Chiari Online Support Group

So tired


#1

I get so frustrated with the headaches, neck pain and overall pain. The doctors said mine was not bad enough for surgery. So how bad does it have to get to get surgery. Some days are worse than others but today is a bad one. Can’t take prescription pain meds because of work. IB is not covering it.


#2

There are other ways to control the pain which is much better than pain meds which, in the long term, could cause other problems such as kidney damage etc… Discuss with your doctor the possibility of a nerve block or rhyzotomy to block pain, as well as using meds such as Remeron (active ingredient mirtazerpine) and Lamictin which are not pain meds as such but actually work with the chemicals in the brain to balance and prevent pain.

This is the route I was on untill my operation, and still take the Remeron to prevent pain. I live mostly pain free. We waited to do the operation only when I became so pressurised in my head we no longer could postpone. Each of us are different. Try the meds route first and wait with the opereation until you know you have no other choice.

Also look at lifestyle changes. Pay attention to what triggers pain or headaches. Adjust your life. For example do not carry or lift things heavier than 5kg, sometimes less. Is your pillow comfortable and suitable. Avoid bending your neck back, any other that you find makes you uncomfortable. Be sensitive to what tires your body. Sitting with the head bent forward to read for too long etc. Hang in


#3

I understand your frustration, I am in the same boat. I’ve gone to 4 neurologists who all have told me the same thing, that’s it’s mild, too small etc but the symptoms, discomfort and pain is far from mild or small.

As for relief. The one thing that has helped me to find remotely any relief is CBD oil. I’m not sure where you live but I think you can at least buy it online. I purchased mine for CBD Unlimited. Only because my local health store had that brand there. I’m not sure about serving size, as I know everyone is different. I know on the bottle it reads 3 drops (3 mg). For myself, I need a bare minimum of 20 drops in the morning and sometimes more at night depending on how bad the things are in that cycle of symptoms.


#4

How bad does it have to be…?
Agony. Complete inability to care for oneself.
When u can’t use your arms any more or start having problems walking, breathing or swallowing


#5

When u can’t go to work anymore …
When you can’t get up from your chair
When you can’t cook anymore
When you become house bound …
That’s when the Dr’s know it’s time
If you are still able to function in their eyes and don’t have a syrinx then you are better on meds ( i agree about the cbd oil but personally prefer thc.
I’m 8 weeks post op. It has worsened my symptoms so I’m not advocating here
Take the advice above
Good posture
Good pillow
Only light lifting
Try not to look down too much
All the best


#6

How bad does it have to be…

My doctor said that it was clearly affecting my everyday life. I could do most day to day things even though it was so painful. I was really tired and choose to rest most of the time and not push myself. My neck and head pain would at time be so bad that I would have to sit on the floor where ever I was. My pain was mostly with bending my head down, standing quickly, and exertion ( everything from coughing, running in any capacity, going poo, stuff like that).

If you don’t think your doc understands the pain your in, then see another doc. If multiple think that you’re not ready for surgery then maybe that’s the case. But I wouldn’t commit to one doctor’s opinion. And you don’t have to be completely disabled or something in order to have the surgery that’s just silly.


#7

That’s not the case for everyone. Remember with Chiari everyone’s symptoms are different!! Some people never have loss of mobility in the limbs, yet, are great candidates for surgery.