Occipital neuropathy and dizziness
 

New to posting. I have been reading this forum off and on for 14 months.
I am the mother of a 16 year old who has suffered horribly for 14 months. She has had many concussions as a child, from various bad luck scenarios with swings, things falling on her, her falling on concrete and on and on. In Feb. 2011 she got the one that was one too many. We were in a car accident (rear ended) and then just as she was getting rid of the last of the symptoms in July and getting back to exercise, she was kicked full on in the side of the head by a dance partner. She has not been able to go to school since, suffered PTSD and night terrors, constant headache, dizziness, etc...has also been diagnosed with celiac disease in Sept., and now has some new symptoms.
Lately, her headaches are not on the sides of her head, but in the occipital region and behind one eye and the forehead/scalp area. She is also getting a type of dizziness where everything kind of gets wavy and in and out, not spinning.
She is not on any drugs because of the damage from celiac and healing from that, but she goes to a neurolink guy as well as a therapist who works with PTSD and some Emotional Freedom Technique, and energy work.
You can tell that we have not been happy with the traditional neurologists and psychiatric doctors we have seen along the road. Talk about not helpful, trying to push pills, blame the celiac/blame the PCS/blame her, and tell her she will commit suicide if she doesn't take pills.....(That was before I insisted on labwork for celiac and we found out she was off the charts celiac.) I knew that her excruciating intestinal pain was due to something serious and meds would just rip her up.
This is just a start, but does anyone have information on symptoms developing a year later, like the occipital/eye headaches and weird dizziness? Unfortunately, these are not all of her symptoms and challenges, but thought I would finally start posting to see if there are others out there that I can start communicating with. This is one sad, long, road. Just as we think there is a slow upward trend, there is something new that comes up. She just wants some of her old life back as she feels like she has lost pretty much everything.
But, today it is sunny and a new day and we are able to get out most days now which is fabulous!

A repost with some line spaces for readability
 

New to posting. I have been reading this forum off and on for 14 months.
I am the mother of a 16 year old who has suffered horribly for 14 months. She has had many concussions as a child, from various bad luck scenarios with swings, things falling on her, her falling on concrete and on and on.

In Feb. 2011 she got the one that was one too many. We were in a car accident (rear ended) and then just as she was getting rid of the last of the symptoms in July and getting back to exercise, she was kicked full on in the side of the head by a dance partner. She has not been able to go to school since, suffered PTSD and night terrors, constant headache, dizziness, etc...has also been diagnosed with celiac disease in Sept., and now has some new symptoms.

Lately, her headaches are not on the sides of her head, but in the occipital region and behind one eye and the forehead/scalp area. She is also getting a type of dizziness where everything kind of gets wavy and in and out, not spinning.

She is not on any drugs because of the damage from celiac and healing from that, but she goes to a neurolink guy as well as a therapist who works with PTSD and some Emotional Freedom Technique, and energy work.

You can tell that we have not been happy with the traditional neurologists and psychiatric doctors we have seen along the road. Talk about not helpful, trying to push pills, blame the celiac/blame the PCS/blame her, and tell her she will commit suicide if she doesn't take pills.....(That was before I insisted on labwork for celiac and we found out she was off the charts celiac.) I knew that her excruciating intestinal pain was due to something serious and meds would just rip her up.

This is just a start, but does anyone have information on symptoms developing a year later, like the occipital/eye headaches and weird dizziness?

Unfortunately, these are not all of her symptoms and challenges, but thought I would finally start posting to see if there are others out there that I can start communicating with. This is one sad, long, road. Just as we think there is a slow upward trend, there is something new that comes up. She just wants some of her old life back as she feels like she has lost pretty much everything.

But, today it is sunny and a new day and we are able to get out most days now which is fabulous!

Reposted by

PCS Mother,

Welcome to NeuroTalk, I am sorry for the struggles you and your daughter have been going through.

I reposted your post so those of us with visual struggles can read it easier.

Has she ever been tested for hormones? Hormones can cause a myriad of symptoms. Most doctors use a shotgun approach for hormones so finding someone who specializes in accurately balancing hormones is important. Check https://www.womensinternational.com/..._referral.html for someone in your area.

There is a book that might be worthwhile. It is called "The Maker's Diet" by Jordan Rubin.

Is anybody working on treating her upper neck for her whiplash and dance injuries? An Upper Cervical Chiro (NUCCA.org) may be helpful. Or a very gentle Physical Therapist with some gentle traction and manipulations. She does not need range of motion PT right now although range of motion will be a good diagnostic to see how her neck is functioning. Avoid any twist and pop chiro treatments. They are likely too aggressive right now.

As you said, this last concussion may have put her over the top. Let us know what other symptoms are her biggest struggle. As you have noticed, there is lots of good help here.

My best to you.

I'm so sorry to hear about your daughter's troubles.

You might want to read about or ask a specialist (MD) about something called IICP. It's increased intracranial pressure and it rarely occurs with people who sustained a concussion, but more frequently in people who have sustained multiple concussions, especially when another has yet to be resolved - I think this is what second impact syndrome is caused by, but instead of a slow increase in intracranial pressure it is rapid. (Even though I had it after just one concussion and I've read a lot about it, it still confuses me since I'm a layman.)

The pain she has behind the eye is what leads me to suggest this. The iicp that was the bane of my existence for six months was suspected, discovered and alleviated because of the intense pain I felt behind my eye. I had horrible and ongoing headaches that increased in severity for months before I started to experience any pain behind my eye.

IICP is a cyclical condition, so it gets worse over time. It's literally pressure inside the skull that just keeps increasing and increasing. It can be a slow process, but that *might* be why she's just experiencing this new pain behind her eye.

As the pressure increases, so does the cyclical process that increases it, so depending on how much pressure is there and the longer it is left untreated, it can take a while before it gets super bad but it can be life threatening and it can also cause permanent blindness and other very unpleasant side effects - like continued damage to the soft tissue of the brain being pressed on by it.

http://www.ihrfoundation.org/intracr...nsion/info/C17

Much luck!

Esther - you have me worried - That is the type of headache I get.... Behind one eye, and it feels like one day my eye is just going to pop out of my skull due to the pressure... perhaps I should be putting more effort into getting into see the physiatrist?

I don't want to worry anyone. It is a rare complication.

I think only a neurologist can really determine if someone has IICP. There should be other signs, other than just a headache behind the eye. But sometimes, that's not a symptom of someone having IICP. There are several symptoms on that webpage I linked above and sometimes people will show a few and sometimes they will show none. Bad IICP should show up on an MRI or CT scan. But sometimes it shows up on neither - this is when it's not bad, but it can increase from the point the image was taken.

Most people's brains can adjust themselves after a little swelling caused by the initial concussions and some people's can not.

When I had IICP, I could barely walk and needed the arm of anyone to be able to do so, I could hardly move, I could not speak very well, the pain I was in was so awful that even after being given dilaudid intravenously it did not go away. I misperceived space - like I would think a room was larger than it was and stuff like that. I was not able to maintain my personal hygiene and I was increasingly worse... I think it is a miracle that my neurologist was able to figure out that was what was going on with me and after I received the spinal tap to relieve it, I was finally able to start getting better. It's been a very slow process since that point. I couldn't walk or move for so long because of the pain that I was in that all of my muscles atrophied.

I've read that headaches behind the eye can be caused by other things, like tension headaches too.

I just thought after reading this woman's dire straits that it was worth mentioning... just in case...

I don't think it's necessary to ask about unless you're not getting better and in fact are getting much worse over the course of a few months. But I'm not a Dr.... :hug:

Thanks Esthersdoll... That helps me a bit... I don't always have a headache, usually just when I've done too much now... but then it's pretty horrible, and I sit on the couch moaning essentially!

I just wish my referral to both specialists would be a bit quicker!

Thank you so much for the ideas.
We were just in the ER last weekend due to new symptoms- she was getting tremors in her hand that spread to the arm and then numbness/tingling and twitches in different muscles all around her body. We thought it had something to do with the first chiropractic appt., where he worked on C-1 C-2.

Pretty scary, but the tremors have not returned. They did an MRI of her brainstem area and it is normal. This is just so nuts. 15 months after the whiplash car accident, and 10 months after the kick to the head. I was worried that she may be developing seizures now, but I guess there is hope that it was just related to the chiro appt. Her neck is very misaligned, but we are afraid to return to the chiro to continue the atlas orthogonal treatment.

auto-immunity and the brain
 

I'm so terribly sorry to hear about all that you are going through with your daughter. I just posted about my 13y/o daughter having suffered another concussion from running a 10k, the rammifications of which are just starting to settle upon me in a big way. There are things about your daughter's history that are very similar. My daughter also has had a lot of bad luck and we can't know how many concussions she has actually had--I know it worried me even before she had PCS the first time three years ago from a gymnastics accident. She has also had/does have symptoms of auto-immune problems and has an unusual health hx. including reactions to medications that may have further hurt her brain. My gut feeling is that high levels of neurological inflammation play a role in all of this in my daughter's case. And like you the medical establishment has not been where we have found what has helped. I think Mark's suggestion of looking into The Maker's Diet is a good one for sure. We have started acupuncture and I will take her for Craniosacral therapy if we can find someone again who is very, very experienced. Please keep us posted my thoughts are with you!

I've been getting some therapy called the Bowen Technique, and the idea behind it is that it helps the body and brain heal itself. Since I started it, I've been experiencing muscle twitches too - so maybe it's her own body working on her healing?