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

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