My Migraine Nightmare With Hope
I’ll start my story by saying I’ve dealt with head pain and “funkiness” nearly all my life. By the time I was entering my 40’s I had learned to accept I would always have days where my head wasn’t right. I had stopped seeing doctors a decade earlier because nothing really helped. However my life and my “migraines” were about to explosively change for the worse…
I was almost 42 and my family was headed to Kauai for one last big winter family vacation before our children entered into high school. We were on the plane making our final decent when my head started to fill with unbearable pressure. I had experienced some light uncomfortableness before due to cabin pressure changes this was similar just more intense. I tried chewing gum to pop my ears and it didn’t help. I had no choice to just bare through it hoping upon landing I would feel better. Except it didn’t go away. Not only was there pressure but nausea, dizziness and just a sense something wasn’t right.
I didn’t sleep well that night which was usual considering I was listening to the Hawaii rain, waves crashing and early morning doves cooing. I woke up feeling ok but shortly after waking up I started to feel the pressure again. I decided maybe I had a cold and started taking decongestants which didn’t help. The head pressure continued to plague me for most of the trip. I noticed a couple of things I found odd that didn’t quite fit congestion. When I went swimming in the ocean I felt fine and laying on the beach I felt good but upon standing I just felt heavy. One day we drove up the Waimea Canyon, I braced myself that the drive up would bother me but the opposite happened I felt really good! I enjoyed a pain free day of exploring and hiking. However driving back down to sea level was a nightmare. I never experienced such pressure in my life. It was so uncomfortable.
Eventually I did feel better and enjoyed the last couple of days relatively pain free. I chalked it up to having congestion that the plane ride irritated. Back home I went on with life but started noticing my headaches were getting closer together. I’d take a Tylenol or ibuprofen and move on.
About 8 months later right before school started we went to Disney Land with our children and friends. I decided to be adventurous and brave every ride multiple times. To this day I believe this really set off my medical complications. Once home I was having really bad tinnitus, my heart was fluttering and racing, my headaches were daily, major fatigue to the point some days I was sleeping 18 hours a day. I was trying to maintain a part time job, be a house wife, and organize a hectic lifestyle with 2 teens heavily into sports. I found myself struggling where I used to flourish. I was forgetful, disorganized, tired and just not feeling right.
Eventually I knew I HAD to see a doctor but I didn’t have a family doctor. Despite my frequent headaches I was very healthy. I found young doctor just starting a family practice. He was kind and listened to my story. He ordered labs noted I had a really high heart rate and mildly elevated blood pressure but decided to not prescribe anything just in case this wasn’t my normal. From here I’ll have to condense my story a bit because it took a while to develop a relationship with my new doctor as well as establishing lab work. My doctor noticed my calcium would bounce from high to normal, my vitamin D was extremely low and my blood pressure was mildly high with a pretty high heart rate around 120 bpm. He put me on Metoprolol and referred me to endocrinology. The Metoprolol did help my daily headaches but did nothing to control these episodes of intense pressure in my head. This head pressure was quickly becoming my number one complaint to my laundry list of symptoms.
Eventually I was diagnosed with hyperparathyroidism and told I would feel much better once the benign tumor causing my high calcium was removed. I looked forward to having surgery! My actual migraines at this point were lasting anywhere from 3 days to 6 days of sheer utter agony. Also every couple of months I would be bowled over with extreme pressure in my head that would last several weeks. I was tired, in pain and miserable!
I had surgery in early October of 2014. I woke up feeling great, my head was quiet for the first time in over a year. No roaring tinnitus. I had HOPE! Unfortunately, this is not the end to my journey and in many ways my beginning. About 3 weeks after my surgery my blood pressure plummeted! I was used to having blood pressure around 140/95 and suddenly it was 85/65 my head was screaming in such pain I could hardly stand it! My doctors did a quick wean off the Metoprolol and told me to give it some time to stabilize. I was now experiencing that head pressure every night! Almost like clock work around 5 pm I was hit with pressure and just feeling down right awful! I couldn’t sleep, my heart rate was always at 120 while standing, The headaches were sheer misery. My doctor thought maybe I just needed sleep. So he prescribed me Trazadone. The Trazadone made me extremely dizzy and did nothing to help me sleep. I was frustrated and stopped taking it.
I started to notice I was having double vision and heavy blurriness at random times so I saw an ophthalmologist. I was put on a glaucoma watch and started bi yearly visual field testing. The ophthalmologist suggested I ask my pcp for a brain MRI. Of course the MRI came back normal. My pcp was very concerned with my high heart rate and low blood pressure so he referred me to cardiology. He also sent me to an ENT to check my ears. They were so full of pressure. The ENT thought I had eustation tube dysfunction and prescribed Flonase for 4 months. If that didn’t work she told my pcp to send me to neurology for “Migraines”. My cardiologist did a full work up with a 2 week heart monitor, ekg, ultra sound and lots of blood work. All came back normal except I had unexplained sinus tachycardia. For the FIRST time I realized my head pain was positional. While I was wearing the heart monitor I was told when ever my symptoms spiked I should press the record button. This is how they caught the sinus tachycardia. However the cardiologist blew it off as nothing. While disconcerting this actually may have saved me years of misery. I’ll circle back to this in a bit.
At this point I was finally referred to neurology, where I was assured I suffered from migraines. This started me on a path of trying migraine medications. One after another we tried and most gave me intense side effects and I was eventually told I had autonomic dysfunction and finding a migraine med was going to be difficult. I’m now at 3 years into my journey. The head pressure is daily and starting shortly after I get out of bed. My more classic migraines are now twice a month and lasting nearly a week each. The peak of pain for those migraines were so painful I would crawl to the restroom as close to the floor as I could be resting every few feet from pain and weakness. My family was freaking out not knowing how to help me. I would “ride” through these migraines in a very desperate state. Somedays even when my head wasn’t too bad I could be hit with intense nausea. I was no longer working and just existing hoping to find a cure. My family doctor probably saved my life because he never fully believed I had just migraines. When a neurologist told me I had migraines he would referred me to a new neurologist. On my 5th neurologist( around my 12th specialist) the doctor listened to my story and for the first time I was asked how does position effect my head. I told her when I lay down I either feel fine or I feel much better. She told me she thought I might have a spontaneous spinal csf (cerebral spinal fluid) leak. I hadn’t heard of a csf leak. I was excited to be told this might be fixable!!! She ordered a full spine MRI, CT myelogram and a cisternogram as well as opening pressure and cerebral spinal fluid sample to run labs. I went home and googled csf leak.
I was shocked! This one condition could explain all my symptoms! My migraines, my head pressure, my high heart rate, my autonomic dysfunction, my facial pain, my ear pain, ear pressure, tinnitus and hearing loss, my nausea, my visual changes… everything was there. Going back to my high heart rate it’s called POTS. I had acquired POTS (postural orthostatic tachycardia syndrome) and autonomic dysfunction from my csf leak. Had my cardiologist known about POTS I likely would have been given this diagnosis which isn’t curable and I could have struggled and suffered for a long time. I knew instantly I had a leak. I felt it in my deepest soul. I then ran across a video on YouTube called The Mystery Headache by Dr Ian Carroll out of Stanford. I knew at that moment from Dr Carroll’s video my scans would likely be interpreted as normal. So I braced myself. Sure enough all my scans, my csf labs and my opening pressure were all normal. I had 2 paths I could take, fight with my doctors for a blood patch, or see Dr Carroll. I don’t live in California but I decided in my state with the amount of pain I was in I didn’t have a lot of fight left. The little energy I had was simply to make it through each day. I was tired of hearing everything was normal and I just needed to try another horrid medication with horrid side effects. So I asked to see Dr Carroll.
Dr Carroll turned out to be a very kind and compassionate doctor who is dedicated to helping people with spinal csf leaks. He was among one of the first doctors to suspect some POTS patients were being misdiagnosed. He looked over my scans and yes they were normal. He explained it wasn’t uncommon to have normal scans and he would have to “hunt” to find my leaks. He continued to look for evidence of my leak something concrete and on my cisternogram he found it. I had very early bladder uptake. Which means the tracer injected into my spine enters into my bladder through the venous system that absorbs csf. When you leak you absorb at a much higher rate. He felt confident I was leaking and scheduled me for my first blood and fibrin glue patches.
He felt my leak was likely in my lumbar spine and I had a couple of areas that looked suspicious for a leak. My first patch was with blood and fibrin glue. He had me lay flat for 3 days to help my dura heal. The dura is the tissue that holds csf in its place. Afterwards I was still leaking but feeling better. My second patch he reinforced my first patch with more fibrin glue. What happened next I was not expecting I went into what is called RHP or Rebound Intracranial Hypertension. RHP is a temporary condition that sometimes happens after patching when the leak is suddenly sealed. This was the most painful thing I can’t even explain how bad it was! My head pain was now in reverse of my leak and now I COULDN’T lie down without the pressure and pain building. I was put on Diamox. However 4 days later my body decided to reject the Diamox and I wound up pretty severely dehydrated. I was admitted into the hospital to recover. Eventually the pressure built up so much I started to releak. This started a new chapter in my life of being patched, RHP, medication to control the pressure and eventually releaking.
But I was starting to get the hang of controlling the pressure. I was now using a potassium sparing diuretic along with Lasix. The two together did a decent job of controlling my high pressure and I would start to feel really well! So well I could see, taste and feel the light at the end of the dark tunnel! I wanted badly to get out of that tunnel and back to a full life. I life without daily pain. But my dura just wont heel long enough and I releak.
7 patches later, and now 6 years in, I’m feeling much better! I still have a ways to go but I’m getting there. I rarely have those intense migraines. Generally now they are abortable. Sometimes I can even get them to go away with caffeine and laying flat, sometimes I use my rescue meds. The pressure is much less intense. Still a lot of nausea. I’m sort of at a new crossroad where it’s believed I’m making too much csf while leaking at the same time. I’m giving it some time but may eventually need a shunt and then my doctor will fix my leak. The shunt should keep the pressure off my leak so my dura has time to heal. Or I may need spinal surgery. Neither are things I want but I’m so happy I can get better. I’ve surrounded my self with doctors that understand so I feel pretty confident I’ll get better! I have so much hope!
Right now I’m enjoying that I do feel better. I’m feeling much much better. I’m very happy I’ve started this process to get better even though it hasn’t been easy!
Right now there are just a handful of doctors across the US specialized in spinal csf leaks. They are starting to find many patients misdiagnosed with other conditions like “chronic daily migraines”. Dr Carroll has a lot of great articles available to read that explain some of the misdiagnosis he encountered with his leak patient. His YouTube video called The Mystery Headache is fantastic. The Spinal Leak Foundation has wonderful up-to-date information on leaks as well as links to presentations given by all the leading experts.
Right now there is no test that can accurately diagnose a csf leak in 100% of patients that are in fact leaking. 50% of spinal leaks don’t show up on scans. 20% of spinal leaks don’t show any evidence of the leak on a brain MRI. Leaks can be spontaneous (like mine) or they can be caused by a medical procedure like an epidural or spinal tap. They may not start for several days even weeks after the procedure. Spinal leaks can lose the positional aspect most doctors recognize. This especially occurs as a leak becomes chronic. A patient may not realize at one time the head pain was positional. Another common type of headache is late in the day headaches. Maybe every afternoon or evening you start developing a headache but wake up feeling pretty good.
I hope you read through my story and maybe for someone my story will sound familiar. I hope I wasn’t too long winded. I wanted to mention Hyperparathyroidism because it also causes headaches and migraines. I do believe it accounted for quite a few of my headaches prior to that fateful trip to Kauai. It’s important to always get labs, to look over your labs. Lots of doctors do dismiss high calcium until it reaches a dangerously high level. It’s very well documented though that even mildly elevated calcium causes symptoms. It’s important if you see a mild elevation in calcium that you demand further testing.
I understand your pain and suffering. All of us that deal with head pain we are warriors. The pain we live through is challenging, gut wrenching and debilitating. However… don’t ever stop advocating for your self. If you aren’t getting the answers you want and deserve get a second, third, fourth opinion.
For anyone wanting to look into a spinal csf leak there is an at home test. It requires some patience with your family. The at home test is to lay flat for 48 hours. You rate your pain in the beginning after you have been up-right for several hours. Start laying flat. Then rate your pain every 12 hours. At the end of the 48 hours if your pain has decreased it may be worth considering a csf leak. It’s important to lay flat without a pillow because even a pillow can create enough gravity to cause the leak to be active.
While my journey isn’t over I do want to say I’m not typical. Most csf leak patients are easier to treat than myself so don’t be afraid to look into this. If you have it, it’s treatable! That gives me great joy and hope!