My daughter 18 months post-concussion
 

My daughter has been suffering from post-concussion syndrome for 18 months now and it keeps getting worse. It started with an assault that left her unable to read or look at computer screens without triggering an instant migraine. Eight months after the assault she suffered an extremely minor bump to the head and found shortly after that she was getting migraines from listening to audiobooks. Every couple of months since then, there have been other minor incidents, such as hitting her head slightly or being in a vehicle that stopped too suddenly, which has left her with new migraine triggers.

Now she is worse than she has ever been before, she is no longer able to read, write, look at computer screens, look at streetlights, listen to music or even talk to us without getting a migraine. She has developed an extreme sound sensitivity, and finds that migraines are even triggered by sounds made by her own body such as cracking joints or even just swallowing. Earplugs do nothing to block these sounds, so for the last month, she has had an uninterrupted migraine that no medication seems to be able to treat. She has tried Propanalol, Sumatriptan, Topamax and Gabapentin. None of these seem to help. The Topamax actually made her migraines worse. She is so disabled now that she can do almost nothing other than lie in bed all day with her eyes closed and her earplugs in. If she even says one sentence to us it causes a migraine now. We are starting to lose hope because things keep getting worse, and there seems to be no way to stop the cycle that she is in.

I am posting this looking for any advice or any reason to feel that this will ever get better. Has anyone experienced anything like this? How do we end the cycle that she is in so that after 18 long months she can finally begin to recover? Her main migraine symptoms are a persistent throbbing, dizziness and extreme pressure in her head. Please let me know if there is anything we can do. If anyone has had these types of symptoms and gotten better, please let me know so we can have some hope. Thank you.

Sorry to hear that and I can relate to some of it.

I had the dizziness and head pressure for a very long time. Just looking at someone and talking made me dizzy and tired. I tried different medications (all the meds you mentioned and more) and finally settled with Xanax 3 times for a while. (Also many therapies during that course). Then I tapered down on Xanax and now on minimum dosage and take as I needed for traveling or other things.

As I have been discussing in other thread the place I live (especially cold places) also affects my symptoms.

Have you been a vestibular specialist and ruled out any complex inner ear stuff?

I dont know I got better or I am used to the symptoms now. But still have quite a few struggles on a daily basis.

JudyAnn,

Has your daughter ever had her Cerebral Spinal Fluid pressure tested ? A common test is a spinal tap. If the pressure is too high, the relief will often be instantaneous. Here is one explanation of it. : http://adc.bmj.com/content/78/1/89.full An MRI can also be used.

Has she been prescribe anti-biotics ? In rare cases, they can give relief.

Has the doc tried an anti-depressant ? maybe amitriptyline, nortriptyline or an SSRI or SNRI.

Or, benzodiazepine like Klonopin, Xanax, Ativan ?

An anti-inflammatory diet may help.

It sounds like some shot in the dark experiments may be worthwhile.

The docs try to find something that makes medical sense. Sometimes, you have think way outside the box.

Thank you PCS Life and of course, Mark in Idaho for your replies. I will pass your posts and suggestions on to my daughter. She actually dictated my original post, because only she could put into words what she is suffering. By the way, my daughter is 30 years old and feels that she has reverted back to a childlike dependency because of her symptoms.

Judyann

I am so sorry for her overwhelming symptoms. I wonder if she had tried walking to help her feel better until the doctors can find some relief.

Walking on a nature trail can really help reduce many of the symptoms. Meditation can also help but can be difficult until the symptoms are under be control.

JudyAnn:
Mark has some good suggestions. I am one of the rare cases where antibiotics helps with my headaches. I tried twice in the past 6 years. Ofcourse they give it for a very short course (about a week).

I know one guy who works as a housekeeping manager at hilton (demanding job) who had some piercing injury back of the head many years ago. For him only antibiotics helps with headaches and he always have tough time to get prescribed by doctors for obvious reasons.

Xanax works for me overall symptoms ofcourse.

I also did spinal tap to rule out any pressure or any other weird things. My pressure in the normal range and everything else normal. It was an outpatient procedure.

Give it a shot for out of the box experiments. Personally quite a few out of the box things work for me.

JudyAnn,

I don't have any theories but I wanted to at least let you and your daughter know I wish my very best and prayers for her.

This PCS is a real guessing game at times. This week I have gone backwards to symptoms I haven't had for a couple of months now, I haven't a clue why or where they come from so she certainly isn't alone.

Bud

Thanks for your good wishes
 

The post below was dictated to me by my daughter:

Thank you everyone for the thoughtful replies and good wishes. It is good to know that other people seem to have gone through this and gone out the other end of it. This has been a real challenge for me, but I am still hopeful that something will help me get better, and I appreciate the suggestions. I have a couple of questions about some of them.

First of all, concerning antibiotics, is any particular antibiotic that has been helpful, or is it antibiotics in general? About a month ago I went on a two-week course of ciprofloxacin for unrelated reasons, but I didn't notice any reduction in symptoms. Would this mean that antibiotics probably won't help me, or is there a different kind I should try?

Regarding Xanax, I had understood that benzodiazepines may be linked to brain damage, and therefore are not ideal for PCS for that reason. I had ruled them out because I thought that, but if I am wrong, I would definitely reconsider them.

Regarding spinal taps, I would be more than willing to have this done, but I am not sure how to proceed. I asked a neurologist about this option a year ago, and she said she would not authorize one because she did not think it would help me. How were you able to get this done? Should I go through a different neurologist, a GP or possibly the ER? Is this commonly done for PCS, or is it easier to get it done for another condition?

Mark, I am taking an SSRI and have been for almost a year now, and it helps with my depression and anxiety, but I have not seen any effect on PCS so far. It is interesting that you mention an anti-inflammatory diet, because ever since my injury I have had persistent inflammation in my temples, and have not been able to find anything that would make the swelling go down. I was even on a short course of prednizone for my asthma a while ago, and that didn't do anything for the swelling either.

I am able to talk even though it makes my migraine much worse. Do you think it is OK for me to talk occasionally even though it worsens my migraine? Will this lessen my prospect of recovery, or is it OK to indulge as long as I can handle the pain?

Also, does anyone know if there is any way to raise the concussion threshold or to prevent the cascade of damage that is triggered by a bump to the head?

Once again, thank you all for your thoughtful replies, and I wish you all the best in your ongoing recovery from PCS.

Benzos are to be avoided unless there is a reason to try them. Many doctors are quick to prescribe them for minor reasons. They should just not be a first approach and used carefully.

I neglected to mention upper neck issues. Subtle upper neck injuries can contribute to headaches. Poor sleep can also be a problem. An assault can cause the subtle neck injuries that result in chronic vertebral inflammation and muscle spasms.

Has she been tested for visual issues like convergence and such ? A behavioral optometrist can do the assessment. https://nora.cc/healthcare-locator.html

Rather than seeking a spinal tap, it would be better to ask about CSF pressure as a possible contributor. One needs to be careful about directing doctors but instead, ask questions. Doctors do not appreciate patients who self-diagnose. But, finding a doctor who responds to questions without disregarding them is a true find.

Amantadine has helped some. It is an anti-viral that has been found helpful for some, but just a few.

An inpatient 48 hour EEG has been tried by some.

I'm not trying to give answers but instead direct you to some questions that may not have been asked.

My best to you.

JudyAnn,
I tried amoxicillin first and immediately noticed reduction in symptoms. Then doctor gave me something stronger. I felt even better. Again they gave bcuz I had some minor rash and not for PCS.

Then few months ago I had some chest cold and doctor prescribed azithromycin. It helped again for my PCS than chest cold. So bottom line any antibiotics should have helped. Again I am a rare case so probably it may not be helping you.

Benzos are tricky. I never went out of control and abused it. I use it wisely. If brain constantly struggling then recovery doesn't happen as per one Neuro psychologist. You can take for a short term and see how you feel. I did go off couple times and felt ok for a while. Then my work and other stresses made me to go back on Xanax on a minimum dosage.

Now I can travel and do quite a few things. Again when I mentioned to my Neurosurgeon that if I take Xanax and can do things like traveling, he said go ahead and do it. Ofcourse they see severe cases and I am a mild case for a Neurosurgeon.

Regarding spinal tap one of my Neurologist wanted me to get this done. I didn't ask or want to do it. Just because they wanted I did it. I have seen quite a few Neurologists before I settled down with one now. You can try a different Neurologist.

I even got dilaudid (morphin) thru IV once in ER for my severe headache. They gave me Toradal first but didn't see much difference. Sure it helped for a day. Again last year I had a severe headache and feel like passing out. So went to ER. This time they gave a combo of Toradal, Benandryl and Reglan through IV which seems to be another protocol for migraine headaches. Helped me to sleep and with headache for a day. ER doctor asked if I want stronger than this but I said no.

Anyways these are all my experiences and each injury is unique. Only way is to try and see how it works.

Good luck

Thank you for the responses. Yes, a neuro-opthamologist has diagosed my daughter with convergence insufficiency and accommodated infacility.

Also, my daughter is scared to ride in a car, so it will be difficult to get her to a neurologist even if we can find one who will take her in less than 6 months. My daughter feels that the jerkiness of the car may set off a string of migraines, and she is trying to decide if she thinks the risk is worth it. Any suggestions in this regard would be appreciated - has anyone out there had problems going on a car ride?

Mark, we appreciate all your suggestions. We will definitely look into those.

Judy Ann,

I had a hard time in a car for a year or so but I managed, I figured ways to survive.

I would think that she needs to look into this...it could change things for her.

Take some small rides...some warm up runs before the appt.?

Bud

There is a way to make a car ride much easier. Tell her to ride sitting forward so her back does not touch the seat back. A lot of the vibration comes through the seat back. Also, roll her shoulders forward. This increases the shock absorbing capability of her spine. Sitting on a resilient pillow may help, too.

I was hyper sensitive way back when and could tolerate speed bumps and other bumps in the road this way. I still use this technique even though I am much more tolerant of bumps and vibration.

If she has access to somebody with an old style Cadillac or other land yacht that wallows down the road, it would be worthwhile.

I would not suggest a generic neuro appointment. Some effort to find the right doctor or team would be worthwhile. UC San Diego Medical School would be worth checking out.

Believe me. There are opportunities to find experts if one has the time to do the research and calling. They are often affiliated with teaching hospitals.

Has she ever had her hormones assessed by a neuro-endocrinologist ? EsthersDoll has had success and has posted many comments about her experience.

You consulted a neuro-opthamologist or neuro-optometrist? I have done many sessions for my convergence insufficiency with neuro-optometrist. Not sure how much I helped but most of them I just try and if I see no improvement then I have to stop. Most are not covered by insurance. During my sessions I saw some people with strokes, kids with vision issues etc., My neuro-optometrist was good I can say.

I also consulted a good neurologist specialized in neuro-opthamologist. His take is I have no vision issues and asked me to take some anti-seizure medicines like Neurontin or other meds for my issues.

Riding in a car was a big challenge me too in the beginning. Even now riding is not pleasant but I can manage with the way I sit and have some cushions etc., I rode in my friend's new Benz SUV recently and hardly felt any bump. It was very smooth always and he also a very good driver. You have to get your daughter out to doctors somehow.

My daughter dictated the post below:

"Hi. It's been a while, and I wanted to update everyone on how I'm doing. I have an appointment with a migraine specialist in mid June, and I am hopeful that he will be able to help. I also am getting a CT scan in a couple of days in order to check for increased intracranial pressure. I also recently saw a psychiatrist and she put me on 15 mg. of mirtazapine (Remeron) in order to help with my sleep. I have only been taking it for 3 days, but my sleep has been so much better. I have been getting 12 hours every night, and my migraines actually seem less intense during the day. So far this is the only medication that has seemed to have any effect on my migraines at all. I really want to continue it, but I've been having a weird side effect. If I hear a sudden noise or see something suddenly come into my field of vision, I get startled and my brain feels like I have just received an electric jolt. It happens even with touch sensations sometimes. Yesterday I accidentally bit the inside of my cheek when I was eating, and that also triggered a strong electric jolt. Earlier today, I was trying to remember a name and when I remembered it, I got an electric jolt as well. I put in a call to my psychiatrist to see if I should continue this medication or not. I would love to, since it seems to be helping, but I am very wary of something like this becoming a permanent side effect for me. It seems to me that injured brains are more vulnerable to getting locked in cycles. I got tremors as a side effect of a medication I was on a few months ago, and even though I have discontinued the medication, the side effect remains. So I don't want to risk that with these brain jolts. Not sure what to do, but I hope my psychiatrist will have advice.

Just a random thought I had the other day - to the poster who said that antibiotics helped his migraines, are you much of a traveler? If so, you should consider visiting one of the many beautiful countries in the world that have a slight risk of malaria. When I was living abroad, I was taking some doxycycline every day as a malaria prophylactic. An antimalarial course of antibiotics usually starts a month before you leave on your trip and ends a few days after your return. If you are willing to risk the long-term effects of sustained antibiotic use, you could even move to one of these countries and be migraine free as long as you want.

Thank you everyone for your advice, and best of luck in your ongoing recovery. I hope I will have good news to report soon."

JudyAnn : I am the one who posted antibiotics helps with headaches. Right now I am still traveling in Asia and can easily get antibiotics :)

But long term usage seems to be dangerous and more and more hear stories about problems with antibiotics and resistant bacteria. Being said that now I am thinking to try for one week since my headaches progressively getting bad for the past 1 month. Alcohol helps but I quit completely.

I had some shoulder and neck pain last week and doctor gave me a combination of paracetamol and NSAID and muscle relaxer for 5 days. It sure helped with shoulder and neck pain but not my headache which is disappointing because I read this combination should work for headaches too :(

Hi JudyAnn,

I am about 13 months from my concussion. In the last few months, I have been fired from my job, checked into a suicide prevention center, started therapy, found hope, re-found my family, understood love better.

I say all this to provide a bit of hope. As terrible as things might seem sometimes, just hang in there and some sliver of hope will enter the picture. My absolute best to you.

Daughter,

I had a real time with things startling me as they passed into my field of vision quickly...birds for example made me duck. Tall item shelfs in stores above my height had me flinching as well, they left me feeling as if they were falling on me. Mostly gone now.

Headaches have greatly reduced as well..I am more down to what I would describe as a sore head instead of a headache.

I have been doing eye therapy and those symptoms have almost totally ceased with the exception of when pretty fatigued from work or not wearing my prism glasses faithfully.

Maybe you should have your eyes checked?

Bud

If she is using ear plugs, be sure to check for earwax build-up. An earwax compaction can cause dizziness and other neurological symptoms. You'll need a scope to see deep enough. My dad got one from a medical supply shop. Don't use qtips as they will push the wax in further.

Removing the earwax from my ears lessened the severity of my dizziness and vertigo.

My daughter dictated the following:

"My last concussion was 5 months ago, but I am still having difficulty with aerobic exercise. I have reduced my routine to one minute of aerobic exercise at a time, and that will give me a migraine for several hours. If I do any longer than that, my migraine will last all day. I am curious to see if anyone else has had similar problems with exercise."

If anyone has a reply, please let us know. Thank you.

The Buffalo Protocol says to reduce aerobic exercise to a heart rate that does not cause headaches. Then, after 2 weeks, try increasing the heart rate by 5 to 10 bpm. If this rate can be sustained without headaches for 2 weeks, another increase can be tried. Some need to spend more than 2 weeks at the safe heart rate before increasing heart rate. The vascular structure in the brain needs to regain control over blood flow/shunting that is lost during the injury. For some, this can take quite some time.

The current goal is retraining the brain, not maintaining or improving cardio ability. That can be restored in due time. Pushing heart rate into symptom levels can have a negative impact on recovery.

Thank you, Mark. I'll let my daughter know.

Mark, my daughter wants to know the following: She gets a migraine from talking or listening to language, so does she need to work up to that also? Is it damaging her brain that she talks to me every couple of days even though it give her a migraine? She's been trying to push through it, but she wants to know if she is hurting herself by doing that.

Thank you.

Has she tracked her blood pressure to see if elevated blood pressure contributed to head aches ?

Is it any kind of talking ? Her talking or her listening ?

I don't think migraines are damaging but they may delay healing.

What is her struggle with computer screens ? Can she use them if the screen brightness is turned down ?

My daughter said:

"My blood pressure has historically been very low, and it is low every time I check it at the doctor's office, but I do not track it on a regular basis."

"My migraines are triggered by me talking, or me listening to anyone talk. Sometimes even if I am practicing a conversation in my head, if I get really into it, that can trigger a migraine too."

"I cannot look at computer screens even with the brightness turned down. They greatly bother me."

"My big problems at the moment is that nearly everything seems to trigger a migraine, including just getting out of bed to go to the bathroom, or to microwave food, and showering as well is very difficult (which I think is due to the sound of the running water)."

"Most days I lie in bed all day with my eyes closed and earplugs in, only getting up to use the bathroom or to eat. Every couple of days I do talk to my mother on the phone just to get news of the world. If I didn't have these phone breaks, I think it would be very difficult for me to keep from going crazy from the complete lack of outside stimulation. I think it is good for my psychological health to be able to talk periodically, and I just hope that it is not bad for my brain, but I really don't know. It is hard for me to strategize about how to go forward as it has been almost 1/2 a year since my last concussion and my symptoms just seem to be worsening."

"Thank you as always for your advice and input. I will try using the buffalo protocol if I can find the level of exercise that does not trigger a migraine. I would appreciate any additional advice; I am not exactly sure how to go forward right now."

Pushing through the pain will make your symptoms worse. Are you living with anyone who can care for you? Can your mom come stay with you?

Little bit of a headache is ok as long as you give yourself time to recover.

Do you see any improvement after the migraine cycles end? Say talking for 5 minutes gives you a headache, then you rest a few days. Then can you talk for 6 minutes before getting another migraine?

Improvements may seem miniscule but as long as you keep making tiny gains you will get better.

Salt and electrolytes will help your blood pressure. I drank a cup of Pedialyte every morning and that helped lessen my dizziness.

I can relate to everything you're saying- the sensitivity to talking, listening, evening thinking. So this edvice comes from my own experience:

1. Hire a caregiver. The amount of care you need may be more than one family member can handle.
2. Get a hospital style bed so you can sit up at meal times. Have the caregiver serve you meals in bed.
3. If going to the bathroom aggravates your head, then use a bed pan.
4. Get sponge baths instead of a shower. You can use a waterless body wash. To wash your private areas, place an absorbant pad under you, wash with regular soap, then pour warm water to rinse. The pad will absorb quite a bit of water. Your hair can be washed in the same manner.
5. Get a wireless doorbell to use as a call bell.
6. If taking fish oil, then monitor your blood pressure because fish oil lowers bp which can cause other symptoms.
7. Ear plugs can cause earwax impactions. See my ealier post.

Your brain will heal if you give it a chance to heal. Eliminating trips to the bathroom and the kitchen will give your brain a better chance.

For an explanation on why you should adopt this approach, see my posts at the end of this thread:
http://www.neurotalk.org/traumatic-b...go-nausea.html

These are quite extreme.
These may have helped you but for many, they just increase stress levels, such as the stress of fighting with a bed pan. The bed ridden concept creates more risks such as DVT's. If someone is bed ridden, they need to be medicated to prevent DVT's. A simple solution is 325 mgs of aspirin, enteric is OK, twice a day. Fish oil also thins the blood so it can help with DVT's.

Ear plugs rarely cause ear wax impaction. There are simple ways to resolve or prevent this.

JudyAnn's daughter needs to find a way to get gentle brain stimulation to encourage good blood flow. She also needs to have normal sleep patterns to get all of the sleep stages. lt does not sound like she struggles to walk to the bathroom. Some sense of normalcy is good. Most important, she needs to find someone who can understand her symptoms and give her some help to move forward. Third person advice is very problematic because we cannot get the full picture. .

Being in bed all day with PCS is a tough situation. But you have to slowly start moving around and some medicines may help. At least for me it worked since I was in that situation where every movement made my condition worse.

I even feel that way severely at times but it passes. I still have symptoms at some level everyday.

One thing helps me during initial stages a lot is Xanax. I don't advice on Benzos but it can help your brain to stay calm and you can start moving around and before you get used you can quit and take only on a needed basis.

Just a thought.

My daughter wanted me to post the following:

"Thank you everyone for all of your advice. It is hard to know exactly where to start, but I am just going to try to rest as long as possible and my psychiatrist is putting me on Depakote, so we will see if that helps with the migraines. If that doesn't work, she is going to try me on Zyprexa next time we meet.

Thanks again, I'll let you know how it goes."

My daughter has seen a new neurologist recently. He prescribed her Namenda to help with her memory and migraines, but her migraines worsened on the medication, so we will be trying something else when we see him again.

He has recommended that she get Botox injections. We are a little concerned because her temples have been slightly swollen ever since the initial concussion, and bumps to her temple in the past have triggered new symptoms. She doesn't know if these bumps could have caused concussions in themselves, but they seem to affect her in the same way as a concussion. We are worried that sticking a needle into the swollen area could possibly increase the inflammation and lead to an onset of new symptoms for her. The doctor does not seem to think it would be a problem, but some of her doctors have been careless in the past, and we wanted to get other people's opinions on getting Botox in an area that is slightly swollen as to whether it could aggravate the existing inflammation and potentially cause more problems for her.

Any feedback? Thank you everyone in advance for your advice.

Some have found Botox helped. Some have done a small test first. This is sometimes done to check for reactions. Some research to find the best Botox doc who appears to really understand her condition would be worthwhile.

Has her neuro mentioned amantadine ? It is an anti-viral that has helped some with PCS issues.

Many have reactions to non-concussion bumps to sensitive areas. These minor bumps or touches are no concussions even though they can cause an onset of symptoms. The brain can learn a response that mimics a concussion response. A simple trigger can appear to be a concussion.

How is her sleep ?

I can't imagine having much of a memory if I was living with migraines. Any headache messes up my memory.

Namanda sounds like an extreme shot in the dark. Various Alzheimer's drugs have been tried for PCS with very limited results. But, at least her doctor is trying.

Floxxed?
 

When reading your daughter's story, the mention of Cipro jumped out at me. I would suggest to review the potential side effects of Cipro against her current symptoms. There is a strong community of individuals that suffer long-term damage to these dangerous drugs. They describe themselves as being 'floxxed'. The drugs not only attack the bacteria (bad and good - is she taking probiotics?) but also attack the mitochondria in the cells. The brain is second only to the heart in terms of mitochondrial density. Side effects can include many and various conditions including weakness, systemic pain and neurological issues.
On a more positive/practical note - has she tried neurofeedback? How about Chiropractic?

My doc tried Cypro (cyproheptadine/periactin). May have helped with symptoms but made me very depressed. He tried indocin/indomethacin in case my pain was from inflammation. Made me spacey.

Trickidicki,

Welcome to NeuroTalk. Are you suffering from a concussion or head injury ? How can we help you ?

JudyAnn, at this time last year I couldn't open my eyes. Now that I'm off all the medications I'm doing so much better. A couple weeks ago we went camping in the mountains with friends which was a huge milestone. Read my story to see what the medications did to me and how I got off them:

I read your posts to my daughter, and she wants to reply. Here is what she wants to say:

Mark, my neurologist is the one who will be performing the Botox injections. He seems a little dismissive of the concerns I raised when I met with him, but I am hoping that I can still trust him. I have had some unpleasant experiences with medical personnel in the past, so I am a bit worried. I did take your advice about asking for a skin test first, so that should at least give me an idea as to whether I will react badly to the Botox. It is really reassuring to hear what you say about head bumps mimicking concussions, but not causing damage. I have had a lot of head bumps over the last 2 years that have worsened my post-concussion syndrome, but with only 1 or 2 exceptions I suspect that these weren't actual concussions. One of my previous neurologists considered Amantadine, but decided against it because he said that it is more often used for patients who are low energy following a concussion. I, on the other hand, have racing thoughts and high anxiety, so my neurologist believes that Amantadine would worsen these symptoms.

TrickiDicki, I was on a relatively short course of Cipro and I did take probotics during and afterwards. I did not notice any worsening of my symptoms after I finished the regimen, but when my head is feeling a bit better, I will try to learn more about the side effects of Cipro.

Digital Drew, my mother did read your story to me in part. In many ways, it is quite similar to mine. I have spent a good four months lying in bed unable to talk to anyone, or open my eyes or do much of anything. I have reached a point where my migraines have lessened in intensity and although talking or listening to audio books still trigger migraines, the migraines are much easier for me to handle. I relate very strongly to what you said in your blog about not wanting to overdo it (and having the people around you not understand). After four months of essentially being a vegetable and over a year prior to that being only somewhat more functional, my mind was craving any sort of mental stimulation. Once I found that I could speak and also listen to audio books, it was very hard to resist just plunging right in to things. For the last few months, I have been doing a lot of talking and listening, and I have gone back and forth on whether this is safe for me to do, or whether it is increasing my recovery time. Based on the portion of your blog that my mom read to me earlier, it seems that you strongly believe that a failure to rest appropriately is going to worsen your condition, but I find it so hard to go back to lying in bed and doing nothing because although it's been 8 months since my last concussion, and although my headaches have diminished in severity, all of the previous triggers I had still tend to trigger me - the only difference is that the migraines are not as bad. If I went to doing only things that did not trigger migraines, I would lying in bed all day with my eyes closed and earplugs in, unable to get up to use the bathroom or microwave a dinner. I very much don't want to go back to that state, especially because all of the resting I did before never seemed to do much to alleviate my symptoms. I would be curious to hear your thoughts on this.

Thank you everyone for your responses, and congratulations Drew on your camping trip! It is really awesome that you were able to do that.

It sounds like you are improving since your migraines are less intense. That's great that you can listen to books and talk. Keep it up!

I know bedrest is no fun but I knew I had to stay ahead of the migraines and dizziness. I just had to stay in bed until I improved enough to tolerate getting out of bed. For example at first I couldn't read at all. I tried reading a half page and got dizzy. So I waited a couple days. Then I could read 1 page a day, then 2, and gradually increased as I improved.

Have you thought about tapering off the antidepressant? I think the antidepressant is what made my head so sensitive. Consider stepping it down 10% every 3 weeks. At that rate you'll be off it 8 months from now.

Your daughter sounds like she is in a lot of pain. Sometimes I think there is a cumultive effect. I had several head injuries and this last one really tipped me. HOWEVER, even before this one, the sensory issues were off the scale. I also wear earplugs all the time and cannot eat much and clothes feel funny etc. All my sensory issues are jacked up high.

There may also be genetics involved as to why someone had PCS and someone else not. And PTSD can complicate it, too. Many woman out here have many head injuries from violence and other traumas which not only cause head injuries but PTSD. It is like the soldiers who not only endure an IED but also all the trauma that is involved.

Something that helps me a lot is the Vitamin Section they have listed here. Sometimes hiring a personal trainer is helpful to help you work out but to also talk to you and be a light to you at this time and help you seek wellness and healing. The brain is an organ but so much more. It is also Thought.


I hope your daughter feels better soon and finds support here. I know I really do and it helps when others say what works and then I try it and IT DOES work!
She is lucky to have your support. :)

My daughter wants to thank you for your advice. She is open to trying your suggestions and we will keep you posted.

It does help her a lot and make her feel better to have the support. Thank you all!

My daughter is now saying she is not willing to get Botox injections for her migraines because it would be injected into her temples, which are already swollen. She is afraid that having this injection would cause a concussion, because one happened to her before when an ER doctor jabbed her in the temple.

I am hoping that she will get the Botox injections because I hope it will help her migraines - this is almost her last hope to get rid of her migraines and eventually resume a normal life. Does anyone feel she is being overcautious, or I am not being cautious enough? I would appreciate your advice on this.

Thank you.