I wrote this post the day before I started taking Lamotrigine and after finding a small rash…I’ve already discontinued use of Lamtrogine. Just another reason why you should help me. Not sure how to help? Visit my fundraising page.
After a couple painful months off, I’m back on drugs for my CRPS. This time an anti-epileptic medication called Lamotrigine. That brings the total of my drug trial and error count to eight formal doctor endorsed medications.
- Gralise
- Gabapentin (in pill form and in two different topical lotions)
- Lyrica
- Lidocaine
- Tthe now much regretted Stellate Ganglion Block
- Oxtellar (Oxcarbazepine)
- Cymbalta (Duloxetine)
- Lamotrigine
Keep in mind, this has been going on for years and only recently has it started to accelerate and really push on my physical and mental capacity so a few months off the drugs is actually less harmful I think than coming off of the drugs. Almost every time I stop taking one of these medications I end up going through depression related to a loss of hope that the drug will work and I’m sure a bit of a mental mind fuck related to the drugs themselves. I’m a little less hopeful now for Lamotrigine, the last couple left me with rashes and a bladder that could hold more than a gallon of water! I have no idea what side effect I’ll have from this next one… so the next few weeks should be interesting.
One important thing to note, this year I will stop my avid endorsement of Movember – I’ve been participating for a few years now and have raised thousands for the cause. Instead my November fund raiser will be for CRPS. There is a fund raiser called Color the World Orange that is just getting started (the few of us that suffer from CRPS is fairly limited so we don’t get the attention that cancer gets). I’m not saying the cancer patients don’t deserve it, I still donate to cancer research as I’ve had too many friends and family die or narrowly miss death during encounters with that evil. I am saying that I suffer every day with CRPS and have for over ten years now, over twenty five if you want to get specific about mild suffering, and now that I know what the hell it is and have found that there are other people who I can work with to address the issue I am going to dedicate some time to getting better. So please go donate to the Color the World Orange campaign.
I have been taking lamotrogine for the last two years now, along with venlafaxine.
Lamotrogine is given to me as a mood stabiliser. The venlafaxine for my depression.
If I miss a dose of these meds it leaves me extremely depressed and an empty feeling and complete hopelessness.
As soon as I have taken them and they start to take effect I find these horrible feelings start to lift.
So I can understand when u say it leaves u with a head fuck feeling.
When one forgets to take the meds the chemicals that lamoragine releases drops fast and this is y u get that head fuck and y my depression thickens and the overwhelming hopelessness takes hold of me.
You are not alone in your plight to raise awareness for CRPS. And my blocks or anything invasive have always worsened my CRPS also. I hope you find a cocktail of meds that help you. Awareness campaigns aren’t always fun and trendy like growing a mustache, but some sometimes it’s still very worthwhile. If you aren’t already on facebook, there’s also a huge CRPS presence there (we are kind of taking over 😀 ) Best of luck with everything!
I’ll be posting CRPS stories all month on abodyofhope.wordpress.com