I will start by saying that at the present moment I don’t take ANY medication. But for 1.5 years I took medication to relieve neuropathic pain caused by Tarlov Cysts on a daily basis. In this post I describe the medication protocol I followed, side effects and my recommendations as you consider starting a similar treatment.

MEDICATION

Tarlov cysts, in my case, caused me to have severe neuropathic pain (refer to this post for more info). Medication prescribed by my doctors played a crucial role in managing my neuropathic pain, providing relief and improving daily functioning. The medication I took included:

1. Gabapentin: This is a medication often prescribed to manage nerve pain and seizures. It works by calming overactive nerve signals in the brain. Typically, it’s taken orally with or without food, and the dosage depends on the condition being treated. As per my doctor’s instructions, I started on Gabapentine at very low dose (200mg) and I increased it gradually (+200mg every 7 days). Maximum dose will depend on your weight and condition.

Other medicines that could be prescribed by your doctor instead of gabapentin is Pregabalin (Lyrica): pregabalin is an anticonvulsant used to manage neuropathic pain and decrease paresthesia. It’s known for its efficacy in conditions like fibromyalgia and peripheral neuropathy. Your healthcare provider will determine the appropriate dosage based on your specific needs.

2. Amitriptyline: While traditionally an antidepressant, amitriptyline is often prescribed in lower doses to manage neuropathic pain. Amitriptyline increases the levels of chemical messengers (serotonin and noradrenaline) that stop the movement of pain signals in the brain. Studies show that neuropathic pain relief is significantly better when combining Gabapentin and Amitriptyline.

It is to note that I didn’t notice any improvement on the feeling of pain right away; but after couple MONTHS I noticed decreased tingling sensation in my foot and less pain in my leg and sacrum area. It was difficult at first to see any improvement because improvement wasn’t linear…I would have some good days followed by some bad days. That’s why, I recommend you to write a diary where you note the medication you take and your overall status every day; this will enable you to better track and assess your progress over time.

Gabapentine & Amytriptiline was my base medication but then, on a need basis (when pain would peak), I would also take Ibuprofen/paracetamol, tramadol, voltaren dolo cream and use Neurodol Tissugel (lidocaine) patches.

SIDE EFFECTS (Gabapentine & Amitriptyline)

The theory: Common side effects of Gabapentin and Amitriptyline may include dizziness, drowsiness, tiredness, sleepiness and coordination problems. Also, Increased heart rate, blurred vision and dryness in mouth. Some people may experience weight gain, swelling in the extremities, or mood changes. Some people don’t experience any side effects. Always follow your doctor’s guidance and inform them of any concerns or side effects you may be experiencing.

My personal experience with side effects: Awful at first…OK with time. I actually started first with only Gabapentin and then after few months my doctor added Amitriptyline on top. The first days after starting Gabapentin I felt like being on a boat 24/7…even if the dose was really low (200mg) I was so dizzy I barely moved from the sofa. I believe this lasted for about a week….then I was no longer as dizzy but I felt EXHAUSTED and DRUGGED. And that lasted MONTHS.

For weeks I would spend more time asleep than awake. Not ‘undisturbed sleep’ as the pain would keep on waking me up; but I’d spend TONS of hours sleeping. Side effects also would peak after each increase in medication dosing; even if the increases were small, I would spend few days feeling dizzy and sick. Then the new dose would settle and I’d feel better. I would say that side effects were tough to manage for the first 3 moths; after that, I would have good tolerance for Gabapentin and Amitriptyline (very little to no side effects).

MY RECOMMENDATION – Start slowly, increase gradually.

For me, it took time to start feeling the benefits of Gabapentin and for my body to get used to the side effects. I was very lucky that my doctors prescribed me a protocol where I started medication at very low dose and increased dosage very slowly so my body would have time to get used to its side effects. I’ve met other people suffering from chronic back pain during the past 3 years that would tell me that they simply didn’t tolerate Gabapentin and that had stopped it just a few weeks after starting it because the side effects were too brutal.

My recommendation is for you to BE PATIENT and also, to discuss with your doctor the option of starting medication at a very low dose and increasing it gradually. This worked well for me and I recommend it. But every body reacts differently to medication; so, having an open communication with your doctor will ensure a tailored approach to finding the most effective solution for YOUR neuropathic pain.

And remember – You’re not in a rush, you want to feel better. Even if it takes time…it’s worth trying it.

Finally, traditional medicine is only one of the many routes I explored to manage and improve my chronic back pain. I invite you to discover the rest of the routes in My Tarlov Cysts Pain Toolkit section of my blog.