Vicious headaches, had to quit working. What to do?

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.

fizzywig | @fizzywig | Nov 11 7:46pm

In reply to @artistmom "I signed up in March 2025 and it was $7350 in Canadian dollars. I don’t know..." + (show)

@artistmom

I signed up in March 2025 and it was $7350 in Canadian dollars. I don’t know what that was in US funds at the time. And I’m pretty sure the price went up at the beginning of this month (Aug. 2025). Yes, it is extremely expensive. I couldn’t afford it. Not even remotely. But after talking to Dr. Kevin, I was pretty convinced that this was the solution to my migraines. Everything he said about the cause of migraine lined up with what my neurologist, naturopath and osteopath had said. But he was the first one to put it all together in one picture that made sense and he was also the only one with a plan that made sense to me for how to get better. Nothing any of them had offered had helped at all. I was convinced about his program enough that I was willing to take on a loan to pay for it, so I asked someone in my life if they would lend me the money. They said that if this ended up being the answer to my decade-long suffering, they would pay for it. No loan! A straight-up gift!! And it absolutely was the answer. I finished the program near the end of June. And my migraines are almost completely in remission. I say “almost” because a handful of times over the summer I’ve had a mildly threatening migraine. But I have the tools now to deal with it. And I know that if I keep doing the daily things he teaches, I will keep widening the buffer between me and migraine and someday, it just won’t be a factor in my life at all. I know that when you’re only seeing the advertising-side of the program, you might get the impression that Dr. Kevin seems salesy and “cagey” with the info. But I just can’t say enough about him and this program. He is so kind, humble and understanding. He really cares about each person in the program and limits the number of people in it at any given time so he can be available for very personalized coaching. The progress that each person makes is just astounding. If you want to get a sense of what he’s like, he does have a free version of the community. It doesn’t even hold a candle to the paid coaching. But you can at least watch a bit of his teaching. And once a month, he does a free Q&A call where you can ask him anything about the coaching or about migraine in general. And feel free to ask me anything else.

Jump to this post

@artistmom thanks for your lovely post. I too am convinced that the program would work but, there is no way I could ever afford to pay for it given my circumstances in life.
It makes me so sad that the difference between living a life finally free from pain and struggling on for the rest of your life - comes down to money and whether you are lucky enough to have it or not- as is so often the case.
I'm sure you aren't able to tell us very much about the course but I wonder if you would be able to just give us an outline of things we could research ourselves that may at least give some hope and help?
So happy you are finding what you need, I really hope it continues that way for you 😊
Jen xx UK

maxieg | @maxieg | Nov 12 12:29pm

In reply to @artistmom "I signed up in March 2025 and it was $7350 in Canadian dollars. I don’t know..." + (show)

@artistmom

Jump to this post

@artistmom, absolutely wonderful to hear about your success. And, be able to once again have quality of life.
Would very much like to know more about it. Where is the program? Thank you so much.

cindydeprimo | @cindydeprimo | Nov 23 9:28pm

Hi there!

Please, please, please read a book called Heal Your Headache, written by David Buchholz. That book helped my migraines so much.

After reading this book, you will discover that caffeine causes rebound headaches! This is why you are getting migraines at night! In other words, you are going through caffeine withdrawal at night, so you are getting headaches!

I also was medicating with caffeine, because it seemed to make the headaches go away, but then, I was getting violent headaches at night, so I would medicate again with caffeine in the morning. And the viscous cycle continued. After quitting caffeine, I had less headaches, and the ones that I did have were less severe.

I hope this helps! Good luck to you! 🙂

jessmigraine247 | @jessmigraine247 | Dec 3 5:04am

In reply to @summer25 "Can yo tell me how much Dr. Wissman's program costs?" + (show)

@summer25 it’s either 2500 x3 over 3 months or 6k if paid in full. I am probably starting his program soon any info anyone has would be very much appreciated.

Teresa, Volunteer Mentor | @hopeful33250 | Dec 3 6:28pm

In reply to @cindydeprimo "Hi there! Please, please, please read a book called Heal Your Headache, written by David Buchholz...." + (show)

Hello @cindydeprimo and welcome to Mayo Connect. I have also read the book you mentioned, Heal Your Headache by David Buchholz. It was helpful to me as well. It introduces the concept of "triggers." Many triggers come from foods, such as aged cheese, beer, and wine. Others are chemicals like caffeine. I also found it interesting that some triggers can be activities, such as certain action-packed movies.

I recall going to an art exhibit where photos were projected onto the gallery walls, changing periodically. I could only stay at that exhibit for about 10 minutes before I felt a vestibular headache coming on.

Besides caffeine, did you learn about any other triggers after reading the bookj?

taterjoy | @taterjoy | 5 days ago

I had horrendous daytime migraines almost daily for years undertreated; then I started having horrendous nighttime-only headaches (not migraines) 4 times nightly, the fourth being almost exactly the same time each night. I was at the ER often due to severe dehydration, vast swings in blood pressure (my normal is very low), severe head pain (felt like eyes popping out, ears popping off head); and I lost weight down to 100lbs.

Nocturnal headache attacks were finally diagnosed after years as hypnic headaches. Indomethacin plus Melatonin plus 1/2 cup coffee 1-2 hours prior to bedtime helped greatly, but my daily "daytime migraines" did not benefit from those therapies. After an ER MD worried about stroke risk, urged me to seek help at Mayo clinic, I did. Kaiser would not refer me so I applied and paid out of pocket but it was the best MD visit I ever had. Not only did Dr. M. Whealy help with migraine prevention, he said my nocturnal headaches are not hypnics but they are not in a known category. He categorizes them as a combination of hypnic and cluster headaches (the occur every REM cycle during the night). Though Indomethacin is a drug he prefers to never prescribe due to serious side effects, we found through experiment it is the only drug that (along with 1/2 cup coffee and Melatonin) that can prevent my nocturnal headaches 99% of the time. I now take a med to prevent gastric bleeding (can be a side effect of indomethacin) called Protonix.

I also have lumbar spondylosis and radiculopathy, and maybe that is radiating pain to the head at night? I also was diagnosed recently with "closed angle anatomical anterior chamber" of both eyes. I saw the surgical ophalmologist for the first time and he said he was surprised I wasn't having constant horrendous headaches. I told him I was before finding preventative solutions for daytime and nocturnal headaches (via my Mayo MD). There may be a condition of your eyes optical nerve "pressure" during the night triggering your headaches. But both of my eye pressures were low until this year.

I am very interested in hearing from anyone who feels their back issues are contributing to nocturnal headaches: are you using any special type of head pillow or body "pillows" or mattresses to that has helped to reduce the occurrence or severity of your nocturnal headaches? If so, I would appreciate knowing what type of pillows/methods have helped.

amg92 | @amg92 | 8 hours ago

Hi @giggles25!

I’m sorry you’re experiencing this.
I’ve had headaches my whole life and always been treated for migraines, gone from medication to medication and nothing ever worked. MRIs, spinal taps… you name it, I’ve had it at one point or another.
Some doctors back in the UK even told me to go to ER every time I had a headache so they would have a ‘record’ of them.

My pain comes out of nowhere and can be in full force in as little as 10min. Almost always located behind my right eye. It is an incredibly intense pain, like being hit with an ice pick. My eye often gets watery and the nose runny.
They last around 2 hours or so, and I find myself restless, pacing and desperate.
The pain often comes at night, after I have been in bed for 1 or 2 hours and it wakes me. I have several headaches a day and this can last weeks then I go into remission.

I’ve told this to every doctor I’ve seen throughout the years and always been told just migraines and we needed to find the ‘right’ medication.

And then around 3 years ago, the headaches came back and I went to a new GP (I live in Australia now). She listened and said she didn’t think it was migraines but cluster headaches.
Prescribed IMIGRAN wafers and referred me to a neurologist.
This is the first time I have taken something that has actually taken my pain away.
She also followed up, checking if it worked for me and how I was doing. I started using IMIGRAN injections (they work much faster) and has changed my life.
I’ve been with her since and even when I have not seen her in a while and I have been in remission she would check up on me.
Whenever I’m going through a cluster and I need repeats very often she even calls and just sends the prescription over the phone and bulk bills it so I don’t have any out of pocket expense.

Your headaches sound kind of similar to mines and I know how frustrating it is to be dismissed and ignored. But there are good doctors out there so stay strong.
It took years for me to get diagnosed and get something that worked so I thought to share with you, if this is something that sounds like what you experience it might be worth discussing it with your doctor.