A couple of months ago I began experiencing some severe exertion headaches that were definitely not migraines. A month of tests resulted in the usual outcome – doctors having no idea what’s going on and dismissing me.
This year was a busy one. I’d been spending the weekends overworking myself, trying to get my house ready to sell. I was later reminded by my TMJ specialist that I was doing things I definitely shouldn’t have been attempting (including overhead scraping and painting) with TMJ. I typically found myself wiped out on Mondays following these weekends, but I expected it because I knew I was doing a lot. So, when just a little exercise left me fatigued, I chalked it up to still recovering.
However, the next day when in the middle of sex I got hit with the most massive splitting headache, I had to question if something else was going on. It felt like the most extreme ice cream headache but on the top of my head and lasted for a couple of hours. This had never happened before. But, after resting it eventually died down and I continued with my day.
Then it happened again, and instead of just going away I was left with a feeling of massive pressure in my head. It felt a bit like massive sinus pressure but without the sinus pain. Additionally, that splitting headache would return anytime I exerted myself (bending over, straining in the bathroom, etc). So, I called the doctor.
My general practitioner was able to get me in pretty quickly, scheduling me before my neurologists office even called me back. They ordered up an MRI (and when my neuro called back they added in an MRA). Those tests showed no abnormalities. This was a good thing, as that ruled out the most awful potentials (stroke, aneurysm).
I was now a couple of weeks into this massive pressure, the splitting head pain continued with exertion (so I avoided exertion as much as possible), a constant feeling of hearing a wooshing in my head, fatigue, visual issues, nausea, and feeling light-headed. I finally got in to see my neurologist and his thoughts veered in the direction my research had lead me (so nice when those align) – Idiopathic Intercranial Hypertension (IIH).
What is Idiopathic Intercranial Hypertension?
Idiopathic Intercranial Hypertension (IIH) is high fluid pressure in your skull. The fluid in question is cerebral spinal fluid (CSF). IIH is primary, idiopathic means they don’t know what causes it. Alternatively, secondary intercranial hypertension has a known cause (medication, disease, malformation in the brain). These can be easily ruled out, and in my case had been.
Primary symptoms of IIH is the unbearable head pain/pressure (often included exertion headaches), visual disturbances, nausea, vomiting, light-headedness. Additional symptoms may include hearing a wooshing in your head, vision changes with movement, stiff neck, pain behind the eyes, exercise intolerance, and memory/concentration issues. If not treated, IIH can cause blindness as the pressure affects the optic nerves.
Diagnosing IIH requires a lumbar puncture to checked the pressure of your cerebral spinal fluid. Lumbar punctures are typically performed by a radiologist in an outpatient setting. You’re brought into a procedure room and they have you lie on either your stomach or your side and insert a pretty large needle into your spine to withdraw some of the cerebral spinal fluid. They send the fluid off for various tests but check your pressure during the puncture.
Following the test you are instructed to lay flat as much as possible for the next 24 hours. Moving around or sitting up too much can cause a massive low pressure headache. They also suggest drinking caffeine to help rebuild the pressure (as the removal of some CSF will reduce your CSF pressure). Of course, if you have high pressure you might not want to rebuild that pressure.
Is there a connection between IIH and fibromyalgia?
During my attempts to figure out what was going on with me, I attempted to research IIH a bit and stumbled upon a recent research article that hypothesized high CSF pressure as a potential link between IIH, fibromyalgia, and CSF/ME.
They pointed out the many overlapping symptoms of fibromyalgia, CSF/ME, and IIH, including neck and back pain (often radiating into the arms and legs), numbness/tingling, headaches, fatigue, and cognitive impairment.
The researchers point out several studies indicating that these symptoms are caused by CSF pressure on the nerve roots, compressing the nerves. Their suggestion is that slightly elevated CSF may be expressed as fibromyalgia.
This is strictly a hypothesis argument based on overlapping symptoms. The tables examining the overlap of symptoms are interesting and worth a look.
Could high CSF pressure be a factor in #fibromyalgia ? #IIH Share on XBut, where does this leave me?
I left the lumbar puncture with mixed signals. The radiologist told me that my pressure was actually a bit high. Great! That’s the answer. However, the number he gave me (18) was lower than what is generally considered high (20-25). I was confused… was he using a different measurement system? I had no idea so I had to just wait until I heard from my neurologist.
In the meantime, I spent the next 24 hours on my back… and that 24 turned into about 4 days when after I finally started trying to sit up I’d encounter a new massive headache. This happens sometimes and while it often resolves on its own, it can require a blood patch to correct. Crap. Of course, my neurologist was out of town!
By the time my neurologist finally returned that new headache had cleared up and so had the pressure I’d experienced prior to the lumbar puncture. Hmmm… that would seem to indicate that the amount of fluid/pressure that was removed was enough to reduce the pressure to an acceptable (to my body) level… seeming to indicate that it was IIH.
Except that when my neurologist finally returned I got a call from his nurse that my CSF pressure was NOT high. His suggestion, it’s probably just a new form of migraine. Up your gabapentin and continue on.
For what it’s worth, according to the research article linking IIH and fibromyalgia, there is some debate over the cut-off value for high CSF. There’s also some discussion that CSF pressure may fluctuate, such that while it may be high one day it may be lower the next (perhaps mine was measured on a low day).
Since then I’ve had the pressure return about once a week, but overall I’ve been feeling better and better. Of course, that wasn’t the end… why would it be?
The pressure was gone, but every time I’d attempt to stand up for any length of time it felt like my heart was going nuts and I felt light-headed. Generally, I’d also noticed that my blood pressure overall had been low throughout this craziness (and my heart rate had been running high). My GP referred me to a heart specialist and so far it’s looking like all is clear there as well.
Thankfully, that also finally seems to be calming down and I’m getting back to normal levels of activity (most of the time).
Through the first 4-6 weeks of this I really wasn’t able to work. I could barely sit up, let alone focus on the computer most days. When I finally started feeling better I had a ton of work to catch up on and I’m finally getting there.
The above was written in April of 2019. Since the spinal tap I’ve had a few pressure headaches, but none as not had a recurrence of the IIH headaches. Although, I’ve had some pressure headaches that got me a bit worried and one recurrence of the activity-related headaches, but nothing that lasted (thankfully).
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Natalie J says
In 2008 I was diagnosed with IIH.
In 2018 I was diagnosed with fibromyalgia.
Today 2020 – I’ve just been diagnosed with FND
I’m convinced they’re all interconnected.
Julie says
At minimum it would seem than FND and fibromyalgia are connected.
Katie Clark says
I’m having several of the mentioned issues related to Intracranial Hypertension (but not as extreme as what you had). I’m having an appointment with an ENT due to pulsatile tinnitus next week. I’ll mention this. Thank you for the info.
Julie says
You’re welcome and good luck. I hope you get some good answers and fast resolutions.
Elise Liles says
Hello!
My name is Elise I am (just now) 21 and have had 16 shunt revisions and I have two shunts for IIH.. I would love to talk to you more about it!! I first got sick at 14 with a OP of 45.. But my body cant handle anything over a 15 reason for the 2 shunts.. Again I’d love to talk to you more! Feel free to reach out or find me on facebook..
Elise Liles 16 brain surgery survivor..
Julie says
Hi Elise, thank you for reaching out. Sorry to hear you’ve been dealing with this as well. Interesting that your body can’t handle above 15. Awesome that you have a dr that figured that out and didn’t just ignore you because you were in the “normal” range.
Fanny says
I had IIH, my OP was 40. I think the best help is a neurophtalmologist. Take care
Krystie says
Julie, I also have Fibromyalgia, Endometriosis and tmj. For the Endometriosis I suggest joining Nancys Nook Endometriosis and Education. It is not your typical Endo support group but you have a higher chance of getting relief when you get your Endometriosis excised not ablated or cauterized.
MA Wilson says
Hi Julie and fellow Spoonies
This is the first time I have seen an explanation of those rather trying top of the head headaches. On top of all the muscle and nerve pain and general mental and bodily discomforts of fibromyalgia, this sudden onset agony can really be just about the far north of enough. Looking back, I think that a bout of unusual exertion involving heavy planters and bags of compost will have been the catalyst in my particular case. I haven’t carried out that task since, and I shall be avoiding the risky bits for the future. Forewarned is forearmed.
I trust that your own recovery from ICH is proceeding space,
Best wishes, Anne.
Wendy says
I have IIH, I was diagnosed at Duke by Dr Linda Gray. She is a neuro radiologist. She is amazing. I test in the high normal range but she does empirical testing. When she does the LP, which she does under a live CT, so there is no room for error, she adds in extra fluid to see how you feel and takes out extra to see how your symptoms change. Mine got drastically worse when.she added it and remarkably better when she took it away.
My pressure will build up causing severe pressure headaches then I will have a “blow out” at that time I have the worst vertigo attacks and severe vomiting and pain. It is horrific. Lasting hours and hiurs.
I’m on meds to keep my pressure steady now and it has been working for a few years now. sometimes it needs adjusting, but it works.
I’m grateful I don’t need a shunt.
I don’t know where you are, if you are anywhere close to Duke Dr Gray is great. if not she may be able to refer you to a dr in your area who works like she does. She works with people everywhere. Her whole name is Linda Gray Leirhe. Her husband is a Dr at Duke too so she uses her maiden name on campus. I think she will remember me if you talk with her. You can remind her I have Meniere’s disease. I did a piece of artwork for her.
I hope you can get answers.
My migraine dr treats mine now, I’m just taking methazolamide. I don’t know what kind of relationship you have with your migraine dr, but methazolamide is used for migraines off label, so they might prescribe it. Since it’s not too high it just might work.
Of course I’m not a doctor and I’m not recommending anything, just sharing what I’ve been through. Gentle hugs wendy
Julie says
Thank you for all the info. I’ve been doing OK since the LP. It feels like the pressure spikes occasionally, but usually just lasts a day. If it gets really bad again I will definitely be reaching out for better answers, and I will definitely hold onto this info for that time. I really appreciate it and I’m glad you are doing better.
Kristine Soetaert says
Did you get to see your MRI results. Both of my daughters have been diagnosed in the past 6 months with Chiari Malformation. They have similar symptoms to me. I have had fibromyalgia for 20 + years. Our neurologist now thinks that I have CM and not fibromyalgia. CM is often misdiagnosed. You might want to check the wording on your MRI and see if it mentions the tonsils of your brain. With CM they descend down below the skull. Not all neurologist call it CM if it is less than 3mm but the CSF believes if you are symptomatic you can have CM with less than 3mm. Just mentioning it because I knew nothing about CM until 6 months ago. https://csfinfo.org/education/patient-information/chiari-malformation/ Gentle hugs and wishes for improving health!
Kris
Julie says
I haven’t seen the latest, but I have my older one somewhere. They said the newest one didn’t show anything different than my previous one a few years ago. Of course, that doesn’t mean that it might not have said something minorly differently like that that was ignored as irrelevant to the current issues.
Gloria Van Nostrand says
Have experienced one lumbar puncture. Was hospitalized when this was performed. COLOSSAL HEADACHE ensued, even while remaining flat on my back. After a day or so, the Dr. that performed the lumbar puncture came by. Told him of the COLOSSAL HEADACHE, which had me in tears, and he told me to flip onto my belly. What a difference! Why I wasn’t told BEFORE that, remains a puzzlement to me.
That was 45 years ago, but I will never forget that headache, and how I suffered unnecessarily.
Anne says
I know this seems overly simplistic. But I’ve suffered similar pain/headaches and have found a strong correlation to dehydration. That doesn’t means it’s fixed by a few glasses of water but drinking enough water has help reduce the number of such events. I never got anywhere with Dr on it. Also have fibromyalgia and lung cancer.
Julie says
Not simplistic, dehydration can be a big issue. Drinking a LOT more water certainly helps me with fibromyalgia symptoms. It’s the one thing I know I can do on bad days to ensure they don’t stay. Needless to say I drink a crap ton of water, and can never be found without a 20oz bottle by my side (that regularly gets refilled).
Steve says
Jeez, Julie, sorry to hear of your hassle and pain. Somehow everything I get turns out to be caused by fibro, even if obscure-seeming. Maybe your pain is that also. “Idiopathic” always means “we don’t know wtf is going on.” Hope things get resolved fast.
Will send longer PM.
Julie says
I honestly believe that “it’s just fibro” is a cop-out that doctors use because they don’t know what’s going on. I’ve heard it many times, and often it’s not been the case. Other times, no answer is found, or I find an answer on my own that helps.
Julie says
Please have your ferritin level checked. I had similar symptoms.
Julie says
I actually take ferritin. When I saw the heart doctor that was something she mentioned – in connection with what she was looking for (and didn’t find).
Carmen says
I have th and Miniers syndrome and I got a concussion and now diagnosed with cranial hypertension. I read your words and they sound like I could have wrote them. I thank you. I don’t feel so alone.