New Here, Hoping for Advice and Encouragment
 

Hello, I'm new here and not completely sure of the proper format, so please correct me kindly if things aren't perfect.

My accident: I was riding my horse, wearing a high quality helmet, at a show, he bolted, long story short my head hit a heavy, old, steel corral pipe at a full gallop, was unconcious immediately, barely remember anything before r during the accident. All bits and pieces still, and this happened early May. Went to the hospital, ended up with four skull fractures, a busted ear drum, and a messed up neck. Told me I had TBI, and PCS. I wore a neck brace for months.

So, I am now okay-ish, I guess. Haven't recieved much help from any nuerologists we've been to, and we've seen a lot.

I get headaches every day, all day, and they are increasing in pain and intensity. I did have chronic headaches and migraines before the accident, but they have become different and much worse.

Currently the only thing that gives me any relief is chiropractics, and a dark room with an ice pack. Also have had some success with supplements and essential oils.

Basically, the doctors told me I should never ride horses again, which is like telling me to never breath again, but I understand why and am coping with the loss of my beloved sport and my best friend who landed me in the hospital.

I was hoping you all might have some suggestions regarding alternative therapies, how to find a good nuerologist, how to deal with the aftermath, how to deal with side effects (i.e. memory loss, balance issues, mental health issues, etc.), and how to emotionally pull through this.

Thank you so much, and I appreciate that there is a community to discuss this in. :) :grouphug:

CowboysKat,

Welcome to NeuroTalk. Sorry to hear of your injury. Glad to hear you survived it. It sounds horrible.

You are not alone in your struggles. We understand them all.

The symptoms of a concussion need to be addressed individually. There are no therapies that are effective at treating multiple symptoms.

A vestibular therapist would be a good start for the balance issues.

A Physiatrist would be worthwhile. They can be found under "Physical Medicine and Rehabilitation' in a phone or doctors directory.

A headache specialist may be able to help. Many headaches are related to upper neck injuries. The chiro can help but can also be to aggressive for the subtle neck issues that can persist. An upper cervical chiropractor can help some.

The Vitamins sticky at the top has a list of the upper cervical chiro organizations to help you find one local to you. It also have a vitamins and supplement regimen for brain health.

You just vaguely mention memory loss. There are many ways memory is affected after a concussion. Can you be more specific ? Was this amnesia where you don't remember what happened or do you have struggles remembering day to day issues or recalling previously learned information ?

The emotional struggles can be just frustration or anxiety or even depression. We all experience at least some of these emotions. PCS makes the brain less sensitive to stress so reducing stress in our lives is a big help.

How is your sleep ? Quality sleep is essential to recovery. Quantity of sleep is not important if you are getting quality sleep. 8 hours or so of quality sleep should be good. Napping can disrupt getting quality sleep so care needs to be taken with napping.

What supplements are you taking ? Essentials oil can help and they can cause over-stimulation of olfactory (smell) senses. My wife uses some and they can easily over-power my senses.

Icing your neck and back of your head is good, especially after a chiro adjustment. Are you taking any anti-inflammatory meds like ibuprofen or aspirin ? What do you take for your headaches ?

What kind of riding did you do ? Did you lose your horse ? That is even more tragedy in your life. My heart goes out to you.

Thank you for not posting as one big long paragraph. It made it much easier to read your post.

My best to you.

Thank you so much for the lovely and helpful reply! :hug:

I will look into vestibular therapy, as my balance has decreased, and my initial injury came with severe vertigo for weeks due to the injury to my ear.

I will most definitely look into seeing a physiatrist! That hasn't been recommended to me before, but sounds like a perfect option.

We are always looking for a good nuerologist or headache specialist, but have had little to no luck... I'm a youth, and we've even tried multiple children's hospitals... We are thinking or going to a college with a medical program if we cant find any other options. Is there any trick to finding a good one? Or is it simply up to going to as many as you can until you find one you like?

Hadn't thought of a cervical chiropractor yet, that's a good idea! The chiropractor I'm seeing is a sports rehabilitator/chiro who worked for the Olympic team in the past. He also has a soft tissue massage therapist who works gently on my neck.

I will definitely look at the Vitamin Sticky! Is it best to run all vitamins past your primary doctor first?

My memory loss mainly includes only remembering bits and pieces of the accident and hospital trip itself, and forgetting very simple and important words. When I do remember things from the accident, they come in flashbacks that feel extremely real, suffocating, and terrifying. They always cause panic attacks and then I wish I didn't remember. The words I tend to forget are so simple its frustrating! I have a large vocabulary, as I read a lot, and yet, I forget words like "very", "repeat", "room", etc. Yet, I can remember hard terms in biology just fine.

The emotional struggles have been the most prominent lately, and I am seeing a psychiatrist who has given me a prescription that has helped me a lot day to day. I had depression and anxiety before the accident, and it got worse afterwards, which was to be expected. I am working on reducing stress in my life, but didn't know that PCS makes you more sensitive to it. That explains a lot!

My sleep is either really good or really bad. I'm definitely trying to work on it. I use a white noise machine, light essential oils, etc. when I cant sleep.

Right now, I'm kind of new to supplements, but definitely not apposed to them. I've seen what they can do or horses, so I'm interested in them for me. I'm currently taking fish oil supplements, vitamin D (blood work showed I was lacking it, most likely due to my pale skin and lactose intolerance), and a multivitamin. I also occasionally take Arnica Montana for pain. I'm open to any suggestions for supplements!

So far, I'm not easily overwhelmed by the essential oils, but I use carrier oils, and use them sparingly.

Before my accident, I was taking aleve, Tylenol, and motrin on almost a daily basis. After the accident, my most recent nuerologist had me stop taking them cold turkey. He said my headaches might be a result of the medications. I really had no impovment after I stopped taking them. I take them on occasion now.

I showed all-around in 4-H, open shows for western pleasure, western eq., English pleasure, English eq, hunter hack, trail on occasion, horsemanship, and showmanship. He was an all-around show horse I finished myself. He came out of the accident un-scathed, but the vet deemed him unfit for riding with a nuerological issue. His flight response is way to strong, on a dangerous level. So, even though he wasn't hurt or killed, I lost riding, I lost my connection with him, I lost my escape, and I lost what was once my best friend. It takes a lot to put all of your trust in a thousand pound animal, and it was shattered, along with all of the hard work I put into him, in an instant. So I'm still recovering from that.

I truly appreciate everything you've said and suggested. Just knowing people understand what I'm going through makes me feel less alone. Thank you so much for everything, you have no idea how much this means to me. :circlelove:

Kat,

[I will most definitely look into seeing a physiatrist!]
Call the neuro rehabilitation hospitals or clinics in your area. Physiatrists are often affiliated with then.

Headache specialists can be good if you can find the right one and not just a pill pusher.

Neuros are not what many expect them to be. Few are good at dealing with the issues of PCS.

What area do you live in ? Maybe somebody here has a referral for you.

How old are you ? Age can impact symptoms.

As I said before, one needs to separate symptoms and look for someone who understands that symptom.

[The chiropractor I'm seeing is a sports rehabilitator/chiro who worked for the Olympic team in the past. He also has a soft tissue massage therapist who works gently on my neck.]

Chiros are a real mixed bag. A chiro who works well with one patient can be worthless or even damaging to another. Credentials and past experience should be just a general reference, not an implied expertise.

I've seen 18 chiros in 35 years due to moving and other issues. Only 4 or 5 were ever any help beyond the basics.

[I will definitely look at the Vitamin Sticky! Is it best to run all vitamins past your primary doctor first?]

The basic letter vitamins, fish oil and calcium/magnesium are all safe so there is no real need to get a docs approval. Many doctors think they are a waste of money. Adding supplements like 5-HTP or DHEA or such should be considered more carefully. You parents could get involved here on NT to get some more understanding. Your mom could use your screen name and just say, 'This is CowboysKat's mom' or create her own screen name like CowboysKat's Mom.

[My memory loss mainly includes only remembering bits and pieces of the accident and hospital trip itself,]
Don't worry about this traumatic amnesia. You may never regain these memories. Your brain was disrupted before it had a chance to store the memories of the event. You are probably better not remembering. The emotional stress of those memories playing could be quite negative.

[and forgetting very simple and important words. The words I tend to forget are so simple its frustrating! I have a large vocabulary, as I read a lot, and yet, I forget words like "very", "repeat", "room", etc. Yet, I can remember hard terms in biology just fine.]

Word finding is a common struggle. Many of us live with it. I've dealt with it for over 15 years. Stressing to find the words usually only makes it worse. Learning how to use your memory after your injury may be your biggest task. I wish somebody was around to help me understand my struggles when I had problems after a concussion at 15 years old. Nobody helped.

[When I do remember things from the accident, they come in flashbacks that feel extremely real, suffocating, and terrifying. They always cause panic attacks and then I wish I didn't remember.]
When this happens, try to take a breath and focus on how blessed you are to survive as well as you have. You may have times where something triggers these stressful memories. Seeing a horse or corral panel or any of a myriad triggers. Knowing and accepting that they will happen and having skills to respond in a positive way will be helpful.

A neurorehab specialist may be able to direct you to a therapist who understands head trauma PTSD.

[The emotional struggles have been the most prominent lately, and I am seeing a psychiatrist who has given me a prescription that has helped me a lot day to day. I had depression and anxiety before the accident, and it got worse afterwards, which was to be expected. I am working on reducing stress in my life, but didn't know that PCS makes you more sensitive to it. That explains a lot!]

What meds have you been prescribed by the psych ?

[My sleep is either really good or really bad. I'm definitely trying to work on it. I use a white noise machine, light essential oils, etc. when I cant sleep.]
There is a lot to understand about PCS sleep issues. Insomnia is a big issue. What do you experience when you can't sleep ? What is it like after you have a bad night's sleep ? I have a miserable day after a bad night's sleep.

The body needs proper magnesium to relax and sleep. Did the blood work check your magnesium levels ? How about folate or B-12 levels.

[Right now, I'm kind of new to supplements, but definitely not apposed to them. I've seen what they can do or horses, so I'm interested in them for me. I'm currently taking fish oil supplements, vitamin D (blood work showed I was lacking it, most likely due to my pale skin and lactose intolerance), and a multivitamin. I also occasionally take Arnica Montana for pain. I'm open to any suggestions for supplements!]

If the Arnica Montana helps, it is fine because it won't hurt. If you like math, I can enlighten you about homeopathic concepts.

So far, I'm not easily overwhelmed by the essential oils, but I use carrier oils, and use them sparingly.

[Before my accident, I was taking aleve, Tylenol, and motrin on almost a daily basis. After the accident, my most recent nuerologist had me stop taking them cold turkey. He said my headaches might be a result of the medications. I really had no impovment after I stopped taking them. I take them on occasion now.] He is likely suggesting rebound syndrome, a problem from over-use of pain killers.

[I showed all-around in 4-H, open shows for western pleasure, western eq., English pleasure, English eq, hunter hack, trail on occasion, horsemanship, and showmanship. He was an all-around show horse I finished myself.]

My daughter trained under Julie Goodnight. I understand the sense of loss you are experiencing.

[He came out of the accident un-scathed, but the vet deemed him unfit for riding with a nuerological issue. His flight response is way to strong, on a dangerous level. So, even though he wasn't hurt or killed, I lost riding, I lost my connection with him, I lost my escape, and I lost what was once my best friend. It takes a lot to put all of your trust in a thousand pound animal, and it was shattered, along with all of the hard work I put into him, in an instant. So I'm still recovering from that.] That is tough to endure. My heart still goes out to you. I trained beagles at one time. I miss them. Is Cowboy your horse's name ?

[I truly appreciate everything you've said and suggested. Just knowing people understand what I'm going through makes me feel less alone. Thank you so much for everything, you have no idea how much this means to me.]

Just remember. You are not alone. As I said, your parents are welcome here, too.

My best to you.

Hello Kat

Welcome. I do not have much more advice than what Mark has given you, but I wanted to offer some support. You have been through a great deal and seem to be doing really well for what you went through. Patience and reducing stress on yourself are the key to this, though I know it is easier said than done.

I can relate to losing things that you loved doing as a result of the accident. But please know that it does get better with time. It can be very long and slow, but it does get better. And we find new ways to live our life and new activities that give us joy. It has taken me a long time to realize all of this, and I still struggle with it some. But you have to keep going! You are doing great.

I have seen many therapists and some have a hard time understanding TBI. One that deals well with grief and loss may be helpful, as we have lost a lot from these injuries. Acupuncture also really helped me. You may look into some of those more holistic therapies.

Take care!

Definitely good idea to see if it's vestibular function that's off or if it's vision related. I did physical therapy for a year before I finally went to Neuro opthamologist and they diagnosed me with convergence insufficiency meaning my eyes couldnt track objects properly. Tinted glasses helped me immensely. There is a reason you saw Hillary Clinton wear glasses after her concussion. Unfortunately this can be expensive and hard to find dr in this area so people don't think of it for concussion care.

Mark and I disagre about chiropractic care and I am of the opinion that all are quacks and can be dangerous.

Sounds like a bad fall, it's surprising how many people break bones falling from horses, lucky your spine wasn't broken. You mention a messed up neck, I have a feeling that will be the injury that will take longest to heal.

Like 'todayistomorrow' I'm not sure about chiropractors I'd see how you go, I found massage more beneficial and trying to keep good posture at all times including in bed. The healing process probably won't be linear, it will have plateau's which can be disheartening but everyone here has been through the bewildering world of head injury so you are not alone. The body will heal at its own pace all you can do to help is give it nutrition and rest and some light exercise. The psychological impact can creep up on you over time, many including me have become depressed, but by being aware of it you can deal with it head on (pardon the pun).