Friday, November 3, 2017

I'm not in a great place

Since I haven't posted in such a long time, it's a bit of a long walk to explain how I got here...but here goes:


Throughout 2015/2016, I experienced quite a few hospital visits for unrelated Breast, Gastric, and Ureterorenal health issues which required a couple of surgeries and a whole bunch of procedures. Along with beginning a dental treatment plan that was long overdue. That being said, the thought of undertaking a stimulator revision in the midst of that wasn't very appealing, so discussions were pushed back. Despite the fact that around March of 2016, the tethering and scar tissue in my neck got pretty painful on its own and we almost took to surgical intervention, but decided to try other methods such as physical therapy and muscle relaxers to ease the discomfort and decreased mobility.

So, into 2017 I continued to hold fairly steady with moderate pain control from my stim and supplemental opiate pain medication. Even though I can't function without the stimulator, it still leaves a lot of HC pain to control with few alternative options. So, it was time to once again meet with my headache specialist to discuss revision 
opinions/options and decide what direction to aim.

We touched on the prospect of finding a provider who would be able to slightly change the location of current leads as well as add a supraorbital lead, which I've wanted from early on (It's a large area of my pain that my current stim just can't reach) , but this would likely require a trip to Texas and possibly not be covered by insurance.
In addition, we talked about the fact that if we did a lead revision now, I'd probably only have a couple of years left on this battery, and would have to eventually replace/upgrade to new technology (possibly Burst? Which I've heard is less distracting to the brain. Since you can't feel it, it could help reduce the brain fog symptoms of 
chronic pain with stim) and this would mean another surgery fairly soon.


We decided it was best to continue "as is", until such time that a battery replacement becomes necessary, and attempt to implement additional supplemental methods of pain control. 



We started with BOTOX around June in hopes that it would be more beneficial in conjunction with stimulation. Unfortunately, it was not only expensive, but it really only helped with migraine and wasn't as effective for treating my HC as we'd hoped.


The second item we discussed was the addition of a patent-pending nutraceutical called Gliacin, developed in part by my headache specialist. I had participated in early compound trials and found it helped overall with inflammation and hope that it can be of some benefit to me now. Though I have obtained it, due to my particular gastric issues which prevent me from taking capsules, I've had a difficult time incorporating it as of yet. (It is a bit hydro-static when trying to mix it into food, etc.) but, hopefully I'll find something that works. 


During these visits, my provider was once again able to put me in contact with another patient in similar circumstances. They mentioned the treatment that had worked well for them was an SPG (Sphenopalatine Ganglion) Block. Which is a slightly invasive procedure I had briefly considered in the past, but is no longer performed by that provider. So, I added this to my list of treatments to research once again. I asked my Pain Management provider if he knew of anyone who does perform this procedure, and he was able to find a doctor in the practice who does (I'm not sure yet of the particular method he uses yet), but it has been ordered and should be scheduled soon. I'll post the results of this endeavor as they unfold.


And finally... we discussed the drugs. I hate that I rely on Opioid medication (My HC does not respond to it, but it is helpful in the treatment of secondary pain and the pain of the implant iteself. And, due to the nature of my particular headache condition, I don't have to be overly concerned about rebound headaches as a result.) It is especially difficult in these current times of the "Opioid Crisis" where quite often as a chronic pain patient, I am made to feel like a criminal. This is a very nuanced discussion that I'll set aside here, but, when all is said and done, it would obviously be ideal for me to not be dependent on this medication...

In researching alternatives and scrolling support group forums, it has been obvious as of late that many HC, TN,  and Cluster Headache sufferers are finding relief from Medical Marijuana and related products such as the non-euphoric CBDs. Though I live in a state where medical cannabis is legal, it is not yet an option in conjunction with 
traditional pain management, as it is governed nationally. I would have to essentially trade one for the other, go through the hell of chemical withdrawal, and risk being an acceptable patient in the future if things didn't go as planned; all on the hopes that it might be therapeutic. This is still a very possible option for me in the future. There is just a lot to consider before moving forward while the medical community's acceptance is still in its infancy. 


Amidst my other health issues, I have Psoriasis. When I have a flare, my scalp is usually ground zero. After my most recent flare, most likely a result of stress, some weight gain, and the changing of seasons, the plaques began to subside, but I noticed one of my lead tips was becoming pretty superficial. During the busy, final week of October, I tried to put it on hold and hope that it would resolve on its own, or at least wait until I could get it looked at. But as opposed to the last time I had a similar issue in 2013, this time it has brought with it a drastic increase in pain. My HC headaches are at least 2 to 3 pain levels higher at all times and I can't adjust my stimulator to properly accommodate without causing painful stimulation at the area in question. My biggest fear in this situation is the lead actually penetrating my scalp and compromising the system resulting in infection and potential removal. This would be no less than devastating. So, for a few days I kept track of it. Although it wasn't getting any better, by Halloween night it hadn't seemed to have gotten any worse (other than the crippling headache flares at certain times of day and being held hostage on the couch with ice packs. Waking up crying, falling asleep whining) 

On Thursday, I went to the dentist (another saga in itself) and when I was resting my head on the dentist's chair, I noticed increased pain at the lead tip. When I felt to see what was going on, it had gotten even more superficial and I am now pretty concerned that it may penetrate the skin with a wrong movement, or a mindless scratch. So, rather than risk another day, I went to the ER. I was given X-rays, and waited with an ice pack for about 5 hours for the neurosurgery resident consult. He quickly examined the area and concluded that since the skin was intact, I should follow up in the clinic with my surgeon. (Vastly different than the course that was taken in 2013 where I was admitted immediately for a slight revision that successfully avoided lead exposure) So, I called the office this morning and was told that they would confirm with my surgeon whether a clinic visit is warranted or not, and if so, call me early next week to schedule.) I've been repeatedly told that it is important to catch these things before they become exposed or infected, yet no one is really seeming to be, I'm not sure whether to share their optimism, or feel slightly disregarded. My current pain pushes my mind toward the latter. It also made the sentiment, "I know you had to wait a long time, I have a lot of sick people upstairs." make me feel like more of an inconvenience than a patient, when I'd like to think it wasn't meant to be taken that way. So,
 I'll most likely be spending the weekend trying to keep my headache under a 10 and my scalp intact. Nervous that they may take away the only thing that gave me any of my life back, or deem me unsuccessful and refuse to support any further revisions. Not a great place to be. But, I'm still amazingly lucky to be surrounded by people who love and support me, and I'll move forward however I can.

Sidenote: Last year, my amazing St. Jude Rep had a career change within the organization and I've not had any interaction with a new rep yet. So, after my followup appointment, I'll contact them to set up a meeting to discuss what the plan will be moving forward. It just feels slightly more overwhelming without her there as a constant. 

I hope you are all doing as well as possible, and I'll try to post again soon (Maybe even within the year) - Cheers.

Sunday, December 28, 2014

"Tough times never last, but tough people do." -Robert H. Schuller

The Year in Review

Since the relapse of October 2013, I have been in a bittersweet holding pattern. In an effort to find out why my stimulator was no longer effective after a strep infection, my rep and I went through every channel. I saw my surgeon as well as my headache specialist, and after diagnostic tests and physical exams, while both agreed that infections of this nature exacerbate headache condition symptoms, neither were able to conclusively determine why I was no longer getting the same level of relief.

I was referred to a physician at a new Pain Management center who was said to specialize in using neuromodulation for pain to discuss my options.

He said my options were either a full revision, (Using a possibly different lead type and/or configuration or his preferred suggestion... radio frequency ablation. (Which could potentially rule out stimulation as a future option) I was hesitant about this option for a few reasons. I'd never had any lasting relief (past the initial anesthetic) with nerve blocks, and was previously lead to believe that although nerve stimulation could treat Hemicrania Continua that the problem wasn't actually the nerves like in some other conditions and destroying them wouldn't solve anything. I told him how well stimulation had worked for me, and his response was basically, "Well, it isn't working now, so we should do something different."

So, I agreed to a trial of a slightly different type of Injections than I had previously tried to ensure I'd be a good candidate for RFA. For me, and for several reasons I may outline at a later date, this series of injections were a horrible experience and the second visit actually blindingly intensified my pain. So, I didn't pursue RFA any further and knew my only option would probably be one more revision.

Life-Altering Sidetrack

Due to the gaining during the past few years on top of a lifelong battle with my weight, I had finally begun the process of bariatric surgery. (With the additional hope that weight loss might miraculously make me an inhospitable environment for head gnomes.) And I discussed this with my rep and the Pain Management doctor. We agreed that a revision was probably inevitable and that it would be best to wait until a year post weight loss surgery once I'd lost my excess body weight and things stabilized so we could avoid any issues that extreme weight loss might cause with an implant. At that time, since I feel this is temporary and there are future options, I finally requested and accepted the use of narcotics to get through the year. This is always a tough decision since they do not eliminate my pain, (otherwise it would have been my first treatement choice) but when I have nothing else, they help take an edge off to get through the day.

I had Laparascopic RNY Gastric Bypass surgery in May 2014 and to date, have lost 120lbs. And though it hasn't helped the Head Gnomes, being/feeling healthier overall, makes it a little bit easier to manage day-to-day life.

Where I am Now

Over the past year, maybe due to weight loss, my stimulator has slightly increased in effectiveness. (Not to original levels, but rather to the point where if it is off, my pain is noticeably worse.) So, we have reprogrammed a couple of times to get the best possible results and I use it 24/7, supplement with the pain medication, and wait to start discussing the possibility a revision sometime after May 2015. The who, where, and how that will all work out is still up in the air.

Despite this bastard condition, all of the daily struggles it creates, and the occasional really bad Head Gnome day...


I've still had a pretty good year. I hope you all have as well. And as always, for those of you in pain, I wish you relief.  And if relief doesn't come, I wish you moments of happiness, love, and support throughout that pain.

Thursday, November 7, 2013

2 More Revisions... and a Relapse?!?

Since my last post, I have had two more revisions. For those counting, Including my initial implant surgery, this makes 5 total surgeries in a year's time... yup, still worth it.

(One due to the scar tissue tethering mentioned in my previous post, and one due to the tip of a lead becoming very superficial and trying to poke through my scalp like an underwire pokes through a bra) The latter was a very quick procedure and fast recovery. We were able to resolve the problem by slightly moving the lead up laterally and slightly deeper. This situation would have been worse had I not gone in to the E.D. and waited until it actually came through the skin, so...when it doubt, get it checked out.

After the last revision in June, things had been pretty good. We reprogrammed due to the slight lead position change required, and I was still getting pretty good coverage and relief. 

Until this week...


Well, I suppose it started the week before when I came down with a pretty severe case of tonsillitis which was accompanied by a pretty high fever for several days. 

During said fever, I had some pretty hellish headaches...cry-myself-to-sleep level headaches. But these were not "my" headache. These were obviously fever induced. So, I didn't think much of it. During the illness, I kept my stimulator on of course. After a round of antibiotics, I got better. For about 24 hours, I felt fine.

And then morning came. And with it came my old headache. The one that I hadn't had to deal with in all its glory since before I had the stimulator. Not just breakthrough, like when the weather is bad, or I didn't get enough sleep...but the worst upon waking, hit me like a truck to the temple pain. And it wasn't just the was every symptom that goes along with it; things I luckily had forgotten dealing with on a daily basis. The eye-watering, the one-sided nasal stuffiness, the spasming eardrum, the confusion and memory issues, the bad, not mild vertigo, the bad, not mild nausea, the light sensitivity, etc. and this all lead of course to complete panic that all of these things might be back for good. The fear that comes with the slightest backslide can be immobilizing. 

I gathered my thoughts as much as possible and started trying things. 

First, I made sure that my battery was charged, it was. Then I proceeded to change programs and see if anything made a difference. I did ensure that the stimulator was indeed fully functional and not doing anything out of the simply wasn't providing any relief.

My next step was to turn it off completely. I thought maybe a "Reboot" might be know, sneak up on it. The damn gnomes had escaped the electric fence while I was sick, and they needed to be corralled.

After leaving the stimulator off for about 24 hours, I tried it again. Still not helping. So, I called my rep to schedule some reprogramming. Luckily, she was very accommodating and we were able to meet this morning.

Even though we were able to find some things that gave me a bit of relief, they are all short-lived and it is like my headache acclimates after a few moments and it is no longer effective. So, until the next step, She was able to give me a cycling program which is on for 15 minutes, off for 30 seconds and continues like that. It is slightly better than nothing.

My pain management doctor ordered some blood work and a CT scan, and has referred me to my headache specialist to discuss my HC symptoms returning the way they did, as well as a referral back to my surgeon in case the infection I've had somehow involves my system.

So, tests and appointments and barely getting through. Not sure the why this is happening, but hoping there is a solution in the near future, or that it resolves itself.

Wish me luck, I'll try to post an update soon... And maybe one day, I'll actually post here when things are positive. :) Just know that usually when I'm is because things are going as well as they can and I'm living life.