I’ve recently added two new diagnoses to my ever-growing list of chronic conditions so I thought I would share with you guys what’s been going on and see if any of you have dealt with the same conditions.
Click here or on the photo below to access my video health update.
As mentioned in my video, below are some resources relating to cerebrospinal fluid leaks and intracranial hypertension, and how these conditions are linked to fibromyalgia, chronic fatigue syndrome and Lyme disease.
Cerebrospinal fluid leaks aka intracranial hypotension
If you’ve been diagnosed with POTS (postural orthostatic tachycardia syndrome) or migraine, I would highly recommend watching Dr. Carroll’s video below. CSF leaks are often overlooked by physicians because they are rare and difficult to find on imaging. Many of Dr. Carroll’s patients recover after being properly diagnosed and treated for their CSF leak.
The most common symptom of a CSF leak is positional headache that feels worse when you’re sitting/standing and better when you’re lying down. The headaches tend to radiate from the back of the head to the front.
Dr. Carroll’s video below includes a simple at-home test that you can do to see if you might have a CSF leak.
What are the symptoms of a CSF leak?
The mystery headache – Dr. Ian Carroll, Stanford University (YouTube video, 88 minutes)
From the video description: “Many people who suffer with chronic migraine live with symptoms that are baffling — headache, nausea, neck stiffness, ringing in the ear — and all of these symptoms worsen as the day goes on as the individual spends more time in the upright position. However, symptoms improve as long as they are lying down. In this talk, Ian Carroll MD, discusses an often overlooked diagnosis that can be treated — spontaneous intracranial hypotension.”
Intracranial hypertension aka pseudotumor cerebri
In intracranial hypertension, there is often a feeling of fullness in the head, almost like your head is an overfilled balloon or you have a sinus infection with the stuffy nasal congestion. Other symptoms include neck pain, blurry vision or loss of vision, pulsatile tinnitus (a whooshing sound or hearing one’s heartbeat in the head), eye pain, jaw pain, nausea, dizziness, cognitive difficulties, etc.
Studies have linked intracranial hypertension with fibromyalgia and chronic fatigue syndrome. There also is a connection between intracranial hypertension and Lyme disease, according to my Lyme/fibro physician.
What is intracranial hypertension?
What are the symptoms of intracranial hypertension?
Is fibromyalgia caused by high pressure in the brain (intracranial hypertension)?
Does intracranial hypertension run rampant in fibromyalgia, ME/CFS and migraine?
Large spinal study finds intracranial hypertension common in ME/CFS
Chiari malformation (my new diagnosis)
What is chiari malformation and what are the symptoms?
From the International Chiari Association:
“The symptoms of Type I Chiari malformation can be similar to other disorders and can vary greatly from one patient to the next, making diagnosis difficult. The hallmark of this problem are headaches and neck pain, made worse by valsalva, coughing, sneezing and straining. The intensity of headaches and cervical pain can be completely debilitating. Fatigue is common and, as the condition progresses, patients may develop vertigo, tinnitus, nausea, dysphagia, impaired gag reflex, muscle weakness, poor coordination, restless legs, upper extremity paresthesia, dysautonomia and, in severe cases, paralysis. Often patients are diagnosed with fibromyalgia or chronic fatigue syndrome, which delays diagnosis of Chiari malformation. This is unfortunate because surgery can be very effective.”
I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
Curious, can you elaborate on how you were diagnosed and treatments? I hope the diagnoses have helped you towards relief! Thanks.
The chiari was found using an upright MRI. Migraine was a clinical diagnosis based on my symptoms. I’m still in the process of seeing various specialists so there is no treatment plan at this point. I have started Emgality injections for the migraines, and am also taking amitriptyline to help w/ headaches/migraines. I use A LOT of ice on the back of my head/neck.
Thanks for the valuable information.
HI Donna, Awwww I feel for you and yet I’m so happy that you finally got a true diagnosis. I wish you the best with treatment and becoming much better!
As I’ve written to you in the past I’ve had a post spine surgery spinal fluid leak that caused severe headache and hallucinations and took me several days of complaining/suffering while still in the hospital and trying to convince the surgeon that something was wrong. I will never forget that head pain!!
Fortunately, a blood patch repaired mine. But, your journey has been long and very tough! I am so sorry for all of your suffering on top of all else that you deal with.
RE: migraines….about 20 years ago I suffered from intermittent migraines. Imitrex had just come on the market and it didn’t help much. But, at one point I had a ’30 day’ migraine and my neurologist finally put me on Propranolol (Inderal) daily for a full year. They finally went away and aside from an occasional Lupus related headache I’ve never had another migraine.
I too have had a long journey, with chronic spine related pain, multiple failed spine surgeries, FM and Systemic Lupus.
I first found you about 5 yrs ago via the days when you would often write for The National Pain Report (miss NPR!).
Between the both of you I have received a whole new education on my conditions, that I never would’ve received from my doctors.
You have been an incredible supporter and teacher and I am forever grateful that you have decided to continue Fed up With Fatigue for as long as you can.
The best of all with obtaining disability. I’m sure it will all work out for you. You deserve that relief.
Always know that you have all of us out here cheering you on with Gratitude!
As always, Thank You for being wonderful you!! Keep strong and keep smiling Warrior! Maureen
Thank you so much, Maureen. It means so much to me to know that I’m helping other people in some small way. It’s what keeps me going and motivated. Big hugs to you!
Oh my gosh Donna, I am so sorry to hear of your latest diagnoses ! As if you don’t have enough going on already. I also want to thank you for taking the time to keep posting information that may help one of us. You are the best ! Hang in there!
Thank you, Kathy!
So sorry to hear about your additional diagnosis. I just wanted to share how valuable your blog is. You do an amazing job of posting and finding resources for us in the Fibro community. I look forward to it every week. I’m praying you can find some answers to help you.
Thank you so much, Kari! I really appreciate that you took the time to tell me that.
I was diagnosed with fibro in 2003 and spent years trying to find a treatment that worked. I finally saw my neurologist (who had treated my brain aneurysms) and he did a punch biopsy and diagnosed me with Small Fiber Peripheral Neuropathy. In 2019 I participated in his clinical trial and afterwards he prescribed infusions of Gammaguard. After some time I was prescribed Hizentra and have been on that for months with great results. My nerve function has improved measurably and my nerves are regrowing. I feel 100 times better, have renewed energy and much less pain. My neurologist, Tood Levine, MD, has co-written a book about this: Small Nerves, Big Problems available for only $20 through Hilton Publishing in Chicago. I have highlighted most of the text!
Some of your readers may want to ask if this diagnosis applies to them.
Thanks so much for the information. I have felt this way for years. And never had a diagnosis. Other than my sinuses from my ENT.
I’ve had fibro/chronic fatigue for over 20 years. I developed a spontaneous spinal csf leak in 11/1/2017 and still have it.
Oh no, Rachel. I can’t imagine living w/ a leak for so long. I am so, so, so sorry that you’re enduring that. It is miserable and scary and just a horrific health condition. That 6 months that I leaked … it was the most anxious and frightening experience of my life. Have you been able to see a leak specialist? Have your doctors attempted to patch you at all? If so, did they try adding fibrin and glue to your blood patch? That was the only way I could get patched … I had to have one w/ the fibrin/glue to make the patch more durable. My first 2 patches were blood only and blew within a few days b/c I went into high pressure immediately after both, and the doctor who did the first two patches here in Delaware refused to prescribe diamox to help get my pressure down. I ended up having to go to Johns Hopkins to their CSF center for the third patch w/ blood/fibrin/glue. There are centers that specialize in treating leaks at Johns Hopkins (Maryland), Duke (North Carolina), Cedars Sinai (California) and Stanford (California). I’m sure there are others, but those are the ones I’m familiar w/. Please let me know if there’s anything I can do to help. My thoughts are w/ you.
May I have the symptoms that you experienced while you had the leak?
Or is there somewhere I could read up on it? Thank you.
Hi Sharlene, this is a list of symptoms that I shared w/ my doctors when I had my leak:
*Positional headaches that occur upon sitting/standing, usually within a few minutes of being upright. Lying down reduces the severity of the headaches.
*Neck pain/stiffness
*Cognitive issues (inability to focus/concentrate)
*Facial/jaw pain
*A feeling of fogginess or pressure in the head (similar to how it feels when taking Benedryl).
*Nausea, dizziness, blurred vision, balance issues – all of these come and go depending on the severity of the headaches
*Headaches are generally dull in nature, but become more severe the longer I am upright.
*The headaches generally start in the back and bottom of the head near where the head and neck connect, and then gradually encompass the whole head if I do not lie down.
*There is sometimes a pulling sensation in the back of the head.
*Headaches are aggravated, in general, by movement such as stretching, bending, lifting, sneezing, etc.
To learn more about CSF leaks, I would visit:
https://www.csfleak.info/
https://spinalcsfleak.org/
I would also watch Dr. Carroll’s video where he discusses the symptoms of CSF leaks and how they are often confused with other medical conditions: https://www.youtube.com/watch?v=QyvWxobqKrc&t=5s
Good Morning Donna,
I have been recently diagnosed with POTS.I believe I have a csf leak after the spinal epidural in December 2019.I am wondering if you can ptovide me with the Doctor in Delaware?I am RN and I feel all of my symptoms are related to csf leak.I only have one symptom from Pots and that is elevated heart rate upon standing.Hope your doing well?I suppose to be going to Hopkins to the POTS clinic.Please let me know.
Best Regards,
Kay
Hi Kay, I would not waste any of your time on the doctors here in Delaware. In my experience, they know next to nothing about spinal fluid leaks and were incapable of fixing mine. I ended up going to the CSF Center at Johns Hopkins. The Delaware doctor who performed my first two patches in an attempt to plug my leak literally had to google “what’s the most accurate test to find a spinal fluid leak” right in front of me. THAT’s how little he knew about treating leaks! He didn’t even know what test to order! My first two patches failed b/c he didn’t understand that he needed to prescribe a diuretic to keep my CSF pressure down so that I wouldn’t blow the patches. The whole experience was just utterly frustrating, and I would not put anyone through that.
I would go to Johns Hopkins’ CSF Center: https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/cerebral-fluid/ My doctor there is Dr. Mark Luciano. He led the team that finally successfully plugged my leak after 6 months. Sometimes Hopkins will require you to be referred by a neurologist and/or to see a neurologist to rule out other causes of headaches. Most neurologists in Delaware have waiting lists months and months long. If you run into that problem, I would recommend seeing Dr. Milan Sanghavi in Glen Burnie, Maryland: https://www.midatlanticneurology.com/ His practice doesn’t have the long waitlist that others do. He is the neurologist who ruled out my other causes and was happy to send a report to satisfy Hopkins’ requirement. Good luck! I’m so sorry you’re having to go through that misery. As bad as fibromyalgia and Lyme are, my CSF leak was 10x worse. I wouldn’t wish it on anyone (except maybe one of my exes, lol). You’re welcome to email me at donna@fedupwithfatigue.com if you have other questions.
I had Fifths disease several years ago and was left with fibromyalgia like symptoms. I also lost my metabolism controls and was hungry 24 hours a day. No matter how much I ate my stomach never hurt and my hunger was never satisfied. Found out that if was lacking Choline it could cause that. Before I had to fight to keep my weight up to 100 lbs. Now its a battle to keep it under 200. I also kept increasing with the aching and after getting the Shingrix shot it increased even more. Had a bout with fatty liver disease as well. In reading about Adele’s diet and why it was working I knew for sure what I had suspected all along was more than likely true. The Fifths disease not only depleted my Choline but these other proteins my liver needed to regulate my sugar, fats, pain, fatty liver, insulin resistance, etc. Choline cut the constant hunger thankfully but until reading about the Sirit Diet I had no idea what else had been lost. I started taking supplements to get what I needed and have already gotten less pain thankfully. Lost a few pounds but I am not following the diet to lose the weight but the proteins that are needed. Weight loss will come naturally. One other thing was my muscles had kept getting weaker and I did not really walk but realized I had started sliding my feet instead. Am now walking properly. This is after only having been taking the needed proteins a bout two weeks or less. There may be more hope yet for some of us. Have also gained energy. Now this has been a back and forth adventure but am steadily gaining more energy as well as having way less pain. By back and forth I mean every so often I will be tired and somewhat achy but then the next I am usually doing better again. It cuts the inflammation in the body. Celery does as well.
My toes had started curling and cramping on me at night unless they were soaked in warm water. No longer have to do that. Muscle is being rebuilt as well.