New here and so overwhelmed
 

Hey everyone so I am new here. So the dr said I has PCS but when I googled it bc I had know idea what it was it said it starts at month 3. I specifically went to this group bc they are one of the better concussion specialists in the area so who am I to question him. I fell skiing March 7th. Stuck in Cali till the 18th felt so much better went to work. I work part time in an office. By April 4th I was admitted to the hospital in severe pain. All scans came back fine both here and in CA. Fast forward to Tue....

So I took 1 step forward and 20 steps back. I was so proud of myself getting out and walking to the end of my street and back. Of course this was at dusk.

Well I don’t know what I did at physical therapy the other day but I really messed something up. I was in severe pain. All I was doing was stretching my neck from side to side. All of a sudden it hit me. Severe stabbing pain and pressure. He was talking to me but I have no idea what he said. I had him repeat himself later after it calmed down. After whatever I did he decided it was going to be my last day there. I was in to much pain every visit. He said once the pain was under control we can start over.
Well now I have to remember to sit up slowly. Sit there for a couple mins so my body can get used to it. Then stand up and move crazy slow. If I don’t I get a stabbing pain in my head that takes my breath away. If that happens I have to stop and breathe through it. (That’s just one of the many kinds of headaches.)
I saw one of my neurologists yesterday. He has no idea what going on. He says it’s post concussion syndrome but there is another problem that is causing the severe pain in my neck and head. He should be able to touch it without me being in severe pain and it shouldn’t be hot. Bc of that he really wanted me to see this one neurologist but her first available appointment isn’t till January 6. Her partner in the practice isn’t till June 18. So I made that appointment. When I originally called 3 weeks ago they set with up with a PA she put me on a steroid pack which did nothing and I am on my second week of topomax.

I can’t sleep no matter how tired I am during. Not to mention all the pain. What do you all do for pain? All I am on is flexeril 5 mg 2 a day 10mg at night and topomax. I can’t function. I have 4 ice packs and I rotate between that and heat all day.

I listen to audiobooks and now I podcasts thanks to someone’s recommendation. I am going to call around today and try to get in somewhere sooner. I am not far from Philadelphia there are hospitals who are well known for their Neuro departments.

My anxiety is through the roof which makes my headaches worse. Is anybody else out there dealing with bipolar and anxiety?

Kristin,

Welcome to NeuroTalk.

It sure sounds to me like you have suffered an upper neck injury. Some call them a Subtle Neck Injury because they do not show on imaging.

They require a special type of gentle treatment. Some get help from NUCCA or Atlas Orthogonal Chiropractors. Some PTs know how to gently mobilize the upper neck. It is more of a whiplash injury with a concussion component.

Range of motion exercises are often the worst treatment until the C-1 and C-2 alignments correct and the ligaments strengthen. It takes a lot of work, especially self-discipline to maintain good posture during rest and sleep.

You don't say where the stabbing pain and pressure is. If you have tenderness at the boney area behind the ears, that usually indicates upper cervical injury.

Mark,
Thank you for that information. I will definitely look into that. I am desperate. I am going to call as many places I can find on Monday. I am hoping my insurance will help with some of the costs.

I am not sure how to edit. I meant to put where the pain and pressure is.
At first it started at the base of the neck and went up the sides like what I would call a lightning bolt. Those wouldn’t last more than a 5 mins at a time.
Then we added the pain that would start at the base of my skull in the middle of my head and just shoot right up the middle to my forehead. Those happen bust not as often as the side ones.
There are the ones that just pick any spot on my head and just feel like someone is trying to escape. Just stabbing pain and pressure. That’s usually when I get up and walk to quickly. I just stop in my tracks and breathe through it.
Then the most current ones that started at physical therapy that linger for minutes to hours are a little above my ears and maybe an inch or so backwards on both sides. It’s a very awkward position bc it’s hard to get an ice part positioned there. I am lucky if I can even put an ice pack on it some days. It’s a pulsating stabbing pressure. I can barely keep my eyes open.
I am just getting so tired of the pain.

How did you hit your head - forehead/frontal, sideways, top of head, back of head?

The severe pain you describe is not usually a PCS issue, some mention headaches, neck pain, but not like you describe..
Trigger points can cause some pain & referred pain.. but rarely to severe levels..
what were the scans they did? - xray, MRI, CT scan?

Sometimes things get missed or they don't show up , I hope a dr requests new imaging, if pain is this severe..

I fell march 7 skiing in CA and hit the back of my head. Went to urgent care 2 days later. They immediately sent me to the ER and they did a CT of my Brain, neck, and spine. It was clear. Told me it was a concussion and I had a 10 day no fly order. When I was cleared to fly I came home mon and went back to work Friday I then proceeded to have a problem over the next 2 weeks. I went to a dr. Told me it was a concussion and told me to get an mri. That came back clear. I went to the er a month out they admitted me spent 4 days there. They did another ct it was clear. There was a talk of a spinal tap but that was only brought up once and never mentioned again. Everything they gave me didnÂ’t really work. They tried a nerve block for Occipital neuralgia that did nothing. So when they let me go they said it was post concussion syndrome and follow up with a dr. So I searched for a concussion clinic. Got all set up with some specialists the meds werenÂ’t doing anything I was still in a lot of pain but I had hope I know meds donÂ’t just work overnight. Neither does physical therapy. When we stopped my pt I made an appointment with head of the concussion clinic and he ordered another mri of my neck. They have done one already not sure it will show anything different or if I can even sit through it. No matter what I canÂ’t touch my head and I highly doubt they will let me bring an ice pack in to let me rest my head on. So I just donÂ’t know of anything anymore. The neurologist he is referring me to see I canÂ’t see till Jan the other neurologist in her practice I have a appointment with on jun 18. So I am going to try Jefferson neurosciences in Philadelphia. But I heard they have a waitlist too. I am waiting to hear back from one of those NUCCA Clinics. Not sure how I feel about that. The only drs I have really dealt with are PAs and thatÂ’s at the practice where I am on the waiting list till June. So I am going to do a consult and go from there. I donÂ’t know anymore.

Hi Kristen,

I did not read much of your post tbh, but I saw something about bipolar. I have challenges with schizoaffective related symptoms in addition to the concussion challenges. This includes periods of mania and low energy periods.

I'm doing very well however. I recommend searching for answers outside of allopathic medicine. Medications always made me worse than better. Doctors had few to no answers. Signifcant amounts of money, time, and energy were put towards my healing with lack of results.

Chiropractic, vision therapy, reducing EMFs, infrared light therapy, getting into nature, good social life, prayer, mediation, acupuncture, and self massage have been incredible.

The sharp lightening pain from top of neck to the forehead sounds like classic occipital neuralgia. Ask your doctor about whether he thinks the occipital nerve could be involved and about getting occipital nerve blocks. I’ve heard early intervention with a block containing steroids leads to better long term healing for occipital neuralgia. Google occipital neuralgia for the symptoms.

Hi Kristin,

I have had PCS for many years and only recently developed symptoms similar to yours, and not even after a new concussion. Because this pain is so different from and so much more intense than any other symptoms I've had over the years, I too am inclined to think that it's caused by something other than PCS. I am investigating possible causes. I'll report back on the forum if I find anything helpful.

Does your back of the head pain/pressure go away if you lay completely flat for an hour? Just a thought, but I had similar symptoms to you after my fall to the back of my head...and it turned out I had a CSF leak. The way the doctors knew to look for a CSF leak is because my head felt immensely better when I laid flat. Might be something to try and possibly explore. Best of luck to you!


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I wish I could lay down. I get so drained from being in so much pain all day long and I struggle just to lay down and take a nap bc putting my head on a pillow hurts so much. For a while it wasn’t as bad bc the ice numbed it. There is a new pain that is hard to put an ice pack directly on so it makes it harder now. I would love for that to be the case. I would lay flat all day long till I was all better. Lol. I am going to go for another MRI this time of my neck and go get a second opinion this week. Hopefully someone will have some answers.

Kristin,

Trying to get an image that shows an injury is usually a wasted effort. Instead, you goal should be finding a physical therapist who knows gentle techniques of traction and mobilization and can help you find good postures that help you not stress your neck.

No range of motion exercises. Maybe some static strengthening exercises.

It took me 2 years of disciplined efforts to get better. It is a long slow process.

LettingMyLightShine,

Many thanks for your reply. CSF leaks are one of the things I've been investigating. I don't always feel better after lying down for a short time, but I do feel better in the morning and worst at night.

Again, I will keep everyone updated.

Mark,

I agree trying to image a possible injury that can't be fixed anyway is a waste of time.

If Kristin's case is anything like mine, however, then I wouldn't assume that whatever is wrong can't be fixed. I believe that there's no easy fix for the low-grade neck discomfort I've had on and off for years, but this new pain (new for me, that is) is quite different subjectively. For one thing, it is excruciating.

There are plenty of neck issues that can cause pain such as Kristin describes, and that show up on imaging and be fixed. For instance, blood vessels compressing cranial nerves can potentially be decompressed. (That's just an example; I'm not suggesting that compressed nerves are at work in anyone's particular case or that decompression is an easy fix.)

It seems to me that imaging is worth it in this case.

Yes, some neck injuries will show in imaging. But, many with what I and others have termed Subtle Neck Injuries, similar to Subtle Brain Injuries, manifest symptoms with no imageable cause. The instabilities at C-1 to Occiput are very difficult to image. There is a full motion imaging system that can show some instability.

Most orthopedists and radiologists do not recognize the minor misalignments as indicative of an injury. A chiro will look and see a problem but MDs will say, No problems observed.

NUCCA and Atlas Orthogonal chiropractic and other upper cervical therapies helps some.

The concept is to try to treat the symptoms rather than treat an injury.

For me, a year of upper back to upper neck therapy slowly saw improvements. It took time for the ligaments to strengthen.