Being disheartened, and hopeful.

Mexican Poppies, Tucson, AZ. by W. Holcombe

I don’t even know where I left off so I’m just going to ramble a bit. I guess I’m too lazy to read my last post, or just not in a good frame of mind lately.

A lot has been going on. I had an injection (epidural) in my neck to help the disc bulge on February 22nd, and lately it seems to be wearing off. I’ll be getting a second injection on the 22nd of this month. They say it can take a couple of injections to get the full effect when you first start getting them, so hopefully this one will last a long time. I’m just concerned because they don’t normally give more than 3 injections a year, what if this one wears off in just a couple of months? Even if they would give me more injections, I’m not sure that’s wise considering I had Avascular Necrosis (AVN) in my left hip causing a total hip replacement, which they believe was caused by steroid use. Trying hard not to think about all of that, just take it one day at a time, but wouldn’t it be irresponsible of me not to at least be concerned about this? When I talk to my doctor he just said that it’s always more of a chance once you’ve had AVN, but it’s the only thing they can do to relieve the pain right now. Later, if it gets worse, they can do surgery, but who wants to have surgery on their neck? That’s pretty darn scary to me. But I will NOT think about that! That really is getting worked up about what might never happen. Of course, I was getting upset about the whole injection thing, so I guess I really should just take it as it comes, and not get worried about things that may never happen.

I was about to tell you how happy I was about something that caused me to look at the calendar to check the date….Wow! It’s been a long time since I posted! It’s been a bit busy here. Anyway, my happiness… I had a Vyepti infusion on the 16th of March, it was my first infusion at the higher dose. Afterward, I had NO migraines on the 18th, 19th, 20th, and 21st!! After a YEAR of migraine pain, I had FOUR days without one!! I was so happy and so hopeful. even after a bad on the 22nd, I was still hopeful that I’d have migraine free days once again. That hasn’t happened. Since then I’ve had 8 days where my migraine made it impossible for me to do anything except curl in a dark room. The rest of the days I’ve still had migraines but I was able to do something, even if just a little.

I’ve been feeling so disheartened. It looks like the PT didn’t help the pain at all, only with the injection have I been able to get relief from the horrible nerve pain. It did however, improve my range of motion and strength. So I’ll continue my exercises and hope for the best. I had a little break in my migraines, but it was very short lived. My mood has fluctuated from happy, to anger, to sadness…

courtesy of Headspace

Then last night I saw in an article on Migraine Strong that a new neuromodulationdevice for migraines has been approved by the FDA. I already have the Cefaly and the Nerivio and bot word to some degree. The Cefaly is the best for me. It stimulates the supraorbital branch of the transgemial nerve. The Nerivio stimulates nerves in the arm that makes your brain focus on it and off the migraine pain, it’s kind of interesting. The Nervio works for me only if I use it at the very beginning of a migraine, when you are intractable it’s impossible to catch it at the Start of a migraine.

“Relivion targets two main nerve branches believed to be involved in the Migraine process: the trigeminal nerve branches in the front of the head and the occipital nerve branches in the back of the head.”

This gives me hope. Hope that I might get some relief. However, since it isn’t on the market yet they don’t know how much it will cost or if it will be covered by insurance. Since I’m on Medicare, if they have a discount I won’t be eligible. That’s very unfortunate. I did just find out that if you are on Medicare you should reach out to the manufacturer to see if they will offer you a discount. We’ll see if I can get it. crossing fingers. If not, I guess it wasn’t for me.

I’ve been looking at a headache clinic in Phoenix, but I don’t see where they offer more than I’ve already tried. I honestly don’t know what to do or, where to go for help. Would Mayo offer more? I just don’t know. I have an appointment with a new headache doctor, but the first appointment she had for new patients is in November! It’s really crazy how in demand headache specialist are, and how few there are. I just read in Practical Neurology “If all patients with migraine were cared for by a UCNS board-certified headache specialist, each would see approximately 78,000 patients per year”. UNCS is the United Council for Neurologic Specialities. Personally, don’t actually think that all patients with migraine need to see a specialist, however if you do not respond to typical treatments you do need to see one. That can be very difficult. The average neurologist receives just 4 hours of training on headache disorders. There are about 500 headache specialist in the US. Migraine affects 1 in 7 people world wide. It’s just crazy that we don’t have more doctors who specialize in it. Tucson has 2, one is certified by UCNS, the other is certified by the Certificate of Added Qualifications (CAQ). The later is who I’ve been seeing, the former is who I have an appointment with in November. I’m very lucky that I have access to a headache specialist at all, there are some states that have none!

I’m so grateful for all the new medications and new neuromodulation devices that have come out for migraine. It’s amazing really since there is so little money allocated to migraine research. There is so much they do not know.

On a good note, I got my first vaccine shot, and get the second on Saturday! Woot! I’ll still wear a mask and be careful, but I might actually go out some.

I plan to have a give away soon. I received a lot of things from the Retreat Migraine conference (virtual), and I can’t use all of it. Stuart also got a goodie box since he attended too, so I have some of that to give away too. I just want to give back to you, after all the support you’ve given me over the years.

I’m thinking of starting Mindfulness Monday again. I’d like your input if you’d like that or not?

“See” you soon!

I can type again

Photo by Min An on Pexels.com

When last we spoke I was hurting too much to type. I’m happy to say that I can type again! I’m not sure I have too much to say, but at least I can type. I’m going to try to be brief here, just letting you guys know that I’m okay, and I’ll try to post more often.

For the past few months I’ve been consumed by the nerve pain going down my arms and bursting out of my hands. The pain also traveled down my back, in between my shoulder blades. I’ve had a lot of pain in my life, but this nerve pain has, by far, been the worst. I believe in accepting what comes and being okay with it. Everything changes, you just need to go with it. This pain I could not accept, and that hurt me as a person. I couldn’t accept what was happening to me, the pain was just too great. I have a much deeper understanding of what severe pain can do to you. I saw what it was doing to me, and I didn’t like it, but I couldn’t change it. How can anyone accept feeling like their hands are on fire from the inside out, every morning! I would scream with pain. I made bargains, if it would just stop I promised I’d be a better person…ect. I have never wished to die so often, and I’m not depressed. Can you imagine how messed up I’d be if I was going through this with depression? I can’t even imagine.

I was in physical therapy in January, and it seemed to be working, then I had a set back and we kind of started over. Then I felt like I was getting better, then I hit a wall and crashed. Every time we tried adding any strength training all my symptoms would return. It has been hell so far this year….but it’s getting better.

Last Monday I finally got an epidural in my neck and trigger point injections through my trapezius on both sides. I cannot express enough how this has changed my life! I’m no longer afraid to go to sleep for fear of what will happen when I wake up. I’m sleeping more than 4 hours a night. I actually slept for 10 hours one day this week! I think I’m still catching up on sleep.

Migraines are still here. Both my physical therapist and my pain management doctor think that my migraines may be so much worse because of my neck. The last two days I’ve had a very intense migraine. That’s really hard when you don’t have a rescue med that works and Medicare won’t pay for the only one that does. I don’t have thousands of dollars to spend on medication each month. So I’ll live with the pain, for now. The pain changes from day to day, hour to hour, it’s often just in the background, but when it climbs too high, I really notice. But that’s the thing, yes I’m in pain all the time, but it is constantly changing, that gives me hope. Everything changes.

Okay that’s it for today. I promise I’ll try to be back soon. I have lots of migraine stuff I want to share with you all.

How is everyone? I really want to know.

Ready for 2020?!

Image by Gerd Altmann from Pixabay

I’m baaaack! Whew, I didn’t mean to be gone so long. I actually did write a post during my absence, but, silly me, I forgot to hit “Publish” and it’s out of date now.

Let’s see what was going on when last I left you?

We were getting ready to move into our house. Check, that happened; there are still plenty of boxes and there is actually more to move from Stuart’s dad’s house, but we are in OUR house and it feels good, even if I’m extremely exhausted and flaring.

I had hopes that the nerve block injection I had in my neck was working, but it didn’t. I had a couple of good days, but I think that may have just been good days because it sure didn’t last. I saw the pain doctor again and I had an occipital nerve block on the right side on December 30th to hopefully help with my migraines. I actually do think this one is working. I have had migraines since the injection, but they did not start in that area. That’s great, because a LOT of my migraines do start in that area. It hasn’t been long, but so far I’m hopeful. I also had an x-ray of the thoracic region of my back and it showed no damage; I have to say I was surprised. I have so much pain in that area, and it feels like it comes from the bone. I’m happy I don’t have problems there, but I do wish I knew what the heck is wrong. It’s really hard when you can’t have an MRI. She also wants me to have a nerve conduction study to see what may be causing my arms to go to sleep since the nerve block in my neck didn’t help. I’m not looking forward to that test, it’s not very comfortable (to say the least), but hopefully it will provide some answers.

Right after my last post I had a severe gastritis attack accompanied by severe diarrhea (literally crapping my pants over and over. yes, I know, TMI). I had my yearly physical right after that and my doctor thinks I may also have diverticulitis. I’ve been referred to a gastroenterologist, but haven’t heard from them yet. The day of our move I woke to the all too familiar feeling of gnawing pain in my stomach, luckily it didn’t escalate to a severe gastritis attack, but it was a very uncomfortable day.

I can’t say much about the holidays because it is just a blur. I know they happened because of all the decorations in stores and specials on TV, but boy oh boy we sure didn’t have time to celebrate anything.

So now I am ready to say goodbye to 2019, and face 2020 with renewed hope and wonder. I plan to take each day as it comes, have more fun, and take things less seriously. I’m not going to make up a bunch of resolutions I probably won’t be able to keep, but I do want to face this year feeling a bit renewed. After all, I just moved into a new house, my life is drastically changing. I’m going to be changing places I normally do my shopping and even some doctors…because we now live on the other side of town. So much is changing, there is no need for me to make resolutions, things are just going to change naturally. However, I do plan to make some short term changes throughout the year. There are some things I want to try so I plan on doing some 30 day challenges for myself, perhaps some of them will last longer, I’m sure some won’t last the whole 30 days. For example, for 30 days I want to eat vegetarian, to meditate daily, to journal daily, to draw daily, to not eat out, to not buy anything new except food… Well that’s 6 months right there! I’m not going to be hard on myself if I can’t keep to these things, but I feel like if I put a short time frame on it then I can just try it out and see if it’s for me, who knows it may be something I just love and will keep doing forever, or it may be something I hate and quit in a week, no pressure.

I think that’s enough to get things updated and to get me writing again. It has been one crazy busy month! Not only have we been moving, during the holidays, I had 1-3 doctor’s appointments each week. It’s time to slow down and get this year started.

Happy New Year everyone! May this year be filled with love and happiness for you all.