Esthers Doll, thanks for coming back and replying on this. I completely agree with you. I don't believe most people have a chronic increase in intracranial pressure as you did or close to the severity you had. I'm sorry you had to deal with it. Although it may be possible for some, so as you said it is worth to bring it up to a neuro. I think basically everyone here wouldn't need a lumbar puncture but maybe a select few. I'm not telling people to go seek lumbar punctures from their doctor (READ BOTH LINKS I HAVE AT BOTTOM TO SEE IF YOU MATCH SYMPTOMS)

ED, I would ask if it was a possibility that you have increased intracranial pressure in your head causing this. No harm in asking. See what he says and describe your symptoms because a lot of them are similar to as if your intracranial pressure was high.

Going back to my theory, I believe that intracranial pressure is increased or can spike a little at situations likely to set them off for those of you complaining of pressure in your head and how it increases when exercising or sleeping. I know a concussion can cause the brain to swell or be inflamed and that would cause intracranial pressure to rise. You can look it up on the Internet.

The condition I believe Esthers Doll had is Idiopathic Intracranial Hypertension, I could be wrong and this condition can be benign or chronic. Idiopathic also means that it is not caused by another condition meaning that swelling of the brain is not causing an increase in intracranial pressure. There's just a build up of CSF. In your case it sounds like it was benign because it was relieved from the lumbar puncture and didn't come back it sounds like. I have no idea, sorry if I'm making wrong assumptions about your condition, I truly apologize if I did. It's rare for you to have Esthers dolls condition but possible.

Now I don't think any of our brains are severely swollen or anything I think they may be slightly inflamed, or something be it idiopathic or not is causing minor increases in intracranial pressure.

At least for people that fit these symptoms: it feels like their brain is swelling or a pressure feeling that isn't localized in on area of your head, you have tinnitus, you can hear swooshing in your ears, and here is the main reason I believed that I have some spikes of intracranial pressure in my head: my vision problems. I had random episodes of where one of my eyes would move in a different direction for about 2 to 3 seconds. I wake up with my eyes feeling swollen and looking swollen and red (like a temporary papilledema). I also have sleep apnea like problems which increase intracranial pressure and that correlated with vision problems and other intracranial pressure like symptoms.

These symptoms strongly correlate to an increase in intracranial pressure. If you have these symptoms, think about it.

So this is my conclusion, I do not believe most of you have severely built up intracranial pressure that warrants being called a condition or would require a lumbar puncture (although possible so ask neuro as well as about inflammation of the brain, just bring it up), I do however believe there is some relationship no matter how mild or minor between rises of intracranial pressure built up and concussions/TBI for some of us sufferers. This is just my opinion because so many symptoms seem to overlap and they seem to be related from my research. I'm no MD but there seems to be a correlation between the two. Just do some research on it.

As I said most will not need a lumbar puncture and the pressure will go away on it's own, but I think stuff like anti inflammatories and not pushing too hard physically will speed this process up if it will go away on it's own. All I know is anti inflammatory = good for the brain, so it won't hurt. I guess saying "challenge" was too strong of a word but definitely bring it up to your neurologist. HOWEVER, If you have Idiopathic Intracranial Hypertension symptoms and/or have a case like estherdoll definitely CHALLENGE your doctor! Here are some links to the IIH. Base IIH off of these links. READ AT LEAST SYMPTOMS FROM FIRST LINK, AND READ ALL OF SECOND LINK (mayoclinic symptoms on second page of first link)

http://www.mayoclinic.com/health/pse...erebri/DS00851 (2nd page is symptoms, I suggest reading most of it)


http://www.ihrfoundation.org/intracr...sion/info/C20/ (read the myths)


http://www.health.com/health/m/galle...881_12,00.html (anti inflammatory food link)

Hopefullmom, I don't follow a book, I'm sure there is a good one out there which wouldn't be a bad idea, but I just research off the Internet. Mainly I eat a lot of fish (quality salmon), drink green tea (watch caffeine) but I may switch to white tea, eat lots of spinach, eat a lot of spinach, dark green leafy vegetables are anti inflammatory, lots of fruits and vegetables, lean beef.

Anti inflammatory supplements I take are fish oil and bromelain. Magnesium may be good too. I'm also on a vitamin regimen and a drink a bunch of water. Be careful with supplements everyone reacts different to them but I think the bromelain helps me. Read up on these, before taking and look up drug interactions. I hope this helps you daughter!

Hi concussedGuy,

Of course I forgive you.

But I felt I had to be very clear about what happened to me and to warn you about labeling what specific people are going through.

It's perfectly fine to speculate about your own condition, or what may be the cause of some anonymous person's symptoms or make a suggestion or speculate about the general cause of PCS, but I really didn't like it when you made an attempt to speculate about what has been going on with ME. Especially since I have exceptional physicians who have been working with me for over three years to get me back to a place of normalcy.

Thank you for your apology. I trust you will be more cautious in the future.

And I do agree that an increase of intracranial pressure, even a temporary one, could cause a lot of PCS symptoms and not be properly caught or diagnosed in many peoples' cases. But I am a layman.

There is a lot of information about a lot of medical terminology and different conditions and you may find that "the internet" uses terms interchangeably, but actual Physicians and researchers do not. They are actually quite specific. Every term has a very specific meaning - Medicine is considered a science and many Dr.'s have a scientist's brain or thinking pattern. Most of the Dr.'s I have met in the last three years (over 30 of them) do not like to speculate and they also do not like to use or try experimental treatments on their patients. They are very interested in facts and evidence and not very interested in speculation. (In my opinion, the best doctors are the ones who trust their patient's experiences and opinions about their own symptoms.)

I've done quite a bit of research about this stuff and I'm glad you are making a very serious effort to learn about it too. I've seen all those links that you posted a couple of years ago - there is a lot more out there for you to find too. It's truly fascinating stuff.

For the record, I did not have idiopathic increased intracranial pressure. This happened to me after I was in a MVA. I did not suffer from headaches before the accident. After the accident, I had a constant headache that continued to get worse and worse over six months time. I became incapacitated from the headaches around weeks 6-8. The headaches completely went away after the LP. That was almost three years ago. Increase of ICP can be caused by a concussion, as mine was, but it is rare.

PLEASE DO NOT DIAGNOSE ME UNLESS YOU ARE ONE OF MY PHYSICIANS - thanks in advance.

You apologized for possibly making a wrong assumption in here twice but then at the end of this little paragraph affirmed it again and you went even further to call it "my" condition - when it is not.

I think I've been very clear in past posts and current ones that this happened to me due to a concussion I sustained in an MVA. I apologize if I wasn't clear about that.

I do not like to "own" a challenging medical condition. It's not "my" concussion, etc.. It is a concussion that I sustained.

First of all, I apologize for offending you. Looking back at what I said, I see clearly how it comes off as offensive, especially in the assumptions I made. For what it's worth, I'll explain my thought process, but clearly it was flawed and mislead. What I meant by condition was something you had to deal with medically and temporarily at the time. I'm sorry for saying you had a condition.

I was going off my understanding that intracranial pressure being raised is called intracranial hypertension (hypertension meaning high pressure) in any case and idiopathic if they find nothing like a tumor or infection causing the increase of CSF. The Internet uses it as a very loose name describing both a chronic condition or something benign that would be relieved and never come back after a lumbar puncture, but clearly my understanding is wrong. It was wrong to say you had it because your right I have no business in giving you a diagnosis. That was my thought process. I made too many careless assumptions and was careless in wording

I think another mistake I made was using Idiopathic Intracranial Hypertension interchangeably with increased intracranial pressure, which is what you had, because the Internet uses it so loosely too. All that being said, it's not an excuse, I was wrong for labeling you. I had no right to do so. I am genuinely sorry and hope you forgive me.

Idiopathic does not mean it does not come from any other condition. Idiopathic means they do not know what causes the condition. The simple concept is they are Idiots regarding the Pathology of the condition.

Has you doc tried a beta-blocker like propranolol or atenolol ? It could help with your BP and anxiety levels.

Lol mark, that's a good explanation.

But yeah idiopathic intracranial hypertension was the wrong term, just intracranial hypertension is raised intracranial pressure whereas idiopathic intracranial hypertension is a type of intracranial hypertension. It wouldn't make sense to say idiopathic if it was caused by a head injury, so again I was wrong.

Im not going to do anymore labeling. However I still believe there is something going on with pressure in my head because of my symptoms


Mark, I've read that some say to avoid going on beta blockers as lowering the pulse could be dangerous. I'm weary of any medicines to be honest, had some nasty side effects to an anti seizure med and the diuretic made me feel out of it.