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Lumbar Puncture

I recently underwent an exploratory lumbar puncture, and I wanted to share my experiences and talk about why my neurologist and I opted for this somewhat risky procedure. I’ll talk about some of the reasons to undergo exploratory lumbar punctures and how they are performed. I include the guidelines and procedures both you and your doctor will likely be following before during and after the procedure. This way you’ll be prepared and cool as a cucumber the day you or your loved one undergoes this procedure, also known as a spinal tap.

As a sufferer of intractable migraine for over a decade, this is a procedure I have long wanted performed, but been equally afraid to undergo, so I never pushed for it with my old neurologists, who didn’t seem to be taking it at all seriously. It took me a long time to decide the procedure was for me. After finally getting my migraines under control just this past year and realizing it did nothing for the terrible pressure in my head, it had me wondering if more needed to be done than just finding the right migraine medication(s). This ever growing pressure, which became almost unbearable this summer, was accompanied by sharp pain in my head that was positional, intermittent vision and hearing loss, non-stop tinnitus, and a strong pulse in my ears that had the power to turn my tinnitus into the never ending *beeeeep beeeeep beeeeep* of an alarm clock; and the on/off switch seemed to be connected to standing or straining.

Then I had the worst dystonic attack I’ve ever had and things only got worse from there. That’s when my head pain specialist and I knew it was finally time. If I’m being honest, it was probably way past time. You can read more about it here: Why Vacations Don’t Exist for People with MCAS.

Enough about me. Let’s learn more about CSF, lumbar puncture and find out what to expect if you need to undergo the procedure.

The Role of Cerebrospinal Fluid

When my doctor started talking about performing a lumbar puncture for signs of high pressure known as intracranial hypertension, I did what I always do, research everything I could find on the procedure, from what to expect during and after the procedure, what type of conditions can be diagnosed using LP and what exactly cerebrospinal fluid is, along with how its analysis can be interpreted. Join me in learning more about this procedure now.

Cerebrospinal fluid is defined as a “clear watery fluid which fills the space between the arachnoid membrane and the pia mater.” Essentially, it’s the liquid that fills your spinal canal and surrounds your brain and spine. CSF serves several important functions in the central nervous system. CSF cushions the brain and spinal cord against shock. It provides a barrier. It helps to maintain pressure at a constant level inside the skull. Finally, CSF delivers nutrients to the brain and carries waste products away into the bloodstream. CSF is protected and separated from our blood by the blood-brain barrier. There is about 100-150ml of CSF in the normal adult human body. It is primarily made up of water and is alkaline. CSF is continually produced, predominately by the brain’s ventricles, and is entirely replaced every 6 to 8 hours.

An increase in the volume of blood or brain tissue results in a corresponding decrease in the fluid. Conversely, if there is a decrease in the volume of matter within the cranium, as occurs in atrophy of the brain, the CSF compensates with an increase in volume.

Cerebrospinal Fluid-Britannica Science

What is a Lumbar Puncture?

A lumbar puncture (LP) is often performed to check for the presence of bacterial, viral and fungal infections, excessive intracranial pressure, a cerebrospinal fluid (CSF) leak, cancers of the brain or spine, subarachnoid hemorrhage (bleeding on the brain), or to aid in the diagnosis of other neurological conditions such as Guillain-Barre syndrome and multiple sclerosis or a mitochondrial disease. LPs can also be performed for injection of chemotherapy or other medications into the spinal canal, as directed by your physician. They can be performed on an emergency basis, such as in the case of injury, or be prearranged, which is often the case with non-emergent exploratory procedures.

A physician usually performs the procedure, however even a well trained nurse practitioner can administer a spinal tap. My own procedure was performed by a nurse practitioner in training who was supervised by a neurologist; he did a fantastic job.

To perform a lumbar puncture, a thin, hollow needle is inserted into the spinal canal. If pressure is a concern, then your neurologist will request a reading of opening and closing pressures. Mine was 14.5 to begin, a middle of the range number that could be too high for some and just right for others. My closing pressures were a 9.5, after they had removed two small vials of CSF to be sent to the lab for testing.

Is Lumbar Puncture Safe?

Spinal taps have a reputation for being a high risk procedure, likely due to early failures during the development of the procedure back in late 19th century. This was in part due to the lack of imaging at the time. Today the procedure is much safer, with the advent of imaging technology, prospective and retrospective study have informed the development of clinical features that are associated with low risks and complications.

In trained hands, Lumbar Puncture is a straightforward procedure with few complications. According to The Health and Social Care Information Centre for England, there were 55,427 episodes of hospital care that included a diagnostic Lumbar Puncture in 2011-12, 0.53% of all hospital consultant episodes, which in Northern Ireland’s health system, with 600,000 admissions annually, would equate to about 8 diagnostic Lumbar Punctures per day.

“Diagnostic Lumbar Procedure,” NBCI

Preparing for a Lumbar Puncture

Before administering a lumbar puncture for your symptoms, your doctor may perform additional testing. These can include MRI, CT and blood tests which check for your ability to clot, as well as your kidney function.

Prior to having a LP, your medications will be reviewed, along with any recent illness, medical conditions or allergies. If you think you may be pregnant, you also need to alert your team right away so the necessary precautions can be taken. You may be asked to discontinue the use of any drugs which may thin the blood, from NSAIDs (advil, aleve, toradol, etc.) to heart medications such as Warfarin (Coumadin®), Pradaxa®, Heparin®, Lovenox®, or clopidogrel (Plavix®). Generally speaking, you can expect to be off of these medications anywhere from 3-7 days prior to your procedure to ensure good post-operative clotting of the needle puncture.

In addition to reviewing any and all medications taken, including supplements, any allergies also need to be discussed and you should provide a complete list to your surgical team so they can help to ensure your safety. This was a long list for me and my surgical team went so far and to cover every substance I would come into contact with the day of my surgery and again, just before their use to ensure no mistakes were made. I found this incredibly reassuring and would love to see more surgeons employ these tactics.

On the day of the procedure, you will be asked to refrain from eating and drinking for a period of time prior to your procedure. If only a local is used, as was the case for me, you can eat up to two hours prior to your procedure. If twilight sleep or sedation is employed, you may need to discontinue foods by midnight on the night before your procedure.

Finally, you will need to be accompanied by an adult who can drive you home and stay with you for at least 24 hours after your procedure. You may be given a gown for your procedure or your clothing may be draped in order to protect it and create a sterile field.

If the procedure is to be performed on a child, parents may be allowed to accompany them during the procedure.

How a Spinal Tap is Performed

Image by David Mark from Pixabay

Most scheduled LPs are out patient procedures and you can usually go home within 30-60 minutes of completion. A LP is performed with the use of fluoroscopy. In fluoroscopy, an x-ray is taken and then converted into a digital image your physician can see on screen. This helps them to be very precise when placing the needle in the spinal canal, reducing the danger of injury to the spinal cord.

At the beginning of the procedure, an IV may be placed in the arm or hand to administer the sedative, if one is given. You will likely be asked to lay on your stomach and may be asked to position your arms above your head with your face to the doctor so you can easily communicate. If you have difficulty with this position due to spine issues or other disability, ask the team to help you get into a position you’re comfortable in. It is very important to be able to lay still during the procedure, so you must be comfortable.

Once in position, the patient will be draped with sterile cloth and the surgical field will be sterilized with a preparatory solution, such as Betadine. A local anesthetic will be administered, which may feel like a pinch or sting.

The x-ray is taken and appears on the fluoroscopy monitor to guide your doctor. Once she or he has located the correct spot, they will begin the insertion of the needle and may occasionally take other x-rays to determine the depth of the needle is correct. There are several layers to get through, and while you shouldn’t feel pain, you may feel the needle access each layer of tissue and feel a pop as it goes through the final layer. It’s best to keep this in mind, so you remain calm and still despite these strange sensations. According to Doherty and Forbes:

The Lumbar Puncture needle pierces in order: skin, subcutaneous tissue, supraspinous ligament, interspinous ligament, ligamentum flavum, epidural space containing the internal vertebral venous plexus, dura, arachnoid, and finally the subarachnoid space.

Consent should include the risk of Post-Lumbar Puncture Headache (PLPH), which has a published incidence of 32%. Other risks to discuss include failure to obtain CSF, localised bruising, bleeding and local discomfort at the injection site. Iatrogenic meningitis and nerve root injury are exceptionally rare.

“Diagnostic Lumbar Procedure,” NBCI

This is important, not only because you can feel the needle break through some of these layers, but also because the puncture of ligaments can cause some soreness and back pain in the days following the procedure and people with collagen disorders should probably consider the need for extra healing time due to our deficiency and slow healing times.

Once the needle is inserted, you may be helped to reposition yourself to your side, taking the fetal position. The fetal position is the proper position for which spinal taps are usually performed when entering from the lumbar region of the spine.

If opening pressures are requested, as in the event of suspected CSF leak or IIH, the doctor will call out these numbers to the nurse for documentation and may or may not be commented upon. Then the appropriate amount of CSF fluid will be removed for testing.

During the procedure, you will be asked to monitor how you feel and whether or not your symptoms are changing as your fluid is collected. I didn’t feel any real difference during the procedure, however by the time I left the facility 30 minutes later, my headache was completely resolved, I was no longer light sensitive and my vision cleared as if the ward I was on had gone from dismal and dreary to full sun; a sun I could now look toward without intense pain. This indicated to the team that my pressures were indeed too high for my particular physiology. Once an adequate amount is removed for testing, the needle is removed, a band-aid is applied and you are asked to lay on your back to allow gravity to help with the work of closing the wound.

Post Procedure Expectations

Your team will likely check on you a couple of times while you recover in post-op. They will ask you questions about your symptoms and ensure everything is fine before sending you home. While it is important that you lay flat in your bed for a period after your procedure (usually 24 hours), you can simply tip the seat back in your car for the ride home.

Be sure to follow the recommendations of your care team to facilitate healing and avoid infection, which could be very serious. For this reason, it’s also very important to keep your team informed about any new symptoms or changes you experience after your procedure, both to ensure your safety should complications arise and in the event that further testing or procedures are indicated to take care of any problems which may arise.

It is important that the patient lay flat both to facilitate healing and to help avoid a spinal headache, which can happen if too much CSF is removed or continues to leak. Each day beyond the 24 hour period, you should attempt to be up and about. If no headache occurs, you’re generally free to go on about your life, with the exception of swimming and bathing (showering is okay). However if a spinal headache begins, the only solution is to lay in bed for another day. This process is repeated over the next two days. If on the 4th day you rise and experience a headache, a blood patch may be necessary.

A blood patch requires a second lumbar puncture in which your own blood is used to bring the pressure back up and to help facilitate clotting.

Barring any initial complications which might indicate the need for a blood patch, some patients may experience a spike in intracranial pressure within a few weeks after the procedure which would indicate an overproduction of CSF. In this case, another lumbar puncture will be performed to bring the pressure back down and a stent may be inserted to maintain drainage.

CSF Testing and Analysis

There are many tests that can be performed on CSF. Which tests your doctor orders depend largely on your symptoms and the outcomes of other diagnostic testing. Tests range include the observation of its physical characteristics (pressure, color, viscosity, turbidity), chemical tests to analyze the composition and content of fluid (immunoglobulins, proteins, LD, CRP and others), microscopic examination of red blood cells, white blood cells and cytology, and infectious and parasitic tests. For a complete list with detail, go here.

My CSF Analysis:

Because my doctor and I were most concerned about intracranial hypertension due to my specific symptoms, most of my tests were directed at this problem, with a few extras to rule out other possibilities. These are the tests he ran:

Rather than showing you the negative ones, I’ll include images of the surgeon’s notes, along with those which were abnormal.

This test indicates my blood-brain barrier is slightly impaired. This could explain why my “brain fog” has continued to grow, as everything that’s come up in my search on the subject points to either Alzheimer’s Disease or multi-infarct dementia (MID). I don’t find this overly surprising as my grandmother had Alzheimer’s and my mother was showing definite signs as early as 50. It seems I must beat them to every diagnosis. I will likely write more on this subject as it’s entirely too vast and somewhat off-topic, but obviously I need to explore this further.

The high protein levels in my CSF may indicate there’s brain injury (possibly due to a mild chiari malformation that hasn’t been caught on a supine MRI, but could also be a sign of a tumor, bleeding, or nerve inflammation. This needs to be explored further.

Next Steps

As you can see, more exploration is necessary based on my test results. It will likely be a while before I have an official diagnosis in light of these tests. My doctor started by putting me on a diuretic, which will likely interfere with my POTS and have to be withdrawn. If my pressure climb again, I may need a repeat procedure and a stent placed. Until I meet with him in mid- September, I will not know for sure if he is diagnosing me with intracranial hypertension, but it seems highly likely. At this point, he would have no choice but to label it as idiopathic since no source has yet been discovered.

For many people with EDS, the cause is often related to craniocervical instability (CCI) and/or Chiari malformation (CM), though sometimes a tear in our delicate soft tissues is indicated as the cause of a CSF Leak. Interestingly, CSF leak is often what causes Intracranial hypertension. While I have struggled with symptoms of these problems for years, I need a qualified neurosurgeon who understands and can order proper flexion and extension MRI’s to either confirm or rule out CCI or CM. As much as I love and appreciate my head pain specialist, it’s beyond his realm of expertise.

CCI, CM, CSF leaks and IIH are all topics we have yet to explore on the Zebra Pit. They are topics I plan to cover in the coming months. Of these conditions, which do you think we should cover first? Are you affected by any of these conditions? We’d love to hear your experiences with lumbar puncture and diagnosis! Let us know about it in the comments.

As always, thanks so much for joining us! I hope you found this post educational and interesting. I hope you’ll share it with others who might also find it useful.

Resources and Further Reading


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When my doctor started talking about performing a lumbar puncture for signs of high pressure known as intracranial hypertension, I did what I always do, research everything I could find on the procedure, from what to expect during and after the procedure, what type of conditions can be diagnosed using LP and what exactly cerebrospinal fluid is, along with how its analysis can be interpreted. Join me in learning more about this procedure now.
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The Poetry of Pain

Four of my poems about what it’s like to experience chronic illness, pain or particular symptoms are being displayed on The Unchargeables right now and with permisson, I have reprinted them here. I don’t usually discuss the meaning behind my poems, but I wanted to offer a little explanation of each for those who aren’t real familiar with poetry so that they might feel a little more accessible. I write poems like this to help me process the grief surrounding my disability and everything I have lost, but I also write them in the hopes that it will help others understand what it is those of us with Ehlers-Danlos Syndrome and similar spoonie conditions experience and so that others with these conditions will read them and know they are not alone in feeling these things, too.

If you’re a fairly savvy poetry reader already or just like word games, you may want to read them without reading the descriptions below first. Part of why I love poetry is because ultimately, they’re word puzzles and I love the feeling of success I have when figuring them out. These aren’t particularly clever so most should be able to get them, but a lot of people feel intimidated by poetry and we are a community that suffers from brain fog by and large, so I decided to include descriptions for those who aren’t up to the challenge today or simply aren’t into it.

Capricious

By Capricious Lestrange

That’s what they call me, but it was never my mind that changed all the time; left my aspirations rotting on the vine. It’s easy to dream. Actualization impossible when energy wanes more than waxes and body break better than breathes. Dreams come to die in bones like these.

“Capricious,” is a prose poem, which means it’s written in paragraph form rather than in verse. It’s about reconciling what the mind wants with what the body can handle and how the world perceives these adaptations in someone with invisible illness. Note there’s a typo in this poem, unfortunately. The next to the last line should say “…body breaks better than breathes.” I talk a bit about why I adopted the name Capricious Lestrange in my bio.

Agony

By Capricious Lestrange

It fills every thought the way sand invades every crevice. There’s no leaving it behind or brushing it off and even days later, you still find traces of it, here or there; a haunting of sorts. Before you know it, agony is always tagging along. You take her with you shopping, to parties, your job. Your friends are not impressed. Agony has made you dull and they’re wary of what She wants. To be safe, they move away, hoping you might wise up and dump her. You try to pay her off, but Agony cannot be bought. Before you know it, your Facebook status reads “In a relationship with Agony” and your friends congratulate you and sprinkle you with tiny hearts. One by one they drift away, Agony your only counterpart.

The key to understanding “Agony” is the personification of chronic illness. She follows you everywhere you go, sticking her big nose in every last detail of your life, your interpersonal relationships, your professional life. That agony is a real bitch.

Genetic Stalker

By Capricious Lestrange

You are the boundaries I never wanted drawn.
Fault lines shifting in quicksand, elusive as breath.
Thirsty as a lion in drought, you stalk these dry bones
for a chance to suck the marrow.

What’s this?
Solid earth beneath my feet? Sweet, tender grass
tickling my toes and sunshine pierces the veil, imparting
her promising warmth. I sit for a meal of dandelion wine
and greens at her table, arrange weeds for my bed.

Dream of open prairies until claws hook in flesh—
Jaws sinking into bone. Fault lines shift, I never wanted drawn.

“Genetic Stalker” is a metaphor for the beauty and bliss of brief reprieves from symptoms and illness we spoonies occasionally and seemingly miraculously get, only to be plunged back into the cycle of constant illness and how traumatic that can feel, both physically and emotionally.

Genetic Stalker

 

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Could Medication Overuse Be Causing Your Headaches? Join a Study

mots_logo_bannerHeadaches are a prevalent complaint among EDSers and it seems there’s no end to the possible reasons for them; including the very medications used to treat them. In fact, the very reason no more than 11 triptans a month are prescribed to migraine patients is because taking too many triptans can actually cause headaches. This is also true of Tylenol and Motrin; take too much or take it daily and you just might end up with a headache that won’t go away.

Recently, a study that examined how best to deal with just these types of headaches came out. The primary question the researchers hoped to answer was how best to treat these headaches and users were broken into two groups:

Methods Medication-overuse headache patients were included in a prospective, outpatient study and randomized to two months’ detoxification with either a) no analgesics or acute migraine-medication (program A), or b) acute medication restricted to two days/week (program B). Detoxification was followed by preventives if indicated. Patients were followed up at 2, 6 and 12 months. Percentage reduction in headache days/month after 6 months was the primary outcome. Results We included 72 medication-overuse headache patients with a primary migraine and/or tension-type headache diagnosis. Fifty-nine completed detoxification, 58 (81%) were followed up at month 6 and 53 (74%) at month 12. At month 6, program A reduced headache days/month by 46% (95% CI 34-58) compared with 22% (95% CI 11-34) in program-B ( p = 0.005), and 70% in program A versus 42% in program B were reverted to episodic headache ( p = 0.04). Migraine-days/month were reduced by 7.2 in program A ( p < 0.001) and 3.6 in program B ( p = 0.002) after 6 months. Conclusion Both detoxification programs were very effective. Detoxification without analgesics or acute migraine-medication was the most effective program. (Complete detoxification is the most effective treatment of medication-overuse headache: A randomized controlled open-label trial).

From these results, it appears that the best way to overcome these headaches is to quit the medication causing them cold turkey and I tend to agree with this view. My husband actually went through this just last summer with Tylenol use. He was taking 2 doses every day to combat back pain, but ended up with daily headaches that just wouldn’t go away. The doctor prescribed him triptans, which helped, but of course the headaches simply kept returning until they suggested he quit the Tylernol cold turkey. It took several weeks, but sure enough, he was soon headache free.

Along these same lines, I recently agreed to become the guinea pig in another medication overuse study, this one specifically for migraine sufferers called the MOTS Trial. I have suffered migraines for years and take Topamax as a preventive, but I still experience a considerable number of migraines that I use rizatriptan to treat. It turns out I’ve been using more than I’m supposed to. So, the doctor asked me if I’d like to join the trial. I agreed. I feel a bit like a masochist, as of course I was selected for the group who has to abstain from using triptans altogether, but if I am indeed causing myself more migraines, I want to break this cycle. It’s way too soon to say if it’s having any effect, but I hope it does.

Here is the information for the study in case anyone else would like to join (there are 30 sites nationwide) or learn more about it. It does pay a small stipend for your visits and isn’t overly time consuming or anything and since it doesn’t require you to take some unknown drug, it’s a pretty safe study to be in. The doctor also gave me a completely different medication to use to treat my head pain so it’s not like you get pulled off your triptans and left to suffer. You can also go in and get adjustments to your medication as necessary if you have any problems or you may leave the study anytime you deem necessary.

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Chronic Head Pain in EDS

This post was recently reviewed for accuracy and updated on 4/10/19


brain-pain-centerHead pain is an incredibly common problem for people with Ehlers-Danlos Syndrome. I have struggled with head pain for so many years that I found it almost impossible to accurately identify where it hurt whenever I was examined by a neurologist. My head hurt everywhere, all the time, though I would often experience sharp, shooting pain or more focused pain in certain areas at times.

It wasn’t until I began to resolve some of my issues that I was able to begin to understand the different types of headaches I was experiencing and their possible causes. In large part, these revelations came on the heels of major dietary changes, written about in this article, and fascia treatments, which I talk about here and will be sharing some more about in this article, today.

To the best of my knowledge, most head pain in relation to EDS occurs because of Chiari malformation (CM), Craniocervical Instability(CCI), Temporomandibular Joint Disorder (TMJD), or another connective tissue/joint issue that causes neuralgia (such as occipital neuralgia,  Mast Cell Activation Syndrome (MCAS) or another allergy or intolerance issue, orthostatic intolerance (OI), or medications. The more of these conditions you have, the harder it is to sus out what’s going on and it’s very important to address each and every problem in order to address your pain.

First, if you aren’t familiar with each of these conditions and you both have EDS and suffer from chronic head pain, get familiar with them now. They can cause a wide variety of symptoms that can wreak havoc on your health and well-being and if you have any one of them, depending on the severity, some may require surgical intervention, physical therapy and/or bracing. Also, in some cases, one condition can cause another, such as CCI or CM can lead to developing OI. Also, any one of the connective tissue issues like CCI, CM or TMJD can lead to trigeminal or occipital neuralgia; chronic nerve pain in the head and face. Of course it doesn’t usually stop there, causing problems with the neck, shouders, arms, chest and back. If severe enough, it can even cause digestive and whole body issues.  There is no end to the problems CCI and CM can cause because of its ability to alter the autonomic system.

I’ve gone through many different therapies on my neck, some with varying degrees of success, but none completely effective. Laying in bed seemed the only thing that provided me relief from the worst of my head pain, my glare and sound sensitivity, and even that was no guarantee.

Then I changed my diet and finally started eating chemical-free foods and figured out to what I’m allergic and intolerant and that I probably have MCAS and eliminated everything that was triggering me that I could. Yet more of my head pain cleared, along with many of my lifelong chronic sinus and respiratory problems.

I finally got a vascular specialist who put me first on midodrine and then florinef to at last get my POTS well controlled while simultaneously weening myself from some of the drugs I was taking to prevent the constant muscle spasms, cramps, and joint pain.  Again, this meant less head pain.

But no matter what I did, I couldn’t get these vice like tension headaches to go away. These are headaches toward the back of my head and along the sides. They cause my head to feel heavy and my neck always tired and tight. I couldn’t wait to lay down.

Over the last few months of doing the migraine series with the FasciaBlaster not only did the heaviness of my head and my neck pain begin to subside, so did my head pain, little by little, until one day I actually had a completely head pain free day and then another and another.

At first, I thought I had developed a cerebral-spinal fluid(CFS) leak and it was taking the pressure off of my overtaxed brain, but after several weeks with  many pain-free days mixed with some that weren’t so lucky, I have come to see that it was the FasciaBlaster migraine series that finally did the trick. I’m not honestly sure how long I’ve been doing the migraine series with dedication, so I can’t give you a ballpark on how long it might take you to get relief. Besides we’re all different. I can say that moving toward doing my head every 1-2 days has brought further improvements and now that they are mostly under control, I can do the entire migraine series once a week, my head twice a week and I’m pretty much good to go.

If I do experience any break through neuralgia, I simply get out my blaster, blast my head (dry works just fine for me) for 5 minutes and it clears up the headache completely about 90% of the time. The rest of the time, it’s brought the pain to a low enough level that I still don’t feel the need to take a triptan.

This may sound a bit odd, but one of the benefits to having those unending migraines gone is that I can now tell when something else is giving me a headache, making it much easier to identify when something is aggravating my MCAS or POTS. Before it was anyone’s guess as to whether I was sitting up too long, if I ate the wrong thing, if some scent might be a problem (I’m allergic to most synthetic scents), or if my blood pressure had dropped too low. Now, I can  more easily monitor the rest of my health and that’s very valuable to figuring out how to control and improve all of my comorbid conditions.

Identifying Head Pain and How to Treat It

In order to help you identify the type of head pain you’re experiencing, here’s a few tips about mine.

CCI & CM

Feels like: dull to sharp burning pain in the neck, back of the head, sides (around the ears) and to a lesser extent in the temples. While the pain radiates from the neck and the back of the head, it extends up toward the face, but tends to stop there, even if the numbness doesn’t. It can however, create tension in the entire head and neck area, so they can begin to hurt and these areas benefit from massage or fascia work. They can be accompanied by visual auras, light/glare sensitivity, sound sensitivity, nausea/vomiting and mood changes. I am told CM feels much the same way and I cannot guarantee that I have CCI as I haven’t found a doctor to properly test me, but I certainly have all the symptoms.

Treatments: Triptans work some of the time for these migraines, but you need a prescription. If a triptan doesn’t work, you can add a benedryl. I don’t know why it works exactly, but it helps. For prevention and treatment, the fasciablaster and neck therapy is the best thing I’ve found yet. There are also surgeries, preventative medications and treatments such as botox, topamax, Aimovig, Verapamil and many others that you could discuss with your physician, but healing the fascia and rebuilding the muscle to support your head and neck as well as possible should definitely be a first line defense. Once the surgeries begin there’s no going back and while it can improve some symptoms, it can make others worse. These are incredibly difficult conditions to treat.  This is why my primary recommendation is a program like the FasciaBlaster migraine series or another route of physical therapy.

Unfortunately, if you have a Chiari malformation or Cerebrospinal fluid leak, fasciablasting probably isn’t going to resolve these or high pressure problems related to these conditions and Ideopathic Intracranial hypertension. I’m not going to cover chiari in this article. It’s simply too complex to cover in a brief article like this one and I don’t have enough experience with it to offer any personal insights.

MCAS/Allergy

Feels like: all over/nebulous pain, dull ache. If respiratory in nature, it can bring on nasal congestion and pain in the sinuses, but often, it’s just a general ache. Usually, if it’s related to allergies/MCAS, it’s accompanied by joint pain, digestive issues such as bloating, inflammation and diarrhea.

Treatments: MCAS is a complex disorder and treating the resulting headache really isn’t enough, but if you find yourself in a flare with a headache, try some zyrtec, zantac, and benedryl with either some advil, tylenol or aspirin, depending on your tolerance. For a full list of medicines used to treat mast cell activation disorders, click here.

Dysautonomia

Feels like: Sharp shooting pain radiating from the top of the skull. I still get these from heat intolerance, even though I have my POTS well in hand. They hurt and they take a long time to resolve. Longterm untreated dysautonomia can also cause what is known as coat hanger headaches, as they cause the neck and shoulders to hurt as well as the head.

Treatments: I wish I had a fancy trick for these, but I don’t. You need plenty of electrolytes and to cool your head off. My best recommendation is a cold shower  and a liter of ice cold ORS followed up by a nap.

Of course the best way to treat any and all of these conditions is to know your enemy and proactively treat them. In other words, if you know you have POTS and heat intolerance, stay on a good treatment plan with your doctor, do your best to stay out of the sun and drink plenty of electrolytes when you know you’re going to be out. Part of being proactive is also making sure you have everything you need when you leave the house; medications, ORS packets, assistance devices, etc. It’s a pain in the ass, but waiting an hour to take a triptan can mean the difference between a close brush with a migraine and 3 days of trying to get them back under control.