Headache and Migraine Group: Let’s connect

Hi all, this is my first time posting here and I'd like to share my story to see if anyone has any insight.

I'm at 24 year old male that's been experiencing daily headaches for the past 2 years that vary in intensity. ~70% of my days are spent in a moderate-intense pain, ~20% are spent in mild pain and ~10% of my time is spent (mostly) pain free. Aside from my headaches, I'm healthy. I exercise a ton, eat relatively clean and don't drink / smoke. I have a healthy relationship with my partner, and a wonderful family.

Before I go into detail, I'll note I've had the normal checks, CT, MRI and bloodwork, all were normal. I also had a sleep apnea test and was normal.

My neurologist has diagnosed me with 'migraines'. That's all I know.

The best way to describe these headaches is like my head is swollen, I can feel something off at the back of my head, and it is almost like blood is struggling to flow to the front of my head, and it pulses behind my eye. It pulses, all day, almost everyday. It's not sharp or piercing, more dull. It's only every on one side of my head. It used to be mainly on my right side, but now moves between eyes. Generally the side I wake up with is the side it sticks with me all day.

Other symptoms include:
- loss of appetite
- nausea
- fatigue
- sensitivity to sound
- poor body temperature regulation (I get very cold or hot),
- ear ringing
- I sometimes get a 'fluttering' around my eye cavity where it meets my nose, this is hard to describe

The pattern is:
1. Go to sleep
2. Sleep ~8 hours without waking up once
3. Wake up, open eyes, feel something behind my eyes (this is hard to describe, but it's just a general discomfort)
4. Stand up, hear a whooshing sound
5. Pulsing intensifies
6. Pulsing peaks after ~2-3 hours
7. Near the evening, it will begin to diminish in intensity, but it's still there
8. Repeat step 1.

Before I go any further, I've NEVER had one of these headaches come on during the day. It is always when I wake up in the morning. I'm almost certain something is happening during my sleep that's causing these.

I've been prescribed a slew of migraine medications, none of which have worked and generally make it worse. Especially sumatriptan, that stuff ruins me. Tylenol and Advil no relief. I've been prescribed a couple anti anxiety meds, none have done anything.

Things that sometimes can provide relief:
- A nap. Even falling asleep for 20 minutes can just get rid of it, this is the only thing that can actually make it go away.
- Yawning (hard to explain, but I feel relief when I yawn)
- Intense exercise, if I go for a run / bike ride and sweat a ton, I may get some relief afterwards, it won't go away completely.

Areas of note:
- Around 4 months ago, I woke up with excruciating neck pain, and could barely rotate my head
- I can't drink alcohol, even if I had 1 drink, I get this headache amplified and am sometimes out of commission for 2 days.
- I hurt my back ~5 years ago when someone pressed on my spine. It gave me sciatic nerve pain that hasn't gone away really to this day and has caused a slew of issues on the right side of my body. I can still squat, but can't run due to knee pain and a tight hip from the back injury
- I have a high pain tolerance -- I recently broke my wrist and realized I barely had any pain. If I did, it was completely overpowered by my headache. I think this is what is scaring me now, since my wrist break feels like a little paper cut in comparison to my headache.

There's probably things I'm missing, but wanted to share my story as my doctors really don't seem to be that concerned with me, despite my quality of life being drastically reduced.

I try and remain high spirited, battling it everyday and continuing my daily routine. Some days it's near impossible though and I just need to lie down and hope tomorrow is a little better. After 2 years of wishing that, it's getting harder everyday to keep my chin up.

Thanks for reading, and would love to chat more with anyone who's experienced something similar.

Thank you. Jim

I think the injections are to:
Anterior Scalene
Posterior Scalene
Middle Scalene
Upper area of the Trapezius
Top ridge of Trapezius

My supplemental insurance doesn’t cover my copay until I reach a large out of pocket maximum. 🤷‍♂️

MOJO

Thanks for your story. Sharing some success is always good for us migrainers. I get Botox too. But, I'm curious where in the neck do they place the injections? Pls let me know. Thanks. Jim
PS: I'm on Medicare as well and have bought Qulipta. While Medicare won't pay it all, I have a supplemental prescription insurance through Blue Shield and that covers the co-pay.

Hello, I believe that I have commented on this group but never introduced myself.
I’m Jody, a 62 year old male, Marine Corps veteran, Deputy Sheriff K-9 handler/trainer veteran and stage IV cancer survivor. Among many post treatment complications chronic migraine is one of them.
I have been battling this migraine for 8 1/2 years and the pain level holds a 7-10 24/7.
Sumatriptan was my go to for 9 days per month but once I reached 60 years old I could no longer be prescribed any Triptans due to the risk of stroke they are known for.
Qulipta and Nurtec have a $400 copay with my Medicare so those are not an option.
I do receive Botox injections but it took approximately a year to signal any relief and then it only worked for approximately a year and then was no value.
However, for my last round of Botox my NP injected the entire dose into my neck. I felt relief within 30 minutes and it lasted 2 months. Now when I say relief I mean from a 10 to a 7 and I can gladly deal with a 7. I’m in my 3rd month and I am in the 9-10 pain range but I’m getting close to my Botox injections. I’m really hoping that the next round will do as good or better than the first neck injections.
I am finding that Bayer Back and Body will take the edge off from a 10 but I only take a couple per day and not every day.
Anyway I’m convinced that my migraine is caused by the damage the radiation has caused to my neck.
As for my cancer, I was in Stage IV base of tongue, throat and lymph nodes. I had too much cancer to consider surgery so I was hit as hard as they could hit me to kill it. So far so good!
I blame the cancer on the contaminated water I was victim to while stationed at Camp Lejuene in the early 80’s. The VA however denied my claim because I never complained about any of my illness while on active duty…keep in mind that was in the 80’s and my diagnosis was 8 1/2 years ago?! Anyway that obviously is a moot subject.
Anyway I’m hoping my experiences can help someone.

MOJO

I assume everyone has tried the CGRP medicines, like Vyepti and Aimovig. They seem to held me as a preventative. My problem is that I can't find a rescue drug that works. Triptans, and Advil don't help at all. Any suggestions?

Comments please

Had new daily persistent headaches for 35 years tried “every thing” to get relief, even the neuro transmitter

Hi, I am 69. I have had migraines from the time I was 4. At 15 the dr gave me what I thought was miracle pill. It worked. I decided to read about it (in the 70's pills would come with a long long paper stating what it is) well come to find out it was barbiturates. I flushed it away. My migraines were bad bed for 7 days no smell, or light and would throw up. As I got older they changed. It wasn't until 2021 that I took the Pfizer covid vaccine, now my migraines are really horrible. I get it for 3 days in a row. this year alone have gone in to get shots cause can't take the pain. Sadly no one knows what causes it and how to prevent it. I journaled for many years, no consistency and no way to put my finger on cause.

Hello, this is my first time here. I used to have terrible migraines that would last 24 hrs. or sometimes 48 hrs. Twelve hrs on one side and then switching to the other side. Food definitely was a factor but each person needs to learn which foods trigger migraines for them. Dr. Speed, at John Hopkins Medical Center had a list of possible triggers. I believe it was on the internet. Zaler