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Headache and Migraine Group: Let’s connect
Headache & Migraine | Last Active: 2 days ago | Replies (65)Comment receiving replies
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.
Replies to "Hi all, this is my first time posting here and I'd like to share my story..."
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....
How horrible! I cannot imagine how you function daily.
Have you ever been told your headaches are “cluster” headaches?
You mention MRI. You also mention back problems. Have you had an MRI of your neck?
Have you been treated at a Headache Center where you have a multi faceted approach to diagnosis and treatment.
3 years ago I was having daily migraines. I now am practically migraine free, but it took over a year and trying several medications and treatments to finally eliminate the headaches.
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nicks
First, I want to say how sorry I am that you are going through this. This is a nightmare none of us want to live. This may sound strange, but has any physician ever prescribed Indocin for your Migraines? I ask because some of your symptoms, the swooshing sound, pulsing and pressure behind the eyes when you wake up can indicate a cranial fluid build up. I understand that you are very into athletic activity and I am sure you are probably hydrating like crazy. Indocin is used "off label" for Migraines. It's label use had been for Blood Pressure, however about 20 years ago this old school/old class drug was found to help certain migraines. If you have not had a physician offer it, you might want to do some research on the medication in relation to migraines and speak with your doctor.
I have been having 20-22 days of migraine for the last 20 years and migraines for the last 40. I was in a motorcycle accident with a TBI and neck injury, so I also have Occipital Neuralgia ( it's horrific neck pain with electrocution zaps through my head and body.)
I have done everything offered, even Migraine Nerve Decompression and Excision surgery, no win. I can wake up in the night with a Migraine or it can come on at any point in the day. My neck has arthritis now which triggers migraine a lot. I commend you for fighting the "Monster", at 70 years of age now, I had been losing the battle. I do have rescue medication that can drop me from a 10+ in pain, down to a 3-4 pain score in about 15 minutes. However, the side effects are weakness and acute sleepiness, so while the pain recedes, I can't go anywhere or drive. You could definitely look into that, (Butorphanol Nasal Spray)but your active life style would change dramatically, this medication is a narcotic. The fact that you even still have "a life" is a miracle in itself. Me laying in bed waiting for the meds to kick in is better than laying in bed wishing I would die from the pain. Hoping you find relief! Kasey7