New Daily Persistent Headache

I have had a headache/dizziness for 6 yrs/3 mos. every day/all day. Nothing has worked. I have had 6 blood patches in my spine, every single migraine medicine, nerve blocks, Botox, off-label medicine, on and on and on. Ice is a distraction. I cannot drive. Don't leave the house. I am so sorry you are dealing with this.

@mikaylar I get migraines and thought that was bad. My goodness you have been through it all. One tiny tiny thought. Have you had your vision checked lately? And wondering, why so many blood patches? You had spinal surgery? Also, have you had a workup for Meniere's disease? It would be a long shot perhaps.

@lyndsieguzek,
My head pressure is from top of brain pushing down, 24x7 headaches/ migraine last 5 years. I found correlation between the weather atmospheric pressure (up or down - weather app) and pressure on brain. Been working with Neurologist (CT Scan and blood work) and now added Immunologist (additional blood work) to figure out.

Had major sinus surgery (2 ENTs, 1ENT assistant, 6 hours computer GPS guided), Dry Needling on back top neck muscle 20 weekly sessions, Vision checked - minor adjustment to prescription. Many moving pieces to the picture.

I had first Vyepti Infusion (once every 3 months), Wonderful. Pain level of 8 down to 4, which increased to steady 6 after 30 days. Note: The two previous Migraine Infusion, very strong, but little relief.

It’s a journey, Best Wishes for Your Journey!
🍀

I see a neuro eye doc every 3 months for my glaucoma and macular degeneration. Seeing her tomorrow to see if she will agree for me to start a new med for my headache. I always check with her in case it would affect my eyes. Blood patches were because they were suspicious of a leak in my spine that would cause a headache.

But you did not have any invasive surgery on your spine?

The thing that helps my chronic headaches the most is seeing a physical therapist twice a month now. When my headaches are bad he does myofascial release therapy and whatever else seems to be an issue in my neck, back or shoulders. I don’t tolerate the new migraine prevention meds well so I am using a natural protocol. I have fewer migraines.

@bswpb I am curious what your natural protocol is? I have been referred to PT by my neurologist and plan to seek treatment soon. I have been going to a chiropractor for a few weeks, and he released me from his care today as the treatments were not helping.

I am on 400mg of magnesium glycinate (just started) per day. My doctor wants me to start on a daily med after finishing a steroid pack (I am on day 3 of 5 with no relief yet) if the steroid does not help bridge me over this head pressure. The daily medicine is amitriptyline, starting slow at 10mg. I am very weird about taking medications - but I really need relief. I am on week 7 of chronic pressure and its sometimes frightening and disorienting.

I am also beginning to wonder how much my anxiety plays into the pressure because it seems to amplify when I am in stressful situations...

Thoughts?

@mikaylar Of those things, did anything work? Even for a short period of time? My neuro mentioned botox but didn't refer for that treatment just yet.

Not one single thing.

Hi Everyone, I have read most of the comments and I feel terrible for some of you who have to deal with things I have never heard of and you have to endure. You are actually so powerful in your own right to live with them and work with them. Life is not easy.
I suffer from mild to very bad neuro type headaches daily. For the last three months. But have had headaches ever since my brain aneurysm. I have had a clipping of one Aneurysm in 22. Then in 24 I had been diagnosed with osteomyelitis from that first operation. Then I had the mesh put in August 24. Three months later. After that I got sepsis from left in stitches. Two got infected. Then I got it again a few months later. Now a year and three months later I am getting those strange headaches that come and go all day long. Sometimes they never leave. I lose feeling in my lips. Exactly how they were when I had the osteomyelitis before. I have had all the testing but found out if you don’t get the top of the line Pet scan they can’t really see the osteomyelitis as It hides in the mesh. I went to JH initially and found after three years they really don’t follow up on me or give me the time of day. They are very good at the gate. Very good. Excellent with dealing with aneurysms but now I look back and they really did nothing for me after the fact of following up and making sure I was ok. I was so not ok and went through some bad times. Too many infections later I’m moving on to the Mayo Clinic in Rochester. The best. And I hope they can help me. I know if I have any inkling of osteomyelitis hiding in that mesh I’m back under the knife. That would be devastating for me. It seems there are a lot of people going through so much in here. We all are our own advocates. Stay strong. You are all amazing.