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…
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!
8 thoughts on “Being disheartened, and hopeful.”
It always cheers me up when I see you post. I love how you are so transparent. I’m happy you had relief and pray there’s more to come. Mindfulness Monday is lovely.
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a good novel, ever get lost in a story where you forget everything, where anything is possible, it leaves you feeling positive. Sorry for the pain you suffer,but I suffer from chronic pain at times, and I USE cbd OILS, IT helps,as does everything that clears my mind of anxiety, but for an experiment, and this requires faith, something that is growing, open the stories of Jesus, imagine you are sitting beside Him, imagine you feel His healing energy, imagine it enter you, I imagine it will help, well, brought to life when dead once, it works,stay healthy, amen… in a nutshell, you have help, learn not to worry, hope instead, amen
I’m so sad that you are still struggling with the migraine pain. We all struggle, don’t we?! But physical pain is one tough one. How is your vertigo? I am thankful that my vertigo is mostly under control with the steroid injections. I still get “slosh” head and the BPPV but the super nasty vertigo is gone. I thought when my husband was fighting brain cancer and then passed away in January that I would have attacks again because of the stress but thankfully I’m ok. I struggle with the pain of grief but I know brighter days lay ahead for both of us! Keep on fighting the good fight. You are doing awesome! Virtual hugs to you!
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Oh Deb I’m so sorry, I had no idea. I haven’t been doing the best job keeping up with friends since we moved to Tucson. My heart goes out to you. How are your children?
I’m glad this didn’t cause a vertigo flare.
Having to deal with that and grief, it’s rough. I was still having bad vertigo when my father passed.
I’m happy to say that my vertigo is much better too. I rarely have the full out rotational vertigo now, and when I do it doesn’t last long. I still have the motion vertigo, where you feel like you’re moving but you aren’t, and occasionally the drop feeling. That’s just freaky, I’ll suddenly feel like I’m free falling. I get that ‘slosh’ feeling from BPPV too, but if I straighten myself it stops. I also have vestibular migraines, so it causes vertigo, but still not as severe as it used to be. I’m very grateful.
You have the best attitude, it warms my soul. I’m trying hard to just take one day at a time, accepting it as it is, and practicing self compassion.
Is your email the same? I’d love to keep in touch more.
One of Stuart’s best friends died unexpectedly on Thursday, it really makes you realize how important it is to keep in touch with your friends and let them know you love them.
Gentle hugs my friend.
Love Wen 💕
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So sorry to hear that, Wendy.
I’ve been kind of low lately but for different health reasons, of course. Chronic illnesses that go one for decades just wear a person down. Trying to stay hopeful here, too. Hanging in there. Wish you the very best. You hang in there, too. hugs
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I’m sorry you are feeling down. I need to catch up on you. I’ve been pretty slack the last few months. When I couldn’t type for so long and was forced off-line it’s been slow getting back in the swing of things. So much to catch up with.
I’ll keep hanging in there too, I know you will.
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I so wish there was more good news, more steps consistently forward than back or being at a standstill for you. Thankfully there are things you are hopeful of that may help and I think it always helps to have hope. As many of us have learned, we also have to have patience. Though some of us, ahem, isn’t that great at it. 🤭
Also, you got your vaccine shot! Yay!
Mindfulness Monday sounds great. Do it at a pace your comfortable with and it will be wonderful to read.
Also, today I learned that this jazz hands emoji is actually hugs so many gentle 🤗🤗🤗 for you.
Much love to you guys and say hi to S. 😘
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The new medical device does sound promising — though I realize it will take time until it’s on the market. Anything that deals with the trigeminal nerve I find interesting. I wonder if it would be good or bad for my TN2. (the designation for non-zapping trigeminal neuralgia I previously called chronic or pre trigeminal neuralgia.
Since it’s suggested that reaching out to the manufacturer might help, perhaps, that too, could get you “short-listed” for receiving one when it comes on the market? I had a TENS unit and refill pads/neck adapter free for several years as a neurologist who had thrown up his hands about my pain, reached out to a company rep. Mind you, the tens unit eventually stopped holding it’s charge, and wasn’t super-helpful, but the experience of working with the company was positive, overall. Perhaps you have done that with the other items you mentioned?
Know I’ve been rather quiet in the communications department, too. Always sending good thoughts and hugs, even if not words, texts or emails.
I think mindfulness mondays — without any pressure on yourself — is a fantastic idea. I’m here to help “fill in” if you need me to again.
So, woo hoo about the vaccine. I’m scheduled to get my second (pfzier) on the 20th; Doug on the 21st.
How was the migraine retreat?
Love, as always.
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