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Old 07-11-2007, 10:55 AM #1
laural840 laural840 is offline
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Just wondering if anyone suffering with this type of headache also has orthostatic headaches as a feature of pain. An orthostatic headache is an increase in headache pain when you stand up. Pain levels may also decrease or go completely away when you lay down. If you have this symptom as a feature to your pain, you should consider that you may have Spontaneous Intracranial Hypotension. I'll post a link to an article.

I ask because SIH is a type of headache brought on by a CSF leak. CSF leak headache characteristics are very similar to PCS, but with orthostatic feature (although not always...). One remarkable similarity is that NO medication makes an orthostatic headache better or go away. My husband has suffered with orthostatic headache from a lumbar puncture 10 months ago. We went through all kinds of tests, treatments, etc. He's still suffering while awaiting the next 'go ahead' for treatment by his neuro team. It sucks!

Here are some links to articles:

http://www.medscape.com/viewarticle/466089_print

http://www.treatment-options.com/art...icle&KeyWords=

http://www.medscape.com/viewarticle/405618_print

Thought I'd throw it out there, because it IS treatable and it's something that doctors may not suspect right away.

Good luck!
Laura
Weary Wife of a Leaky Husband
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Old 07-11-2007, 08:01 PM #2
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Laura
You might want to go to the Post concussion syndrome area and post this too.

Donna
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Old 07-10-2008, 03:24 PM #3
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Default neck and pcs

I was sent for physiotherapy and massage to deal with the headaches that come from the bottom of the neck and roll up like someone is pulling a hood over my head. It took 8 months to get in to see neurologist after my fall that caused concussion and nobody told me that it could have anything to do with my neck but in the end it was the whiplash I guess that got the treatment not the concussion and the physio folks are wonderful. They explained that it is build up of tension the back and neck from the accident that sort of hardened. The dizziness is linked to the tension in the neck. I go twice a week and have been there for 2 months- one more to go. They use TENS machines to zap the nerves and wet heat, sometimes ultrasound on the back, neck stretching and most recently a sort of inner tube thing to stretch the neck. It has helped a lot with the tension and the headaches, but it is up to me to recognize when I feel tension coming on or headache and deal with the situations/causes.

I still have vision problems- blurriness etc and could not read for a long time-the letters bounced too much- mostly better but sometimes the contrast on charts or things with dark and light still created vision problems.

I was told to not go to chiropractor because of violent neck snaps but to try cranial sacral or something gentler.

I still get dizziness and the physio folks have a treatment for that too involving the tiny crystals on the hairs in inner ear but I have not done it yet. I find the dizzyness comes and goes- sometimes gone for months but then it comes back. Since physio though lots of the symptoms are better but I was off work for a while and worked half time for almost 8 months until I finally got referral. It still did not come from family doctor- or any treatment for that matter- she still says to just wait and see--but I would recommend getting the tension in the neck dealt with to help with the headaches that comes from back of head.

The medical community doesn't really understand post concussion and I have found very little support but there are good books and lots on the internet that helped me to stumble my way through it. I am still dealing with it 10 months later- much much better but there are days that I forget about it and do too much - do what would be considered normal to do in the past and then it creeps up again with dizziness or fatigue or memory lapse etc. I have just learned to accept that it has altered who I am and I am working on dealing with living with the new me.
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Old 04-08-2010, 05:14 PM #4
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I am a college athlete in my senior year of college and sustained a concussion back in october of 2009. It was my second concussion in the same year (first one was january of 2009). In late october I returned to playing, lying about my symptoms (idiotic of me I know) and ended up having major whip lash from running into a metal pole when I was running to save a ball from going out of bounds. It gets worse- I stood up into a metal pipe at my teams holiday party in december.

I have been struggling with severe headaches and fogginess since day one of my second concussion, and developed neck pain in january 2010 which in turn made my head feel like it was going to explode. That headache is different from my concussive headache which is more a pounding in my forehead, which has caused me to wear earplugs often and also keeps me from being able to even talk at times. No one has been able to address this foggy feeling I'm having--it's not that I cannot concentrate, i've never had issues doing that, but its this strange feeling, kind of like when you first wake up in the morning and things aren't entirely clear.

The doctors here at my school have repeatedly told me that cognitive rest (no TV, no computer, no NOTHING, basically being a vegetable), is the only way I am going to get better. I've tried their way multiple times, with little to no improvement. And they have repeatedly come back at me claiming that the reason I'm feeling this way still is because I haven't done what I've been told--which has been absolutely infuriating. Laying in a dark room with nothing but my thoughts only makes me cry. It has been pretty depressing to say the least when I am missing my entire senior year of college- I don't go out, I've grown apart from all my friends, I don't even attend practices because standing on the sidelines is way to taxing and as I"m sure all of you can relate I often think I will never get better.

I've had to take incompletes this semester in some of my classes and was planning to come back next year for a fifth year to play (I'm redshirting this year). But as the weeks and months go by I am becoming more and more doubtful that I will get to have my senior year.

My mom has been my one and only advocate in this entire ordeal. My parents brought me home for a week so I could see some doctors at home, to get second opinions. I received some EXCITING news and thought this was my chance to get better and get to play for my senior year. It's something called the subsymptom threshhold recovery program-- It is a study done and performed out of Buffalo and one was done out of Montreal-
It won't let me submit the link but Just google "Subsymptom Threshold Recovery Program" and It's an article by J. Leddy. It's some breakthrough stuff and they have found success with each person that has participated.

A month later after seeing those doctors who introduced me to this research, the doctors here at my school are now just starting to administer the program with me. (actually starting tomorrow) They have been very difficult and reluctant to treat my situation in any other way but their own.

I wanted to not only share my story but see if there is anyone else out there who is suffering from PCS with similar symptoms and if they got better. I hope that I will be able to report back to this forum that this subsymptom threshold recovery program helped cure me, for it is not only my wish to feel NORMAL again but to be able to have a senior year.
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Old 04-08-2010, 06:11 PM #5
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Hi Erica... welcome to Neurotalk.

Your post has interesting information on it, and I bet it would help some of our posters at our Traumatic Brain Injury forum as well:

http://neurotalk.psychcentral.com/fo...aysprune=&f=92

I hope this new program works for you!
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Old 09-09-2010, 11:18 AM #6
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Quote:
Originally Posted by erica21 View Post
I am a college athlete in my senior year of college and sustained a concussion back in october of 2009. It was my second concussion in the same year (first one was january of 2009). In late october I returned to playing, lying about my symptoms (idiotic of me I know) and ended up having major whip lash from running into a metal pole when I was running to save a ball from going out of bounds. It gets worse- I stood up into a metal pipe at my teams holiday party in december.

I have been struggling with severe headaches and fogginess since day one of my second concussion, and developed neck pain in january 2010 which in turn made my head feel like it was going to explode. That headache is different from my concussive headache which is more a pounding in my forehead, which has caused me to wear earplugs often and also keeps me from being able to even talk at times. No one has been able to address this foggy feeling I'm having--it's not that I cannot concentrate, i've never had issues doing that, but its this strange feeling, kind of like when you first wake up in the morning and things aren't entirely clear.

The doctors here at my school have repeatedly told me that cognitive rest (no TV, no computer, no NOTHING, basically being a vegetable), is the only way I am going to get better. I've tried their way multiple times, with little to no improvement. And they have repeatedly come back at me claiming that the reason I'm feeling this way still is because I haven't done what I've been told--which has been absolutely infuriating. Laying in a dark room with nothing but my thoughts only makes me cry. It has been pretty depressing to say the least when I am missing my entire senior year of college- I don't go out, I've grown apart from all my friends, I don't even attend practices because standing on the sidelines is way to taxing and as I"m sure all of you can relate I often think I will never get better.

I've had to take incompletes this semester in some of my classes and was planning to come back next year for a fifth year to play (I'm redshirting this year). But as the weeks and months go by I am becoming more and more doubtful that I will get to have my senior year.

My mom has been my one and only advocate in this entire ordeal. My parents brought me home for a week so I could see some doctors at home, to get second opinions. I received some EXCITING news and thought this was my chance to get better and get to play for my senior year. It's something called the subsymptom threshhold recovery program-- It is a study done and performed out of Buffalo and one was done out of Montreal-
It won't let me submit the link but Just google "Subsymptom Threshold Recovery Program" and It's an article by J. Leddy. It's some breakthrough stuff and they have found success with each person that has participated.

A month later after seeing those doctors who introduced me to this research, the doctors here at my school are now just starting to administer the program with me. (actually starting tomorrow) They have been very difficult and reluctant to treat my situation in any other way but their own.

I wanted to not only share my story but see if there is anyone else out there who is suffering from PCS with similar symptoms and if they got better. I hope that I will be able to report back to this forum that this subsymptom threshold recovery program helped cure me, for it is not only my wish to feel NORMAL again but to be able to have a senior year.
Dear Erica,
I have had PCS for 10 years. Note the following: Not doing anything is NOT the answer. You have to stimulate the brain in order for it to generate new neurol paths. If you don't get cognitive therapy, your symptoms may become permanent AND if you black out as well, your brain retrogrades after each episode. I have found taking Kaplan courses with online tests helps bigtime. Wake up slowly each morning, drink Gatorade or G2 and lots of water in the morning AND during classes. Do not drink alcohol. Anti-convulsives help if you stutter, have ticks, slurred speech, your feet hesitate when you walk...
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Old 09-09-2010, 11:11 AM #7
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Quote:
Originally Posted by owen View Post
Im so glad i found this place. Heres my PCS story.

I was at a paintball tournament in florida. It was two days before our team was scheduled to play. We were walking through the vendor area when a freak gust of wind blew one of the vendors balloons, about 10'12 feet in diameter, tethered by rope maybe 50 feet in feet in the air, it came down directly on my head. I didnt see it coming, i had no idea what had happened untill someone told me. I went to the ER, they xrayed my neck. Nothing was broken. They called it cervical strain, and said "physical activity as tolerated". Well, two days later my team needed me to play, so i indeed tolerated. The persistant headache i was having since the accident, I just assumed was from the extremely sore neck.

About a week later, i noticed my vision was noteably worse. I woke up one morning and anything past 6 feet or so was extremely blurry. Like vaseline smeared glass. I was also have a hard time concentrating, which i blamed on the headache. So i went to the ER. They said the persistant headache unresponsive to pain medicine, difficulty concentrating was text book PCS. That it normally gone within 4 weeks. They said as far as the blurry vision goes i probably had bad vision and are just now noticing it. Which angered me, because up untill a week before i could see fine. Now i cannot recognize a friends face from across the room. I can guess with a high degree of certainty, but there have been several bad guesses. Including my GF of 5 years.The part that bothered me the most in the ER was that they treated me like pain medication seekers. I never asked for any kind of pain medication. They talked to me with a high level of disbelief in their voice. Granted i was rather miffed at the idea of having this pounding headache for possibly 4 weeks ( i wish at this point ). I had already tried ibuprofen and tylenol to no avail. They reitterated the fact that persistant headache unresponsive to pain medicine was textbook PCS. And then they have me 500 mg of ibuprofen. I wish i had thrown it in their face and told them to eat ****, but i just did as they said. I was desperate. They called it a "loading dose" as they chuckled at each other ( the two ER docs ). I was thinking "wtf you just said its standard for medicine to not help pcs headaches." They told me to keep taking ibuprofen to get it to "build up" in my system. Which i did for a couple days, which did nothing so i stopped. Now my normal pre-PCS self, i dont like taking anything for a headache, cause its normally gone within 6-12 hours. I just dont like polluting my body if not needed. So i wasnt going to keep taking the ibuprofen if it wasnt going to help.

4 or so weeks pass. Nothing had changed. I got a refferal to see dr. jane ( of christopher reeves fame ) who simply poked at me, and said it was the PCS, but he wanted to run an MRI to make sure it wasnt something else. I had the MRI ($2,200 for my uninsured self), then waited anxiously waiting results. After battling the UVA health systems automated phone system for some time I had a nurse of dr. janes call and say " dr. jane wrote on your record here, " mri does not show anything to explain the symptoms patient is having."" So im like ok, wtf? Dr. jane also reffered me to a opthalmologist for my vison problems.

So a few weeks later i have my opthal appt. with dr. newman. An interesting fellow, but definitely a wound up guy. After his techs tested my eyes he came in, just shy of yelling said " your vision problems have nothing to do with getting sacked on the head, your visions been getting bad your just now noticing it." and left. Again, F you guys, i could see fine before this happened.

I go get glasses, so atleast i can see. But my non stop headache, and problems concentrating are still there, and dr. jane says "mri doesnt explain symptoms". So i dont know whats wrong with me. So i go to my primary care doc. She was the first helpfull dr. and explained that it was PCS, and that it normally doesnt show anything on an MRI. And she had no idea what dr. jane was talking about. That with PCS theres nothing really you can do but wait. As far as the headaches, she suggested i try midrin, a mirgraine medication. Which i tried. It knocked me out, but didnt help my headache. Ive never had trouble sleeping, despite having a headache. If anything its hard to wake up, because when im a sleep its the only time i get a break from the pain. So i wasnt going to keep taking the midrin if it only put me to sleep.

My PCP Dr. way reffered me to a neurologist at uva dr. perrin. She performed the same neurologic tests, squeeze my hand, watch my finger, whats todays date, where are you questions. She again told me theres nothing you can do for PCS except wait. When describing the headache as coming from the bottom half of my skull, she wasnt sure that it wasnt a torn ligament in my neck. I asked her if i should stop seeing the chiropractor, she said it would be a good idea untill the could rule out a torn ligament. My neck had still been bothering me so i thought i could be possible. So she ordered an CT scan. As far as the headaches, she said she didnt think i was at a point where i needed anti depressants, but she wanted to try a drug called Nortriptyline which would "lower my pain threshold". So i filled my prescription, immediately researched nortriptyline. Turns out its an anti depressant , also used for bed wetting. I decided id give it a try, i was desperate.

time passes, i have the ct scan. ( $1600 ) Fight the UVA phone system again
finally get dr. perrin to call me back. CT doesnt show anything. At this point my neck is killing me, so i ask her if i can go back to the chiropractor now. "no, i want to do an MRI to rule out any torn tendons". ****. The part that bothers me the most is knowing the extent of my injury, they could have just gone down a couple more layers when they were doing my brain MRI. But it doesnt work like that. So i get my neck MRI ( yes another $2200 ).

IN THE MEANTIME - The nortriptyline, I started out at 10 mg a day, and supposed to go up to 20 mg. the 2nd week, and so on till i reached 50 mg. So, 10mg was bearable. It helped knock the headaches down a notch. But they were still there. Well when it came time to move up, at 20 mg. I could not stay awake. So i just stuck to 10 mg. I originially blamed the medication on feeling crazy. But now that ive been off it for a while, im just feeling crazy.

So, i got hooked up with a neurologist named Dr. Isaacs. Did alot of weird neck manipulations. nothing like a chiropractor, no jerking or twisting. weird stuff like, head in his armpit, looking one direction, hand in my mouth, moving a foot. Holding my head. He then sat me down and asked me a lot of questions. Explained that while he was a neurologist, he studied osteopathy for many years, but emphasized the fact that technically he was not an osteopath. He said he wasnt sure it wasnt my neck causing my headaches. After the 1st visit my neck was 75% better! The 2nd visit he asked me to bring my GF. He asked her if i was irritable? Yes. Was i acting crazy? Yes. Then he manipulated my neck again. Same weird stuff. At this point my neck is 95% better! but it hasnt helped my headache any. He ordered a test to see what exactly my brains problems are, as far as concentration and abstract thinking and whatnot. Its not untill 4/25 so ill let you know afterwards.

Dr. isaacs said i could stop taking the nortriptyline because it could just as easily be a hangover headache from the drugs. So i stopped. my head still hurts, but im glad to not be throwing chemicals into my body.

MRI came back not showing anything torn.

So thats about where im at. Its been 5 months. My head still hurts 24/7, i still need glasses, i cant concentrate, and im feeling crazy. Crazy because these constant pounding headaches just start to wear on you.
Owen- Drink lots of water and gatorade in the morning. Avoid alcohol. your brain swells up overnight so the symptoms may be worse in the morning. Cognitive therapy helps all symptoms. **
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Old 06-10-2011, 01:00 PM #8
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Hi I'm Megan and i'm new to this.

2.5 years ago i hit my head on a flat screen tv that was mounted on the wall. Don't know how it happened. Pretty much stood up off the ground in full force and hitting the corner of it on the back of my head.

Didnt do anything about for like 2 weeks b/c i didnt think anything of it. I started feeling dizzy and my eyes were like slow. Pretty much felt like a had a really good alcohol buzz.

I first got cat scan, which showed nothing wrong.

Then went to the doctor and got referred to a neurrologist and put me on some drugs but they made me so tired so i stopped taking them.

I went to a chiropractor and took xrays of my head and neck. Nothing was wrong. Nothing helped.

Then i went back to my doctor and got referred to therapy. I went to a physical therapist, speech therapist, and a psyciatrist 3 times a week for like 3 monthes.

By this time i was diagnosed with PCS and more symptoms accured. My mood changed, very tired, i got angery about the stupidest things, memory loss, personity changed, super dizzy, messed up eyes, dull pain from the area i hit my head. Tons of things changed, i'm no the same person anymore.

I graduated from there and few monthes later i still wasnt doing good, so i went in to get a MRI, which showed nothing wrong.

I saw a new neurrologist and did nothing for me.

Then i was on my own a for a while, but now i doing bad again. I went to the doctor the other day and got referred back to therapy, but they rejected me. I'm gonna go to a balance center soon. Hopefully that will help.

I'm at the end of my rope. I've been suffering with this for so long now and no one can give me any help or suggestions, I felt like a pile of crap after talking to them. I could really use some support from others who get what i'm going thru. Seems like no one gets it.

As of today: i'm still super dizzy, eyes are still messed up, angery yet, very tired. And is it werid the part of my head is still sensitive to the touch where i hit it? Werid.
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Old 06-10-2011, 09:34 PM #9
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Default Hello & welcome

For the newer members that are coming to this thread we have a forum called -
Traumatic Brain Injury and Post Concussion Syndrome
For traumatic brain injury (TBI) and post concussion syndrome (PCS).
here is the link to it -
http://neurotalk.psychcentral.com/forum92.html

You might want to place a copy of your post on that forum also.
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Old 03-05-2012, 05:58 PM #10
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For the newer members that are coming to this thread we have a forum called -

Traumatic Brain Injury and Post Concussion Syndrome
For traumatic brain injury (TBI) and post concussion syndrome (PCS).
here is the link to it -
http://neurotalk.psychcentral.com/forum92.html

You might want to place a copy of your post on that forum also.

For the new members seeking Post Concussion information.
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