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An Update

Starting with the positives. The neurologist did the nerve block again and again with success. And although temporary it means that I not only have some headache free days over the next week as along as I don’t push it, but it also means that I am a good candidate for the radio frequency nerve ablation, where they basically kill the nerve that is giving me such terrible headaches. I meet with the Pain Specialist next Monday for a consult and will hopefully get that scheduled, however they are scheduling 6-8 weeks out. This will be a more permanent solution whereas the nerve blocks at most last a week.

They are also checking with my insurance company about Botox injections to see if they are covered. The neurologist is hoping that ablation in combination with the Botox and medication (of which I am now only on one called Lyrica) should treat all three headaches that I have going on at any given time.

The physical therapist also gave me a script for a tens unit to help between now and when all of the above have been completed and take affect. I am also going to physical therapy and for the first time in a long time the majority of the tension in my neck is relieved. So that is wonderful.

My next apt with the neurologist is June 10th and so my return to work date is June 10th. My FMLA runs out May 25th, so I am not sure what that will mean for my job. Trying pretty hard to put this all in God’s hands because it is truly out of my control. I really would hate to lose that job, it was one of the best jobs I have had and it was such a great company to work for, but at this point there is no way I could possibly work. When all 3 headaches decide to be present I am down for about 3 days, in bed all day. And although I am learning some of the triggers and can try to avoid them, talking is one of my biggest triggers as well as bending over or looking down, chin to chest. I have also found that using my arms out in front of me quite quickly brings on at least one of the headaches.

So again I say this is all in God’s hands at this point and I have to rely fully on him.

March 3rd

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MHNI Apt #2

I called into the dr yesterday with the worsening vision and jaw pain and some word loss. So I met with my neurologist today. After going over all my meds and making a few adjustments we discussed what over the past 3 months had given me any relief. My only response was the narcotic Nubain that they allowed me to take for some relief. It took the pain completely away for about 7 hours.

And then talked about the trigger point that the physical therapist found and sprayed Ethyl Chloride on and the headache went completely away for a short time but reduced for several hours.

So he decided to do a nerve block in those trigger points the headache went completely away as long as the lidocaine wore off it started to get worse but has eased up again this evening.

But my friends and family, we might be getting closer to root cause behind the headache and it is a nerve issue. Next step is to monitor how the steroids are doing and do another nerve block at my temples/trigger points in a month. If that works they will discuss and attempt to kill the nerve to hopefully get full or at least some relief. They would just have to get the right nerve. But it would resolve the jaw pain blurred vision and headache as I understand it. This might be to much to believe in but for today I have hope. And for that, today I am grateful.

Meds: He is slowly ‘ up the dose of Lyrica to see if I can get more of a full effect.  Stopped the Norflex as an abortive and made it into a preventative every day medication.and added Zanaflex as an abortive.  Also recommended B12 shots.

Comments from FB:

Shanon Smith: Great news. Will continue to pray for you!
Michelle Govitz: Great news! Still praying each day
Joy DeSimpelaere: Prayers they find it soon!
Shannen Rowe Dubose: Excellent news.
Kristen Long: That is good news Heather. Glad to hear you had some relief and forward progress is being made
Natara Loose: Are they 100% sure it’s not MS? Since it runs in our family? I take it you already got an MRI and CT SCAN and spinal fluid analysis? Just looking out for you cuz
Dawn Tomlin: This is a hopeful break through! All in Gods timing!! I will continue to pray for the smallest things and relief!!!
Heather Loose Johnson: Yep they did all those tests plus like 50 others it felt like. I let them know I had MS in my history. There were some spots on my MRI but they were pretty certain the spots were caused by the headache/migraine. I will have a follow up MRI in 4 months to be sure because there was a slight chance it was autoimmune. So they are keeping an eye on that.
Heather Loose Johnson: Two of the spinal taps lead to spinal headaches both times that lead to a total of 3 blood patches. Sucky. But I will bring it up again. The clinic treating me had not yet received the scans. Good reminder I need to call the hospital to get a move on the medical records. My mind pretty much sucks.
John SilverstoneAt least it sound like there’s light at the end of the tunnel. Still Praying