postpone wedding?
 

I'm struggling with whether or not to postpone my wedding due to PCS. It's 3 weeks away. I have constant pressure headaches, often feel lightheaded, and feel not as sharp cognitively. I've attempted twice to be around loud music and both times resulted in painful headaches and anxiety like I needed to get out of the situation. I start to feel flush and can't think straight. It took me 3 days to return to feeling just bad instead of terrible.

My fiance thinks I can just take anxiety medicine and I'll be better because that's what she read online. I'll be seeing my neurologist again Monday who originally though I'd be better in 1 month.

At this point, we'd lose a decent amount of $ if we postponed it and people have already booked flights and such. The flip side is it's my wedding and I want to be able to enjoy it. The main issue is the music/DJ as I can function "normally" for the most part otherwise. I feel there's no good answer but this point is of great stress to me and my fiance. Appreciate any advice.

Is there a way you could still have the wedding but eliminate or reduce some of the clear stressors like music?

Would earplugs help dull the noise at all? I had my 30th birthday in Vegas 4 weeks after my birthday and i insisted on going since i had friends flying in for it from all over and didnt want to let anyone down. I wore earplugs, took myself out of situations that were uncomfortable or caused too much anxiety...and it definetly wasnt easy.....but i made it through it. You could also ask the DJ to decrease the volume to accomodate you...i'm sure the guests wont even notice the difference.

Its up to you....such a hard decision to make, but hopefully whatever you choose to do will be whats best for you and your future wife. Wishing you the best and hope it all works out ok for you.

yeah, I'd definitely have to let the DJ know about it and maybe eliminate any lights he'd have. I think that's the only option is to reduce my stressors while still being able to have a good party for people to enjoy. If it gets too much for me I'll have to sit at a table far away. I think my fiance is just struggling that it's not the ideal scenario for our wedding but sometimes there's forces outside of our control.

Earplugs are a great idea! That should definitely help a little bit.

Well, if the wedding is the main thing, it's a big issue. If the marriage is the main thing, then this is part of better and worse...

I know it's hard because we get wrapped up in wanting it to be the perfect day, but in the end what matters is the two of you and your commitment to each other. All the rest is just details.

well said Eowyn. Thank you.

I am concerned that your memories of your wedding will be severely damaged by the overwhelming stimuli. Add that to the already stresses of the weeks coming between now and then and it is a recipe for trouble.

I think you need to have a serious sit down talk with your fiance' and lay down the law. If you get overwhelmed, nobody will enjoy the honeymoon. She has a decision to make. Either tone the wedding down substantially or risk a less than desirable honeymoon. If she refuses the first and gets the second, she needs to agree to not hold it against you.

Your comment about her comment <My fiance thinks I can just take anxiety medicine and I'll be better because that's what she read online.> leads me to believe she is not on-board with your PCS yet. She really needs to understand this. Has she watched the "You Look Great" series by John Byler on YouTube? She really needs to watch all six episodes. She also needs to read through the TBI Survival Guide at www.tbiguide.com

Your wedding, your honeymoon and your marriage all depend on her fully understanding your condition and these other issues.

As a safety procedure, you can have the DJ start out with quieter music for the first dance. Then, if you have trouble with the sounds and other stimulation, you need to have a predetermined place to get some peace and quiet. Occasionally ducking out for a break may help you endure the rest of the time.

I know that just the room full of voices would do me in. Be prepared for overload from the voices too.

Hope you can find some common ground with your fiance'.

My best to you.

I would agree with the others that this:-

is not good enough from her. Living with someone with that sort of attitude to your injury will severely hold up your recovery, either because she'll make you do too much, or because you'll be constantly stressed with arguments when you refuse to do too much - she needs to change this attitude.

Since she's prepared to read up on PCS on the internet then get her to read this:-

http://bjp.rcpsych.org/content/183/4/276.full

It's not too long, it's very clear on the fact that these problems have a significant organic cause (ie are not just anxiety) which needs to be taken very seriously and it's from a far more respected source than whatever crap she read about you just needing some anxiety medication.

When she really understands the problem, then and only then can you have a sensible discussion with her about what you should do regarding the wedding.

She's definitely not on board. She thinks it's more I just have anxiety and depression and that's causing my symptoms instead of the car crash. I had a lot of stress prior to my car crash but I don't stress about those issues anymore. The only time I have anxiety is when I'm in a loud environment(music or restaraunt) especially with lots of people. I never had this before the accident.

I don't think I'm depressed. I'm frustrated I wake up every day and don't feel like my normal self but I maintain a positive attitude. My personality has definitely changed. I feel fatigued a lot and worn down by the end of the day so sometimes I might appear grumpy or just flat(like I don't have the energy to even smile.) Does that make me depressed? The hardest part is trying to explain my condition to everyone that just wants to say I'm depressed and need to see a therapist. My dad's advice, "you should exercise more. That always helps when I'm depressed." Thanks dad.

My neuropsych test results were normal and they said it my worrying making my symptoms worse. I felt like I did terrible and had trouble writing down images I just saw. I had a really good memory before my accident and now I can remember 5 words out of 15 that I had to recall. But that's "normal" according to the test so I must be making up my symptoms and doing this for fun.

She hates the fact I read this forum because I'm relying on non-DR for advice. She doesn't understand that some Dr.'s, even neuropsychologist don't understand concussions and so even though my test are "fine," I certainly don't feel fine and she's not helping.

End rant/my thanks if you made through it. I'm struggling.

Did the NeuroPsych just say your results were normal or did he give you any scores? Many NP's misinterpret the results due to bias against persistent concussion symptoms. They will also put too much emphasis on the IQ related scores.

How long did the NP Assessment take?

Did you do the Trail Making Test where you followed the numbers for Trail A and alternated between numbers and letters for trail B? If so, did he report your times? This test is often misinterpreted.

It may help to post some of the NP's comments and scores. Their excuses for your behaviors and other symptoms can sometimes be explained as they apply to a concussed patient.

Regarding depression, it does not always manifest as down feelings. Sometimes, it is just the lethargy and slowed thinking. Think of it as mental fatigue that may cause a flat emotional affect. Feeling nothing is just as much depression as feeling negative. Enduring these feelings without anxious reactions is a good direction to take.

Like I said before and Klaus confirmed, she really needs to get on board. If you do not recover to you old self, will she be willing to support and put up with the PCS you? It takes a special person with genuine sacrificial love to support a person with persistent PCS. Just ask my wife or any wife of the other men on this forum.

Has she experience you having a PCS outburst? They can be scarey.

Is there a neurological rehab hospital near you? Maybe they have a counselor or social worker who can help explain this face to face.

Hope you can find the help you need to help her understand.

My best to you.

That speaks volumes right there.

Cautionary tale: My ex-wife and I dated for four years before marrying. I cautioned her in depth of the dangers of being in an intimate relationship with me and why. I gave her a full history of my injuries, and the resulting challenges that came from those injuries. I did all I could to educate her and she appeared to be willing to learn.

Last year, after seven years of marriage, she called it quits. I could better understand her bailing on me if she had no forewarning of these health issues. I certainly understand I'm not an easy person to live with. BUT: Even with four years prior knowledge, she still could not or would not accept the changes that I had warned her might come as I grew older. And she kept it to herself until the day she dropped the bombshell.

Please...be ever so careful before you commit to marriage. Especially if your lady is in denial of your situation.

I've recently had a load of neuropsych tests, all of which had results of 'average' or above. However the psychologist has never suggested that this means that I'm fine and it's just my worrying, she clearly recognises that there are issues which aren't covered by these tests, particularly the fatigue and other symptoms that come from continued stimulation - like my brain can function at a normal level when it needs to (eg for testing), but if I challenge it for too long or too often all the symptoms come back.

My workplace recognises this too, currently giving me work which is at times actually quite challenging, but letting me do it with reduced working hours, a slower pace etc.

Sounds like you've been really unlucky with family, fiancee and even a neuropsychologist who don't understand PCS. It sounds to me like it would be really helpful for you to get a proper diagnosis from someone who knows what they are talking about.

Failing that it sounds like the article I linked to in my previous post might really help. If she's so keen on diagnoses from a 'proper doctor' she'll have to pay attention to a summary of the evidence from the Royal College of Psychiatrists, which defines post-concussion syndrome as symptoms following a concussion which:-

You've had a concussion, you have a number of these symptoms, therefore you have PCS, simple. There's no other way needed to confirm or disprove the diagnosis. My wife has been really supportive throughout, but I don't think she really got what was happening til she read that article.

Does she know you're thinking of postponing the wedding? That ought to make her sit up and listen at least. Or maybe tell her you're worried you might get confused and say the name of an ex-girlfriend at the altar :winky:

All this stress can't be doing you any good :mad:

They said my verbal scores were good and that I could've done better with some other test(didn't specify which.) They sent my report to my neurologist who just mentioned everything was fine. I will call and have them send me a copy of the report. I think I did good on the IQ portion where they asked general questions/simple math. It was mostly recalling numbers,sequences, images I had trouble with and felt a lot of strain while doing them.

3 hours which included 40 min personality true false test. They said I didn't need anymore testing and I was "ok."

No. I did a test where I cross out all 2 and 7 mixed in a bunch of rows with numbers and letters that was suppose to test if I had attention deficit. I did well on that test.

I've accepted this is how I am for now. I don't have any anxiety about it, but occasionally frustration. I'd rather stay off medication if possible but perhaps it might help me?

I have lost it a couple times where I got angry and had to leave the room to try to calm myself down. I know this is not good for me and something needs to change. It's like talking to a brick wall and thinks a magic depression pill will cure me. When she says stuff like, "I think this, your brother thinks this, and your parents think you're depressed. Why do you think everyone is wrong," I start to lose it. I acknowledge that depression is a side effect of PCS but that's just a piece of the puzzle.

Everything makes sense to me and I'd be lost without this forum. Getting advice from people that have gone through similar experiences is invaluable. I know I'm not alone and people can make improvements with this condition. All things considering, I feel like I'm holding up really well.

Thank you for your support.

My comment <Is there a neurological rehab hospital near you? Maybe they have a counselor or social worker who can help explain this face to face.> was aimed at your fiance'. She needs someone to tell her face to face about you condition. I understand you know what's up, but often family receives information better from a third party.

I know, I don't know why such a simple concept is hard to understand especially when I was in a violent crash. A couple days after the accident when I was taking muscle relaxes and pain relievers, I said to her, "I can't believe nothing is wrong with me. How did I walk away from that accident with just minor bruises and neck/back strain. It's a miracle." She thinks I'm reading the internet, self diagnosing myself, and this is causing my symptoms. She acknowledges I have some concussion side effects, but insist it's my stress and anxiety that's the main problem.

At that time, I was feeling well mentally but pain medication blocked a lot of it and I thought it would get better within a week or so. The 1st week was really bad where I was very depressed, had major anxiety relating to my accident, and difficulty sleeping. I got a lot better the 2nd week but haven't noticed an improvement from where I am now. If anything, it's getting worse.

I actually want to get married. I said it's one night, and I'll be able to have fun and it's all about the ceremony for me. It is unfortunate that the wedding cost a lot of $ and I won't be 100% for it but who's to say if I'm going to be better a year(I certainly hope I will be.) I imagine it's hard for her to marry someone that right now isn't the person she's known for 10 years and wants the day to be perfect. She has it in her mind that a depression pill will cure all and I'll go back to my normal self. Maybe it would help. I don't know. If there was a magic pill to go back to normal, I'll take it.

No it's not.

It sounds like you've got a much more level head, and much more insight, than I did in the first few months. I'm sure you'll be fine, it'll make you feel like crap afterwards but you've accepted that already.

Having got married last year, thankfully before my concussion, the most challenging thing on the day by far was the speech, which will be extra hard for you.

Plan a short one, perhaps even use your PCS as an excuse for making it short (when other people don't believe in your PCS it becomes kind of embarassing to mention it, but if you sound like you're not accepting it, how will they?). Just a list of people to thank, say how beautiful the bridesmaids are looking and say lots of soppy things about the bride, is all that's really necessary.

The first dance could be hard too, so keep it simple - again a shame as these things are supposed to be fun.

I worked full time for a whole for a week after my concussion. Partly I was lacking insight but partly my symptoms just hadn't kicked in yet, it's not uncommon. Something to do with a build-up of toxic neurotoxins from dead brain cells causing a chemical chain reaction which Mark can explain much better than me!

Hopefully her main problem is that she's so hung up on the wedding being a perfect day that she just psychologically can't accept something that might get in the way of it. Perhaps once it's over she can start to be more supportive.

I think she should know that she's running the risk of building up a fair bit of lasting bitterness between the two of you - the one time you really need her support she isn't there for you. I'm not sure I would be as understanding as you are being.

I'm sure she's perfectly intelligent enough to understand that the brain is a part of the body just like any other, and can suffer varying degrees of injury in a car crash just like any other.

And after the wedding you can become a right lazy slob for as long as it takes - you deserve it!

I guess the hardest part is finding a Dr. that we can go to to explain what's going on. Not someone that's just going to say I'm fine/or prescribe meds when I don't need them. This what my fiance wrote to me

"I never said or even thought that all will instantly be better if you take anxiety meds. its so frustrating that that's what you are taking from my comments and our conversations. all I was saying was that it might help things and it definitely won't hurt."

I'm not going to take medicine just because she thinks it'll help me and there's articles saying it helps patients with PCS. My anxiety levels are not bad except in certain environments. Why would I take a pill for that when I could just as easily not put myself in those situations??? I feel like the smart thing is to see if this gets better on it's own in 2 months while keeping my stress levels low and a healthy diet. If that doesn't work, perhaps then consider taking something.

Do I see a psychologist, psychiatrist, neuropsychologist?

Her most erroneous statement was a bold one <all I was saying was that it might help things and it definitely won't hurt.">

Taking meds might definitely hurt. Meds should be a last resort except for some of the very low dose meds such as amitriptyline and some anti-seizure meds like gabapentin.

An SSRI (anti-depressant and anti-anxiety) combined with Xanax (anti-anxiety) can be a dangerous combination. It is not uncommon for the uninformed doctor to prescribe the SSRI for daily use with the Xanax as a back up for occasional use such as your wedding.

The other variable is how your body and brain will respond to any meds that are prescribed. I take a strong meds to deal with anxiety/OCD issues that manifest from sensory over-stimulation. The specific med is a honeymoon killer and takes 6 weeks to take full effect and can take a few months to taper off slowly to avoid the misery of stopping the med.

The short acting meds like Xanax have their own side-effects. Here is a list of the side effect of Xanax:
Alprazolam (Xanax) may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

drowsiness, light-headedness, headache, tiredness, dizziness irritability, talkativeness,

difficulty concentrating, dry mouth increased salivation, changes in sex drive or ability, nausea

constipation, changes in appetite, weight changes difficulty urinating, joint pain

Some side effects can be serious. The following symptoms are uncommon, but if you experience any of them, call your doctor immediately:

shortness of breath, seizures seeing things or hearing voices that do not exist (hallucinating)

severe skin rash, yellowing of the skin or eyes, depression memory problems, confusion, problems with speech

unusual changes in behavior or mood thinking about harming or killing yourself or trying to do so

problems with coordination or balance


Not a nice list of side effects.

Maybe a physiatrist with good knowledge of PCS or a NeuroPsychiatrist or to a lesser extent a NeuroPsychologist.

Where do you live? A Brain Injury Support group contact may be able to direct you to some good help.

Has she read the TBI Survival Guide?

I am known to be bold with some of my comments. Life can be a treacherous event to the uninformed. Regarding postponing your wedding, I think the bigger issue is not how you will handle the wedding, but rather how she will handle the marriage if you have some persistent PCS symptoms for the next year or two. As has been said, she needs to get on the same page as you.

Do I see a psychologist, psychiatrist, neuropsychologist?"


I'm placing my vote for a physiatrist like Mark suggested. They specialize in rehabilitation. Isn't that what you need?

My hubby saw a neurologist for almost 6 months with very little progress. He went to a physiatrist who immediately began a treatment plan (physical therapy 2 x's week and speech therapy 1x week - both covered under our insurance - speech therapy is STRONGLY interlaced with cognitive therapy which is NOT covered thru insurance by itself but can be part of the speech therapy sessions which IS covered thru insurance) and we are seeing steady monthly progress now.

He also does Lumosity website on a regular basis and can see increasing scores / capabilities.

Praying for wisdom and guidance for youl...
Amy

Just to butt in one more time, it's worth remembering how much pressure women tend to feel under in our culture to be the perfect bride on the perfect wedding day. Even women with successful careers or feminist opinions have had this thrown at them ever since they were little girls, in a way that we guys haven't.

Your brain is more important than her 'Special Day' but the Special Day is still very important and she will likely be feeling a lot of anxiety and pressure as it approaches. This may well explain a lot of the problems she seems to be having understanding you.

Just a quick update. I started to feel a lot better the week before my wedding. I didn't have the constant headaches and was able to go without taking any pain relievers. We went through with the wedding and it was great. I did have some issues when I couldn't tolerate the music in the limo bus and had to get off the dance floor periodically to go to a quite area. I crashed a little bit the next day due to all the stimulation but was ok the next day.

We went on our honeymoon to New Zealand and it went very smooth. Flying was ok for me thanks largely due to the Boise Noise Cancelling headphones I bought. I don't think I could've tolerated it otherwise as I would've gotten massive headaches. I periodically got some really bad migraines partly due to driving on the windy roads but I was able to manage and had an amazing trip.

I feel better than when I posted last but still don't feel 100%. I wouldn't say I'm depressed but I just feel "flatter" that I used to. I did an assessment for vestibular deficiency or something by a physical therapist and I had some trouble with my balance with eyes closed and I have more difficulty looking left. I plan on doing therapy and seeing if that helps.

My wife still doesn't completely understand what I'm going through and wants desperately to think I'm back to normal. I know this poses a problem going forward so will look to take her to one of my next Dr. appointment.

Congrats!
 

Congratulations! I am happy to hear that your wedding went well! I hope that you can get some help with the PT and balance issues. And bringing your wife is a good idea, sometimes people don't believe it until a doctor says it.
Best wishes.

That's great news that the wedding didn't mess you up too bad.

My boyfriend and/or another family member has always gone with me to all my Dr.'s appt.s - mostly because I can't drive myself to them and I wouldn't have been able to remember what to tell them once I got there or what they said to me for at least the first 15 months or so... :p

BUT - I agree that it's a good idea to always have her there with you so she has a better understanding of what you're going through.

Will she read something if you send her a link to an informative article online?

I am so happy for you and your husband. I wish you many years of happiness and love.