What meds have worked for you?
 

I was searching through the forum, and trying to get an idea of what has worked for people.

I've tried a few over the years of having PCS, but I haven't found anything that actually works for the symptoms. I've taken: amitriptyline, propranolol (currently trying at 40mg), topamax, fiorinal, and I've taken a bunch of sleep aids but I got used to them all, and I last took Xanax, which I'm still going through w/d from. Don't recommend it.

Jingles,

To answer your question, it would help to know what symptoms you are seeking relief from.

There is no medication specifically for PCS. It is only the individual symptoms that are treated.

It appears you have been prescribed quite a few drugs. It sounds like quite a roller coaster ride.

Have you done any nutritional supplements? The concussed brain tends to be deficient in many nutrients.

There are also needs to have sleep hygiene disciplines and such.

Let us know so we can address each symptom.

Well, I wasn't necessarily thinking about just myself with the symptoms. I was thinking that if anyone has had success with treating a particular symptom they could list it some stuff that they have found helpful.

As for myself currently the worst symptom I've been having is the vertigo/dizziness. I just completely feel off-balance and to me it's the worst symptom because it makes everything else seem 100x worse. I've heard that meclizine has worked with people with vertigo/dizziness, but i tried that and there was no change. Both my neuro and my dr refuse to even consider valium even for a short period.

What works? - dizziness
 

Hi Jingles,
It is sometimes hard to know if something is having an effect because it might take a long time and the you aren't sure if it was what you were taking or adjusting in some other way.

Regarding the dizziness: This never was my worst symptom. It was quite mild in my case, but I did take branch chained amino acids (BCAA), a nutritional supplement for a few months and I found that my dizziness did improve. Of course this could have happened anyway, or it might be that my body is compensating in some other way, but I think that it is worth a try. (Even though it does taste awful.)

The other thing that I found was that 10mg amitriptyline nightly does help me (but it seems not you) with headaches and neuropathic pain.

CS

There are others on this forum who have had success treating dizziness/vertigo. Using drugs to treat the symptom is only a short term solution. Since PCS is an injury, working on healing the underlying injury causing the specific symptom is best.

Hopefully, someone with success with dizziness/vertigo will read this and post their experience. If I remember, they may have worked with specialist ENT's to repair inner ear injuries that are common to PCS.

Not every symptom has an injury that can be healed specifically. The diffuse axonal injury is a difficult injury. The focal injuries may have serious symptoms that require therapy to help the brain rewire around the injury, if that is possible.

Many of us have learned work-arounds and accommodations so that we can return to a high function despite the unhealed injury. We have disciplines that allow us to live higher functioning lives.

The drugs many of us take are usually focused with enabling us to get better sleep, avoid intense depression or anxiety symptoms, control seizures, lessen headaches, etc.

I have propanolol in the cabinet for the rare instance of high blood pressure associated with a panic attack. I have not needed it in years due to my ability to prevent/avoid such events.

Do you monitor your own blood pressure with an 'at home' blood pressure kit?

Is there any evidence that your high blood pressure is related to your concussion?

What steps are you taking to lower anxiety levels?

Propanolol does not reduce anxiety. It just works to lower blood pressure and reduce the headaches that are caused by high blood pressure.

One of the side effects of butalbital, a component of Fiorinol, is dizziness. The caffeine in it is contraindicated for PCS.

Sounds like your doctors have been trying the "try this and see if it helps" method of health care. This is not uncommon for PCS.

hahaha, sorry your comment of "try this and see if it helps" was priceless because it's what I've felt they've been doing the entire time. I have started to see an ENT specialist to make sure there aren't any inner ear problems, but at the moment I have an ongoing sinus infection. So, on the 10th I'll be getting a scan to check my sinuses and then I go back on the 17th to see what the results are and to see what he wants to do.

I don't have high blood pressure and I don't really have anything to check it. I do have a higher heart rate then what's considered "normal", but it's only off slightly, which could be because of anxiety.

At the moment I've just been doing deep breathing, and kind of waiting because I'm still going through Xanax withdrawal... so... there's that. I do limit the amount of stress I'm around and I typically avoid stressful situations.

I stopped taking fiorinal because I was having to use it daily.

jingles...we sound like we're in the same boat. Fioricet ...similar to Fiorinal...tried excedrine but can only take it early...get jitters since i don't have caffeine anymore. Tried a few others...nothing works.

Headaches are soooo bad when I drive and go out anywhere.

2 advil barely took the edge off.

do noises bother you? can you tolerate tv and computer for long?

Noises, light, movement (at times)... pretty much anything and everything. I tolerate TV and computer for a while, but too much computer really bothers me for both the headache and dizziness.

Avoid Excedrin because it has caffeine. Instead, you can take aspirin and acetaminophen (Tylenol), even at maximum doses. Combined, they have strong pain relieving value. My doc told me to combine them. They work on different pain systems so combined they tend to be very effective.

btw, I was taking Excedrin when my doc read me the riot act about caffeine.

Medications and dizziness can be complicated. Some may even make things work rather than help.

PT and OT. That is where I would go. I have had amazing success with my occupational therapist, helping discover that a lot of my vertigo/dizziness was due to my vision issues. I now have exercises that help me a lot.

My Physical therapist does a lot of cranial work, mostly in attempts to figure out how to get rid of my headaches. But I have had terrible problems with falls and such and she uses a lot of pressure points to relief pressure on a specific cranial nerve that can affect balance and coordination.