Headache and Migraine Group: Let’s connect

Do u get the Botox shots in your neck or head?

Hello everyone! I have been so interested in reading all of your stories. I totally agree with the comment somewhere, “aren’t we a mess?” For all of my life I have felt like I was a mess—
now I at least have company!!!
I told my migraine story back in the Qulipta discussion, so I won’t repeat it, but after reading many of your stories, I felt compelled to ask if others have been checked for sleep apnea? I thought it was worth me mentioning because so many of you develop your headaches at night. I have been on a CPAP machine for years. Although my migraines still persist, it certainly helps me to sleep better and at least it’s not ANOTHER drug!
I have also had nerve oblation in my neck and have a fabulous PT who does deep tissue massage, ultrasound, and dry needling. These give me great -although short lived- relief.
Thank you all for sharing your stories and your knowledge!

Hey Margarite,
I was getting Botox to my head and face but it stopped working so she gave my last prescription to my neck. I had the best 2 months in the past 8 1/2 years! My pain level was holding a 7 but this month has been a 10+. I get another round on Monday so I’m hoping I get another couple months of 7’s!

MOJO

sjd416:
First, I am so sorry you are going through this nightmare, with the rest of us. No one wants to suffer through life this way. I have been a Migraineur since a motorcycle accident when I was a teen. TBI with neck injury and this horrible pain began, "the gift" that keeps on giving! ugh! I too am affected by Barometric pressure changes, Rain and tropical/hurricane storms, dramatic temperature changes, extreme hot and cold weather are all triggers. In Florida our triple digit heat index has nearly taken me out with daily migraines.

I tried fasting on liquids for 40 days, no change in the frequency or depth of pain of the migraines; so I know food is not a trigger. Caffeine will actually help a morning migraine to a degree, so my cup of coffee is a blessing!
At this point, after trying everything from migraine abortives (I can't take any longer), preventatives, even Migraine Nerve Decompression and Excision surgery, Occipital Branch Injections, RF, Cervical Facet Injections - there is no cure.

Migraine is a "lifetime sentence with no hope for parole" All we can do is find ways to mitigate the pain as much as possible. I use Tramadol for my neck, which in turn does help keep neck pain and tension from triggering a migraine. That cuts about 3-4 back each month I use Xanax to help with the Occipital Neuralgia, those neves when inflamed, make me feel as though I am being electrocuted to the neck, head and spine. Muscle relaxers tore up my stomach and I stopped those years ago.
I do have a "rescue" medication, I save it for when the "Migraine Monster" is so bad it feels like the claw end of a hammer is hacking out my skull while simultaneously an eyeball is getting ripped out. There is no physician out there who understand the depth and the scope of this pain, until the "Monster" comes for them.
The rescue medication is a pain nasal spray called "Butorphanol NS" , normally within 15 minutes after spraying it in my nose it can take me down from a 10+ pain score to a 3-4 pain score. However, there are side effects, sleepiness and sometimes racing brain. It will not make you feel normal, nothing is going to; so we have to accept that "normal" days just show up when and if they do. That said, you can make it through doing some inside chores, for me that is a ton better than laying in bed in agony wishing I would die. Hang in there! Kasey7

Thank you for sharing, and I’m sorry to learn what you’re going through. Good that you are getting some relief from Butorphanol.

Migraines started for me when I entered menopause. Before then, I didn’t know what a headache was. I thought there was something wrong with my right eye since the pain was in that region. I was seeing a neurologist for degenerative disc and joint disease when I brought up the ’face aches’ and started Emgality. This took me from 3-4 migraines/week to 3-4/ month. Then it stopped working and I started new medications until they stopped working, and so on to trial and error

I was also taking Tramadol and still do for the arthritis/degenerative disc disease. I had previously been taking nearly 2,000 mg./day of ibuprofen for the arthritis, setting me up for kidney disease, when my doctor started me on Tramadol. Now I get raised eyebrows and recommendations to lower my dosage of 100mg 3 times daily from my providers. It’s interesting that Tramadol helps my arthritis, but does nothing to relieve the migraines. I’ve also received epidural steroid injections (for the arthritis pain), once with great success until it wore off, and again with no results. It’s turned into a game of hit and miss. I hate spending my days with migraine in bed, cancelling plans, etc. The ‘monster’ came to visit last month, landing me in the ER, and five days inpatient while they tried different meds. I was sent home with three different meds. One of them, Depakote, appeared to be working until the side effects kicked in. After five days of taking it at home, I discontinued it without even consulting my doctor. Now I’m taking physical therapy to restore my gait and balance. I’m happy for those who are getting relief from it, but I’ll never take it again.

I was still taking antibiotics for the UTI; after hearing several doctors and nurses tell me that ‘monster’ migraine might have occurred due to the UTI, I started to believe them. If bad weather can bring on a migraine, I suppose an infection elsewhere in the body can do it too.

Something that frustrates me is my inability to get a nutritious diet on the table. I’m certain that fruits and vegetables, etc. play a role in well being. My husband, who is otherwise very supportive, only knows how to make pancakes and hamburgers. It feels like a triumph when I can cook a simple healthy meal. At the grocery store, I went to get some cherry tomatoes - $6.99 for a small package, so I bought the $1.98/pound regular tomatoes for sandwiches and to incorporate into a simple hot dish that we both like.
Something I’m grateful for in addition to having a great husband: our cat gets on the bed and sits close by when I’m having a migraine episode. It’s so comforting.

Thanks for reading. It’s been therapeutic putting this in writing. No individual is on an identical journey with migraine, but there are so many similarities that I can relate to what you and others are going through. Take care. SJD

SJD
Thank you for sharing. It is comforting to know there are others who understand this road we are on. When you mentioned nutrition it made me smile, I had just been thinking I am not getting enough vegetables. Not that it would change the migraine situation but for my overall health. I have basically been eating peanut butter and jelly or a bowl of cereal since my husband passed away 20 months ago. I haven’t wanted to cook and of course when in migraine that’s impossible anyway. The days are too long and empty and I feel like I am in quicksand. The more I try to get moving the further I sink.
You are so blessed to have your husband, even if pancakes and hamburgers are his only kitchen gifts.😇
I have two cats now, they are company. At least it’s only two and I won’t be called the ‘cat lady’😇
Try to find whatever joy you can and on the ‘good’ days get outside in the sun and breeze. Blessings, Kasey7

I am so sorry for the loss of your husband. I don’t know what I would do if my husband wasn’t here. I hope you have friends and family to talk with and to help out. Or a professional counselor. I smiled too at the cereal and the pbj sandwiches. I’d love to make a nice breakfast, but I eat cereal for breakfast too. And my share of pbj’s. When i do food prep I chop vegetable, etc. so I won’t t have to prep them for each meal. And when I cook, I make a lot so it goes for 2-3 meals. And then I have to lay down afterward.

Thank you for your good advice to get outdoors. It’s in the 90’s and humid where I live right now. I understand what feeling down and stuck is like too. I didn’t plant my annual container garden this year, but there is still a little time to do some. I put my pots on the deck so the deer and rabbits won’t eat them. Containers are easier to keep watered and fertilized on the deck. I had to cancel a trip to visit my son in Atlanta when I was hospitalized, and hope to try again for a Sep visit. He had migraines too when he was in high school, and they stopped when he started college.

I hope you start to have more good days too. Peace and blessings to you as well. SJD