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Concussions- How Many Is Too Many???


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Hi All,

With my many syncope falls, I get injured quite often. I am always covered in bruises. 99% of the time I don't really injure myself... aches, pains, bruising, that short of thing. Well, over the weekend I fell and hit my head on "something" in the bathroom and got myself one of the worst concussions yet. This was #8 I believe since we've kept track... but after so many my neuro told me today that I can get them so easily I may not even know. I hit my forehead REALLY hard on something- since I wasn't standing but was on my knees the only thing I can think of is straight down on the floor or the toilet THEN the floor. It looks like two bumps so that must have been it. It looks horrible. My entire forehead is just a huge bump and you can't really notice too much yet unless you look at me sideways and you see the size of the "bump". Well, I know it will get ugly... just looked in the mirror and forehead is starting to bruise and the beginnings of one black eye is starting- this has happened before and it looks like someone just beat the daylights out of me.

I am starting to get scared at the number of concussions I have had. How many can I have before I am going to get some permanent damage done to my brain which already doesn't function all that great due to brain fog and concentration issues AND some mild cognitive impairment after my last concussion in November (but I had also had one just 10 days before) so those two were almost combined. This time I am really scared by some of my symptoms, not so much physical.. of course my head is going to hurt..it does every day anyway so this is just a little worse... but some of my emotional and mental: EXTREME anger out of nowhere. I have become enraged more in the last couple days than I can remember ever. Emotional outbursts. Feelings of giving up and discouragement... I am NOT suicidal and would never hurt anyone else- but even though I want to live and get better, when the nurse of the assessment line asked me these questions I told her: No, not suicidal. No, would never hurt others. She asked would I hurt myself? I said: "No, not intentionally, but if I fainted and hit my head hard enough I would ONLY suffer for my children, family and loved ones. I don't really care for myself. I recognize how unhealthy this is and believe me I am getting help! I have an appt. with a psychiatrist tomorrow.

Bottom line, I know ideally we would all never WANT one, but at what number become "TOO MANY?" I have asked several doctors this question and no one will ever really TELL me, other than just to say... let's just focus on getting any more. Well, OF COURSE I know that.. but is this number dangerous already or do I have a long way to go before I need to really worry?

Thanks!!! Jen

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Dr. Sanjay Gupta did a great special on concussions a couple of months ago. They patients got theirs playing sports, but the info on concussions was really interesting, especially if you get injured again before your concussion is healed. Maybe it's available online at CNN? I think you would find it informative.

Take care!

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I've had many, and one during one of my events, my head hit so hard that I actually damaged the vitreous in my right eye...the stuff is like jello, so image a blob of jello that gets split when you hit. I can still see fine, but I have a spot in my vision that's permanently less saturated in color and black looks grey.

I've probably had more than 10 concussions.

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That's a good question I've pondered (especially since I'm a bleeder, have syncope, am alone a lot and cardiac specialist tells me that I will have fewer warnings of faints). I have seen where some even sleep with helmet but having neck problems, and being side/stomach sleeper, I just don't know how I could get used to that. The bike helmets I have don't really come down enough to protect the eyes/forehead although they do extend just a bit beyond the forehead.

I would think 1 concussion would be enough to consider wearing a helmet around. I've been very luck so far as 3 places I could have got seriously hurt/killed--once when passed out in yard, just missed the stone border of flower bed. Once hit kitchen floor with back of my head when fainted (maybe being on crawl space/having some spring in the floor helped) and another time I started to 'go', DH caught me as I was doing face-dive into our concrete driveway.

Certain things with housekeeping (like getting up on stool to get ceiling fans or sqatting to regulate the fireplace insert or to reach in/out of oven or reaching up on stool into high shelf/closet/cubbords are scarey to me--needless to say, I don't do much with stove or oven when nobody is home and I adjust the fireplace only if somebody right here).

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Jenglynn, there is nothing I can write that will comfort you on this topic. As I'm certain you are aware, instead I want to focus on telling you that research in brain damage repair has come a long way. It is still probably a few years away before it is widely available, but the early research is very promising and don't lose hope. There are clinics out there right now that offer stem cell therapy for brain damage, I don't know how much trust you can put into them, but if your symptoms get really bad it might be worth looking into as you might not be able to wait for domestic research to translate to the clinic.

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Hi Jen,

I'm glad you brought this up, since I'm also dealing with this issue right now. I've had seizures then fell and hit my head 3 times in the last 10 days. I don't know what's going on, but that's 3 times too many to me! I've had some serious concussions when I was younger, too...motorcycle accident, etc. I'm probably up to about 8-10 now.

Jangle - Where are the clinics that offer stem cell therapy for brain damage? I've also heard that there are places that will do an MRI on people like me who have pacemakers. Do you know anything about that?

Thanks!

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IMO, any concussion is 1 too many. I've had 10 or so in the past few months that led to very minor permanent brain damage. I get a lot of visual disturbances, cognitive function is down, constant headaches, and I started twitching a lot more since my last one.

I started wearing a helmet about 2 months ago and it's probably the best decision I've made. I wear it any time I am going to be up and moving a lot since I get almost no warning with the faints. It's hard to get used to at first, but I'm quite thankful for it. I was just looking at it the other day and noticed how beat up it's starting to look - better it than my actual head!

It's quite the confidence booster and gave me a little more independence.

Also, mine has a chin guard sine I tend to fall on my face a lot and have now chipped 2 teeth.

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Alyssa,

Interesting you mentioned the twitching!!! OMG.. Ever since Sunday and the last one my legs will twitch- I mean violently twitch- almost every time I'm sitting- sometimes even lying down. My last one did some visual damage I'm afraid- a couple weeks ago I started getting all kinds of odd visual symptoms: double/triple vision, spots, stars, bright lights just "appearing" and staying there or odd things floating around. And my vision is terribly blurry lately. I'm not going to panic yet with this one and visual effects because I look awful today- both eyes are black and blue- and one eye is almost swollen shut- that isn't going to improve my vision much, is it? :)

I was worried that the twitching was a new autonomic problem... It's so hard to tell- like most of you- I have Post Concussion Syndrome but so many symptoms overlap.

I mentioned a helmet to my doctor and he told me at this point it wouldn't help at all, I'd still get one with the helmet on. He thinks I've probably had a least twice as many as I think I've had because I tend to only get seen if I'm bleeding and/or obvious head trauma. What kind of helmet did you get, Alyssa? It seems like a helmet would at least protect a major one from being a minor one, right? I may look into it on my own. It's really scary to me because now I notice the cognitive issues and everyone around me is telling me how much I've changed (and not in a good way apparently) I am mean, angry, say inappropriate things, etc.. Stuff like that. Personally, I don't see this at all, but I've started to feel very attacked and ganged up on by my family. Any issue,, anytime they don't like my opinion, they blame my head injuries. It's frustrating to say the least! I always thought I was so lucky to have such wonderful family support of my autonomic issues- but this has become a nightmare!

Jen

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I have myoclonic jerks which I am pretty sure is caused by the autonomic issues. The muscle twitching though, is definitely not. I have it a lot in my face and sometimes my mouth with get stuck open and you can see all the little muscles on that side of my face moving. This began after a head injury that led to a seizure.

I know what you mean about looking all banged up. That's one area that my helmet has definitely helped, I don't get nearly as many black eyes and bloody noses.

I use a hockey helmet at the suggestion of my doctor. He wasn't on board initially, but then he realized that the amount of faints I have per day is causing more and more problems. I even shattered a glass coffee table with my head once - how I didn't get anything besides a knot on my head is beyond me.

I am looking into ordering a "special needs" helmet that I saw on ebay as I like it better and it's not as bulky. But a hockey helmet definitely offers the best protection.

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IMO, any concussion is 1 too many. I've had 10 or so in the past few months that led to very minor permanent brain damage. I get a lot of visual disturbances, cognitive function is down, constant headaches, and I started twitching a lot more since my last one.

I started wearing a helmet about 2 months ago and it's probably the best decision I've made. I wear it any time I am going to be up and moving a lot since I get almost no warning with the faints. It's hard to get used to at first, but I'm quite thankful for it. I was just looking at it the other day and noticed how beat up it's starting to look - better it than my actual head!

It's quite the confidence booster and gave me a little more independence.

Also, mine has a chin guard sine I tend to fall on my face a lot and have now chipped 2 teeth.

Alyssa,

What kind of helmet do you wear? I am so scared to think of hot summer days coming (altho I hate the cold/heat is my enemy, too, now). DH was just longing for summer last night while in my mind I felt sense of dread (since this past summer was the most debilitating one of my entire life). I didn't understand what was happening to me. My DM had broke her front tooth in faint and DH broke one in a slip and fall. But if this summer is like last and I need to go outside, then I was seriously thinking of wearing a helmet--too many times on the ground either voluntarily or by force.

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My son has muscle twitching and tremors. They started before he ever had any jerking episodes where he bangs his head and continue to this day, often in the evening. I don't know why your Dr. would discourage a helmet. Would it hurt? And it might help!

Also, I don't know why the Drs. don't recognize the jerking, myoclonic jerks, and tremors as part of the syndrome. I think a few do, but generally not. Maybe I am wrong on that and would appreciate anyone that has any info about that. Our exp. is they want to put it psychological, but they came on exactly when ALL his other symptoms did, are worse when his symptoms flare up, are better when they all the other symptoms are better. At least Beverly Karabin said that though this symptom is on the edge of the symptom spectrum that it could be autonomic. Is seems there are a lot of people on here who have them.

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Alyssa,

What kind of helmet do you wear? I am so scared to think of hot summer days coming (altho I hate the cold/heat is my enemy, too, now). DH was just longing for summer last night while in my mind I felt sense of dread (since this past summer was the most debilitating one of my entire life). I didn't understand what was happening to me. My DM had broke her front tooth in faint and DH broke one in a slip and fall. But if this summer is like last and I need to go outside, then I was seriously thinking of wearing a helmet--too many times on the ground either voluntarily or by force.

I wear a modified hockey helmet. I put in memory foam padding on top of the existing pads for extra support and changed out the chin strap for one that basically covers my whole bottom jaw. I only wear the strap when I'm going to be up for a long period of time since it makes it hard to eat and I feel weird talking in it lol.

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Technically, there is no safe number of concussions.

Fwiw, increased agitation/anger is often the sign of a head injury. I'd suggest you highly consider a helmet.

Concussions are caused by blunt trauma to the brain itself when it bounces off the inside of the skull. As you're probably aware, each successive concussion you have makes you more susceptible to concussions. This "glass jaw" phenomenon is readily seen in boxers and pro football players. It'll take less and less of an impact to trigger a concussion.

There is no magic number. You don't suddenly hit 10 concussions and turn into a vegetable. Instead, each concussion creates cumulative damage. It'll also be different for every person as well. In my case, my brain's actually shrank a bit from the anorexia, so there's a larger gap between my brain and skull, which means my brain can rattle around far easier than a normal person.

I started wearing a skateboard helmet (the kind with the soft squishy pads) when my POTS got really bad from the refeeding process of anorexia recovery, primarily after eating and when I first woke up.

I did alright with that until one day I chipped a front tooth after passing out in the shower. So...with the persistent nagging of friends, I got a full coverage hockey helmet w/face mask. I really dislike it, particularly the feeling of the chin cup but can't deny its kept me out of the ER and concussion-free.

I "graduated" last year to a double layer karate/martial arts soft helmet. http://www.karatedepot.com/pr-hd-03.html . I'm not passing out as often and aren't randomly passing out, so I don't need the facial coverage. This helmet's MUCH better on just about everything.

First, its better for concussions than a hockey helmet. It was specifically designed to prevent concussions from falls, not a 10mph collision from falling off a bike or getting hit with a 90mph hockey puck. Its nearly 2" thick at the forehead, temples/sides, and back of the head and its soft, meaning it'll almost fully compress and slow down the impact for minor bumps (like hitting your head on a table, shower, etc) whereas a bike or hockey helmet are designed for catastrophic hits and won't compress much in a minor hit. There's a huge difference in the way bumping my head feels in the karate helmet compared to the hockey helmet. I still felt the hits with the hockey helmet. With the karate helmet I don't even feel it when I bump my head.

Keep in mind that the goal of a helmet is to slow down how fast your brain goes from in motion to zero mph. The speed of this deacceleration is the difference between setting your head gently on the floor vs slamming it. The more space you can put between your head and whatever its hitting and the more the helmet compressed, the lower the peak forces you're hitting your head with.

Second, it's soft so it conforms to the shape of my head. The difference in comfort is night-and-day. I actually don't mind wearing this one for extended periods of time. Wore it for 48+ hours straight a few months back when I had the flu and had it coming out of both ends and was completely dizzy/stumbling around. I didn't even notice that I was wearing it until one of my friends came over with soup and thanked me for wearing it.

Third, It covers more of my head than the hockey helmet. Since it covers the ears and part of the jaw, it doesn't put my neck at a strange angle if I fall asleep with it on. I'm a side sleeper and I just use a thin pillow. At this point I actually sleep better with it on. Its more comfortable than the pillow alone. Oh, also the chin strap is elastic, so talking/eating aren't an issue. it also covers most of the cheeks so I'm not needing the mask. They do have masks and models with chin pads if needed.

Fourth, I'm not as embarrassed to wear it. It actually looks decent. Let's be honest, many of you reading this post know you've hit your head before from your dysautonomia. You know a helmet probably would be a good idea but are too embarrassed to do it. When my dr suggested an epilepsy helmet, all I could think about were the kids in school who rode the "short bus". Those institutional helmets look terrible, aren't comfortable (only Charlie Brown has a head shaped like those helmets), and they don't have anywhere near the padding my karate helmet has nor are they tested to any standard. I talked with a local neuro and he actually recommends these helmets over the medical ones for his epileptic patients with drop seizures. I'm still not thrilled to go out in public with it, but don't mind it around my friends.

I bought mine locally from a karate supply shop for $30. Beware of the size chart at KarateDepot.com -- Its not right. The manufacturer's chart is here: http://macho.com/docpages.aspx?pagename=CUST-SERV-SIZE-SPAR

You actually want it to fit very snug so it doesn't move around which is annoying and can be dangerous if it slips and exposes your forehead when you fall. I tried an XL initially but it was annoying and kept moving around. The L felt tight initially (especially when you're not used to wearing it) but now I actually don't notice it at all.

I say go for it! Get a helmet before you inflict more damage upon your brain that could have easily been prevented. And that's not just for jenglynn, but anyone reading this thread who faints and has hit their head. Seriously, don't let your emotional discomfort and embarrassment get in the way of protecting your brain! Brain damage is mostly irreversible. Even if you just wear the helmet when you're home alone (isn't that when we're usually at the most risk anyway?), it'll make a difference.

Alyssa, you might want to try this helmet as well. As you can tell, I'm quite pleased with mine.

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Funny that you say hockey helmet.... My 2 boys play hockey :) They would think it was hilarious to see me in one! Not sure why he would discourage- only thing he said that "it will give me a false sense of security." that just seems silly. He said that even the slightest bump to my head would cause a concussion- helmet or not.

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Sadly, that's not the most illogical statements I've heard a doctor make. That's akin to saying driving without seat belts would make us more cautious drivers or intentionally hanging around people with the flu because I had a flu shot.

I find that I take fewer risks with the helmet on, as it reminds me that I do have a medical condition and need to be careful. For me, half the battle is getting myself to accept that I'm sick and try to convince myself that I am indeed not feeling well. Difficult to ignore when I have a helmet on my head.

I'd say you should get a helmet, especially with all of the damage you've already sustained. It's not like you have a major conscious choice to faint or not.

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