Hey Everybody,

What meds have helped you get rid of debilitating and constant headaches from PCS?

Fistfuls of ibuprofen or tylenol don't even phase it.

My neuro prescribed Lexapro and Tramadol (because I told him I didnt want to take Hydrocodone). I did not fill the Lexapro and told him I refuse to ever take SSRI's again.

The tramadol I took 3 years ago after a serious back injury and it worked well. But this time, it made me feel anxious and nervous. had heart palps and couldn't sleep.

My wife had some Percocet 5/325 from a surgery. I normally hate the way these opiates make me feel but for the headache pain, they have worked the best so far, although I can tell already I am developing a tolerance after only 2 weeks on them.

After originally suggesting Hydrocodone and me refusing it, Doc now refuses to give me percocet and prescribed Indomethacin. Ive never heard of it but looked it up today and saw many folks say it works well, others say it has deadly side effects and is very risky. Yikes.

Anyone have any experience with Indomethacin?

and the bigger question is:

What has worked for you?

Thanks MM

Hi MusicMafia,

PCS-related headaches have been a serious problem for me as well (going on 24 months). My headaches are without relent and influenced by activity and/or stimulation. They consist of tension-type headaches (bilateral, global throb) but also include magrainous types that tend to be unilateral and are show-stoppers. Both types are debilitating and made worse by mental engagement, physical activity, or environments that lead to over-stimulation, which evidently is anywhere outside of the house!

Recently, I've found some relief, though this is only a reduction in pain. Before getting to what has helped me, here's what I've tried:

a) Over the counter analgesics (Tylenol, aspirin, ibuprofen) all are useless for my headaches (e.g., no effect)

b) Tramadol afforded no reduction in pain for me

c) Tylenol 3 (Acetaminophen with 30 mg codeine) ARE effective at reducing my headache pain. However, chronic usage of these may damage your liver and also lead to constant issues with constipation. Further, any doctor that sees you taking these more then 1-2x per week will tell you that you have Medication Overuse Headaches (Rebound); if they suspect this, they will not believe your headaches arise from PCS. I've faced this several times, only to prove that I didn't have MOHs by discontinuing usage for lengthy periods (months). Note, other narcotic analgesics lead to MOHs so you need to be really careful here. The best option is not to use them (from a medical perspective), though it makes life pretty difficult at times. At 23 months, I could use these everyday but opt not to in order to ensure idiot doctor's don't suggest MOHs.

d) Antidepressants
- Cipralex (SSRI) (25 mg) - no pain reduction
-Cymbalta (SNRI) (30-60 mg) - no pain reduction
- Amitryptiline (TCA) (12.5-50 mg) - slight pain reduction at 25 and 50 mg, but the side-effects aren't pleasant... not a fan of this after feeling better coming off it
- Nortryptiline (TCA) (25-50 mg) - similar to the amitryptline but with less intense, but similar, side-effects
- Trazodone (TCA) (25 mg) - was using this more for sleep disturbance; it had no impact on pain reductions

e) Botox A injections
- did 3 rounds of injections (note: 2 rounds are required before determining efficacy) that consist of approx. 25 injections in head and neck; not sure why anyone would do this for cosmetics as the injections hurt like the dickens!!
- There was some reduction in headache pain, though I would define this as "slight"
- decided not to do a 4th round at this time as the benefit for me really isn't that great.

f) Increasing dose of Cymbalta from 60 to 120 mg (note: this is a very high dose of Cymbalta and is intended directly for pain relief, not depression). The transition period involved going to 90 mg for 2 weeks and then to 120 mg; these 4 weeks and the two that followed were quite difficult. Worse headaches, agitation, etc., etc. However, after having daily headaches that were 8s and 9s on a scale of 10 for 21 months, these have been reduced to 7-8/10, and occasionally a 6 or 9. I realise this might not seem significant, but there is a huge difference between a headache at 7 and one at 9. My days are more manageable and less painful; I've been able to interact with my family more and I get outside a bit more.

Unfortunately, though, I still have constant and chronic headaches. The Cymbalta has greatly reduced the migraine pain but has not had a big impact on my tension type headaches. Still, I am thankful for this relief as I deem it significant; Cymbalta has been the only thing other than Tylenol with codeine, that affords meaningful relief.

There are some other strategies used for treating migraine and headache pain linked to PCS. However, I'm not familiar with them but hopefully others will post about them.

As you were concussed in a surfing accident, are you sure you don't have a neck injury that could be contributing to the headache?

In addition to medication, have you considered trying acupuncture and/or icing the back of your neck?

I combine Tylenol and aspirin. They are about as effecting as a Tylenol 3. You can take max doses of both at the same time. My doctor told me to combine them so I could avoid the opiates.

Just take a break from the Tylenol for a day once a week to give your liver a break.

Naproxen (aleve) was the only NSAID that helped me.

I am on Topiramate and it stopped the daily pain. I am on a low dose 100mg that I take before bed.

If I get a headache (which is rare) I use Excedrin migraine.

You have to very consistent with Topiramate because it doesn't stop pain just prevents the migraine (this is what the doctor told me). You have to give it time to work but if it does, the pain is a 100% gone.

I had pain for a year and then two weeks on Topiramate and I have never had it again. This doesn't seem to be a popular choice on this forum but works well for me.

Mark is one Tylenol free day a week enough to safeguard the liver? What if one is taking other meds, like my seizure drug, that also tax the liver? I can't take a day off the Tegretol.

The maximum daily dose of Tylenol is supposed to be safe but giving the liver a break is helpful. You should ask the pharmacist about the Tegretol.

You can also ask for a liver enzyme test annually. It is a common test for many who take liver sensitive drugs.

Thanks Mark. Unfortunately Ive tried max doses of tylenol, ibuprofen and aspirin in various combos and they dont do anything for this. For body pains ibuprofen usually works well for me but not for these headaches.

Interesting you mention that. Although the nuero doc says I am textbook PCS, my chiropractor says in addition to that I do have some whiplash and that the xrays show my atlas thing is way off, so I have two things contributing to these headaches which have been constant and debilitating for almost 2 months. Chiro says this could be from this injury or older injuries. My neuro wouldnt even look at the xray (only mri) and wrote off the chiro. The chiro did some neck adjustments which did not help with the headcahes so I discontinued. I do think both are contributing to the pain.