Need advice please - 4 months PCS, setback - start from square 1?
 

Hi everyone,

I'm a 25 year old grad student who's had PCS for 4 months. I'll be upfront with the fact that I know things could be much worse and I'm lucky compared with many who frequent these boards. That being said, I'm not in a good place right now and need advice.

I slipped on some ice and banged my head 4 months ago, initial symptoms were just headache and feeling out of it. Rested for 5 days feeling better each day and then lightly hit my head on a car visor (still get headaches there now), sending me into a tailspin of 3 nights without sleep and anxiety, for which I was prescribed klonopin.

Headaches got worse on klonopin, was on that for 2 months while I mostly rested, then started easing back into activities. My concussion specialist told me that as long as headaches weren't getting to a debilitating point at the end of the day, I could still gradually increase activity. 2 months in I took the exercise exertion test and passed, headaches not being exacerbated (but still present) with exercise.

Over the next month I increased exercise and activity levels. The headahces weren't getting better, but they weren't getting worse, and I was able to concentrate on things for longer, look at screens, even watch TV without feeling overloaded or exacerbating headaches.

I was feeling so good that I decided to go on a backpacking trip with some friends in Utah (I live in NY). My doc OK'd it, and I thought it might be just the fun I needed to get out of this funk. The trip itself went fine, I was able to backpack 3 days, about 10 miles a day, without increasing headaches (or only slightly increasing headaches). I got back home, thinking that if I could handle that without getting worse, this bad dream might be behind me.

A few days after I got back I started feeling worse, getting new kinds of headaches and being less able to concentrate and more easily overloaded. This caused major depression (which I normally never feel), from which I've had trouble getting out. A doctor has recommended an SSRI, but I'm afraid it will hinder healing, although maybe being constantly down or anxious is doing worse to my healing.

Then a week ago (as alluded to on another thread) I bumped my head against the ceiling. I've been assured by people here and doctors that it wasn't another concussion, but I have even worse headaches now, and new ones where I bumped it.

I've also been going through a protracted distancing and probably break up with my girlfriend which has been really hard and caused a lot of emotional turmoil in addition to what I'm going through with PCS.

I'm seriously considering leaving my research, going home and starting from scratch, doing nothing all day for a week or two, and then slowly ramping back, hopefully returning to school in the fall. I think getting away from where I am now might distance me from some of the emotional turmoil I've been going through, and home is somewhere I could more easily rest. Is going back to total rest even helpful this late in the game, or am I in too far for healing to occur?

Typing this was too much, brought on a bad headache where I recently bumped it. Thanks for reading and any advice you might give.

You are never too late for healing/improvement. It sounds like you never have taken enough time away from stress and activity to allow healing to take place. As has been said many times before, healing is a marathon, not a sprint or series of sprints. Recovery is measured over many weeks or even months, not a few days or a single week. A good day or two is not a justification to return to activity. It is just a sign that things are starting to head in the right direction.

You are still over-thinking every little detail.

I wish I had advice to help you stop over-thinking every little detail. It is something you will need to figure out.

My best to you.

Thanks, it's just my personality, I am trying to change it (although I'm going to ask for a few details here!). Would it be best to return to doing absolutely nothing all day for a week or two? Or can I stick to quiet rest activities? If I get a headache while playing solitaire for instance, is that a sign I should stop? If I have a headache beforehand, should I not even play? I pretty much always have some headaches, so that would be tough to stick to. 4 months in and I'm still not really sure how to interpret headaches...

How many days can pass before I start to do more, a week at a certain activity level? Is it just something I need to figure out through trial and error?

Do you take anything for your head aches ?

A week or two of rest is miniscule in the scheme of PCS recover. Besides, I doubt you could tolerate complete rest. You would still be mentally involved/anxious. Quiet activity is valuable to keep blood flowing through your head. Having some quiet activities to do when you have a head ache should be good. Take a break from the quiet activity from time to time. Close your eyes for a few minutes then resume the activity. Quiet activity is also a good distraction.

Do you spend your day with a smart phone in your hand ? texting, etc.

I don't take anything for my headaches as I see them as a signal that I'm not well yet - I generally don't like taking medication, and think that if I took something I would be interrupting that signal and could make things worse by doing too much (although I've been pushing through headaches, so I guess I don't really stick to that rule). Should headaches be seen this way? As a signal that I'm doing too much? Or are they just a necessary part of my life right now that don't necessarily mean anything? Or somewhere inbetween?

I've been spending more and more time with the smartphone, but for about 3 weeks after the fall I used it sparingly if at all.

I have a friend who has taken amitryptiline for sleep and headache reduction. My sleep has improved since getting off klonopin, but it's still not great - I have nights where I wake up at 1:30 and have trouble getting back to sleep, despite keeping pretty good sleep hygeine. I think it's just because my body is used to being tired from strenuous exercise everyday, and I've cut that out.

My doctor has also suggestion amitryptiline - any thoughts on this? I know some medications disrupt deep sleep and rem sleep, both of which are crucial, so I'm hesitant to get on something like that.

Was just riding in a car that braked suddenly and now I've got a new headache around my eyebrow. We were only going 20 or so, so I'm sure it didn't cause any actual damage, but man am I sick of feeling all these little bumps and brakes.

There are no reasons to not treat head aches with ibuprofen or aspirin or even Tylenol. If you need to take pain meds, also take it easy. Being free of the stress of head aches will help you move forward. Most people who complain about their head aches complain that they do not respond to pain meds. If you get relief, be grateful. Then relax and move forward.

Amitriptyline is very successful at treating head aches and insomnia. It is usually taken at a low dose of 10 mgs before bed. It is worth a try.

You also need to try to ignore every little head pain. They do not mean anything. I had head aches for 6 months after bumping my head with a truck transmission.

Hi and welcome
 

Hello,

Sorry for all your pcs struggles. If you can, take as much time as you can in order to heal. Mark has given you good advice and ideas.

It took me awhile to learn the metaphor that recovery inPCS is a marathon of learning your symptoms and how to avoid things that will cause you set backs. Each person has to figure it out for themselves, but this forum and ther are others on FB, will help you.

Try to reduce the stress in your life including worries about your condition. I know that is hard, but look into meditation, gentle yoga -- acupuncture -- taking gentle walks -- whatever it is that helps you find some calm>

Hang in there. PCS is a journey, but it doesn't have to be comepletely scary. Keep asking your questions and finding good answers that work for you. We will help you here as much as we can.

Take care,


PM

Thanks for the replies, it really helps to hear from people who understand when you're surrounded by people in your life that don't. I'm trying to ignore/not interpret pain, but the scientist in me sees it as data, and I want to try to figure out what that data means. Are you saying that headaches don't mean anything, i.e. there is no association between getting a headache and that I'm overdoing it and/or re-injured my brain?

The spot above my eyebrow for instance, that hurt after the abrupt brake in the car yesterday, still hurts today - is that not a sign that some damage (obviously sub-concussive) occurred? Or the same with your head bump that caused 6 months of headaches, Mark?

If I do decide to go home to MN for the rest of the summer, how should I structure my rest/ gradual return to activity? Should I not increase activity levels until I have no headaches for a certain amount of time? If I increase activity levels and I don't get worse, does that mean I'm OK? Or is this just something for which there are no answers and I'm going to have to figure out... (thinking this is likely the answer).

First, sub-concussive impacts do not cause concussion symptoms. They may have a local soreness. Second, you are trying to understand issues that the experts with MD after their name do not understand. Yes, head aches can be from overdoing it. The challenge is to find the threshold of effort that does not cause a return of or increase in head aches. It is not a 'I'm going to be active to the point of getting a head ache then stop' It is a "I'm going to stop or reduce my activity level before I get a head ache.'

For many of us, head aches are a side effect of over doing it. The main symptoms is a cognitive crash, anxiety attack, and foggy brain that result from over-doing it.

If your primary struggle is head aches, take an ibuprofen and move on.

As a scientist, you should be well versed in cause and effect. Only you know the activity levels you are involved in. Anything that causes you to need to be attentive can lead to problems. You need to learn how to shut off this need to understand everything.

I apologize if my posts are a bit exasperating - I'm sure that it's frustrating to hear whining like this over comparatively minor symptoms, but I'm scared and want to take the best course of action to get back to living my life as soon as I can.

The headaches following the head bumps and whiplash I described aren't just local soreness, the spots aren't sore to the touch at all. Rather, they feel like the sorts of headaches I got in the places I initially got headaches after the concussion, hence my concern.

It'd be easier for me to link cause and effect if symptoms consistently became exacerbated after doing a certain activity, but for me it doesn't seem that they do. I always have at least some kind of headache, and they worsen at unclear times. I can go on a 4 day backpacking trip and not have symptoms worsen until days after I get back, and then I can be playing solitaire and feel like my brain is overloaded (and the next day be OK playing solitaire).

I agree I need to stop trying to understand all of this because it's taking more mental energy than I can spare, but trying to understand what's going on is usually my method of coping with difficulty.

You will have a long and stressful life if you need to understand every little difficulty. S... happens. Often, the only thing we can do is move on.

You say it is your personality to be detail oriented. It is best to focus this detail oriented characteristic where it is beneficial, not where it just raises anxiety levels. It took me into my 40's to realize that not every detail needs my attention. It is not healthy. I know many who were / are detail oriented who developed bipolar disorder in their later life. Their hyper attentiveness finally exhausted their brain until they crashed into depression.

Learn the serenity prayer.

Just because you do not make symptoms worse from an activity every time does not mean that activity should not be moderated.

You say you are scared and you want to get back to living your life as soon as possible. There is nothing you can do to speed things up. You can only slow your recovery. Accept your current state and learn to live with it. Over time, things will get better, probably when you are not even aware.

If your only symptom is head aches, you have nothing to be scared about. Take an ibuprofen or such and move on.

Headaches are just my most salient symptom, I also get cognitive overload when doing things like working on the computer or doing labwork, where it just feels like my brain is fizzling or something - it's not as though my thoughts are jumbled, it just feels like my brain is overloaded. The worst symptom is simply not feeling like my normal, sharp self, feeling overly anxious and depressed about my situation (although I don't feel this way all the time, just in bouts).

I know that there is nothing I can do to speed up my recovery, that's why I'm contemplating going home and starting from square one to eliminate everything that was slowing my recovery. Do you have suggestions for how I might structure this time? I guess my main question is should I do quiet rest and the same amount of minimal activity until my headaches are gone? Or in your opinion, should I just get home and relax and not think about it (which is likely easier said than done).

Hello,
My daughter had horrible headaches and we were introduced to acupuncture through the Integrative Clinic at Stanford Hospital. Yes the headaches went away almost immediately, not for good but generally for a day or two. We then found an acupuncturist locally and she went 2/week for over a year maybe two. This was super helpful. I don't know the type of acupuncture off hand that the local doctor used, but I will ask her once I see her today.

Also, stress, screen time, sunlight, anything that is your own sensitivity will increase headaches. For a year, my daughter wore sunglasses indoor and outside. She also found that putting a blue screen against her computer helped last year. (Most people don't tolerate blue, they like other color screens but blue was easier for her.

You kind of have to explore and find out what works for you.

My best,

When I was about 4 months in, my doctor told me that total rest would no longer benefit me. I can't remember the specifics, but after either 6 weeks or 3 months, total rest is no longer helpful (keep in mind that everybody is different, and this is just what he felt was right for me). He told me that working part-time (I'm a writer) would actually help my brain recover, as well as walking slowly for short distances (I have now worked my way up to doing 1.25 miles per day).

I'm 6 months in and am still in a lot of pain. I am also constantly fatigued and get overloaded easily. My advice isn't to start over at square one. Instead, I think you should continue doing your current activities, but on a smaller scale.

Example: If you normally jog 3 miles a day, jog 1 mile instead. If you usually work for 8 hours a day, try reducing your workload to 2 to 4 hours per day. If you text for 2 hours a day, try texting for 1. If you're taking 5 classes in school, cut your course load down to 6 credit hours.

Your symptoms aren't severe, so I don't think you have to totally cut out everything you enjoy. Keep in mind that I'm NOT a doctor.

Total, or at least mostly quiet rest, even after a month long setback followed by a headbump that set me back even more wouldn't help at this point? I know people have said that these headbumps are meaningless (and I haven't been thinking about it as much), but I've been getting headaches that are as bad as what I was experiencing right after the fall, if not worse at times.

I had no idea rest was no longer beneficial.... I am at 5 months and still take daily naps.. I walk 5 minute per hour unless I am sleeping...

So I've come back home, made the 17 hour drive over the course of 2 days with my dad. I've been home for a few days now, and have started on amitryptiline and am feeling worse headaches than I've felt yet - multiple kinds of headaches occuring simultaneously, which never used to happen, aggravated headaches even after short reading (unclear if this is worse since coming home, but in general it has been worse recently).

I've also jolted my head twice by walking into doors and hitting my shoulder. Yesterday I merely stepped slowly into a door with my shoulder, tried to shrug it off, but a few minutes later I noticed a slight ringing in my ears which hasn't gone away. Could these cumulative jolts and head bumps I've accumulated over the past few months be contributing to my worsening symptoms?

I'm trying to tell myself that it's just from the stress of a very eventful and emotional week last week, but this ear ringing and worsening headaches has me concerned. I know I should just shrug off these head bumps, but this additional symptom makes that hard.

You are over thinking every little event. Recover is a roller coaster, even without bumps and stresses. Rather than try to find a cause for every little change in symptoms, try to just move forward. 17 hours of driving would set me back for a week or two. I used to plan for a setback if I needed to drive to California.

Tinnitus and head aches are not a cause for alarm. They just are part of the roller coaster. It is not uncommon for someone with PCS to experience either for up to a year or more as the roller coaster slowly levels out. Nobody can predict the time line.

Reading can cause a head ache. You may need to moderate your reading.

Try to get help with your anxiety. You need to rest without anxiety.

I am almost 6 months out... My family and I were planning a vacation that would have had us in the car driving for 24 hours.. over 2 days... my neurologist advised against it and said that even if I made it with out having to go to the ER to kill a headache that I would not be able to enjoy my stay because of the stress from the drive...

(disclaimer... I also suffered a huge backslide this month and have had some new symptoms appear)

There is a difference between Total rest and quiet rest. Bed ridden rest or even chair bound rest is not necessary. But, quiet rest meaning you lower stress and do not take on aggressive activities or such is good. It does not mean you spend the time with nothing going on in your brain. You want gentle stimulation. Daily naps are worthwhile.