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07-11-2007, 10:55 AM | #1 | ||
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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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"Thanks for this!" says: | easeinbeing (09-24-2011) |
07-11-2007, 08:01 PM | #2 | ||
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Legendary
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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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07-10-2008, 03:24 PM | #3 | ||
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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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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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"Thanks for this!" says: | dawneve (09-15-2014), easeinbeing (09-24-2011) |
04-08-2010, 06:11 PM | #5 | |||
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Wisest Elder Ever
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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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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | dawneve (09-15-2014) |
09-09-2010, 11:18 AM | #6 | ||
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Quote:
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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09-09-2010, 11:11 AM | #7 | ||
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Quote:
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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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06-10-2011, 09:34 PM | #9 | |||
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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.
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03-05-2012, 05:58 PM | #10 | |||
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Quote:
For the new members seeking Post Concussion information.
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