Was wondering if anyone here has experienced protracted headaches that were better or worse dependent on whether or not you were lying down or sitting up? Worse yet moving around?

I've been in hell for the last 2 weeks and I'm about ready to lose my mind. My head doesn't seem to hurt much when I'm lying down or mostly in a prone position. The problem comes about if I'm up and about for more than 30mins at a time. That's when it feels as though I've been shot with a deer arrow.

I don't know why this has started. I haven't had a spinal tap or anything like that. It started a couple of months ago with ear problems and progressed to this. I think I'll take the ear problems back if givin the choice.

Does this sound like anything you guys have experienced or heard of?

Sounds like you might benefit from a tilt table test. You blood pressure regulation mechanism may be over-correcting when you stand up.

I'd call the doc and ask about this.

At least you have a good reason to lie down. LOL

My best to you.

Mark thanks. My first thought was orthostatic blood pressure as well. So, I checked my blood pressure in the prone position and then in the upright position. The difference was negligible. As far as the standing that you mentioned-- I haven't gotten that far in my therapy yet. Someday.

My thinking now is more on the lines of some sort of intra cranial CSF thing going on. The problem with that is I haven't had a lumbar puncture or epidural recently-- which generally cause spinal headaches. The only thing that could possibly be the culprit is my baclofen pump that has the catheter placement into my spine. I just don't understand why it would cause a leak now-- it was placed in February.

Basically, my thinking was that there had to be someone here who has some experience with a spontaneous orthostatic headache. The head-bangers brigade here has people who have experience all kinds of different things. Surely I'm not alone in this.

I need to know that it will get better. I have sort of an ADD personality and lying down all of the time is no trip to Walt Disney World for me.

phyxius,

I was watching a lecture recently where they explained that the brain has a system of regulating blood pressure to just the brain. This system is often damaged from a head injury. Second Impact Syndrome is a result of this system being damaged and another impact occurring before this self-regulating system heals. The resulting over-pressure in the brain can cause quick coma and even death.

Taking your blood pressure on your arm is not necessarily related to the BP to your brain. The body will shut down blood flow to all but the brain in an attempt to survive an injury. This same system can malfunction. Other than a Doppler UltraSound of the carotid and vertebral arteries, I don't think there is a way to check this system.

btw, a Doppler UltraSound of the carotid and vertebral arteries is simple and painless. I had one done to check for vertebral arterial insufficiency. About $300 full price.

hi phyxius,

a CT myelogram, is one of the only test that will show if you are leaking csf at the pump site

best wishes and welcome

Thanks for the suggestion Mark. I saw my PMR doc yesterday and she didn't want to discuss any possibility except that it was a shunt problem with the original hydrocephalus. She wants me to go see the neurosurgeon.

This is obviously something I don't want to think about because that's how I ended up with the brain injury in the 1st place(having shunt revision surgery).
The last time I had surgery I ended up spending 4 months in rehab and leaving in a wheelchair.


These headaches aren't anything like the hydrocephalus pressure headaches. They are there whether you are lying down, sitting up, or hanging from a flag pole.

I'm just so upset today and don't know what to do. My options are to go to this doctor that I have no faith in, and honestly more than a little disdain for. I can do nothing and hope that it just goes away on it's own. So far that's not working, it has been almost 3 weeks now.

My PMR doc, who I had been seeing every 3 months, doesn't want to see me until the end of April. She said that I need to decide if I'm going to take care of the brain pressure thing with the neurosurgeon on my own. She is frustrated that I don't want to go to the neurosurgeon.

Sorry I ranted. I'm just so confused as to what to do and upset. I got wrangled into a surgery that I didn't want before. Now I just feel like if you don't bend to the will of doctors then they will not work with you.

Obviously we're all morons and know absolutely nothing-- even about how an illness that we've had for 18 years feels to our bodies. When we say a hydrocephalus headache feels different, we don't know what we're talking about.

Thanks Vini
Maybe my neurosurgeon-- if I decide to go to him-- will be more open minded about the possible causes of my headache than my PMR doc was and be willing to look into that. You can read my response to Mark to get a clearer picture as to what is going on.
Thanks again.

maybe it has to do with the ear ? sounds awful ...
i am new here and am looking for info about LENS
anyone have experience with this therapy they could share with me? i have multiple brain injury/PTSD etc....and am searching for alternatives to the medical / psych community that has pretty much said "oh well" ...
thanks :0)

I understand the feeling of the medical community just saying "oh well".

I don't know about LENS. What is that?

It's possible that you're right with the ear thing. For about 4 months prior to the beginning of the headache, my tinnitus was really troublesome and I had horrible pressure in my left ear that seemed almost like it was full. It just wasn't. When that went away, the headache came. I'm not sure that those things are connected. People with TBI often have wacky things with tinnitus and inner ear-- as well as inner ear. Who knows.

I really do understand your frustration with the medical community. I'm going through some of that myself. It seems that many doctors spend so much time studying while in school that once they get finished, they really want to spend as little time thinking as possible. They have their lab reports sent to them already read with values determined. X-rays have been read by the radiologist with clinical impressions already givin for them-- telling them what to think in advance. They develop a sort of intellectual laziness.

There are some of us patients who do not fit into a docs preformed boxes. We may require more intellectual stimulation and thinking outside of the box to figure out. The intellectually lazy will just say, "ah, it's nothing". It's easier that way. It gets them off of the hook.

There is an old saying in the medical field, "if you hear hoof steps think horses, not zebras." That is true probably 90% of the time, but they can't lose sight of the fact that there are still zebras in existence. I have docs that will not even look to see what it is.

poulsp,

There are plenty of posts about LENS. Do a search for LENS.

If you have plenty of money to spend, you may want to try it. If you do not have money to throw away, LENS is probably not a good investment. When Len Ochs, the inventor of LENS is willing to publish the research and research methodology, I may give LENS a better review. So far, he is the only one promoting LENS. It is not FDA approved for treating mTBI, PCS, PTSD, etc.

Some clinicians promote LENS for almost every condition of the nervous system, including fibromyalgia. When a device or therapy is so over promoted, i get skeptical.

You may want to look into volitional neurofeedback. It is a therapy where you are taught to increase some brain wave forms and decrease other wave forms.

LENS, ROSHI, and EMDR are non-volitional neurotherapies. They use external stimuli to try to reprogram your brain.

Hope this helps.

btw, What symptoms are you struggling with that you hope LENS will help?

It is best with PCS, etc to work with each symptoms individually.

My best to you.