Hello!

I am 64 and thin. A little over a year ago I started having terrible headaches (particularly when standing up after sitting or lying down after standing--level changes), vomiting and nausea sometimes, terrible very low back pain (sacrum area) and on one outer side of my back plus this pulsing sound in my ears and my ears feeling kind of stopped up. All of these things would come at the same time and quickly became a daily and debilitating occurrence. My mornings were pretty good but this whole syndrome would begin in the afternoon (earlier and earlier) and last for around 8 hours. For the most part, I don't experience these symptoms overnight.

PCP thought this was Sciatica and Migraine headaches. I knew it wasn't sciatica. Because the headache was so bad and the vomiting, he referred me to a Neurologist who I finally saw after an 8 week wait. It was very hard to go to a doc and explain how bad it was when it wasn't happening but scheduling an appointment in the afternoon when it was bad wasn't appealing to me.

The Neurologist suspected a spontaneous (meaning not caused by a medical procedure or trauma) csf leak which causes HYPOtension. I thought it was that too because of the headaches when standing but it didn't explain why they got worse even when lying down nor the back pain (I have the neck pain, too, and that can be a symptom of Hypotension, too). The MRI didn't show "brain sag" which shows in 80% of csf leaks and didn't show evidence of a leak, but that is not uncommon. She wanted me to have a "blind" blood patch where an Interventional Radiologist takes your own blood and puts it in your epidural area right outside the dura entering at the lumbar back. She couldn't find an IR to do this in her system without a sign of the leak.

There are 2 clinics in the US who specialize in csf leaks and I sent my info including my headache journals to them and one called back and didn't think it was a csf leak because a few things didn't fit (getting worse while lying down, pulsing in ears. So I spent the next while going to physical therapy and seeing all kind of specialists. No one would look at all of the symptoms as part of one thing and no one had any explanations.

Finally I went to another Neurologist who frankly didn't listen well but thought it was a csf leak and worked with an IR who would do a "blind" (meaning the location of the leak isn't clear) blood patch. So, I had that done and was in more pain than before where a lot of people feel much better almost immediately.

I got worse and worse and the Neurologist couldn't find time to even talk with me on the phone. I had to cancel an afternoon appointment because I was in such pain and her assistant told me she was too busy (even with my cancelled appointment) to call me. Awful. My husband had to help me out of bed and twice my legs collapsed and I lost consciousness briefly!

With a blood patch about 30% of the people get "rebound HYPERtension." I knew that was what I had so I went to the ER in the morning when I felt ok and bless the young doc, he had me admitted. It just so happened that the first Neurologist was on duty at the hospital! She did a LP herself because it was late on a Friday and my pressure was at 40. She did every other test imaginable. We weren't sure if this was rebound hypertension from a successful plugging of the leak or if I didn't have a leak and the blood in the epidural squeezed the dura, causing the tension to go up. It was at that time (in July) I began to wonder if the whole thing all along hadn't been IIH.

My Neuro started me on Diamox, eventually 2 250 mgs twice a day. In the last 2 weeks, my symptoms have come back and gotten worse each day. Generally starting around 4 and lasting until 8 though last night I went to bed hurting and noticed it more mildly through the night. I called her office to ask her to up the diamox. She wanted me to take another 250 mg between the other two doses. Just started that yesterday.

I have an LP scheduled for Monday because of the return of the symptoms but I just couldn't wait that long for some relief.

I feel the tingling in my feet at times and less often in my hands but otherwise haven't had negative side effects from Diamox (except once when I wasn't careful enough in the sun). I have seen a regular Opthamologist who mentioned his other patients with this condition. I did fine on the field test but he said my optic nerve was a little "big." I am scheduled to follow up 3 months from last visit.

Do these symptoms sound like IIH? Does anyone else have the symptoms worse at one period of time each day that is consistent but not during another part of the day?

I'm glad you are here.

Eleanor

Dear Eleanor;
As I read your story I was struck by the apparent absence of an LP to check OP before these docs assumed you had a leak.  how could they say you had intracranial hypotension without measuring the pressure?  I thought maybe you had left it out but then you said you wonder if you have had this all along.  yes, I think you probably have had this all along.  given that your symptom pattern has not changed, meaning you are OK in the morning and not by the afternoon.  your symptoms otherwise do sound like IIH.

now, this pattern is not typical for IIH, at least not for me.  I have always been worse in the morning, but I do have obstructive sleep apnea that I think is a big part of my trigger.  but classically, gravity helps to drain CSF out more while we are upright, and less while we are laying down, so with IIH you ought to be worse in the morning and better in the evening.  even at my worst i would tend to "clear" around 7pm.

so the question for me is whether you have a trigger that happens around noon or so, to set you up for how you feel later.  a trigger might be a chemical exposure, a flexed neck position, or crying/Valsalva.  maybe something you eat for lunch?  a medication you take at noon?  triggers can cause immediate symptoms, or a delayed reaction.

Hi Eleanor! I agree with Deb.. it sounds like IIH except for getting worse later in the day. When I had an LP Shunt, my symptoms got worse the longer I was up. They eventually found that my shunt was overdraining, so I was having low pressure symptoms. Even then, my symptoms would go away when I laid down and caffeine helped. I wonder if they considered a leak because your symptoms got worse when you were up, but I would have thought they would have done a LP or ICP monitor to confirm your pressure before proceeding. 

I also get an ache in my spine with my IIH headaches, but always assumed it had been a result of the LP Shunt. I think back pain is listed as a possible symptom, so that could be related. Honestly, IIH and treatments effect everyone differently, so it’s just difficult to know. Food, meds, sleep, environment, activity, weather, etc can affect symptoms, so you may want to track some of those things in your journal. 

Like Deb, I also wonder if there’s a trigger that makes them worse for you later in the day, but I’m afraid it’s a lot of elimination practices or good old fashioned trial and error.

I do think it’s interesting that your opening pressure was elevated and the Diamox helped which does imply IIH, but I wonder if it may be secondary to another disorder that they just haven’t identified yet. Hopefully the LP will give them more insight, but I would keep asking questions and seeing different specialists until someone hears you and figures it out.

Take care, and please keep us posted!

Julie