Carotid Artery Dissection - 3 Year Update

by - Sunday, April 29, 2018

It's almost 3 years on from my Carotid Artery Dissection (a tear in the Carotid Artery) and although I've posted at different stages and felt optimistic about how things were going, it is still a huge factor in my life. I'm posting this update to share a particular thing, but it does seem that a one off incident has become a continuous condition that I have to deal with.  That certainly wasn't something I thought I would have to contend with, but it is what it is, and I share here to maybe help others who are struggling with this.

Background to this post is that I tore my Carotid Artery in 2015. It was described on my chart as 'spontaneous', meaning that there was no discernible cause for it happening. What a dissection is, is a tear in the lining of the artery. This creates a 'flap' which inhibits blood flow and can lead to stroke.
See info here on the Bupa UK Site.

Cervical Artery Dissection Bupa UK
Picture courtesy of Bupa UK
Fortunately I didn't have a stroke - I was very lucky as many people do.  However, a lot of my ongoing problems have related to the damage to the nerves around my eye and I've only realised how much so very recently.  My Dissection was diagnosed partly on the basis of my having Horner's Syndrome which means basically that my eye was droopy and pupil on the left side was smaller than the other one.

After the first year of feeling incredibly ill and fatigued I began to feel a little better and things were going well but over the last three years I began to see a pattern with the pain and CAD symptoms (I call them that because it's the only way I can describe them - other CAD sufferers know how it feels).
So I could have periods where I felt reasonably ok but then full on symptoms would come back, droopy eye, scalp sensitivity, head pain. Often they would be triggered by stress or tiredness.

The worst episode of this was at the beginning of this year. It had been an incredibly busy Christmas with my candles but also my new granddaughter had arrived and then my poor daughter became really ill with mastitis and then a flare up of her Ulcerative Colitis. I was incredibly stressed and we were trying to mind our little grandbaba as Síomha had to be hospitalised at various points. As soon as she became reasonably ok again, my body obviously just gave up and I began to feel really ill.
My eye became very droopy and also it felt like my face was drooping and I had a couple of episodes which I was very concerned might be TIA's (transient ischemic attack) - like getting into Mark's car and literally forgetting how to drive or how any of it worked.

Horner's Syndrome recurrence 3 years after Carotid Artery Dissection
Droopy eye earlier this year!

It completely freaked me out and I decided I should go to the doctor to get it checked, just in case something had happened or there was a blockage in my artery.
The doctor was great and referred me for a scan in Tallaght Hospital. I had the scan and was so relieved to hear that my arteries are completely clear, minimal plaque and good blood flow. This actually took a huge weight off my mind and Tallaght referred me back to a neurologist for all the other symptoms - that appointment has yet to take place so no update on that yet!

I suppose what I really wanted to share here was my new medication - it had not been suggested at any point previous to this but the doctor I saw was not my usual doctor and obviously thought it might be worth trying. I'm maybe 6 weeks into taking it and I literally feel like a new person. The medication is Amitriptyline - it was originally used as an anti-depressant but the smaller dosage is used to treat neuropathic pain (10mg). I have not had to take a single pain killer in weeks, I have more energy because I am not being dragged down by pain.  It has made me realise that I had simply adjusted to having constant low grade pain. It was literally there all the time and I just accepted it as normal and took Solpadeine when it got really bad.
So my experience with Amitriptyline has been incredibly positive and I know that taking on new medications can be difficult when you are dealing with stuff because the side effects are always the great unknown.  I have had very little issue with side-effects. Initially I felt very drowsy upon waking in the morning but it was ok after I had some food. I still take it quite early in the evening (around 7 p.m.) because my alarm is set for 6.30 on work days and I have to drive to the train station so I need to be alert.  I have had a few nights where my sleep was extremely restless and I had bad dreams but that seems to have settled.  I do have a bit of a horrible taste in my mouth sometimes but I try to drink lots of water during the day to counteract that.  To be honest, any of the minor effects are so worth it as things seem completely different when I'm not having to cope with pain all the time.

So the point of this post, I guess, is that if you are some time post CAD and still dealing with pain and other things, there might be a solution and it's worth pursuing for a better quality of life.

Thank you for reading and as always, the Facebook CAD groups are incredibly supportive and worth joining if you haven't already:

Closed CAD Group

Public CAD Group


And some of my previous posts:

Diagnosis

Fatigue after Dissection

20 Month Update

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12 comments

  1. I've never heard of CAD before but it sounds terrifying and very disruptive. So scary that you forgot how to drive :( Glad that you are seeing an improvement on the new medication and hope it continues x

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  2. Wow, you have been on one long health journey, hope you are getting the support you need and the new medication delivers some good results for you. Thanks for sharing your story I am sure it will really help other suffers.

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  3. That is quite a roller coaster jurney you been through i admit i have never heard of this before but it is good you are talking about it as it helps to spread awarness x

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  4. Gosh I have never heard of CAD either, what a journey you have been on, and how terrifying it must have been at times!

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  5. I've never heard of CAD. So pleased you are seeing an improvement and good for you for raising awareness of it!

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  6. Oh gosh had never heard of this before sounds incredibly stressful! Glad your new medication is working well xx

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  7. I'm glad you still went to the doctors to get checked out when it flaired up as it's always good to be on the safe side x

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  8. Oh my goodness! That's quite something that you have been through. I don't really know much about CAD but it sounds like you were very lucky getting treated without any of the super serious things that can happen. You brave women! xx

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  9. So glad you're finally feeling a bit better, long may it continue x

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  10. Never heard of this before, great you are raising some awareness. Glad to hear you're doing ok.

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  11. Oh gosh, this all sounds so scary. I'm glad the Amitriptiline is working. I hope it continues to.

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  12. Wow you have certainly been through something! Glad to hear your new medication is working well for you! x

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