How effective would a delayed lumbar puncture be in diagnosis of meningitis?

My symptoms are a dead ringer for a lot of the confirmed cases I've seen here. They started 2/11/18 and I've been to the hospital twice and diagnosed with migraines. I get occasional migraines. These are not normal migraines. Nor is that the only symptom. CT was normal, they were looking for stroke, as I'm prone to blood clots and have had a PE, although they didn't look for that. The 2nd time my doctor called ahead and asked for a spinal tap for meningitis. The ER Dr told me if I'd had meningitis I'd be dead by now and refused. Sent me home with with benadryl & an anti-nausea med for my headache, not sure what that was supposed to do. My doctor scheduled one the same day she sent me to the hospital and it got canceled for some reason. I had a neurologist apt scheduled for the same day, 2/28, so she suggested we see what she says. She pulled up 7 year old files, from when I'd seen another Dr in the practice for my migraines, said the reason I'm having such severe migraines is because I stopped the medication they gave me 7years ago. Which my primary doctor put me back on it at the onset of this mess (topamax) . And I just stopped it 2days ago due to severe reactions and it not helping with the migraines anyway. The neuro doubled the dosage. Refused to hear of side effects. 2 days later, I'm glad I stopped. It was exacerbating my other symptoms, ie new speech, writing, talking issues, severe debilitating migraine, severe vertigo, confusion, light sensitivity, can't focus or think because it feels like my heads on fire and going to explode, neck intermittently feels like someone's squeezing it, that's when I get really nauseous, I've also lost 20 lb since this started, which no one but me seems concerned about. Oh and fatigue. I'm in bed now. Started this before I fell asleep the last time. There's other symptoms, but I can't seem to remember them now.

So since I'm now 3 weeks in, would anything even show on a spinal tap? I think is probably viral, but I go to university and both myself and my professors have noticed major cognitive changes. I'm not sure if viral can also do that. I've searched online and can't find any answers. I hate to pay the exorbitant cost of the procedure if it won't help anyway. Not to mention risk. All of my lumbar discs are herniated. They'll have to go higher.

Thank you for your insight and wisdom!

[Jeffthe]

Your story is almost the exact same as the start of my story.....It wasn’t VM

Does your headache get worse when standing? A little better when laying flat?

Do your symptoms get a little worse as the day goes on? Sometimes, not so bad in the morning?

You might think I am crazy but it could also be a spinal fluid leak.

I was in the exact scenario as you. Same symptoms - a CSF leak has many overlapping symptoms to VM

IF it was a spinal fluid, Topo max would make your symptoms much worse ( it lowers cerebral spinal fluid pressure) and it is really really important to NOT have a lumbar puncture/ spinal tap. The sudden, further reduction in pressure can cause a subdural hematoma

Spinal Fluid Leaks are more common than you think but they will not get properly diagnosed by a GP or emergency and in some cases a neurologist. There’s legit studies showing this

A good resource is spinalcsfleak.org

There’s a section on symptoms. Having gone through a similar situation, I am happy to help in any way.

Be aware that most GPs and ER docs will dismiss the claim of a spontaneous spinal fluid leak. You will have find a doctor that has them and dealt with them.

Please let us know how things are going.

For reference:

Common symptoms of a spinal fluid leak:

Headache that is worse when upright and better when horizontal (but other patterns do occur)

Nausea and vomiting

Neck pain or stiffness

Change in hearing (muffled, underwater, tinnitus)

Sense of imbalance

Photophobia (sensitivity to light)

Phonophobia (sensitivity to sound)

Interscapular (between shoulder blades) pain

Pain or numbness of arms

Changes in cognition (“brain fog”)

Dizziness or vertigo

Less common symptoms:

Visual changes (blurring, double vision, visual field defects)

Facial numbness or pain

Changes in taste

Pain or numbness at various nerve root levels below the arms

Fatigue

Galactorrhea (fluid discharge from nipples)

Rare signs or complications:

Quadriplegia

Dementia

Parkinsonism, other movement disorders

Ataxia (unsteady gait)

Stupor / coma

Cerebral venous thrombosis

Reversible cerebral vasoconstriction

Stroke (hemorrhagic or ischemic)

Death

Key Points:

•Not all patients with a positional headache have a spinal CSF leak

•Headache may be trivial or absent with other signs and symptoms being more prominent

•The positional aspect of headache often lessens with time and may be absent from the onset

•The severity of symptoms and associated disability is often under-appreciated

[Hidden in reply to Jeffthe]

I have all of the "reference" symptoms except Pain or numbness of arms. Of the less common symptoms, I have all but Pain or numbness at various nerve root levels below the arms & Galactorrhea. Of thI rare symptoms, I have Parkinsonism & Ataxia.

I've only heard of a leak in the event that something was done to the spine. Like a leak after surgery. And I've refused surgical treatment on my spine for various reasons. So I'll have to look into this.

After stopping the topamax, I've noticed a decrease in intensity of the constant migraine, but its always there. But I'm still getting hit by the random one that knocks me on my butt, literally. I've figured out that when my legs start to feel like putty, my head starts bobbing like a bobble head, my neck is in a vise and I want to vomit, I can either sit down immediately, or end up on the ground. And then I can't function for about 2 hours and will fall asleep. I don't know as that fits anything. The neuro scheduled me for an EEG & an MRI, says its probably seizures. But I don't lose consciousness until I fall asleep. And I know what petit mal & grand mals look like and that's not what this is.

Thank you for the info. I'm going to look into this.

[Jeffthe in reply to Hidden]

The right neuroradiologist can diagnose a leak from a plane old head MRI. They feature:

Subdural fluid collections

Enhancement of pachymeninges

Engorgement of venous structures

Pituitary hyperemia

Sagging of the brain

Leaks can indeed be spontaneous (mine was). They figure about 5 people per 100000/year get them. They can also be from trauma or heritable connective tissue disorders.

I think the spontaneous go most undiagnosed because they are least well known.

Does that super bad headache come when standing or doing stairs? Where on the head?