I want to preface this post by saying that those who suffer from Tarlov Cyst’s and any other chronic pain diseases are ALL extremely unique. Not only in our specific conditions, but within the same condition. What may work for me, may not work at all for others. Some medications that have given people much of their lives’ back may also make pain and symptoms ten times worse for someone else. Our bodies, chemistry, and make up are SO different from one another. In the end, I believe everyone needs to go through a process of elimination with treatments, medications, and combinations of things to find what works best for THEM! That being said, I figured I would share my own trials and experiences. Please keep in mind I am not a doctor and everything written here is based solely on my own observations.
So, that being said…
After nearly three months in what I’m now calling my first ever, full blown Tarlov Cyst ‘flare up’, I think I have finally started to get a handle on my pain and symptoms!!! Praise the LORD! Even though it felt like each week brought me new symptoms and challenges, I’m nearly at the point where I can say I have found a new ‘normal’. I honestly didn’t think this phase would ever come and although it’s been an extremely slow learning process, I am thankful for gaining even the slightest amount of control over my condition.
The first two and a half months were probably the most difficult. There was so much unknown, so many questions, so much fear, and an overwhelming amount of anxiety about the future. While I still don’t know what ‘tomorrow’ has in store for me in terms of my health, pain, and/or symptoms the only thing I can do now is deal with every punch and curveball thats thrown my way. I still don’t know what to expect each morning when I wake up, but at least now I do know what definitely has NOT worked, what may have helped, and even some things I know for certain that got me through some of my roughest days thus far.
Let’s start with everything that has NOT helped…
Basically every single medication that was prescribed to me for pain, inflammation, or any type of relief! Here is a little overview of the line up of drugs that were prescribed to me from the day my symptoms began to appear. Everything from NSAID’S to morphine to tranquilizers to other opiads, ALL did absolutely nothing for my pain or symptoms. Actually, I take that back. While Carisoprodol (AKA soma) didn’t do anything to help reduce any type of pain, it sure did knock me out! If I was having a really hard time at night and/or had a difficult time falling asleep because I was hurting, taking even 1/2 of one of these pills allowed me to sleep like a baby for at least a few hours! Good good stuff!!!
Everything else was entirely useless to me. Morphine and everything else that’s supposed to help dull pain & make you drowsy has the opposite effect on me. The nights I took any of this medication, I was completely wired, anxious, and awake for nearly the entire night. Not to mention my pain was absolutely the same, sometimes worse. Easily the most difficult nights I had over the three month period were ones where I took pain killers. I stopped taking most of these medications after 1-2 pills.
A BIG warning about this next medication… I’ve nicknamed it the “DEVIL”.
About a month into my flare up I was at a point where I was willing to try anything. I was so tired of crying everyday because of the pain I was in. I had heard of a lot of success stories from TC sufferers who regularly use Gabapentin, so at my first neurosurgery appointment with Kaiser I asked Dr.Rhoten about it. He was already a step ahead of me and was going to suggest I give it a try. I was so hopeful! Boy was I in for a HORRIBLE and wild ride.
I remember as soon as I had the prescription filled, I took my first dosage right then and there in the pharmacy. Dr. Rhoten had me on a very very low dose and I was supposed to increase slowly over the course of three weeks. Literally, within 24 hours while my pain seemed to be somewhat dulled (going from maybe an 8 to a 7.75 on a scale), I was hit with a LONG list of other symptoms that left me feeling like a crazy person! At the time, I had no idea where these symptoms were coming from though. I was convinced that my TC’s were causing the extra issues, so I continued on the medication increase as instructed because I was also told that it may need some time to take proper effect. OK, here we go.
I went from bad to worse over the next few days. I was at a point where I couldn’t hold things in my hands properly. My equilibrium was all over the place regardless if I was sitting, standing, or laying down. I was constantly dropping things. I was clumsy and tripping over my feet. My mind was foggy. I couldn’t put words or thoughts together. I was having crazy irrational (emotional, depressive, and suicidal thoughts). My stomach was a mess. I can honestly say I was in a very very scary place. I would EASILY take the constant pain I was in over those symptoms for the rest of my life.
After giving the medication a solid 10-14 days, I couldn’t take it any longer. Since it wasn’t doing much for my pain anyways, I decided to stop and wean myself off the Gabapentin (as I was told to do). However, even though I slowly came off of it and the long list of side effects began to slow down, I had horrible withdrawal effects. Not only did my TC back and nerve pain go back to an 8, I was also hit hard with migraines. These were so bad at times that I was unable to stand up or even open my eyes. There was a day where I had to crawl to the bathroom with my eyes closed because my head hurt so bad. Definitely a low point in my life when you can’t even walk to the bathroom!
I had a minor bout with migraines a few years ago and found a medication that seriously worked like MAGIC… Midrin!!! Within 10-15 minutes of taking it, any headache or migraine slowly started to disappear completely. I was devastated when it was taken OFF the market! Thankfully, my migraines had gone away at that time so I didn’t have a use for it anyways. However, when the Gabapentin withdrawal migraines started, I decided to do a little research on those particular magic pills and much to my surprise I found out it was recently brought BACK into the market!!! I immediately emailed my primary care physician and asked for the prescription! Without any hesitation and even a well wish from her, my beloved MIDRIN was available and ready for me to pick up at Kaiser!!!!
I’m not sure if the ingredients changed, why it was taken off the market, how it was brought back, or anything else. All I know is that Midrin still works like a charm for my migraines! If taken right at the onset, pain that would have had me down for the count & raising the white flag would be close to GONE within 1/2 hour. I will continue calling Midrin magic! Migraine sufferers… Seriously, give it a try. Again, I don’t know if it will work for you, but it does wonders for me!!!! I now keep my prescription bottle with me at ALL times. It’s in my purse so if I’m home or out, it’s never too far away!
Upon deciding to taper and stop Gabapentin altogether, a fellow TC sufferer in a Facebook support group posted this link. For anyone who is on the fence about taking this medication, researching it, or new to taking it and fear for long term effects, please take a look at the comments posted HERE!!! Really really interesting experiences!
Alright, so I’m almost a month post Gabapentin (AKA the devil) now and for the most part I think all of the side effects and withdrawals are out of my system. I’m currently not taking ANY prescribed medication and for now, I have decided to stick with more natural pain relievers and treatment. Again, since nothing worked anyways, why bother shoving drugs down my throat that usually made me feel worse anyways? I’d rather spare my liver the trouble.
The combination I have going on with supplements and vitamins seems to be doing the trick and my pain has easily gone from a constant 24 hour 8 to a solid 4-6 on most days AND nights now. That’s pretty damn good if you ask me! I will take it!!!!
Here is my daily line up:
Prior to my TC diagnoses, I was already taking my Performance Multi ‘Energy’ Formula vitamin and heart health fish oil. I’m fairly certain that I get my daily nutrients strictly from food sources, but taking a multi just helps covers all of my bases.
Supplementing with fish oil is something I feel everyone should be doing. Since omega 3 fatty acids aren’t produced on its own in within the body, taking a supplement is necessary. It’s great for supporting healthy cholesterol levels, bone health, and insulin sensitivity, metabolism. More importantly for someone like myself with chronic pain, fish oil can help reduce inflammation and stress in the body.
And these are the things I added to my daily supplement regime:
Vitamin B Complex (I recently just switched to this brand)
Vitamin B (complex) helps to convert food to fuel, provides energy, helps create healthy new cells, works as an antioxidant, boosts good cholesterol, promotes healthy skin, regulates amino acids, and improves sleep/stress hormones. In addition to all of that, it has also been shown to help with inflammation and aid with nerve pain and repair. Since TC’s are a collection of fluid in nerves along your spine, any help I can get (even if not 100% without any doubt proven), I will try it! Since our bodies need vitamin B anyways, I figured it wouldn’t hurt to add it in each day.
“Natural Calm- Product Millions have experienced the stress relief and health benefits Natural Calm The Anti-Stress Drink can provide. Its natures way of restoring balance so you can find your inner calm and enjoy an improved level of health. Magnesium is one of the most important basic nutrients that power our bodies and it is required for more than 700 biochemical reactions. But since our bodies dont produce this mineral we need to replenish its supply every day. Due to nutrient-deficient soil and fast-paced lifestyles few of us (estimated at less than one in five) get sufficient magnesium in our diets. This means supplementation is needed and Natural Calm is the best-selling award-winning ionic magnesium that mixes easily in water to restore healthy magnesium levels quickly and effectively.”- Amazon
I have only tried the orange flavor which I like. I will probably try a different flavor when my bottle is done though! Lots of choices so I want to try them all!!! I take 1 tsp in the morning and 1 tsp right before bed. This is a product that also might be beneficial for those who have irregular bowel movements or suffer from constipation (especially due to medications).
This is something I added in a little over a month ago and will definitely continue indefinitely. I mainly started taking Turmeric because of countless articles I had seen surrounding it’s anti inflammatory benefits. Turmeric contains a compound called curcuminoids (specifically curcumin which is its main active ingredient). On a molecular level, curcumin has been shown to target the inflammatory pathway and help with chronic pain diseases. Since curcumin isn’t easily absorbed in the body on its own, black pepper (piperine) has been shown effective to help. What I like about this particular brand of Turmeric is it contains black pepper to help with absorption.
In addition to its inflammation benefits, turmeric is also said to increase antioxidants in the body, improve brain function, reduce the risk of brain diseases, lower risk of heart disease, reduce cancerous cells, and fight against depression. I have had ZERO negative effects from turmeric, so I will continue to take 3 of these daily (usually one in the morning, after lunch, and then before bed).
After I was initially diagnosed, a sweet friend of mine suggested I look into taking this (thank you Sara!). At the time, I wasn’t quite ready to dive into ‘alternative’ medicine/treatment, but upon doing more research and hearing other TC sufferers were taking Serrapeptase, I decided to give it a try myself. Along with a many other supposed benefits, it’s actually being used in Europe & Asia to help treat many pain/swelling/inflammatory conditions. Again, anything I can take that will help reduce the inflammation and related nerve pain caused by my cysts, I was at a point where I was ready to try it! If you read the reviews on Amazon for the product, you will be amazed! I’m a believer!!!
And last, but not least for supplements… my beloved PEScience products (30% OFF coupon below).
Clearly I have not been able to train at all these past 3 months, so the regular pre workout line up of Alphamine & High Volume have sadly been put on hold for now. However, along with the Select Protein that I use daily in almost all of my baking and protein packed snacks, I am still taking Amino IV’s every single day. BCAA’s (Amino IV’s) have been a part of my regular ‘diet’ for almost three years now. I use it solely to help preserve and maintain as much muscle as I can and it also helps me continue getting my gallon+ of H20 in each day! Drinking plain water gets so boring sometimes and the Amino IV’s just taste SO amazing! Makes it so easy to drink drink drink!!!
I’ve talked about Norcodrene many times and have also called it ‘magic’ on quite a few occasions. If I am EVER feeling a little blue, sluggish, tired, run down, or simply have no motivation to do anything at all, one Norcodrene can snap me out of it almost immediately! I feel so rejuvenated and energized. Not only that, it’s a GREAT appetite suppressant!!! Now that I’m not able to train or exercise at all, I also can’t eat like I want… remember, calories in VS calories out. I will NOT use my pain/symptoms as an excuse to gain a ton of weight. As soon as I realized that I couldn’t work out anymore, I immediately brought my calories down to maintenance. Initially, it was SO hard for my body to adjust to the drop in calories. Taking the Norcodrene helped a TON!!! I would take one in the morning when I felt hunger pangs coming on strong and after about 1/2 hour and a little more water, I was good to go for the rest of the day. I didn’t feel the need to overeat or snack in between meals! I LOVE Norcodrene!!!!
Last but not least, here are a few other things that have helped with my pain and symptoms…
HEAT HEAT HEAT
I don’t know if that I’m just cold all of the time and heat comforts me, but laying on a heat pad eases my back pain tremendously. I literally think about this thing anytime I have been upright and walking around for more than 15 minutes. I cannot wait to get back home and fire it up!
A word of caution though, I bought a cheaper CVS brand one when I was first diagnosed and it nearly caught on fire! Wires in the control melted right through the plastic!!! I’ve had this one now for 2 weeks and like it MUCH better! It’s large enough to span my entire back so even if I move or fidget, I’m still covered. Having it on the lowest two settings has given plenty of relief, but as we approach some cooler temps, it’s nice knowing that I can crank it up a bit higher if I need!
Another thing I love about this particular XL Sunbeam heat pad is that it has a separate cover you can throw in the washing machine! The cover is SO SO soft and plush. It’s extremely comfortable and easy to use.
I would go out on a limb and say this heat pad is probably my favorite pain reliever! Some TC sufferers prefer ice on their back, but personally that just numbed things momentarily and as soon as I’m ‘thawed’ out, I’m in pain again. I have found that the heat pad really soothes and relaxes my entire back!
Next item I want to share that I have been using now for almost 2 months is the Quell!
At the peak of this first flare up, I was desperate to try ANYTHING! My husband happened to find the Quell online when doing research for pain relief. What caught my eye was that it was something that was portable and I could have on me at all times whether I was home or away. Unlike the TENS unit (which I will talk about next), this is entirely wire free so I wouldn’t ever get tangled up or caught on anything. I would be able to move around freely without any issues. It’s also FDA cleared to wear during the day AND all night. I was eager to give it a try!!!
It’s small, lightweight, and the band that holds the unit in place is very stretchy, pliable, and comfortable. AND when I opened up the box to test it out, I barely needed the instructions to get going! Nothing to put together, no batteries to find and insert, no wires to attach. I was on my way to wearing it in less than 5 minutes!
HOW IT WORKS
- Quell stimulates sensory nerves
- Sensory nerves carry neural pulses to the brain
- Neural pulses trigger a natural response that blocks pain signals throughout your body
Set up is SO easy on this! It came fully charged (battery is built INTO the unit and provides up to 40 HOURS on a single charge). Place the unit in the pocket of the leg band, take the electrode out of its sealed package, remove the film, attach it to the unit using (simply two buttons), and you are ready to place it!
Not going to lie… initially I was scared because I had no idea what to expect. I wasn’t sure if it was going to be sharp electric shocks or what shenanigans I was in for. You have to calibrate it upon first use and since I’m such a wimp, I thought even that would be too strong for me! It had to get done though. I braced myself, took a few breaths, and away we go…
Moment of truth….
Yeah, I worried for NOTHING lol! I even hesitated pressing the button for a couple of minutes and tried to convince my husband to do it for me. Obviously that wouldn’t work though because the Quell needed MY personal level of “therapy intensity”. Calibration took less than a couple of minutes and I was well on my way to seeing how this worked.
Basically it feels just like the beginning stages of your foot/leg falling asleep. Little tingles running up and down your leg. Nothing major and after walking around a bit, you don’t even know its on! Each therapy cycle is around 45 minutes I think and then it stops for 45 minutes. That process is repeated until you turn the unit off completely and/or just take it off. The Quell even has an “accelerometer” that transitions between therapy intensities based on your activity… now thats SMART technology!
I put the Quell on every single day for at least 2 weeks and now I’m using it 5-6 days a week since my nerve pain has improved. In the morning when I get dressed, its just a part of my regular outfit! The Quell is small enough to wear under looser fitting jeans/pants, but since its still fairly warm here in San Diego my legs have been out anyways. Although the product is promoted for nighttime/sleep therapy as well, I didn’t feel like I needed much since my pain is so much better when I lay down anyways. When it was time to shower and get PJ’s on, I just turn the unit off, replace the electrode film/cover, and place it all in the case it came with. If I haven’t put it on first thing in the morning and will be away from the house, I just trow the case/unit in my purse and I can put it on anywhere with no issues! LOVE how portable and easy it is!!!
And last but not least… my TENS unit!
I’ve talked about this before, but it was the FIRST thing I bought the week I was diagnosed and STILL something I use regularly! In the morning, you can usually find me on my heat pad, but if I’m out at all attempting to run errands, at my daughters volleyball practice, at doctors appointments, or eating out… this thing is attached to me! I don’t like how tangled everything can get and I often find myself ‘catching’ on things, but it does offer quite a bit of relief while I have it on a cycle. Its nice to change the position of the pads depending on where I have the most pain and it is still small enough to either attach to my pants and hide under my shirt OR I can also throw it in my purse if I’m walking around. I have no idea if it necessarily improves pain, but it definitely distracts your brain with the pulses!
And there you have it… my pain relief in a BIG nutshell!!! I’m sure I will probably have other things to add as time goes on and things progress, but for now all of this seems to be working and I’m feeling SO much better than I was. While I’m still not training or exercising (YET), I’m thankful for the ability to attend my daughters volleyball practices, do light shopping, and eat out with my family every now and then. I’m no where close to what I was before all this, BUT I’m slowly adjusting to a new normal AND functioning the best I have in 3 months!!! Progress is ALL I can ask for!!!!