In October 2023 I got a headache.  I still have it.  I was never one that suffered from frequent headaches before then, so this one was confusing and concerning when it was still there a few days later.  In my life, up until 2023, I would go months in between headaches.  They wouldn’t last very long and were hardly ever bad.  It was rare for me to have any kind of headache, especially like the one I’ve had for more than a year and a half now. 

But this headache was a beast.  It was intense, debilitating, and life changing.  The headache has always been only on the right side of my head.  Light or sound had zero effect on the pain level.  It made me nauseated.  It affected my vision.  I feel like at times it would cause me to lose concentration and not be able to complete a conversation.  I couldn’t focus.  I had short term memory issues when the pain was at its peak.  I have balance issues since this headache started.  And, maybe related to the headache, maybe not, I’ve passed out 6 or 8 times since the headache started.  I don’t think I’ve ever done that sober until recently.  Before going to the doctor, I got new eyeglasses in case that was the issue.  I also went to the dentist and had a broken tooth pulled.  Neither of those helped.  I knew the tooth pull wouldn’t fix anything since it was a previous root canal.  But I had to try, I was going on two months of continuous pain like I had never experienced before.  I was willing to try almost anything.

I made an appointment with a civilian doctor because my next VA (Veterans Affairs) primary care appointment was a couple months away.  I was prescribed some medicine that took the edge off, but it didn’t help the overall problem of a long-lasting, horrible headache.  And any relief was minimal and short lived with some pain still in the background.  When I finally got in to see my VA doctor, he ordered some tests and a CT scan.  Everything came back pretty normal.  Nothing stood out that would cause this kind of headache, although he did put me on blood pressure medicine for hypertension.  It didn’t help the headaches at all, but my blood pressure did come down to the normal range.  So, I guess that was good.

At my next appointment with my VA doctor, he ordered more tests, this time to include an MRI.  He also referred me to a neurologist through the Community Care program.  That means I could see a civilian neurologist quicker than having to wait for the VA to get me in.  This is where things started to happen.  This is also where things got more serious.  And by now the pain was having some very noticeable negative implications on my mental health.  I was not in danger of hurting myself, I want to make that clear.  But if God had decided to take me, I would not have argued one bit.  It was that bad.

The civilian neurologist I saw in February 2024 was going to inject me with Botox, apparently a common treatment for people suffering from migraines, which my headache was not.  Turns out, the referral was for Botox treatment.  First, she went over my MRI results and looked at the images on the CD that came with the written results.  But while looking at the images she changed her mind.  She told me, “I am sending you back to the VA to get a more appropriate neurologist.”  She meant that Botox wasn’t the answer for this, but it was still unsettling the way she said it.  She explained that the white matter lesions found in my brain from the MRI was more than a Botox treatment would fix and that the white matter was not the cause of my headache anyway.  And then she mentioned a couple things that the results could mean, including dementia at some point in the future.

I started doing a ton of research online typing the exact words from the MRI results into the Google search engine.  That didn’t help matters.  And it certainly wasn’t good for my mental health.  In the absence of answers, our brains will sometimes create explanations, whether correct or not.  And my brain was working overtime for a while.  Some of what I found in my research turned out to be correct in my case, but thankfully, much of what I found going down those many rabbit holes online was wrong and did not apply to me.  But there were still no answers to fix the headache.  I use “headache” in the singular form because it really is the same headache that started over a year and a half ago.  It’s not “headaches”, as in more than one or one that comes after the first one is finished, it’s just the same headache that’s been here this whole time.  It’s exhausting.

When I finally got into see the VA neurologist, things started going in a better direction.  There was a lot of trial and error in the beginning to see what would work, and we were trying everything.  I did end up trying Botox.  That did not work for me.  For the first night and the whole day after treatment, the pain was 10x worse.  I tried it twice, both times with the same results.  I tried the nerve block injection.  That was worse than the Botox.  I know it works for some people, but I will never do that again.  And then my neurologist referred me to the VA hospital in Birmingham, Alabama.  I drove up there and met with a neurologist, then later had video appointments with two others.  Their course of treatment after a few months of talking was to try a cervical epidural steroid injection because of the numbness and pain in my right shoulder.  I think we were hoping to see if the nerve issue in my shoulder was causing the headache.  It did help slightly with the headache, and the shoulder pain and numbness went away for a little while.  I will be doing that one again. But the headache is still here.

I think I’ve tried every medicine available, hoping to curb the headache pain.  The only one that came close to taking the headache away was Indomethacin.  I felt good for the three or four days I took it.  But then the side effects kicked in.  I will not share all the nasty details, but I will tell you that Indomethacin will do things to your stomach and intestines that will cause a scary amount of blood to come out while using the bathroom.  And that scared the hell out of me.  I discontinued that one immediately.  There have been other pills that probably work for some, but none worked well for me.  I do take a once-a-month self-injection called Ajovy (fremanezumab-vfrm).  This was the first medicine that helped consistently.  I’ve been on it for around six months and it helps greatly in managing the pain.  The number of debilitating headache days has decreased and the duration of the worst of the pain has gone down as well.  Still, nothing has alleviated the pain altogether. 

In the last year and a half, I’ve had half a dozen CT scans, a few EKGs, an EEG, a sleep study test, some kind of monitor I had to wear for 24 hours, three MRIs, and two MRAs.  I had never heard of an MRA until then.  The CT scans were worthless.  But the MRIs helped find other things not related to the headache.  For example, it showed chronic paranasal sinus disease.  And with that finding I was able to get surgery to fix my deviated septum.  That didn’t help the headache.  But I breathe and sleep a little better.  The MRA, which looks specifically at blood vessels, showed some slight narrowing of the vessels in my brain, but nothing that would cause my headache. 

While all the scans and tests and consultations found a few things here and there that were good for something, there has been nothing found to explain or cure the headache.  But my neurologist at the Pensacola VA always looks down every avenue that could possibly find something, anything.  She is proactive and cares about getting the best treatment and outcomes for her patients.  I know the VA has some good doctors that care, but much of the time going to the VA feels like being on an assembly line, just going down the line to whatever is next, on a time schedule, not always getting to cover all the patient’s concerns.  The VA is overwhelmed, I don’t fault my doctors, but that’s a discussion for another time. 

For whatever reason, my neurologist decided to send me to a cardiologist just in case something can be found there.  The cardiologist, who was through the Community Care program, didn’t understand why I was sent to him for a headache, but he said we would do a stress test and some kind of EKG type test with an X-ray that rotates around you.  The EKG stuff came out great.  The stress test, not so much.  The cardiologist ordered a heart catheterization based on the stress test results.  I know online when you Google it, it says a heart cath is “minimally invasive,” but I would not fully agree with that.  So, this heart cath ended up showing blockages and two dissections that will require open heart surgery.  The cardiologist said he is surprised that I hadn’t already had a heart attack.  I guess, fortunately, it was a good thing that the blockages weren’t bad enough to wheel me into the operating room right then and there, according to him.

My neurologist, Dr Sullivan, at the Pensacola VA is ultimately responsible for finding these blockages in my heart because of her willingness to look under every rock, go down every path, and think outside the box when it comes to treating patients.  Based on what the cardiologist found, it is fair to assume that a heart attack is imminent for me in the future unless we go in and fix the heart.  Could be tomorrow, could be a couple years from now, but it’s coming.  Either way, I will have surgery and get an extra 10-25 years of life. Honestly, I hadn’t planned on living this long or I might have taken better care of myself.  But since I’m already here, I might as well see how long I can go, right? 

Thank you, Dr Sullivan, and thank you to all the doctors that have played a role in what is going on with the headache and now the heart.  In reality, this headache saved my life.  Without it, I would never have known to have my heart looked at until it might be too late.  And know this: An EKG does not tell the whole story.  I had many EKGs, and they all looked good.  It wasn’t until I got the stress test that we knew something was wrong.  I remember a few times when the headache was at its worst, I prayed to God to take my headache- or me, it was that bad quite a few times.  If He had taken my headache, we might not know how bad my heart is. Be mindful of what you pray for.

Thank you for visiting Story of My Life today.  I know this was a long post, but I hope you take this to heart (no pun intended): Be proactive in your health and remember, not every medical test shows all the problems that may be there, listen to your body.  Good day, God bless.

Dave