MHNI Visit #7

Update from the Dr visits: in short I feel like they are doing nothing to help figure out the cause of the headaches nor are they helping me to deal and manage my daily headaches. It was as if they had no insight at this visit they just seemed like YesMen. I asked for an MRI and they said sure. I asked for a possible sleep study and they said sure. I asked for continuing PT they said sure. I asked to go off of Lyrica and they said sure. I told them the reaction I had from the Botox which was a forehead full of pimples and terrible itchy scalp and their response was, it doesn’t look that bad lets still do the next round. It was nuts. It felt like such a waste of time. Plus the new neurologist came in introduced himself by shaking my hand said two words to the PA I was speaking with and walked out. It was so rude and not a way to make a good impression on a new patient. So the only thing that one Dr set up that he already had a plan for next steps is a C2 nerve block. So that will get scheduled, I will stop Lyrica, get an MRI, possibly do a sleep study, and get the next round of Botox is Sept.

I am so frustrated. Plus they are not getting their paperwork into long term Disability so I am now going in to no pay period because of paperwork ugh. So the headaches rage on day after day after day for 7 months straight now. I am starting to go a little crazy. The C2 block and the next round of Botox and I believe they can give me no more help. They acted yesterday like they had all given up on my case and I am again without a way to manage my daily pain. Sorry to vent. It’s just getting old.


Botox: MHNI visit #6

6/18/15 My insurance company finally approved the Botox for 3 rounds of injections through the end of the year. Headaches have been pretty awful lately so I am really hoping this does something positive.

June 18th

Botox is done. It was awful…30 injections in my face, around my head, down my neck and shoulders.  So yay!  No more wrinkles.  I did have to do a Toradol shot, so I am feeling a lot better now.  So my mom and I went off to lunch at Five Guys Burger where I was sorely disappointed because their fries are deep fried in Peanut Oil (allergic to peanuts) and the oil was everywhere. Just hoping I don’t have a reaction. Then off to Trader Joes where I bought spicy California roll and the very best spicy black bean dip!

On our way home to rest. Long morning!!  Unfortunately the peanut oil or the California roll hit me bad on the drive home…first the bloating (I can literally feel my pants get tighter) then the gas and then the cramping.  Luckily I had my antihistamines with me and took it but I always feel crappy for several hours after..until the bloating and gas and cramping stop.

So all in all a fun day 🙂  Haha!



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