1. < Headache & Migraine

My story of headache and migraine. Alternatives?

Posted by giggles25 @giggles25, Apr 11 9:17pm

Hello. I am glad that I have found this group, and I would like to share my story.

I will be 64 on Monday, and until I got pregnant at age 40, I do not recall many headaches, and only one migraine. My dr at the time explained, that there was probably a hormonal component to it, and indeed this continued when I became memopausal and started getting regular headaches. Until 2018. I "had the worst headache of my life." Can't recall now if that was at night or not. They did a CT scan, and there was nothing serious fortunately.

From then on, I started getting viscious headaches, always either waking me up at night, or I would wake up with them in the morning. They NEVER started during the day. I also had a couple of migraines, but have probably not had more than 10 true migraines in all of my life, with nausea, etc. Another interesting thing is that I respond very well to caffeine, and frequently, after I have a cup of coffee and something to eat and then get moving, I start feeling better on my own.

I started seeing a Neurologist and respond well to Rizatriptan and Nurtec, but am very careful as I am afraid of rebound headaches. I was also not ready to start taking preventative meds. I wanted to know what the cause was of these nighttime headaches, as this seemed very odd. So I tried cranial PT, regular PT (there was definitely a stiff neck component), Chiropractor, acupuncture, sleep study (no sleep apnea but I do snore), saw a nerve specialist, allergist, all without answers or success.

I had a very stressful job, and had to stop working last year. I could no longer drag myself to work after an interrupted night with pain.

In the summer of 2023, I enrolled in the Migraine Relief Code program, a program run by a holistic Neurologist. She looked at my bloodwork, I had to take supplements, treat a leaky gut (which I don't think I had) meditate, and do yoga. This did not help either, although I did not follow the program to a T.

I started seeing a new neurologist last year, and she is very black and white. When I shared all of the above, she said, "they are just migraines." She also thinks that I have hypnic headaches, because I was always waking up at 2 am or 4 am with the headache, which was usually behind my right eye. She now has me drink a shot of espresso one hour before bedtime, and I started taking Amitriptyline. I started on 10 mg, and I am now on 40 mg. Initially, I went from daily headaches to about 50% reduction, but they came back to about 2/3 of the time. I do sleep better, thanks to the Amitriptalyne, and now seldom wake up in the middle of a night with a headache, but do have them once I wake up.

I saw the neurologist yesterday, and she said she can prescribe me something in addition, like a Beta blocker. Here is my concern: it seems from what I am reading here, all these poor migraine sufferers take drug after drug, which after a while looses its efficacy, and then you need either a stronger dose, or another drug. These meds are just band aids, and the brain has become over sensitive to triggers, and we are all in chronification.

I stumbled upon a new alternative provider on-line this morning: Kevin Wissman, "Tame the migraine" program. I listened to his spiel, and I like the ideology behind his program and of course he has several people give their testimonials, but the question is: would it help me?! I paid $3,000 for the other program, and it did not help me, but I am desperate.

These headaches have taken over my life, and I see no solution, nor do I look forward to the future living like this. Thank you for reading this.

Interested in more discussions like this? Go to the Headache & Migraine Support Group.

dlydailyhope | @dlydailyhope | Apr 12 6:45am

@giggles25
I like your username. 🤭

Your story is very relatable to me. My hormone changes (monthly cycle, pregnancy after years of infertility at 39, birth control and menopause) would trigger headaches and migraines with aura. Do you get aura? The weather also affects my headaches (when cloudy/raining). I can feel in my head when it is going to rain due to pressure changes.

I also drink coffee and think it helps because it causes blood vessels to constrict and put less pressure on the brain. NSAIDs and aspirin do the same for me but need to minimize taking them due to gastritis/esophogitis stomach erosions.

What type of work did you do? I worked in a desk job for over 30 years. Long hours and lots of stress. Did you ever get your cervical spine checked? I’m assuming you had your brain MRI with your neurologists. When I had daily headaches (would wake up with them) and disrupted sleep for long periods of time, I saw many doctors but wasn’t being fully/properly diagnosed.

Did your neurologist ever do EMG/nerve conduction studies on your upper/lower limbs? What other symptoms do you have now other than headaches?

I had cervical spinal stenosis, degenerative disc disease, radiculopathy (pinched nerve root/nerve) and myelopathy spinal cord flattening/compression at c5-c6 and had ACDF surgery. My daily headaches went away.

Any compression in your neck (spinal cord, nerves, blood vessels) can contribute to your headaches. It may be good to ask your neurologist to do a MRI of your cervical spine and refer you to an orthopedic spine specialist. I would not get anymore chiropractic adjustments until you learn more about what is going on in your neck.

REPLY
1 reply
giggles25 | @giggles25 | 6 days ago
In reply to @dlydailyhope "@giggles25 I like your username. 🤭 Your story is very relatable to me. My hormone changes..." + (show)
@dlydailyhope

@giggles25
I like your username. 🤭

Your story is very relatable to me. My hormone changes (monthly cycle, pregnancy after years of infertility at 39, birth control and menopause) would trigger headaches and migraines with aura. Do you get aura? The weather also affects my headaches (when cloudy/raining). I can feel in my head when it is going to rain due to pressure changes.

I also drink coffee and think it helps because it causes blood vessels to constrict and put less pressure on the brain. NSAIDs and aspirin do the same for me but need to minimize taking them due to gastritis/esophogitis stomach erosions.

What type of work did you do? I worked in a desk job for over 30 years. Long hours and lots of stress. Did you ever get your cervical spine checked? I’m assuming you had your brain MRI with your neurologists. When I had daily headaches (would wake up with them) and disrupted sleep for long periods of time, I saw many doctors but wasn’t being fully/properly diagnosed.

Did your neurologist ever do EMG/nerve conduction studies on your upper/lower limbs? What other symptoms do you have now other than headaches?

I had cervical spinal stenosis, degenerative disc disease, radiculopathy (pinched nerve root/nerve) and myelopathy spinal cord flattening/compression at c5-c6 and had ACDF surgery. My daily headaches went away.

Any compression in your neck (spinal cord, nerves, blood vessels) can contribute to your headaches. It may be good to ask your neurologist to do a MRI of your cervical spine and refer you to an orthopedic spine specialist. I would not get anymore chiropractic adjustments until you learn more about what is going on in your neck.

Jump to this post

@dlydailyhope I hope I am replying correctly!
Thank you SO much for your reply! I think you have hit the jackpot. Just read this article on Cervical nerve root irritation. It states: "In all instances the symptoms are aggravated by certain motions and positions of the neck. Sewing, reading, driving a car, or any occupation or pleasure which necessitates holding the neck in flexion, hyperextension, rotation or lateral bending for any length of time increases the symptoms." And " In most instances the symptoms are worse at night and the patients have difficulty sleeping." It also says that people are often diagnosed with migraines. I have noticed that my headaches often occur after doing Pilates with weights (though low weight), knitting, bicycling, walking the dog on a leash, who pulls, and holding a folder with music in it, in front of me. I did have a MRI of the cervical spine in 2022 with diagnosis some degenerative disc disease, and also: "no impingement of the spinal cord, or evidence of impingement of the nerve roots." However, I have often wondered, if this MRI showed everything. I have had some tingling of the hands, but not a lot. I am extremely reluctant to get surgery for this. My neurologist will give me a nerve injection in the occipital nerve next month. I can ask for an EMG/nerve conduction study, but which specialist would be the most appropriate to see next? A nerve specialist?? Spine specialist?? Thank you!

REPLY
2 replies
dlydailyhope | @dlydailyhope | 6 days ago
In reply to @giggles25 "@dlydailyhope I hope I am replying correctly! Thank you SO much for your reply! I think..." + (show)
@giggles25

@dlydailyhope I hope I am replying correctly!
Thank you SO much for your reply! I think you have hit the jackpot. Just read this article on Cervical nerve root irritation. It states: "In all instances the symptoms are aggravated by certain motions and positions of the neck. Sewing, reading, driving a car, or any occupation or pleasure which necessitates holding the neck in flexion, hyperextension, rotation or lateral bending for any length of time increases the symptoms." And " In most instances the symptoms are worse at night and the patients have difficulty sleeping." It also says that people are often diagnosed with migraines. I have noticed that my headaches often occur after doing Pilates with weights (though low weight), knitting, bicycling, walking the dog on a leash, who pulls, and holding a folder with music in it, in front of me. I did have a MRI of the cervical spine in 2022 with diagnosis some degenerative disc disease, and also: "no impingement of the spinal cord, or evidence of impingement of the nerve roots." However, I have often wondered, if this MRI showed everything. I have had some tingling of the hands, but not a lot. I am extremely reluctant to get surgery for this. My neurologist will give me a nerve injection in the occipital nerve next month. I can ask for an EMG/nerve conduction study, but which specialist would be the most appropriate to see next? A nerve specialist?? Spine specialist?? Thank you!

Jump to this post

@giggles25
It would be good to have your neurologist do an EMG/nerve conduction study of your upper limbs first to check for radiculpathy. This can help identify if there are compressed/pinched spinal nerve roots/nerves that control your arms. You could also ask them to do a MRI of your cervical spine with and without contrast since you haven’t had one since 2022. You may want an updated MRI of your brain if it has been more than a year.

You can then have your imaging/results sent by your neurologist to an orthopedic spine specialist for a consult to review your cervical MRI and EMG/nerve conduction study.

When was the last your neurologist did a full neuropathy bloodwork panel? If it has been a while, it would be good to check if anything is abnormal.

REPLY
mikaylar | @mikaylar | 5 days ago
In reply to @giggles25 "@dlydailyhope I hope I am replying correctly! Thank you SO much for your reply! I think..." + (show)
@giggles25

@dlydailyhope I hope I am replying correctly!
Thank you SO much for your reply! I think you have hit the jackpot. Just read this article on Cervical nerve root irritation. It states: "In all instances the symptoms are aggravated by certain motions and positions of the neck. Sewing, reading, driving a car, or any occupation or pleasure which necessitates holding the neck in flexion, hyperextension, rotation or lateral bending for any length of time increases the symptoms." And " In most instances the symptoms are worse at night and the patients have difficulty sleeping." It also says that people are often diagnosed with migraines. I have noticed that my headaches often occur after doing Pilates with weights (though low weight), knitting, bicycling, walking the dog on a leash, who pulls, and holding a folder with music in it, in front of me. I did have a MRI of the cervical spine in 2022 with diagnosis some degenerative disc disease, and also: "no impingement of the spinal cord, or evidence of impingement of the nerve roots." However, I have often wondered, if this MRI showed everything. I have had some tingling of the hands, but not a lot. I am extremely reluctant to get surgery for this. My neurologist will give me a nerve injection in the occipital nerve next month. I can ask for an EMG/nerve conduction study, but which specialist would be the most appropriate to see next? A nerve specialist?? Spine specialist?? Thank you!

Jump to this post

There is something called Neckgraine that my neurologist told me about. It's when a migraine settled in your neck. Interesting, huh?

REPLY
Please sign in or register to post a reply.