Tuesday, September 27, 2016

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome - Link Post

Short Answer? It was exhausting but totally worth it. It helped knock my constant level 6 pain down to 0-2 for 2-3 months before I decided to go in for a 'recharge' 4 months later.
*WARNING* I REALLY do believe that this exhaustion could create problems for those just recently recovering from GBS. Looking back, this Ketamine treatment is not something I would have agreed to until I was around 4 years out because the exhaustion was so intense. It see it as a great tool for when you feel your progress has plateaued after hitting the 3 year mark.














Monday, September 26, 2016

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 13

So right now it is near the end of September and I am still going strong. I do notice the pain creeping back in and currently have another Ketamine Therapy Treatment scheduled for October 4th. I had kind of been hoping to have had one of the 'Top Off' sessions done before the GBS/CIDP Symposium in San Antonio but timing just didn't work out. There was a chance to have gotten one on September 20th but I worried about the exhaustion knocking me down and I wanted to be feeling my best when we travel down for the Symposium.
I know this is a long document but I hope those who have a chance to read it have a better understanding of what they are in for if they consider this route for treatment.
The Ketamine Treatment Therapy helped give me more hours and more energy to my day and tremendously dropped my pain. I hope that many more GBS patients have a chance to consider it for tackling residual pain once they are a few years out.
I say a few years out because I honestly do not think I would have been able or willing to continue the treatment with the amount of exhaustion that slammed into me. Once I was 4 years out seemed to be where it felt like I had plateaued a bit in my recovery and I think this could have helped me get back on track to a better life.

I am currently training for a half-marathon in San Antonio to be held December 4th.
Looking forward to doing many more!

This will be my 4th Half-Marathon and during the training I can already notice a big difference in how I am feeling compared to the other three I trained up for. I have been training outside, in all sorts of weather and heat with natural inclines whereas prior to the ketamine treatment I did all of my training in air conditioning on a gym treadmill with very little incline. On top of that I am eat breakfast, working, eating lunch, exercising, cooking dinner and sometimes going out to socialize in the evenings. This has been a HUGE improvement on my quality of life.

If you give Ketamine Therapy Treatment a try, please don't hesitate to reach out to me!

I am more than happy to talk more about it and I hope more people can benefit from it like I have.

Lisa Turner, Austin, TX

Please use "GBS" in the subject line of e-mails.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 12

Over the next week I started being able to move around a bit more and slowly my energy was coming back. For that first week though, I was basically feeling like I had been set back to maybe 2 years after onset and it was pretty depressing. However, every day I could see and feel improvement to getting back to my normal.
It was a bit frustrating the second week. I noticed that my constant pain had started to drop and I was feeling better, but my exhaustion still kept me in bed or on the couch a lot.
Finally by the third week out my energy felt like it was back to where it was prior to the Ketamine and the pain was only around a level 2.
But here was a new problem that cropped up for me:  I was enjoying the lack of pain but I still had very little natural endurance. Prior to the treatment I had a warning system figured out with my body. If I was overdoing it I would get a cold sweat or a low temp and I would know to back off or stop activity for the day. I no longer had this and there were quite a few times where I out shopping and felt like someone pulled the rug out from under me. It took me a while to re-figure out when I needed to stop for the day.

Four weeks out, I felt the best I had in 7 years and it honestly shocked me and I continued to improve. Most days were full of 0-2 pain levels with an occasional 4-6 day if I overdid it the day before. By this point I still was not willing to consider ever getting a Ketamine Treatment again though. I wanted this to benefit me at least 3 months before I would consider it again.
In the evenings I still take two 5mg hydrocodone, one 350mg Soma, and one 10mg Amitriptyline. That, plus the results from the Ketamine Therapy, has gotten me into an awesome balance and I have days where I almost feel as good as I was before GBS and I am actually living life again.
I spent June and July as a bit of a honeymoon for myself for finally feeling alive. I was able to pull work hours, cook and do chores and STILL have energy to go out and do things with friends in the evenings. I was even able to do road trips from Austin to Houston for work and still had energy to spend time with family or go out to dinner after work. The impact that the constant pain was having on me was a bit startling for me to see once it was gone.
In August I began training for a half-marathon I plan to walk/jog in December 2016. I have done a few prior to this (post-GBS) but the training I have been doing has been much better than before. I have been able to be training outdoors with all the natural heat and inclines where before I was always having to train in a gym with AC at no incline. That is a HUGE improvement. I am working, cooking, doing chores, exercising and going out to evening events, sometimes all in the same day! I haven't been able to do that since before May 2009.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 11

Finally. The last day. I just wanted this entire ordeal over and to have a chance to crash hard and get over the exhaustion. By this point I was estimating the number of steps between the bed to the shower, from the shower to my clothes, from my clothes to the car downstairs, from the car to elevator, from the elevator to the medical chair. I still came in at a pain level of 6 and left the same. This time I didn't bother with the Kindle other than starting my music off right away and closing my eyes. There was a new nurse on duty this time around and I asked for an extra dose of the Versed. I still had the same dreaded spiraling sensation of just drowning in doubt and feeling like a fake. At this point, attempting to ever do a Ketamine Treatment again was a solid “NO” from me. But I tried to refrain from posting much about it online because I knew that the exhaustion could be masking any benefits and I really needed to wait until the exhaustion passed before I decided how I felt. If it meant going through this hell again, it would have to be a year before I ever came near Ketamine again. (I have since changed my mind on that.)
It was a pretty blurry memory since this was the highest dose and I think the Versed kicked in a bit better.
It just makes me laugh to myself when the Ketamine kicks in and I start in on feeling like a liar and a fake. 'My pain is all just a big lie and I've lied to all my family, friends and coworkers. Right now I feel AMAAAAZING.' And guilty because I don't hurt. Then of course I get unhooked and it all comes slamming back into me like a brick wall. By the last couple treatments I learned to keep my eyes shut the majority of the time and that kept the headache down a LOT.
Once my husband picked me up, I again needed help getting into the car but I wanted to celebrate the last treatment and we stopped for a celebratory smoothie. Once home I was helped onto to the cot and I passed out until around 11pm and hauled myself up to the real bed.

A few days later - The exhaustion was still bugging me and washing my hair was using too much energy so I went and chopped it all off. :x

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 10

I was so wrong. Again my feet were yanked out from under me and this treatment felt like slamming into a physical and emotional wall. Every piece of me just wanted to give up and stop. For this round, all the chairs were taken so I got a medical bed instead so that added a bit of strain to sitting more upright and not having the arms of the chair to support my upper body.
The luck finally ran out on being able to use my left hand to hook up the IV. They tried both hands for a few turns and on the second try they got my right hand.
I went in around a 6 pain level and left at 6. It took about 15-20 minutes before the Ketamine slammed into me and just pushed me off a cliff.
I probably spent 5 minutes fumbling with my Kindle tablet before I was finally able to escape the game I was playing and just turn the tablet off. I had the music playing prior so at least I didn't have to struggle with that. I think I received extra Versed this session but I vaguely remember the nurse checking on me to give me the extra shot to the IV. I spent the next 3 hours just spiraling in my thoughts: it all being a waste, my pain was just fake, I felt like an imposter, I was just making up all the pain cause at that moment I felt fantastic, this was a waste of my time, the doctors' time, my boss' time, a waste of money for the treatment and a waste of money for every day I was missing work to give this a shot. I was a waste of time and money to my husband; we had been married for like 6 months before I got hit with GBS and all of this was just a culmination of complete failure. I basically just circled and swirled in those thoughts for about 3 hours until I opened my eyes to them unhooking me. This isn't worth it; I can't do this; fuck Ketamine: that was my mantra blasting itself in my mind as I was wheeled out from the therapy and down to my husband's car. We skipped the smoothie and went straight home. My husband had to help me through the front door again and to my cot. Every few steps I had to stop and catch my breath. I felt exhausted and broken; with only one more treatment left it was pretty easy to just say no more, I'm done, I'm out. After all, I felt no different than I did from the start of all of this and what difference could one of the 4 hour treatments make? I could just call it quits and move on to the next option. I broke down crying a bit and my husband hugged me. He chuckled and said "Maximum effort~" and though cheesy, it was a moment where I was able to  kind of swallow the doubt and turn around and think just one more day, one more treatment and then all I have to do it get past the exhaustion and wait to see if this whole ordeal would give me any benefit or improvement.
I crashed on the cot and dragged myself up to bed around 11pm that night.
"Maximum effort" was a catch phrase Deadpool, one of my favorite characters, used in a movie recently. Cheesy, but the sentiment was true... :x <3 nbsp="" p="">My mantra of the day was still: "Never doing this again. Fuck Ketamine."

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 9

I was expecting to get knocked back on my butt with the increase of the Ketamine mixture. Luckily, it felt like my body was kind of growing used to what to expect and how to process it all. Maybe I was finally past the hardest part. I went in at a pain level of 5 and left at 5. I believe it was all the bed rest that had me feeling so much better when it came to dealing with the Ketamine and how I needed to deal with it all. (Eyes closed the majority of the time, I asked for additional Versed this time, had pillows to keep my arms propped up a bit more to reduce the stress on my shoulders since I would be sitting up for 4 hours, was able to request the reclining chair, requested a blanket before it all started so I would stay warm, and overall went in feeling a bit better about the process.) They continued using my left hand for the IV. I still had the mental trip of feeling like I was falling down a rabbit hole filled with thoughts of uselessness, failure, exhaustion, wasting money and time, and overall anxiety about the ordeal, but I was expecting that since it was becoming the regular experience. I kind of feel jealous about those that get to have all the enjoyable hallucinations and happy trips... I guess I am just a high strung worrier and that gets amplified tenfold. By the time it came to transfer to the wheelchair, I was able to transfer pretty easily; transferring to the car was not too hard. We stopped for a smoothie again since it helped sober me up a bit faster last time. Once we got home I was actually able to stumble and lean my way to the front door and to my cot. I definitely was doing a bit better this time. This spoke well for the next session. My mantra became 'only 2 more days' whenever I had an rough moment that day. My husband chimed in a few helpful reminders when the going got tough at times. I was able to make my way up the stairs to the real bed after a few hours of resting and was even able to grab a shower before heading to bed for the rest of the day.

Curtains and the infusion bag were pretty much my entire view for the duration of the treatments aside from glancing at my tablet to operate it the best I could. I  could not read what the bag said which is why I took a picture of it to look at later. I had physical pain trying to force my eyes to look up.

The weekend rest had me feeling much better and recharged. 
Just in time to knock me back on my butt... Round 4.
The picture below accurately shows how my vision was for me. 

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 8

I was dragging for this appointment but made it in. Pain wise I went in around a 6. This time when I was called back, both hospital beds were taken and I was given a chair that would recline. I wish I had known about this before! It was so much easier to sit/lounge with the arm rests! I made a mental note to request this moving forward. Before the Ketamine started I asked when they figured I would be done and was able to text my husband details prior to all their questions while I was semi-sober. They continued using my left hand for the IV.
While the switch to the chair was a nice change, the cloth walls were a bit closer around me which kind of made me feel a bit claustrophobic (which normally isn't an issue...) and there was a sliver of a window pane visible from one of corners. Again, normally this would never even bother me; but when the Ketamine treatment started to kick in, the light sensitivity amped up on me and I fought to keep my eye closed the majority of the time. I wondered if it would be weird to bring in one of those sleeping masks with me for the next treatment... :x
Whatever solid ground I thought I was on when it came to getting a handle on these Ketamine treatments was quickly swept out from under me. This time the treatment hit me harder and faster than before and I was rather out of it when it came time to unhook and roll out to see my husband. It took me a few tries to transfer from the chair to the wheelchair to be rolled out and I needed a bit more help getting into the car this round.
I did still want to celebrate it all being half over so we stopped for a smoothie and a bagel before heading home. Sucking down the smoothie on the way home also seemed to help clear my head a bit by the time we got home. I still needed help from my husband to get through the door and to my cot without risking a fall, but since I kept my eyes closed the majority of the time, the headache was much less; mainly it was the exhaustion taking a toll on me. I left the facility around a 5-6 pain though. At this point I was doubting I would be seeing any benefit from these treatments, but I refused to let myself back out from them half way if there was even a slim chance of it dropping my constant pain.
Friday and Saturday were pretty much full bed rest days. Lots of water, simple foods and solid time being spent flat on my back, or at least my side. I got quite a bit of Netflix series binged though with the exhaustion, my attention and concentration were a bit shot. I would guess I had maybe 6 hours each day of being awake. 3 hours in the afternoon and 3 hours in the evening after crashing a few hours.
By Sunday night I was feeling a bit cooped up and restless so at least some of the exhaustion was going away. My pain however was just hovering in that 6 range. This all felt like a waste of time and money. I told my husband, 'Even if I beg, don't let me cut this short. I need to give the full treatment a try before I throw in the towel and look for the next option.'
Monday I was well enough to sit up and work at the computer a little bit and watch some Netflix from the couch while sitting up. We also went out and grabbed a bite to eat for dinner. It felt like I was finally coming up for air from the exhaustion... Just in time for the next round of treatment.

Round 3! Rawr!

The cats liked to keep me company on the cot...

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 7

This was another early session and going in I felt fairly OK. I didn't feel any benefit from the first treatment yet and the exhaustion was a bit heavy still. I paid for the single session and when I was called back, I was seated on the hospital bed again; they were able to draw blood from the same hand as before. I wore slip on shoes this time since tying my shoes at the end was a bit hard to do the first time. Slip-Ons for the win! My starting pain level was 6. This time the ketamine kicked in a little faster and harder. Fumbling with my Kindle was a little difficult to manage but I was able to swap between the audio book and the music after about 30 minutes. This time I decided to try keeping my eyes shut for the majority of it all and this greatly helped to reduce the headache. It was still around, the light/sound sensitivity was still there, but it wasn't as piercing as before. Around 30-45 minutes into the treatment they added a shot of the Versed.
So what did the Ketamine feel like? For me it was just a constant sensation of falling and kind of spiraling in self doubt. So personally I really disliked the entire sensation which basically felt like building dread that I couldn't get out of the thought. But the fact that this could help long term makes it worth sitting through; I had to keep telling myself that.
When they unhooked me, they started the questions about my ride, where they were, when they would pick me up and I think I was out of it more than last time, but I knew what the questions would be and was able to text my husband myself about coming to get me. I transferred to a wheelchair again; this time it wasn't until my husband showed up, so I was able to take the wheelchair down to my car. The nausea and headache was nothing near where it had been but overall the regular constant pain was still around a 5 when I left. My husband had to help me a bit when it came to getting into the house and to my cot but overall it kind of felt like my body was feeling better with the Ketamine. I was still exhausted but this second round made it a little easier to handle. By the time my husband had come home I had munched on water, saltines and graham crackers and was able to make my way upstairs without too much trouble other than just general exhaustion. The most annoying aspect at this point once I was home was having the strength to keep my arms up long enough to wash my hair.
I was anxious to see how I would be feeling for the next day since this would be the first back to back treatment.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 6

When I came to the sign-in desk, the nurse actually mentioned that I could pay by treatment in case I had a huge adverse reaction to the treatment, rather than paying all up front and then having to deal with a hassle of refunding if things went badly.
I filled out general paperwork and didn't have to wait long until a nurse brought me back to the infusion room. Two nurses work the room; there was room for two recliner chairs and two hospital beds. During the therapy treatments, they would be watching vitals, be watching for anxiety to tackle with Versed, and overall help patients as needed if they needed to move around or go to the bathroom.
I was seated at the hospital bed. I had worn tennis shoes and took those off to get comfy. I had brought my own mini foam pillow to help get comfy with my neck and skull pain. I also had my Amazon Kindle and my phone with me. It was kind of hard to prop myself up without it all feeling exhausting from being in a sitting up position.
The nurse then set up an IV to my hand and we got rolling.
They asked me what my current pain level was and I said 6.
For the first 30 minutes I was pretty clear headed and was listening to an audio book of some mini speeches by Seth Godin. I wasn't sure if I would remember anything, so I wanted something short and sweet that I wouldn't mind listening to again if I had any of the amnesia side effects. Around 40 minutes into the treatment, the nurse gave me another injection to the IV, this time it was Versed, a medication to help prevent anxiety. By now my vision had started to slide. They mentioned that hallucinations are a common side effect of Ketamine and that it can also cause dissociation and to prevent that, they say to keep your eyes open. I should have ignored that; the more my vision slid and I tried to focus on things, the worse a pounding and very painful headache increased. By an hour into treatment my coordination was greatly impeded and I had issues even trying to navigate my Kindle from the audio book to getting my music playlist started. From there it was a waiting game of listening to music and waiting for the clock to roll around while trying to keep my eyes open and just put up with the ever increasing headache. Light had begun to get very painful and the ability to focus my eyes on anything was out the window. To pass the time I evidently decided drunk/stoned texting my husband would be a good idea (at least until I couldn't type words...) Then I just sat there listening to music and watching the curtain separator flutter from the AC while my thoughts just spiraled with doubt and frustration.
By hour three I was very disoriented and one of the nurses started asking me about my ride home. Who it would be, where they were, their phone number, etc. This was all information I listed at the front desk and I was so foggy I don't think I was able to convey much information to them. The front desk then called my husband to pick me up and I texted him as well to let him know I would be wrapped up in about 30 minutes.
After those 30 minutes, they unhooked me and pretty quickly had me transferred to a wheelchair. (I got to remember how to do a three point transfer from bed to chair. Didn't think I would be using that anytime soon...) There is NO WAY I could have walked out from that room. (And that honestly made me feel a bit ... weak? annoyed? frustrated? I can't think of the right word for it... undignified, indignant, since I had been seeing other patients getting up and walking out from their treatments with no issues.) Before leaving they asked my pain level and I said 5. I think I said 5 more-so because I refused to allow myself to have gone though that hellish 3.5 hours without some kind of reward. Honestly I still felt loopy but with a raging headache and overall probably still a 6 on the scale but damn it, I was going to force myself to have less pain. (...cause that *totally* works... Please note my extreme sarcasm.)
Husband got caught in a little bit of traffic so I was wheeled into the main waiting room, still quite stoned out of my senses. They needed the wheelchair for a moment so I had to transfer from the wheelchair to the chair. At this point I felt exhausted, nauseous and had a headache from hell and light and sound sensitivity was through the roof. I started to sober up a bit more before my husband arrived and I actually can't remember if we took the elevator down to the car while I was leaning on him or if the wheelchair came back and we rolled down that time. My light sensitivity was near an 8 or 9 at this point.
I was still pretty out of it for the ride home but I also felt like I was going to vomit so we kept a bag close at hand. We made it home without incident and he helped me out of the car, helped me walk from the car to the cot we had set up downstairs in our living room so I would not have to worry about stairs. Since this was the first round of treatment he decided to stay with me and work from home in case I needed help. I think I promptly passed out after some water, Advil, graham crackers and saltines. I crashed on the cot until around 10pm and then dragged myself upstairs to shower and go back to bed. I used Tuesday for complete bed rest and only got out for bathroom and a shower. I was able to do some work from my laptop in bed. My vision was also still on the blurry side and the headache continued to pound. I gave up trying to cut down on the opiates and figured I would tackle one battle at a time and these next two weeks the battle was Ketamine Therapy. I bumped back up to my original dosage of 10mg x 3 through the evening and night. My fatigue and exhaustion was already one hell, at least I was able to cut the pain down a bit. Tuesday night the headache from hell had finally backed down. I still felt nauseous and exhausted.

This was my go bag. It had a place for: sunglasses, a small pillow, a blanket, phone, tablet and headphones. Easy to operate with a flip top and Velcro.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 5


5/23 Monday - Treatment 1 Cost             W/Insurance
IV Includes: $825.16 $169.45
Lidocaine HCL 200mg
Midazolam hydrochloride (Versed) 2mg
Magnesium Sulfate 500mg
Ketamine 167mg

5/25 Wednesday - Treatment 2 Cost             W/Insurance
IV Includes: $825.16 $169.45
Lidocaine HCL 200mg
Midazolam hydrochloride (Versed) 2mg
Magnesium Sulfate 500mg
Ketamine 209mg

5/26 Thursday - Treatment 3 Cost             W/Insurance
IV Includes: $912.30 $194.52
Lidocaine HCL 200mg
Midazolam hydrochloride (Versed) 4mg
Magnesium Sulfate 500mg
Ketamine 251mg

5/31 Tuesday - Treatment 4 Cost             W/Insurance
IV Includes: $912.30 $194.52
Lidocaine HCL 200mg
Midazolam hydrochloride (Versed) 4mg
Magnesium Sulfate 500mg
Ketamine 293mg

6/1 Wednesday - Treatment 5 Cost             W/Insurance
IV Includes: $912.30 $194.21
Lidocaine HCL 200mg
Midazolam hydrochloride (Versed) 4mg
Magnesium Sulfate 500mg
Ketamine 335mg

6/2 Thursday - Treatment 6 Cost             W/Insurance
IV Includes: $912.30 $194.21
Lidocaine HCL 200mg
Midazolam hydrochloride (Versed) 4mg
Magnesium Sulfate 500mg
Ketamine 376mg

10/4 Tuesday - Scheduled for a single session.        Unknown Total Cost
IV Amounts Unknown at this time.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 4

This is a constant pain that gradually amps up until I go in for a nerve block. Usually it sits at a tolerable 4-6 until it builds to a 8-9 where I am begging for the nerve block. The pain would start at the base of my skull and radiate out like lightning bolts up the back of my skull, through and around my ears or down my neck, into my shoulders and on the worst days down through my arms and in my hands upward from the back of my skull to my cheeks and jaw line. The more tired and exhausted I was, the tighter my muscles would get and the harder my muscles would be clenching around damaged nerves. While this was going on I would get light and sound sensitive. This resulted in a majority of my time being spent in a cold, dark, quiet bedroom just waiting until I was rested enough for the pain to be quiet so I could at least do a chore or work an hour from home that day. Heat makes it worse (like 90° F) and cold makes it worse (like 35° F.) Once we got all of that established with the neurologist they reclassified it as Occipital Neuralgia. We then treated it with a combination of Soma (a muscle relaxer) and Hydrocodone (a pain reliever); this helped delay the time between needing nerve blocks. The muscle relaxer helps keep my muscles from clamping down on the nerves at night and the pain reliever helps me get to sleep through the constant pain. This took about 2 years before we finally found something to give me relief from the 'headaches.' Massage can help delay the building pain but if I wait too long before trying one, it could easily aggravate it. I tried acupuncture for about 6 months but did not see any change or relief from the pain. I would like a chance to try chiropractor at some point soon to see if that would offer any relief.

  • My nerve damage left me with what is now diagnosed as occipital neuralgia. Normally I go in for nerve blocks every 3-6 months. I get 2 shots (left and right) into the base of my skull in the bundles of nerves there.
  • My vision was affected when I was hit by GBS and even now when I overdo it, my vision will blur when my exhaustion is high.
  • When I get too exhausted, I get nauseated and/or vomit and run a low temp or have a cold sweat hit me until I stop and get solid rest.
  • Prior to the Ketamine Therapy: I would get what I would call a second wind warning. I would get hit with a few minutes of a sweat and body chill. I would know that I either need to stop or I was going to be a bit worn out the next day. If this happened a second time, usually about 1-2 hours later, and I ignored it and kept pushing through it, then the next day I would be needing bed rest and minimal activity.
  • I still get neuropathy in my legs where they burn and itch and I can scratch them raw in my sleep. Generally a shower will help override the sensation and make the buzzy/needling/crawling sensation stop. 

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 3

MY GBS ONSET/YEAR 1 - General Short Background For My Case:
In early May of 2009 a stomach bug hit me. I recovered and hopped on a plane to Hawaii for a vacation. I was 26 years old.
I had slow onset with various symptoms trickling in over the last few days we were on our one week trip.
Prior to the trip I had been having back pain, I happily noted on vacation that when I bent over to spit while brushing my teeth I suddenly had no back pain!
Then my mouth started to feel numb; I explained it away as having a reaction to different foods/toothpaste. Plus, we had just had snow cones and my mouth normally goes pretty numb. This time it lingered.
While out swimming in the ocean I smacked my foot into a bed of coral and broke a toe. Couldn't feel any pain to it and figured it was a bad bruise. I also cut swimming short because it was pretty exhausting fighting the waves to stay afloat. Figured I was out of shape.
Went for a hike on Diamond Head and had the hardest time with the stairs. I figured maybe change in altitude was messing with me.
Got a bad sunburn; when we got back home and I went to shower, I had a super hard time washing my upper body and shoulders. I thought the sunburn had just exhausted me and my arms were tired from the sun/swim.
When it came time to pack the car up, I could barely lift my luggage and had to have my husband help. Again, I figured it was all just normal exhaustion from the trip.
Finally boarded the plane home and during the last hour of the flight, I started to feel a bit claustrophobic and felt like I just needed to get up and move around. Stood up and stumbled down the aisle (and probably looked drunk.) Figured sitting for 9 hours probably just put my legs to sleep.
Once landing in Houston, my husband carried my bags; once we met up with my dad, he helped too. We decided to stay an extra day in Houston before heading home because I was so tired. I figured it was just jetlag or something. Had a horrible time climbing the stairs at my parent's house.
Finally made it home to Austin and had already scheduled to meet with a physical therapist about my back pain for the next day.
That night, I felt like I was having an asthma attack; we had been away from our cats for a while and I figured my allergies might have triggered one from not being around them much. I had a weight in my chest I just couldn't shake, so I got up and stumbled around a bit to try and get more air in my lungs while standing around in the living room.
The next morning I went in to the physical therapist. When he saw my gait and inability to balance, he sent me across the street to my general doctor. General doctor was out, so I met with one I hadn't met before, and she scheduled me for a CT scan. She told me it could be cancer. Promptly made it outside to call my boss and let him know I might be out for a few days before breaking down. Started feeling a little weird but couldn't explain the feeling. I drove home to wait for my CT scan. Along the way I prayed that my legs would hold out until I got home. It was a scary drive and I shouldn't have been behind the wheel at that point. Waited at home for the CT scan and called my husband to drive me. When we got out in the parking lot, I could stumble about 8 steps before I had to stop, rest and catch my breath.
Went through the scan and husband helped me undress and dress. At some point I lost a sock... They told me I would receive results in 24 hours.
We went home, I rested, and before bed, my husband had to help me shower because I was just so tired. It was hard to lift my legs to get into the garden tub to shower.
That night I felt like I was having an asthma attack again and when I went to get out of bed, I hit the ground. I yelled out to my husband and he helped me back up to the bed, and we decided to head to the ER. He helped me get dressed and helped me walk to the car. Once I was standing I could kind of shuffle along if I could hang on him. Once at the ER, he was able to help me shuffle to a column outside the hospital and then ran inside and got me a wheelchair. Once admitted they got me on a breathing treatment for my 'asthma attack' and start questioning about medical history and such. By this time I texted my parents a general run down of what was going on. My mom's friend, who used to be a nurse, was the first to tell me to ask the doctors about Guillain Barre Syndrome. Before we had a chance to ask, a nurse returned with the same idea. The stomach bug from two weeks prior was the clue. I then had a spinal tap and the elevated protein count confirmed for GBS.
I was then admitted to the hospital and my condition continued to decline over the next few days. I had issues with temperature control, my right side would be flushed and be painfully hypersensitive and burning up while my left side remained normal. My ability to move my legs at all was soon lost and swallowing became difficult. While my hands and fingers did go numb, I could still hold a pen for the most part and scribble notes. I soon lost the ability to move my arms. My talking was slurred and I was often breathless. When breathing became too hard, I was then put on a respirator. By that point, I stayed pretty drugged up until the respirator was removed a few days later. At my lowest point, I was pretty much paralyzed from the neck down with blurred vision. I was then using glasses and noticed that my vision was much more blurry and sometimes had double vision. I then began small amounts of physical therapy. Throughout my stay, I got to see a lot of medical students; they would come in and question me about how my symptoms started and when/how I was diagnosed. During my hospital stay I told all my friends and family to not take any photos because I wanted to forget this entire ordeal as soon as possible. Now I kick myself about that because it would be nice to have a concrete image of how far I have come rather than vague memories.
June 1st, I was transferred to a neuro-rehab. I then developed a constant piercing headache that Percocet would not even come close to fixing. My neurologist said the next step was either morphine or a nerve block. I opted for the nerve block. After getting it on both sides and having a Percocet soon after, it knocked me out hard and suddenly it felt like a wall had been torn down and the Percocet was doing its job.
I think I stayed there for around one month. Recovery was slow until I had a chance to get moving in the pool; then it became a lot easier to start climbing my way back up. I left the rehab using Neurotin and Butalbitol.
I then continued Out-Patient Therapy from July-September.
I joined Gold's Gym and got a personal trainer and continued training through November where I was able to participate in the Houston Turkey Trot for Thanksgiving. I then began training for a half-marathon to walk/jog with my sister.
The headache persisted and over two years we attempted to deal with it as a migraine. Some medicines did nothing. Topomax let me experience word loss as a side-effect and gave no benefit, and eventually we gave Cymbalta a shot to tackle both the headaches and overall body neuropathy (35mg if I remember right.) The side effects were hellacious for the first two months and then evened out; I stayed on that for 3 years. Weaning off it was again horrible with nightmares and other side effects, but once off it, I felt the same, so it was time to be off it. However, the headaches were never really helped much with Cymbalta (knocked the constant level 6 down to a 4 most of the time but even then once the pain started to increase it would still rack up to a 6-8), and we were still trying to figure out a way to tackle them. Nerve blocks given once every three months were still helpful, but that didn't help with the daily mounting pain.

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 2


  • I was/am still curious if IVIG treatment would be something beneficial to a GBS patient after they are 7 years out from the initial onset. The challenge here is that it would be VERY expensive and insurance may not cover it.
  • It felt like I was just swapping one drug for another. If I was going to try that, I would be considering other routes like medical marijuana and CBD oil. My goals were to find long term solutions and not band-aids that would just cover up my symptoms.
  • One of the main effects of Ketamine is paralysis. HOWEVER, and this is a HUGE difference to GBS patients, it is NOT TRUE PARALYSIS. You feel paralyzed but throughout the process, if you need to move, you can, albeit you will be moving like you are drunk. This is a big thing to me. GBS peeps already did the paralysis song and dance. We are so over that. It is a feeling of paralysis, not true paralysis. I had several panic attacks about this and it is a core reason why I delayed scheduling the treatment.
  • I had been warned by my doctors that since I had GBS, anesthesia can cause a toll on my body and recovery as it is processed through my system. When a healthy person receives anesthesia they might feel like they ran a marathon for the next day. GBS peeps might be looking at having it hit them 2-5 times harder when it comes to the fatigue and  exhaustion during recovery. (This came up when I had my gall bladder removed a few years back.)
  • This was a lot of money for something I had never heard ANYONE in the GBS/CIDP community consider trying or having tried it.
  • Finding out that this was going to be a 6 session treatment over the course of two weeks for around $1,080~ total was physically and financially intimidating. My doctor did not mention this was to be 6 sessions. When we talked, it sounded like it was a one-shot treatment. This curve ball was pretty panic inducing when I called the center to set up my treatment date and that turned into dates. I had prepared myself to say yes to a single four hour treatment, not 6 treatments for a total of 24 hours of paralysis! At that point, I was still under the impression I was going to be fully paralyzed and fully conscious throughout the treatment.
  • It wasn't just about the money for the treatment but the money that I would then not be making as I took nearly 3 solid weeks off from work. (I still worked a few hours here and there as I was able, but nothing near my normal hours I fought so hard to train up to.)
  • This could all be a bust and not even put a dent in my pain.
  • I have heard of extreme exhaustion triggering a relapse of GBS. After 7 years, did I really want to risk relapse for something we didn't even know would work? And that is more rumor/fear but that fear still lingers.
  • I remember how I felt when I had morphine in the hospital during my initial onset of GBS. It felt fantastic and held nothing beneficial for me and I never wanted that feeling of artificial happiness again. It felt great but how it made me feel mentally turns my stomach.
  • Ketamine is known to amplify your emotions. Go in calm, and you ride a steady wave of calm. Go in anxious and the anxiety just spirals. If you are a high anxiety person, they can help calm you down with Versed, given in intervals throughout your treatment.
  • If I started to have a panic attack and I was truly paralyzed, how was I going to be able to ask for help from a nurse? I've been trapped in my body before with no way to communicate, I'm not doing that again. (All I can think of is when the nurse gave me Darvocet and then left the room. I was pretty well paralyzed at that point and couldn't reach a call button when I was about to vomit. I couldn't even yell for help. Once I started, I couldn't do anything but lean my head to the side as I started to choke on it while fighting to try and breathe. A few minutes later a doctor walking in the hall spotted me and called for nurses to help me as he cleared my airway.)
  • There was not much solid material out there relating to using Ketamine as a treatment for nerve pain like this. It is relatively new and basically the only big source of information I could find was a video on YouTube by Discovery Channel about illegal Ketamine Culture. So I got to learn all about how people abuse it (aside from one snippet of a video from The Doctors about it being used for depression.) It was nearly impossible to dig up any videos about its use for nerve damage pain management. 

Ketamine Therapy for Residual Nerve Damage via Guillain Barre Syndrome Part 1

Short Answer? It was exhausting but totally worth it. It helped knock my constant level 6 pain down to 0-2 for 2-3 months before I decided to go in for a 'recharge' 4 months later.
*WARNING* I REALLY do believe that this exhaustion could create problems for those just recently recovering from GBS. Looking back, this Ketamine treatment is not something I would have agreed to until I was around 4 years out because the exhaustion was so intense. It see it as a great tool for when you feel your progress has plateaued after hitting the 3 year mark.

As of July 1st 2016, I have had more energy to handle work, exercise and my social life than I have in 7 years since getting hit by GBS in May 2009. I was extremely skeptical going in for the Ketamine Therapy; after every treatment I felt sick to my stomach, had horrible headaches, blurred vision, extreme fatigue and all I could think is, “This isn't worth it." (I often spent the rest of the day waiting for the pain/exhaustion to pass or for me to pass out.)
It took 3 weeks out of my life; I was pretty much couch/bed/cot bound but now I'm willing to accept the validity of the treatment as something to consider as a viable option for further pain treatment. At this point, I think I may be the only person to have tried using Ketamine as a treatment for the residuals of GBS.
Prior to the Ketamine Therapy I was weaning myself down on my evening opiates. I had gone from a total of 10 mg x 3 through the evening, down to something around 2.5 mg x 1 before the pain and exhaustion from the Ketamine Therapy bounced me back to my 10 mg x 3 in the evenings.
During this stair-step down, I was in a lot of pain, trying to suck it up and deal with it between Advil and whatever would knock me out for the night. This was easily affecting my daily life; I was more tired than usual, my concentration shot, my temper cut short because I was juggling the pain all day, and overall my work/life balance was crap.
I went in for the Ketamine Therapy the week of May 23rd. Over the course of 2 weeks, I had six ~3.5 hour sessions to help tackle the neuropathic pain left over from GBS in the form of occipital neuralgia. (This treatment would potentially offer relief for my additional varying episodes of neuropathy in my legs, face and shoulders.)
Once the exhaustion from the treatments passed I gradually began to feel the pain dropping until one day, about 3 weeks out, I realized I had no pain that day. Until around mid September the 0-2 days have been pretty consistent with a few 4-6 days sprinkled in.
I go in for a 'top off' session on October 4th.

These are some basic notes on how my pain management doctor described the treatment:
Your really noisy neighbor constantly has a song blasting on repeat. You cannot escape it. That song is your pain. You know everything there is to know about the song by now. Words, chords, dance moves, history of the band, and by now the band sends you daily e-mails talking about what they had for breakfast and when they pooped last. For the first couple days it was tolerable but now you will do anything to escape it.
 Ketamine Therapy goes in and reboots your brain so that everything about the song is new. And the neighbor finally turned the volume down so now it is a much more cloudy and dull rendition you are hearing while hanging out on the street outside a club while you can carry on a conversation with a friend without it distracting you.
You still pick up the bass notes, have a general idea that a song is playing but you can't quite place it and it isn't overriding you concentration. You then have a while before your brain starts to relearn the song and it becomes overwhelming again. When the song starts getting annoying again, you go back for another less intense Ketamine Treatment to act as a soft reboot until a more intense regiment might be needed. (Ex: 1 session vs the initial 6 sessions.)

Quality of Life Chart - Chronic Pain Patients

This is something I stumbled across a few months ago. Honestly, when I first read through it, it made me cry because I realized how unbalanced my life was thanks to all the residual issues from GBS. 
But I felt it was important to spread the use of this way of measuring your quality of life beyond 'What number are you on the pain scale?' Knowing where I fell on this scale gave me something tangible to shoot for and kind of reinvigorated me towards trying to climb my way towards more definitive goals to improve my quality of life while working with a pain management specialist. 
So it might be a bit disheartening at first, but consider giving this chart a glance to see where you fall, if only for your own knowledge or maybe it can be a useful tool to better describe your situation to your doctors. 

Here is the full flyer: https://www.theacpa.org/uploads/documents/Life_Scale_3.pdf 

A better pain chart...

Well... you know... sometimes it just makes more sense this way...

Originally from: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html
Seriously, if you have not read any of their posts, go spend an afternoon reading a few. So much love for Hyperbole and a Half....

GBS - Ketamine Therapy

I am going to try and post my ketamine experience up here soon.
In the meantime, if you got a ketamine zine at the symposium and have questions,
please don't hesitate to reach out to me at: turnerstokens@gmail.com.
Please use "GBS/CIDP" in the subject of e-mails so I know it isn't a junk email.

Sunday, September 25, 2016

GBS CIDP Symposium - Brief Recap

Had a blast during this GBS CIDP Symposium.
TLDR: I might be helping out with online social networking outreach and teaching liaisons/directors how to effectively use networks for outreach. I met someone in Round Rock that might be giving the Ketamine Therapy a try. If you are a GBS/CIDP peep and you have a chance to attend at least one Symposium, give it a shot!
The longer overview....
So many stories, so much research is being done and is help funded by the organization and it was great to see so many healthcare and nurses mixed into the crowd of those hit by and family members of those hit by GBS and CIDP.
Today I skipped a panel to grab a nap before the final event and overslept a little. When we got down there, most of the tables were full and we couldn't find a seat so we scarfed out food at one of the standing tables and grabbed drinks after and promptly became wall flowers. Many thanks to Jerry Jones from the Board of Directors for inviting us to sit with him at his table. I didn't realize it but I was then sitting next to and talking to Joel Steinberg, a member of the board of the organization and a member on the medical advisory board as well as being an MD, PhD, CWS, ACLS, and former GBS patient. We got to chatting and it looks like I might be able to help out a bit in giving tips and guidance on using social media as an outreach tool for both patients and medical professionals.
Sometimes over sleeping on a nap leads to nice situations...
Earlier in the symposium I chatted briefly with a few other of the regional directors and liasons about the use of social media as an outreach tool. Many of them had an interest in using it but when they tried before it fell a bit flat. I really hope to be able to host a webinar for the regional directors to give an overview on how different networks can be used in outreach and kind of the different tips and tricks to using each individual network. I haven't been quite as active in my hunt for new patients on networks lately because I have had my hands a bit full with other things, but if I could coordinate a team and help guide their approach, that would be a much more effective route and it doesn't leave one person trying to devote many hours to the approach if we can spread it out by region. So I hope to try and pull that together in the coming months.
I have been very hesitant to step into any kind of official role because I know me and I know I would pour a ton of energy into it and right now my plate is full and I just don't have that spare energy. But this gives me a chance to arm the current directors and liaisons with tools to help them in their roles so I can at least contribute a little in a less direct manner. Maybe in the future I can still consider a 'point of contact' or 'liaison' role but right now I am just have a full plate.
Also have had a chance to meet a fellow GBS peep from Round Rock which is pretty awesome and got to hear a great story from them. They had a surgery a little while back and they noticed that after the surgery they had a pretty strong uptick in how they felt from their residual nerve issues as well as felt like they had more energy. Was it in part from the anesthesia they had? That would follow the idea with my ketamine therapy... >:3 Gave them a copy of my ketamine zine and info about my pain doc and really hope they have a chance to give it a try. I really can't wait to see the results. If ketamine is something that can truly offer benefit and relief to GBS patients several years out struggling with pain and a plateau of progress, it means so much to be able to see more people find relief!!
Ketamine was something mentioned very briefly in the pain management presentation but it was more as a side note and didn't have any details listed with it other than its name. While passing my ketamine zine out to some of the presenters/directors/board members/doctors I came across one doctor that has used ketamine therapy for a patient, though he didn't seem much enthused about the potential of it. I think he said he recently referred someone to go in for treatment with it but I don't think he has had a chance to talk to the patient yet about how they felt after. I hope they recieve as much relief as I have so that it starts opening doors as an option for other GBS peeps further out from onset! (Though I keep saying GBS peeps, I really do think the level of exhaustion I felt could bring up issues for those with CIDP and those that are still newly recovering from GBS. I worry that the stamina/endurance issue would cause too much of a risk for relapse. But I'm not a doctor, I just know how it felt for me. :x)
There were some great panels covering the ZIKA virus and the GBS connection and it was really interesting to see the stats that have been pulled from the affected areas.
I definitely was to look up more information on the IGOS program that tracks GBS cases. Unfortunately, they need to start recording from onset so I can't contribute to the stats but I am interested in seeing what kinds of detail they are able to collect and just how globally spread out the research can be. I learned a lot about the issues of GBS in Bangladesh and would love to learn more. (ex: there are no respirators there, if a loved one's lungs go out, family members have to take turns pumping the air. your family and friends are literally breathing for you.)
While I might not be able to make it out to the next Symposium in 2 years, this was a great experience and I hope GBS/CIDP peeps have a chance to experience it at least once in their life.
It was overwhelming in a good way to see so many people turn out and I look forward to seeing the organization grow as outreach and research continues.
For now, time to crash and sift through all the information received over the past few days and come up with a potential outreach plan for social media that could be used. :x
The only thing that bothered me more than I expected during this symposium was how unsettling/hard it was to be in the large crowded rooms talking at individual tables. The noise from the crowd was still a bit overwhelming and I guess I haven't really been in that kind of situation much, to that degree, and between the sitting/standing up all day for the panels on Friday and most of Saturday I think both had me tensing up and kind of aggravating my neck and shoulders issues but I do have a 'top-off' session of Ketamine already scheduled for October 4th so hopefully that will help get me back on track. And a day or two of resting will help get me there too. :>

Thursday, September 22, 2016

GBS/CIDP Symposium 2016 - San Antonio, TX

Super excited about going to the symposium this year and looking forward to meeting some of my FB and Twitter friends in real life! >:D
I'll post pictures and details soon.


Also! I pulled together a little zine about my experience with Ketamine Therapy and hope to make some posts here after I have a chance to edit a little more.