My TOS symptoms are under control now and my major issue is occipital neck pains and headaches.
I wonder if anyone can suggest something.

I had headaches for 20+ years since college which progressively got worse and 10 years or so ago the neck pains started. At first these would come and go, but now I have them more or less daily. Muscle spasms on the back of the neck seem to be the cause of the pain.

Regular stretches and trigger point massage are somewhat helpful, but sometimes trigger really bad headaches and don't have any lasting effect.

The doctors only suggested over-the-counter painkillers which do help with the headaches although after taking them for many years I developed stomach problems (from NSAIDs) and tylenol addiction so I stopped taking them all unless I happen to have an unusually bad headache.
The really bad ones put me out of commission for one or two days. I get sensitive to light and sounds, nauseated etc. Thankfully, these only happen once every few months.

I was hoping regular posture exercises will bring some relief, but I am yet to see any improvement. Sometimes symptoms get better, but then flare up again. So I don't know how to proceed.

Any success resolving the neck/headache issues?

Upper cervical chiropractic?
Regular chiro that does soft tissue work along with adjusting?
Ultrasound, IF stim, low level laser??
acupressure/acupuncture?

The chiropractor I saw basically did trigger point massage on the back of the neck. This only had short-term effect.
This is something I continued doing on my own for the past year or so. Probably it is not as efficient doing it myself, but I can do it multiple times a day.
Still I only get short-term effect (or sometimes a flare-up, presumably when I irritate a nerve).
I was hoping to see some gradual improvement over time, but no luck so far.

Acupuncture and ultrasound had no effect (with 3 different PTs and 3 different acupuncturists over the years).

Did not try the laser thing - not sure I understand how it is supposed to work.

The neck pain usually gets worse at night and then gets better during the day. I spent many years trying to change the way I sleep, experimenting with different pillows etc. At best, I get some relief for a few days and then the pain comes back.
Anyone had issues with neck pains at night?

So sorry to hear about the cervical headaches. I suffer similarly. Often the weather is all it takes to set off a pain event.

Have you considered a muscle relaxer at bedtime? That might help calm down the muscles enough to let nerves repair. I take a Flexaril 10mg at night - and plan to do nothing for a solid 12 hours - they make me loopy.

Ice, Ice, Ice. That helps me a lot when Im aching.

And if those things fail, an Alieve for swelling OR a Percocet (not both at the same time!!)

Thats how I'm living with TOS. Best of luck and speedy healing to you!
Anne

Thanks astern.

I tried all the muscle relaxers for my TOS-like symptoms which had little effect.
Can't say if they helped with the headaches as my shoulder area pain at the time was 10 times worse than headaches. Maybe something I could try again.

Never tried ice for headaches. How do you use it? Ice bag on your head?

Excedrin helps quite well for my headaches, better than aleve/naproxen.
But I am afraid to take it unless I really have to - rebound headaches and gastritis is what I got in the past due to overuse.

I remember you were doing bent over rows.. try stopping those. They recruit the neck musculature extensively..basically, if your neck is bent or not straight on your spine, stop any shoulder strengthening as it will stretch your neck muscles.. which may be still healing.

Yes, this is a good suggestion.
I was wondering if some of the exercises I do were problematic for the neck
(and others problematic for the low back ).
I don't do a lot of these and will probably replace them with rubber bands or something similar.

Thanks Hiker. If you must do shoulder exercises, your neck must be supported all times. Some exercises show the person with lying on their stomach, or bent over and neck free. All these will recruit neck muscles.

I learnt what I told you about bent over rows when i did them - my shoulderblades would burn because the overactive neck muscles would go hyper. However, if i squeezed my blade back and down, while standing up, the same pain wouldn't occur to the same degree.

About your low back. If your low back is heavily arched, then don't do extension exercises, they will merely put the muscles under further strain. Also, rotating while extended is a firm no. That's how i injured my lower back.

Ice: I have a neck wrap that I keep in the freezer. A travel neck-pillow with natural contents is good - it can live in the freezer ( or be put in a microwave for heat ). I've also used small plastic cups with frozen water inside. All these can be applied to your pain over clothing or thin towel if using ice, when pain is getting you down. Experiment to see what location feels best - trigger points can be different for everyone. Sometimes for me, putting ice on my head where it hurts helps. But it can also help to ice my neck, shoulders, scapulae, even upper arms.

Heat: my Dr says use whatever feels best at the moment - heat or ice. Just a comment on heat, it causes tissue to swell a bit. Swelling/inflamation = not good. so use in limited amounts.

Anne