Headache and Migraine Group: Let’s connect

Comments please

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?

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

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.

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

Thank you. Jim

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.

nikcs, Bless you. I empathize with anyone who battles headaches or migraines. I have a lot
of headaches (due to Fibromyalgia) and I have battled migraines since a child.

Here are some thoughts ok?

1) Do you think it's tension? You can have a tension headache every day as well as a migraine
every day. If so, do things that help you relax.
2) Have you tried heat packs with Voltaren Gel?
3) Have you tried a muscle relaxant? Do you have trouble relaxing? A massage sometimes
of your neck, shoulders and back can help with headaches. Also, (I have not tried this) acupunture has helped folks that I know with pain.
4) Have you been to a Neurologist to see if this is caused by your Trigeminal Nerve?
5) Do you have sinus problems or severe allergies?
6) Do you have a lot of inflammation in your body?
7) Do you have any cervical spine issues such as arthritis or slipped disk?
8) Have you had your Thyroid Levels checked? You can have trouble regulating between
hot & cold with Thyroid. An Endocrinologist could do an in depth bloodwork for this. I have
had more headaches since being diagnosed with Thyroid Disease.
9) Have you been to a Migraine Specialist vs your Primary Doctor?
10) Have you had COVID? I also have had more headaches since having had COVID.
11) Have you noticed certain foods that trigger headaches for you?
12) Do your headaches worsen with barometric pressure changes in the weather? This could
be migraine.
13) I have found not all Neurologists prescribe Triptans for migraines...yes, some folks cannot
tolerate them. There are other meds like Propanolol & Atenolol which are blood pressure meds that are often used to help with migraines if you are intolerant to Triptans.
14) Are you dehydrated? This can cause really bad headaches.
15) Have you been tested for sleep apnea?

I hope some of these ideas help you. I am so sorry you are battling these daily.

Praying for you to get relief. Blessings....

First time posting. Attempted to reply to member who mentioned taking Triptans plus SSRI antidepressants. It didn’t ‘take’, so I’m posting here.

I’m interested in a comment about taking SSRIs with a
Triptan. I had been using Ubrelvy for some time with little relief. After a recent hospitalization for the worst and intractable migraine I ever experienced, accompanied by a severe urinary tract infection, I received prescriptions for Nurtec and Imitrex when I was discharged. Those two meds aren’t taken together. I’ve used them on different days at migraine onset. I also take a monthly Ajovy injection for prevention; the effectiveness appears to be diminishing. I had the same experience with Emgality.

Nurtec doesn’t help; however, Imitrex usually relieves my headache within about a half hour. I’ve taken antidepressants for several years; perhaps that’s why Imitrex is working for me. It’s only been a few weeks since starting it, but I’m grateful for the relief with Imitrex so far. I hadn’t considered the SSRI connection.

I’ve seen postings relating to diet triggers for migraines, but haven’t connected them with anything I’ve eaten. I don’t use caffeine, cola or artificial sweeteners. Cheese and chocolate don’t bother me. My headaches seem connected to the weather, which has been awful this year. We have experienced a significant amount of rainfall, wind, followed by brief periods of pleasant weather, interspersed with chilly, cloudy days.

sjd416, Bless you. You have really been through it and I empathize. Migraines are terrible. So many things can be a culprit. I went for a long time and hardly had one and now I have
started back with them.

Does anyone in your immediate family have them? My dad had them.

I will be alternating Ubrelvy & Maxalt. Ubrelvy eased my migraine in 10 minutes. Ubrelvy
made me nauseous, so I am going to take Emetrol for nausea with it per my doctor. Nurtec
did not work for me. Zomig works the best, but, insurance will not cover it. I was on Imitrex
for years. My doctor then said you have to rotate migraine meds. I agree. I do find that
the migraine nasal sprays and dissolvable meds work the quickest.

I do take 200-400 mg of Magnesium Glycinate and Vitamin B2 for migraines. It took
a while to tell a difference, but, I do believe it helps.

I cannot tolerate any of the SSRI's for migraines at all. I find that if I take the Maxalt as
soon as I feel the first twinge of a migraine, lie down in a dark room with a heat pack, doze
off for a little while, I can get relief. If I try and stay up and keep doing things, the migraine
gets worse.

There is such a thing as a Migraine Cocktail at the ER. I have never had that, have you? Also,
there is a Magnesium Infusion for migraines a friend of mine received and he had great
relief.

A hot shower or soak in epsom salt helps with the soreness in the back and neck after a
migraine is over. I also use Volataren Gel on my back and neck with a heatpack....I have
a lot of arthritis.

I agree that the weather has been so strange this year. I have allergies and am prone to sinus infections, which triggers migraines for me. This was the hardest spring I have ever had.

I do have arthritis in my spine which triggers migraines as well. I find lack of sleep can cause
them as well.

COVID brought on some of the worst migraines I have ever had....I had a bad case of COVID in 2022.

I have had migraines since the 3rd grade. I use to throw up on the school bus with the headache.

I find some of my migraines are heat induced too. If the humidity is real high it will bring
on a migraine. I will usually get one when it is going to snow as well.

Foods that are a culprit are red hot dogs, soy, MSG, ham of any kind and homemade fudge.
I do believe sugar is a trigger as well.

Staying hydrated is very important and watching caffeine intake.

I am praying for you to get relief. Keep me posted. Blessings and you are not alone.