Which Meds Are Best For PCS Headaches?
 

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.

fyi,

Excedrin migraine is no different that Extra Strength Excedrin which is aspirin and Tylenol plus caffeine. The migraine label is just a marketing ploy. The migraine label sometimes means the price is a bit more.

I take the combination without the caffeine per my doctor's orders.

Recently I was reading about rebound headaches (or Medication Overuse Headache as they seem to call it now) from OTC medications and from what I gathered it was the ones that had the caffeine in them that were more of a problem than ones without.

My neurologists have me on this too. I started small (25mg) but I am now up to 200mg twice a day.. This has helped a lot. But if weather or allergies bad? Forget it. Migraines horrific! Wouldn't wish on worst enemy!! My migraines are days debilitating [emoji15]

I am also on Gabapentin 3600mg daily for my other issues. Helps, but not perfect. I can at least get up. [emoji33][emoji22] Trust me, and like others, there ARE days (like today) I wish I didn't make it. This pain is too much!


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I have gotten considerable relief from Depakote, extended release, 500 mg/daily, along with Flexeril (a muscle relaxer).

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.

I had the best results with Topamax (topiramate) 100 mg, which I took for a couple of years. You have to take it daily, but then it prevents the headaches.

Eowyn,

I signed up for a Nedley deal in January. I am only one hour from Weimar so I figured what the heck.

Bud

Wow MicroMan, sounds like you have tried everything! Thanks for sharing your experiences. I will keep posting as I try things too!

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.

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.

Had not heard of this but will definitely look into it now! Thanks for the suggestion :)

Thanks I will look into this :)

So far the only thing that has helped for me is Percocet but the Indomethacin seems promising. I definitely want an alternative as I recognize the negatives to opiates, having friends and family fatally overdose from them. I started the Indomethacin 50mg last night and although it did not work as quickly as the percocet or knock as much of the pain down it did provide relief and I slept better than I have in days. Took it again this morning and so far so good. Will keep you posted. Thanks to everyone for your input and help! :)

Yeah, MM you'll want to move away from the Percocet due to the risk of MOHs. Developing these would really complicate things. Alternatively, even if you don't develop MOHs, you'll eventually run into problems with doctors and their attitude towards your issues.

Since not taking any Tylenol 3s for the past couple months, I really miss having a few hours where the headaches are masked. So goes it.:(

MM I feel your pain brother! I look forward to healing and not just masking.

What is MOH ?

Medication Overuse Headaches. I mentioned it in my post above as well. Used to just be called rebound headaches.

I looked back one page but not two. I even googled it and did not find an answer. Hope my busted brain can remember it.

What exactly are you looking for, Mark?

Rebound - aka - MOH
from headaches.org

Cleveland Clinic - Rebound Headaches

It's easy when you know what you are looking for. Some of us just end up lost in space. I found it on the 5th page of google search results.

I get lost in space a lot. ;)

Hope it works out well for you! Let me know how it goes.

Eowyn,

Will do.

Bud

I'd be really careful about allowing anyone to manipulate your neck. Your whiplash is almost certainly a factor is your headaches. There's the possibility that swelling in your neck has caused muscle atrophy. That, in turn, can cause instability. Sometimes gentle isometric exercises can help with that. It is also very important to pay attention to your posture, including when you sleep.

My neck damage was obvious, but often it can be hard to detect. Mark from Idaho is better versed in the diagnostic tools and treatments available.

mm,

Your chiro has a good point. But, you need to be sure he uses gentle techniques. The twist the head and pop the neck adjustment can be too aggressive for many of us. Plus, once you get adjusted, you likely need to ice to help reduce inflammation. Then, you need to maintain good posture, especially during sleep and rest so you do not stress the C-0, C-1 (atlas), and C-2 joints.

999 out of 1000 MD's will reject the value of chiro so disregard the neuro's comments regarding chiro.

My chiropractor did wonders for me following a car accident. He stated that I sprained my back from my head to the center of my back. He was amazed that I actually walked in the door. He used more non-invasive ways to get me as well as possible. He also taught me exercises to help with the recovery process.

Listen to your chiropractor. This is exactly what they specialize in and most of them are great.

Musicmafia,

How goes the continued treatment with Indomethacin? I have never heard of it but hope it works! My neuro just prescribed this to me for relentless stabbing, mind scrambling headaches that have returned. I feel as bad as I did months ago. It's a rather bad and scary setback.

Thanks to everyone for taking the time to comment and I apologize for not visiting here more often. The PCS has put me behind in every aspect of life and I just can't seem to catch up. I'm sure you all can relate. Here's an update:

I stayed on the Indomethacin (50 mgs in the PM) and it seems to have helped reduce the frequency and severity of the headaches. It helps me sleep a little better, without making me feel groggy the next day. None of the OTC anti-inflams worked for me but this seems to help prevent some of the smaller headaches rather than treating them after the fact. That said, if I get over-stimulated, I still pay the price. All in all it seems to be a good maintenance med for me.

Feeling like I had two injuries (both causing headaches) I went back to my chiropractor and he re-started the neck adjustments and my back-of-the-head headaches decreased by 50% immediately. (My over-stimulation headaches are usually side/temple and top of head). I have continued adjustments every week or two.

I still have occasional bad flare-ups when the headaches go ballistic, probably from overstimulation. I keep the painkillers on hand for those but onlyn have to resort to that a couple times a month.

Had a follow up with my neuro. He was concerned that I am still having headaches and cognitive issues after almost 6 months. He suggested several meds, some of which were antidepressants that I had taken in the past (SSRI, TCA) which I refused based on past experiences. He then prescribed Topamax 50mg at bedtime and said it would help with sleep and headaches. I decided to start with 25mg and have only taken it for 3 nights. All 3 nights I slept poorly and had bad dreams. My cognitive issues are 10x worse and I am extremely fatigued. Headaches are same. It's hard to imagine that such a small dose would do this to me. I guess it's possible something else is causing it but I cant take it and plan on stopping the Topamax and re-starting my old meds tonight to see if I can get back to where I was before.

Thats it for now. I hope you all are doing better and thanks again for all your help and support.

mm,

Have you have any kind of sleep testing ? Bad days cognitively can be caused by poor sleep. Either poor cycling or poor breathing or a combination. For me, bad dreams were related to poor breathing during sleep. I had Central Sleep Apnea caused by neck/upper cervical inflammation.

Indomethacin (Indocin) messed me up cognitively. I got easily disoriented with it. I had to stop it.

MM,

Thanks for the update...seems generally pretty upbeat and that takes us a long ways!

Bud

Sumatriptan
 

I just thought I'd add that Sumatriptan has helped me. It's meant to treat migraine headaches.

http://www.drugs.com/cdi/sumatriptan.html

no ive never done any sleep testing but from what my wife says the apnea is probably there and ive had cervical inflam as well.

my body often reacts strangely to meds. 3 days of tyhe topamax was intolerable for me. feeling "better" back on the indo but only take it at night so i'm less affected by day.

Is this the pharmaceutical version of 5HTP which Ive seen as a supplement? Anyone have any experience with the supplement?