Pcs help please
 

Hi, new to the forum and desperately in need of some advice.

I suffered a concussion in January of this year. Symptoms continued and I was told it was PCS. To this day things aren't any better and I was also recently diagnosed with depression and severe anxiety. They reckon that one thing has basically lead to the other. To be honest I'm not so sure where the symptoms for one begin and the other end.

Where I live no one has heard of PCS and no one understands or even really believes it. It's been going on for so long now that my boyfriend/family think I'm just dragging it out and faking it. I've basically tried to stop complaining or mentioning anything because I know everyone is fed up with me. Naturally they assume that everything is ok then. I'm facing daily jibes of how I'm just lazy, don't want to work, there's nothing wrong with me etc. This is particularly upsetting because from the age of 14 I worked full time hours through full time school, tech and uni with a bit of voluntary work on the side. I'm 23 now, finished uni last year and this is the only break in work I've had. I've worked my butt off up until January but now I'm just lazy.

I'm at the ten month mark now and I'm not coping. I just want everything to end. Any advice would be greatly appreciated. How do you cope? How do you manage pain? I really don't know if I can take it anymore.

Thanks.

Welcome
 

Hello and welcome here. This is a good place.

Why not make a signature thing that tells about your symptoms etc.

Read the vitamin stickie at the top and the stories about hope. There is hope to be had here.

I am not that medically minded and am tired. My tinitis is acting up and I need to rest.

Anxiety is common with PCS so reduce stress every way you can in your life. I won't go on and on as I am just plain worn out.

Take care

pm

Thanks
 

Thank you for your reply. I can't figure out how to do a signature so ill just outline stuff here I guess.

In January I was walking to catch my lift for work. It was really icy and the hill was steep so I was being cautious. I slipped anyway and hit my head off a sharp pointy wall. I was shocked and everything happened so fast that its not really all that clear. I got up feeling really embarrassed above all else and continued on my way. I felt bad that day and got sent home. Went to hospital and they told me it was a concussion.

My symptoms were headache, lack of balance, slurred speech, feeling of dreaming while awake, seeing spots, nausea, weird thumping in ears, dizziness, feeling exhausted, unable to sleep, unable to concentrate on anything.

I went to the docs and hospital a million times in the following weeks as nothing improved. Told it was post concussion syndrome by the hospital. My GP didn't know anything about it really. She actually looked it up while I was there.

It's now ten months later and everything is the same except for the slurred speech. I do find it hard to think of the words I'm trying to say though. I've also been diagnosed with depression and anxiety disorder so there's a million symptoms from that too: panic, feeling hopeless, crying spells, thoughts of suicide, inability to leave the house etc.

I'm really at my wits end.

dizziness
 

Hello again!

I had pretty bad dizziness for awhile. It got better when I got vestibular therapy. I had to get a referral from a neurologist for that.

I have not had really bad headaches, but have had a few. I had to quit drinking caffeine and have stayed off of that even now that I am better.

Is there any way you can rest your brain? I mean really give it rest like no reading, no TV, no screens, nothing stimulating -- even driving etc.

I had to leave work for awhile in order to get better. Some people have no choice but to try and work while healing their brain.

I know other, very experienced people will weigh in here. I am limited with what I can tell you for getting better, but I do offer hope.

all for now

pm

Please weigh in
 

Hello other more experienced members

Please weigh in here. I think this individual could use some help.

Thanks for having a look.


Sincerely,

pm

Weyhey,

Welcome to NeuroTalk. You have been given some good comments to start. You really need to read the sticky at the top about Vitamins. Check out the links at the bottom. They will be useful for your family and friends to understand what is happening to you.

Anxiety is probably the most common symptoms of PCS other than the pain/head aches.

The anxiety comes from your brain's inability to process the many sensory stimuli that a healthy brain can process without even trying. Our brains get easily overwhelmed. The filtering mechanism that stops the extraneous stimuli from needing to be processed often stops working.

Read the TBI survival guide at www.tbiguide.com to get a better understanding. When you understand your injury, you can better explain it to others.

The simple solution is quiet rest. This means seriously limiting stimuli, sound, visual, tactile, smells, etc. You want to do just enough activity to keep a good supply of blood flowing through your brain. A good rule of thumb for activities is activities and tasks you do with your hands, except keyboards. Playing solitaire with real cards. Knitting and crocheting. Other manual crafts or tasks.

Walking a dog in a quiet area can be OK. Get some ear plugs. I like the yellow foam cylinders that you twist until they fit in your ears. They then swell back to fit your ears. They will help you block a lot of ambient sounds. they will also help you hear your foot plant . It is amazing how hard a foot plant can be. It resonates into your head. For some of us, this pounding only makes our symptoms worse.

btw, the pounding you hear is likely your heart beat / pulse. It was always there but you brain was able to ignore it. Your blood pressure may rise from over-stimulation. This can make the pounding louder and even cause a head ache.

Please feel free to tell us about your struggles.

My best to you.

Hi Wheyhey,

I just joined too. I'm 29. I had a concussion in July. I have developed seizures (or, "seizure-like" activity) as well as a list of other things that come and they go.

I have had anxiety attacks since the concussion. They are so terribly frightening. I just sit through them, and tell myself they will pass. Also, I allow myself to have bad days. If I experience a good day, or a better day, I thank God and try to live in the moment and soak it up.

I recently had a horrible time getting my loved ones to understand what I am going through. It's so easy for people not to realize what's going on. I am trying to find the supportive people and stick to them. I also like this forum because people are pretty upbeat and it's a place for "mental rest" = knowing people will understand.

You are 23 which is good because you have many years to heal. Also, try getting second opinions if you can. I am in the process of doing that.

VB

Thanks
 

Thanks for the replies.
Can I ask what vestibular therapy is poetry mom?
I think my brain is 'relaxed' most of the time. I can't really concentrate enough to read or watch tv anymore, which is a real pity because reading was my favourite thing.

Mark in Idaho, thanks for your input. I'm slowly working my way through the TBI guide but the vitamin sticky kinda confused me. Do vitamins really help? I'm on cymbalta right now and I know it has a lot of interactions with other meds/pills. I know you can't take the 5-HTC thingy anyway. I suppose I should ask my GP about what's ok to take and what isn't.

I used to like sewing but the machine was too noisy. Earplugs! Such a simple solution that I never would have thought of. I ventured out yesterday and got myself some of the wee yellow ones like you said. Oh my, they are amazing! Thank you so much for suggesting that.

Vanilla bean, seizures sound so scary. You poor thing! I hope that it is resolved soon. I know what you mean about the anxiety attacks. It truly is terrifying. I always feel like I'm going to die at the time. Afterwards I feel stupid for thinking that, but at the time it feels very possible.

From reading through this forum, I have found so much info I didn't know before. I didn't realise that depression and anxiety were common in those with PCS. At the minute I'm only being treated for the depression and anxiety which seems a bit silly now if they're actually due to the PCS and nothing is being done for it.

Thanks guys for your comments and inputs.

Good nutrition for your brain is important. The B's help maintain the blood brain barrier and also help the myelin sheath around the nerve fibers to repair and strengthen. There are no vitamins or supplements that will interact with Cymbalta.

Did you mean to say 5-HTP ? I do not recommend taking 5-HTP. The brain does not know how to control the amount of 5-HTP available. L-Tryptophan, the precursor to 5-HTP is metered by the brain as it transforms to 5-HTP. This means the brain gets the amount of 5-HTP that it needs, not any more.

Try watching TV with head phones. The focused sound may make a big difference in your ability to focus on the dialogue. You could try this first by using ear buds and watch a program on Hulu or other online TV source on your computer. If it makes a difference having the directed audio (ear buds or ear phones), then investing in a wireless set of head phones for TV watching would be worthwhile.

I doubt you will get much support from your doctor for taking vitamin supplements.

More later regarding this.

My best to you.

vestibular therapy
 

Hi again

Vestibular therapy is -- or has to do with the system that regulates balance. The therapist gave me eye exeercises to do, and also some things like walking and looking up and down at certain intervals.

She examined me and found I had some pursuant eye issues which were making me feel dizzy. ((Riding in a car was horrible and I had to cover my eyes in order not to feel sick or too stimulated))

I got a referral from a neurologist to go to a vestibular therapist.

I hope this helps.

sincerely,

pm

So I should start to take some of those B vitamins basically? I don't really know much about any of them. I've never taken a vitamin in my life.

I watched a wee bit of game of thrones tonight on my laptop using earphones and I think it did seem a bit better. I didn't manage the whole episode but it feels like an achievement of sorts. Thank you for the suggestion.

Poetry mom - thanks for explaining that. I think I understand. I was watching my cousin play a game and he was flying a plane, making it dip up and down. I felt so sick watching it. Also when watching a 'relaxing' video on YouTube of the ocean, the waves made me feel sick. How strange.

Another thing guys, all day yesterday and today and I've had the feeling of not being able to breathe properly. Kinda like I really need to take a deep breath but can't and I'm having to consciously think about each breath I take. Any notion of that kinda thing? I have to admit, it's a bit scary.

Thanks again.

Take the whole vitamin regimen. Your brain needs nutritional support.

Do not try to watch a show or video game with a lot of movement, flashing lights, sounds, etc. You need to seriously moderate your visual and auditory stimuli. No sneaking peaks or testing your ability to handle stimuli.

Wave movements are not relaxing to a challenged visual processing system, especially when they are on a small screen.

I have a problem with High Def video. The sharpness of the video stimuli has too many pixels for my struggling brain to process. A good optometrist knows to detune the sharpness of a prescription of lenses to allow the eye and brain to relax. You need to take the same efforts to not over-tax the visual processing with high def stimuli.

Give it a try. You will see it helps.

My best to you.

Since I last posted there, I checked the nhs website about all the vitamins you listed, particularly the Bs. What it said has kinda knocked me for six now. I fully intended to take them but the dosages you suggested and what's listed on the nhs site are freaking me out. If I remember correctly you suggested 500-1000mg of B12 daily?

From the nhs site:

"Adults need approximately 0.0015mg a day of vitamin B12.

What happens if I take too much vitamin B12?

There is not enough evidence to show what the effects may be of taking high doses of vitamin B12 supplements each day.

What does the Department of Health advise?

You should be able to get all the vitamin B12 you need by eating a varied and balanced diet. If you take vitamin B12 supplements, do not take too much because this could be harmful.

Taking 2mg or less a day of vitamin B12 in supplements is unlikely to cause any harm."

I'm too new to the site to be able to post the link.

I have too much anxiety to be able to take 500-1000mg without absolutely freaking out now. I once to a herbal sleeping remedy and kept myself awake for two days straight because I was convinced if I fell asleep I would never wake up again. I'm really not sure how I'd react if I thought I'd ODed on vitamins.

I think you are mixing up milligrams (mg) with micrograms (mcg)

B12 orally is not well absorbed. It has to be taken on an empty stomach, for passive absorption at all.

1mg =1000mcg. In a one milligram (1000mcg) dose orally there is a study showing absorption of 13 mcgs.

The FDA has not set an upper limit to B12 ingestion, because in all the years it has been researched NO toxicity has been demonstrated.

The amount of B12 in food is normally 1-2mcg ....and the way it is absorbed, it must be in stomach acid for the special carrier in the stomach called intrinsic factor, to work, and carry the tiny micrograms thru to the intestine where they are absorbed and carried off by transcobalamin.

Many people have this delicate system broken and therefore oral tablets are quite high seemingly, but in reality very little is actually absorbed.

This is my B12 thread, and it includes the link to NIH you read.
But you need to read more slowly and carefully, and perhaps more than once to understand it all. This is why doctors don't "get it" as well.

http://neurotalk.psychcentral.com/thread85103.html

B12 is essential for maintenance and repair of the nervous system. Any tiny error in its absorption and transport, and you will suffer. Low acid in the stomach is one common cause, because people take the OTC acid blocking drugs too much. New estimates are that about 40% of people are therefore low in B12 today.
In the link I gave you above, in the first post, is a video on YouTube... I suggest you watch it first of all.

I just restocked my B-12. I was shocked to find it hard to get a small dose B-12 . the smallest dose I found was 500 mcgs. The common sizes were 1000, 2500, and 5000 mcgs. The packages promote these larger dosages as needed for proper metabolism.

The methyl version of B-12 is now readily available. It comes in capsules for swallowing and in lozenges for sub-lingual consumption. I decided to change my routine a bit. Now, I take my B-12 lozenge on an empty stomach with my morning L-Tryptophan. I chew it and let is dissolve in my mouth.

Weyhey,

You could ask for a B-12 blood test. It does not tell you how well your body is absorbing B-12 but it will likely tell you if B-12 is present in your blood. The goal is to have a blood level of about 1000 pcgms/mL.

Getting your folate (folic acid) level checked is also helpful. B-12 and folic acid are necessary for nerve repair. Folate levels should be greater than 20.

Regarding government web sites about vitamins. The pharmaceutical industry has tried to negate any value to vitamins as a health aid for decades. This attitude greatly influences the NHS and other government health sites. They established the RDA (Recommended Daily Allowance) as a guideline. It is more of a bare minimum level to prevent malnutrition, not to promote best health.

Very few vitamins have a toxicity level. Vitamin A is the only vitamin with a serious toxicity issue. Nobody is suggesting high doses of Vitamin A. There is a large field of work regarding mega-nutrition or high dose vitamin supplementation. The dosages in my regimen do not come even close to these mega levels. Too much vitamin C (10 grams a day or more is common ) will cause loose stools but not a health risk.

You will likely see a great benefit to your anxiety levels. The B vitamins are important for helping the brain tolerate stress. Being able to sleep without having to lay there worrying about whether you will wake up will be a great benefit.

As you look at these issues, keep in mind:

1 gram = 1000 mgs ( milligrams ) = 1,000,000 mcgs (micrograms)

1 milligram (mg) = 1000 mcgs (micrograms)

1 gram of liquid (water) is 1 cc (cubic centimeter). This is about 12 drops of water. (some people take B-12 in liquid drop form)

The NHS comment was "Taking 2mg or less a day of vitamin B12 in supplements is unlikely to cause any harm."

They are saying, 2,000 mcgs or less a day of B-12 in supplements is unlikely to cause any harm. My regimen suggests 500 to 1000 mcgs per day. I actually consider my regimen to be very conservative. I do not believe the 'more is better' concept. I follow the take enough to get the good benefit. Taking more than is needed tends to get expensive, too.

So, please try to relax and give supplements a try. Supplements have changed the life of many people as their malnourished brains are given proper nutrition.

btw, Organic foods are not necessarily any better at providing necessary nutrition than non-organic. Organic farm soils can be just as depleted of vitamins as non-organic soils. Plus, environmental toxins (in the air and water) put an extra burden on the body's systems so supplements are more important.

My best to you.

Are you on meds?

I was once in your shoes, it will gradually get better. Right now your body/ brain is in flight or fight mode. As Mark said eat healthy foods, follow the vitamin routine.

B complex 100 vitamins were important to my healing as well as other vitamins and supplements

http://neurotalk.psychcentral.com/thread181974.html <-- Mark's thread on helpful vitamins / supplements

Audiobooks and podcasts have been my way of staying sane without exacerbating symptoms.

If you can and do watch tv, remember to stop before your symptoms come on. Otherwise your next sleep/recuperation period will be to get your brain back to where it was before you watched tv rather than one step closer to recovery.

Good luck.

MrsD - I did mix them up, thank you for pointing that out to me. I've bookmarked your post and am reading through it. Also started watching the YouTube video but it will take me some time to get through it. That's pretty terrifying what the deficiency can do!

Mark - if I asked my GP could I get my B-12 and folate levels checked or would it have to be a specialist?
Anything to reduce my anxiety would be amazing. It's getting worse and more irrational to be honest. I've decided that I will take your advice and get some vitamins. Would the B-12 and a multi vit be sufficient to start off with? I would love to try everything you suggested but unfortunately I'm living out of my parents' pockets at the minute. They're already paying all my bills so I'm reluctant to add anything more to the list.

Arty - I'm taking cymbalta and very occasionally co-codamol for my headaches. Thanks for your words hope! I just wish the getting better would hurry up a bit lol.

Black - thanks for the suggestion. I've never really been one for audiobooks unless I've had the physical book to follow along with but I'll give it another try. Being unable to read is one of the most heartbreaking things I'm dealing with! I miss the escape and that is something I could really use at this time. Could you suggest any good sites for them?

Thanks for all the replies. How are you all doing by the way? I've been so busy being selfish and moaning about myself I haven't asked a single one of you how things are for you's.

Weyhey,

I'd start with a B-12 500 mcgs, a B-50 complex, a good multi like GNC MegaMen, a Vit C, Vit D, and Vit E. My regimen costs me about $1.50 per day. A Cymbalta costs $3.00 or more a day. The vitamin regimen may make it so you can stop the Cymbalta.

A GP can order a B-12 and folate levels blood test. Get D3 checked, too.

Instead, don't waste your parents money on lab work and just start the vitamin regimen.

My best to you.

How much would all that cost roughly to buy in one go? I forgot you were in the States. I live in Northern Ireland so all my health care and prescriptions are actually free. When I said bills I meant phone/pet insurance/credit cards, etc.

Thanks.

Update
 

I was able to purchase ABC plus and Busy B from Holland and Barrett a few days ago. That's all we could afford right now but it's a start. I've been taking them in the morning so I'll just stick at it and hopefully it might help a bit.

Apologies for lowering the tone, but my word! Almost had heart failure until I googled and saw that riboflavin can have *ahem* interesting effects on the colour of one's urine. Should come with a warning label lol.

Thanks to everyone again for being so helpful.