which is the reason for this post, as I have an appointment with my neurologist on Wednesday for injections!
I am NOT looking forward to injections, but I'm desperately seeking some respite from the pain.  He will do injections in my back, various neck muscles, likely my jaw, scalp and forehead.  I never wanted to have Botox cosmetically, so I am worried about injections in my face.  I don't want to look like Frankenstein or lose facial expression, and I worry about side effects.

Let's hope I am healthy as a horse and make it through the injections.  I expect to feel bruised and battered for a day or two and David is coming with me to drive me home.  I must drive to work daily, so I hope there is no impairment in my ability to turn my head.  If the neurologist says that may be a side effect, I will have to refuse the shots as I cannot drive 50km on the highway every day with a totally paralyzed neck!  

The Botox will freeze certain muscles, but I hope I will still have mobility.  The exact effect is not clear, as besides paralyzing muscles, it is also believed that the toxin blocks a neurotransmitter for pain.  I just hope and pray I get relief, which to me will mean resuming a normal, high energy life.  I love life!  I want to accomplish so many more things. I have so many interests and I just want my tireless spirit back...

Wish me luck.

Top photo:


  1. As a former migraine sufferer, I cannot imagine living with this as you do. I have heard good things about Botox and migraine,and I certainly hope it helps you. After 25 years of weekly migraines, sometimes more, I finally found the drug, Atenolol, to work for me. It's an old blood pressure medicine that has been found to be a good migraine preventative for some people. I rarely get them at all anymore, and when I do, Imitrex takes care of them. Believe me, living life without the prospect of a migraine continually looming over me, is wonderful.

    I'm keeping my fingers crossed for you!!

  2. I will definitely be thinking of you. In the back of my mind I am always aware of your chronic pain when reading your posts, and yet you barely ever mention it...just reading this post gives an even deeper appreciation for what you deal with on a daily basis. Please keep us posted.

  3. Truly wow, I will pray for you that this works for sure, good luck with a hug attached, I will be thinking of you and keeping my fingers crossed. x
    Regards, Carol Ann x

  4. Hey! Sounds not good. Try a medicine for epilepsy, it helped me. I had to take it two or three years - and now : no pain, no medicine.

  5. I can really sympathise with you as I've suffered with headaches for years. A couple of years ago they died down but are back again now. I have the same time of headaches as you describe and they are debilitating but like you I keep going. I think my problem is that I find it hard to relax and am constantly on the go plus when I have a bad one I tense up and make it work then go to bed tense and wake up with it again. A tablet that worked for me is called Zomig but I live in the UK so it may not be called that in Canada. It did ease the pain of the most hideous headache ever. I also find that if I have a spa treatment it does help me to feel relax for a bit.

  6. sorry - forgot to add that I hope the botox works for you - let us know.

  7. Hi Terry - Good luck with the Botox. I have heard about it being used to treat chronic headaches like yours. I can't imagine having to deal with these types of headaches. Hopefully this will be the treatment that really makes them go away.

  8. I'm hoping the botox works - what a treat that would be for you. Keep up posted.

  9. I will keep my fingers crossed for one should have to suffer daily pain! I too am a migraine sufferer and have had a high dose RX for Imitrex for years. I have been wondering about the maybe you will be helping a whole bunch of us!

  10. I started using botox for a nasty frown line right between my eyes. As an unknown side effect of the botox my almost daily headaches went away. I told my doctor and she said they were finding that result in various studies at the time. I do not get the hundred of shots some migraine sufferers get, just the ones in my forehead for the frown line. I am so thankful for stumbling into this pain relieving treatment. I get botox every four months and about 2 weeks (for years) before my appointment my headaches start up again. Vanity served a purpose in my case. Hope it works for you.

  11. I'm so sorry to hear about your headaches. Feeling unwell is exhausting. I'm praying that the botox will work for you.

  12. So sorry Terri, I knew you suffered from chronic headache but when you explain it in this great detail I can't even imagine the pain you feel. I hope this new botox treatment gives you much needed relief.

  13. I really enjoy your blog and didn't know about your chronic pain. Wow, I hope and pray this works wonders for you! Your pain sounds horrendous. I've had tension headaches but only about 1/50 of the degree you've described and even at that found them almost unbearable. I think it's amazing you are able to function at the degree you do and have a happy attitude. Really hoping for relief...

  14. Best of luck. a friend had terrible migraines and believe it or not, the botox helped ALOT.

  15. Terri - I will be thinking of you and hoping for the absolute best result from the Botox. After reading this post and your description in detail, I am humbled by your strength and resiliency.

  16. I truly hope that botox gives you some kind of relief. Your story is very inspirational...the life you lead in spite of the pain, is really amazing!

  17. I hope the Botox works out well for you. I tried it twice, and while it does hurt, we deal with pain all the time, so we're fine with a sharp pain that is over momentarily. No worries! Good luck!

  18. Dear Terri, bless you for moving on in the midst of your pain. I knew you had headaches - but no idea that it was ever-present.

    My brother is here w/ family visiting FROM Calgary. I wish I could send something back for you. ... hmmmm...

    xoxo MMW

  19. Good luck and a great big hug to you Terri~ I'm hopeful that this will work!!!

  20. I am sure that you have heard this one million times but... just in case you can stand to hear it once more and try yet again another new thing... Please, please contact my dear friend Dr. Cynthia Bye. She will free you from your headaches. Her clinic has a webpage -
    Here's hoping the botox works for your symptoms! She will treat the cause.

  21. I have felt your pain (literally). I've never tried bottom and hope it works, but I also hope you can find more root cause solutions. For me, the biggest game changer has been going to a naturopath for NAET along with cutting gluten from my diet entirely. One little bite brings the brain fog, s few more bites and my head is in a vice. Not that it has to be gluten for you, but diet is pretty powerful.

    Best wishes,

  22. I get migraines and so does my dad, I guess I got them from him. While I dont get them nearly as bad as what you are describing I can understand the kind of pain they cause. They are life altering and nasty and REALLY hope the botox helps with yours.

    Crossing my fingers for you! Please let us all know how they go too :)

  23. Severe headaches are so debilitating. Your list of treatments sounds familiar - although I did them all for infertility! So I know how it feels to be searching for the 'answer' or a 'cure.' It can be exhausting.

    I so hope that the Botox treatments have that magic ingredient to relieve your pain. I'll make a wish for you as I send warm thoughts your way.


  24. T, I, too, am in awe of your strength. Your posts rarely, if ever, reflect the pain you suffer. We have anxious hearts for you and hope this is the true and final answer for your suffering.

    Best wishes! Donna

  25. Am in tears for you hon. You are so brave and strong. I can imagine you don't feel it but you are such an inspiration and reading this is making me count my blessings.

    I can't think of anything to add to your list of treatments apart from perhaps 'cranial realignment', homeopathy, and permanent diet changes.
    A girl friend of mine suffers 'trigeminal neuralgia' and has to be treated with morphine to manage the intense pain.
    I know her suffering and the way it impacts on her life, her children and work. I can only imagine how difficult it is for you as well.

    Hang on in there.

    x Charlotta

  26. Such a description of your life. I am in complete and total awe of the way you are handling the hand you were dealt. And I am praying like crazy that the Botox injections will work on that headache. Those poor nerves are on hyper overload.

  27. Hello! I just found your blog via janet's blog. (the gardeners cottage). I like the advice you give that could work to relief a haedache.
    I had a bad one for some days and going away on a minivacation, leaving the office and COMPUTER!! behind worked wonders.
    unfortunately, the computer is a bad bad thing. Mainly because it makes my neck tense over the day.

  28. I really feel for you, as my fourteen year old daughter is suffering from exactly the kind of headaches you describe. They started about six months ago and we've been trying everything we can to get them under control, but no luck so far. I would love to hear how the botox went for you, as it was also mentioned to us as an option. I really hope you find some relief, as I've seen first-hand how debilitating headaches can be. If you have any advice for my daughter it would be ever so greatfully received - my email is All the best, and I hope you find a solution very soon. Kerri