It’s been too long

Sorry it’s been so long since I last posted.  Things have been crazy!  My haldol treatment gave me about 2.5 months of decreased frequency and severity in my migraines before needing another infusion.  My migraines began steadily increasing about 1 month post infusion.  I had my second infusion in the beginning of January and just had my 3rd round last week.  These infusions, although rarely given, have made a difference for me.  My stim still helps decrease the intensity of my migraine but doesn’t seem to help prevent them.

I ended up having an SI ablation in late October or early November which greatly decreased my pain.  I am now able to go 2-3 months between reprogrammings for my lumbar stim.  It continues to make a huge difference in my nerve pain.

I was also recently diagnosed with psoriatic arthritis and mild lupus which significantly complicate my current immune deficiency.  I am very happy with my new rheumatologist and have all the confidence in her.  She has already talked to my immunologist and together, they came up with the best treatment plan for me.  Two weeks ago I tried a humira shot, but there are resistance concerns with it and I can’t be put on methotrexate which is usually what they use to minimize that risk.  So today, I did my first Cimzia injection.  Fingers crossed I get the same pain relief and energy for a couple of days which I got from the humira!

I’m going to try to post more often again.  About everything going on with me.  Unfortunately, I have a complex medical history, so there is never a dull moment!

Bad month

This last month has been a roller coaster.  I only had 5 days in September where I didn’t have a migraine.  Then I started out October with a migraine for the first 10 days.  I was hospitalized for a second time, the last one being from October 2nd to October 9th.  I had to have a port put in after over 20 attempts to get an IV.  The first IV only lasted 12 hrs, the second was 4 days later and also lasted about 12-15 hrs.  So I ended up going into the OR with a very small needle in my foot so they could give me anesthesia to put the port in.  After the port was in, my neurologist did 2 haldol infusions on back to back nights.  The first Infusion took my migraine from an 8 to a 5, it then increased to a 6 the next day and the second treatment took it from a 6 to a 2.  Since then I’ve had only 2 migraines in the last 20 days.
My back pain isn’t great.  I’m having an SI ablation in 2 days.  I’m also in PT for the spasms in my upper back, which are improving.  And then I get reprogrammed on Thursday which should also help!

New Piercing… and its helping my migraines!!

The last month has been my worst month ever with migraines.  I was even hospitalized for 5 days because I couldn’t break the streak.  Needless to say, I’m not happy. That’s not to say my stimulator isn’t working because it is.  In fact, today I had to turn my stimulator off for an SI injection and I realized how much the stimulator is helping reduce the intensity of my migraines.  My pain with the stim on was a 4/10.  When it was turned off it went up to an 8/10.

However, almost of month of migraines straight left me desperate for some more relief.  So I decided to try out the daith piercing that a bunch of people have said has helped decrease the intensity of their migraines.  I got it pierced 7 days ago and in those 7 days, today was the worst.  I haven’t been above a 4/10 until my stim was turned off today!  The daith or tragus are used because there are acupressure and acupuncture points in there that supposedly help migraines.  I got more relief at the daith location when I was getting acupuncture, which is why I got it pierced there.

I found an extremely clean place here in NJ that does piercings only!  They were fabulous.  Each tray was ultrasonically sterilized and was brought into the room still closed.  The earring you chose was also placed in that tray prior to going into the sterilization machine, so it too was sterile.  They used sterile technique once everything was set up and the guy was really great.  I would definitely go back.  They also do free jewelry changes since the rings are usually difficult to remove.

Right now, my fingers are crossed that this continues to work for me and decrease the intensity of these migraines.  Hopefully working with my reps will help my stim also give me more options.  Then working with my neurologist with meds will hopefully give me more options.

Not such a good week

The last week has been pretty miserable.  I’ve had a 13 day running migraine with pain anywhere from a 2-8/10.  It’s been horrible.  I was admitted to the hospital for 5 days to attempt to et the migraine under control.  We got it from an 8/10 at admission to a 3/10 at discharge, which is pretty good!  Yesterday it was even down to a 2/10. 

Now before you start asking why the stim didn’t prevent this from happening, let me explain.  The stim is just another treatment for my neuralgia and migraines, and no treatment is flawless.  There are going to be times where my pain breaks through the stim and other meds, but hopefully few and far between.  This migraine I have would have easily been a 10/10, crying, banging my head against a wall migraine if my stim wasn’t there.  I can’t tell you how grateful I am for the small help in pain reduction.

I was able to see my neurologist Monday and we are trying to adjust some of my medications to see if we can get me more relief, but we are also talking more about finding someone who does ketamine treatments.  Then today I was supposed to go have a radio frequency ablation done on my SI joint, but the machine was broken, so my Dr and I agreed to flip the procedures and do my cervical epidural today and the rfa in 2 weeks.  The good part is I couldn’t stress about this much BC it was a last minute change.  The bad part is my head is hurting so much again- back up to a 6/10.  I remember having a headache after my first cervical epidural so I just have to give it time, but having the underlying migraine isn’t helping.

Hopefully this migraine will subside soon and I can get back to living my life instead of hiding and staying away from the sun.  I really got to see the stim difference when I had to turn them off today and realized how much of a flare I am in- both overall body and migraine wise.  Hopefully things improve soon!!

Update

The stim has definitely been helping.  I’m down from 15-20 migraines a month to 10-12 (I average 2-3 per week).  Unfortunately this is my first migraine since my stim implant that is over 24 hrs.  The good side is usually these migraines are like 9-10/10 on my pain scale, where as this is only 7/10, but still very disruptive.  I called my neuro but he was on vacation, but his covering dr was soooo nice.  She increased my steroids, and if not better by tomorrow afternoon, I’m to call and go to the ER and she wants to admit me for IV medications.  I have been asking about ketamine and lidocaine infusions. But noone on my insurance does them.  So I have to work that further.  Plus I’m changing pcp’s right now and that will complicate things, I’m sure.  Hopefully things go smoothly and this migraine will be a thing of the past soon.

The other good news is that I have not had any serious trigeminal neuralgia pain since my stim implant.  I have gotten little strikes here and there, but nothing that lasted!!  That’s a major win BC that pain was the worst and made me want to rip my jaw off!

Hoping things continue to go well.  I’m still fighting for disability as they don’t want to give a well-educated, young person disability, but seriously.  How much can I endure?  Between the back pain, migraines, immunodeficiency, trigeminal neuralgia, lupus, adrenal insufficiency, fibromyalgia, chronic fatigue, and asthma (just to name a few)- idk how I’m expected to hold a full time job and only miss 2 days of work a month!!!  Never mind something that won’t flare all these conditions!  Ugh… Hopefully I’ll get a court date soon!  Anyway, I’ll try to update again soon!

Officially a Boston Scientific Patient Ambassador

I’ve been working for a few months to become a Boston Scientific Volunteer Patient Ambassador.  Tonight I finished the last step of training and spoke to my first patient.  It’s such an amazing feeling to share my story and give someone else hope that their pain can improve.  It’s such an empowering feeling.
I would have never thought to do this or pursue it if it wasn’t for the fantastic reps who recognized the person inside of me who wants to help others.  They mentioned it to me, told me I would do great, and then recommended me to the program.  I wish more people became patient ambassadors, but at least we have some!
As for me, I’ve done some more reprogramming for both my back and head.  The head is doing pretty well and I see the neurosurgeon tomorrow for a follow up.  My rep and I created some burst programs which actually feel really good an give me awesome coverage.  I’m so glad I have such knowledgeable reps who have been able to program my systems to get me this much pain relief.  I’m still at 75% less pain meds for my back and after only 2 months with my new leads my migraines have cut back from 4-5 a week to 2-3 a week and they are less intense.  That’s going from 16-20 migraines a month to 8-12!  What a huge difference!!  AND i haven’t had a single episode of trigeminal neuralgia in 45 days, even after having a tooth pulled on my affected side!!! I’m so grateful for both my reps and my surgeon who believed me and were willing to try this.

Just Checking in!!

I figured I would post an update.  Yesterday I had a sacroiliac joint injection.  My pain Dr and I are working together to fine tune my pain relief by using nerve blocks and ablations to cover what my stimulator hasn’t been able to.  The first round of ablations helped a bunch, so fingers crossed they last a bit. Unfortunately I didn’t sleep much the night before my SI injection and when I turned my stim off for the procedure, my head started to pound.  Then I started to notice my aura and there was nothing I could do about it.  I just felt this sense of dread because usually when my migraines start like that, they are horrible, multi-day migraines that leave me crying in bed.  By the time I went back for my injection, I was in so much pain I was nauseous.  When I awoke from the conscious sedation, my migraine wasn’t nearly as bad.  They discharged me quickly and when I got in the car I took a fioricet.  By the time we got to breakfast 30 minutes later my migraine was down to a 2 or 3 from the 8-9 it was before the procedure!  Tonight I went online and found some research studies that looked at propofol’s effect on migraines and it seems to actually be very effective in reducing migraine severity- very very interesting!!

My surgical incisions are continuing to heal nicely and the chest incision has finally closed, leaving the incision behind my ear as the last to fully close.  Everything is looking good at this point.  I am also noticing a decrease in my migraines.  The last two weeks I have had only 2 migraines with nausea or dizziness or light issues.  So far this week, yesterday was the first.

Tomorrow I’m meeting with my rep to reprogram both my back and head systems.  I need some minor tweaking on my back system and need a bunch of stuff played with on my new system.  The last reprogramming helped a ton but I’m finding the sensation isn’t jumping like it did 2 wks ago and some things are feeling stronger or more “prickly” as I call it.

I also have noticed that with my new system, when I wake my remote from sleeping, activate it so I can change programs or intensity, my stimulation gets stronger.  I never noticed that with my back system.  I asked on of my groups and found out other people noticed it too.  One woman asked her rep and they asked the engineers who explained that there is a slight increase when the remote is active but most people don’t notice it.  We just happen to be one of the sensitive ones that feel that change.  I honestly think it has to do with how sensitive the area is, since I don’t notice it with my first system but do with this system.  It’s just an interesting thing that has happened and got me thinking of how intricate the body is.

Hopefully things will keep improving like they ave been with both my back pain and my migraines.  Fingers crossed for good things!!

Incision Follow-up

Today, there was good news.  I had called in on Friday and I was still having a bunch of drainage, so I had to go back down to the Dr. today.  I had changed the steri-strips yesterday and put the old ones in a plastic bag to show her the amount of drainage since Saturday.  She was even more happy to see how little was on the steri-strips since last night.  However, my skin continues to be irritated by everything and anything.  Thankfully, no more dressings and just told to put sylvadine cream on my chest and ear incisions nightly and sleep w/ a tank top on to allow the incision to air.

The nurse practitioner said to stay in touch and definitely call if anything happens.  I have to follow up in a month- July 31st.

The other good news is that the programs that my rep put on my system are helping.  The pain has been less this week, even though there have been some thunderstorms which tend to trigger my migraines.  So this is very good news to me and I’m very happy!  I will try to keep updating as things progress, but right now I am seeing positive progress. 🙂

First Post-op Appointment

Wednesday I had my first post-op appointment.  Unfortunately one of the incisions took a turn Monday night.  I realized that one of the knots from my internal sutures in my chest was poking up and preventing the last part of my incision from closing.  I told my rep Tuesday and she had me call the Dr’s office to warn them.  The nurse practitioner called back and told me to keep it clean and covered until I saw them, which I was.  However I had started to get a reaction to the band-aid adhesive so I changed the covering to a small piece of gauze and an IV 3000 covering.  When the nurse practitioner pulled that off the next day, there was yucky drainage on it.  She cleaned the area well and then steri-stripped the last opening and put me back on strong antibiotics.  I’m lucky as my mom is a microbiologist, so when she got home we cultured the area and I should have results tomorrow or Monday.
She also looked at my head incisions and said they were healing well.  I voiced my concern about the incision behind my ear being so red and inflamed and worried it could easily get infected.  She told me that she trusts me and that I really know my body so she would cut them, however, some would have to work their way out.  I was fine with that and it was great to know that I’ve been reliable and have enough competent medical knowledge that they trust me to know this.
I have to call the office later today (Friday) and if there is any drainage coming out, then I will most likely need an appointment for next week.  I did have some drainage the night of my appointment, and possibly a bit last night, so we shall see if she is concerned.  The area around the opening was also red and inflammed but I can’t see that now because of the ster-strips.  If the nurse practitioner isn’t concerned, then I follow up in a month, but if she is worried, then I will see someone next week.  Fingers crossed, please!
The best part of the visit on Wednesday was that I met with one of my reps.  My usual rep got caught up in surgery so she couldn’t make it but one of her colleagues could.  He was great and he found a bunch of new spots.  He updated 3 of my old programs and put together 5 new programs for me.  It is very interesting how the stim jumps around and how one lead can impact another.  I turned my occipital off when we reprogrammed and when I turned them back on it shifted some of the programs, but in a positive way so far.  It’s just so mind boggling what the body does and how and where it interprets the stimulation signal.

Rough week

Sorry I haven’t posted all week about my progress but I’ve had migraines just about all week.  Before you start thinking, “Oh no, it didn’t work.” Or something of the sort, don’t.  It’s not the implantation of the leads alone that helps the migraines and is a source to treat them, you also need the right programming.  Currently my programming was done in recovery and isn’t the best coverage by far!  It helps a bit but not when the migraines get over a 5/10.  Wednesday, I see Dr. Mammis for my post-op appt and my rep will be there to reprogram me.  She is fabulous and I love her to death!  I’m sure we will be able to find better coverage. 
After being through the past year and talking to other patients through my Facebook support group, I honestly feel that the surgeon’s placement of the leads is only 50% of the equation, if that much.  Your rep and his/her knowledge of how to program you is the other half or more.  The reps are an invaluable asset and can be the key to success.
At this appointment Wednesday, Dr. Mammis will also take out the stitches in my head which I can’t wait for.  The incision behind my ear is red from being irritated by the sutures and both itch like no tomorrow!  I am actually a bit baffled why he stitched my head incisions but glued my chest incision.  I also wonder if this one bump at the beginning/end of my incision, depending on how you look at it, could be a dissolvable suture that was placed underneath as its been there since day 1 and didn’t form like scar tissue would.  The chest suture is almost scab free which means I can start scar mobility treatments and other treatments to minimize the scar’s appearance soon.  I’m going to run it by Dr. Mammis Wednesday to make sure he is OK with it, but I doubt he will say no.  I usually start scar massage/mobility using a small amount of vitamin e oil and then leave some extra on afterwards.  I have also applied some vitamin e oil to previous scars at night with good results, but not every surgeon agrees with that.  In fact my mom and immunologist keep commenting on how great my scars from my first system look, very minimal and extremely straight!  Dr. Winfree did a fabulous job with that system.
Well that’s where I stand right now.  I will try to update after my appointment on Wednesday.  The stitches should be out and new programs on my ipg!!!.