How do you survive until relief comes?

Hi All,

This one is really bad in the "the window looks good way". (Don't worry, I would never do anything like that. I always talk to someone when it gets this way- and I have.} I am just tired of dealing with this level of pain. My neuro did order the IV of Depakan, but I can't get it until next week. If I get them more than once every four weeks, they lose their effectiveness. My Dad caught this one.

so now I am faced with a week in pretty bad pain. The only thing that is taking the edge off is T3 (sort of}, klonopin and benedryl every four hours. I just hate this. I don't know what to do anymore.

It doesn't help that my Mother's back is particularly bad right now- she will probably need surgery again- her fifth. When her back hurts she gets kind of cranky and mean. She puts up a great front to others, but we see the bad side of pain. Mom in pain + SM in Pain= me getting yelled at, and wanting to get away. I hate that she hurts too, and from the time I was little, I have wished for her pain to go away.

It is just so hard right now. Nothing is working well and I am just scared and tired and I don't know what to do anymore.
Help.

Pain free days,
sailing

SM,

So sorry to hear you are having a bad week. Try to hang in there, think happy thoughts, and get some sleep if possible. If there are any distractions you can tolerate (movies, books, music) that might help. If you need more pain meds see if there is anything else your doctor can do..

Good thoughts to you, sailingmuffin. An interesting book or just lying still and deep breathing until you are as relaxed as you can be are in a sweet daydream of your choice. Nice smells, the sounds of music or birds or rain. A warm blanket and something cool on your head and neck.

This is not forever; it is only temporary. With every winter hibernation is a new spring. Forget you mother, this is about you.

wow, you two are so sweet! and such words of encouragement.

s.m. I hope you find relief, really I do. I am taking the klonopin also, didn't think to have benedyrl with it. Does that make you sleepy? I might give it a try too.

I am on my 4 day of a steroid, and I got 2 good days out of it this time. Discouraging, don't want to go back to everyday again.

Wishing you the best....

Hi All,

Thanks so much for the words of advice and support. I hve no clue what I would do without y'all.

I am going to take your advice and try not to worry about mom getting upset. I know she is in pretty severe pain and that is probably why she is not in a good mood. Hiding helps some. I feel pretty bad for Dad right now because he is dealing with both us in bad shape. It is kind of scary when the 73 year old is the healthiest person in the house.

I have taken the advice about the quiet room, and distractions. I have found something to watch on the computer. I also have my favorite blanket- an absolutely beautiful quilt that a friend made. I am also going to let max hang out on my bed today. Max is the dog. I always have books. I have also discovered that if my eyes are too sensitive for the lamp, I can attach a little book light and read that way. I don't have much that I have to do this week- I work out with a trainer today and see my psychologist. I will probably help out at the elementary school thurs or friday. It is mostly one on one stuff.

I am going to go ahead and schedule the IV. Cause this is just horrendous.

My doctor increased my dose of klonopin and zanaflex. However, I had some filled recently so now the insurance co. has to approve the increased dose. I hope they do. I have no clue what to do if they don't. any advice?

I just hate this.

Pain free days,
sailingm

Hi Sailing,

You mentioned your Mum has bad back problems. Have you ever had your back and neck checked that you haven't any abnormalities pinching nerves or interferring with your spinal column in any way? I would imagine you have but thought I'd ask. These things are often inherited.

Hope your feeling bit better. Has the fainting calmed down?

I always take a long, long, cold, cold shower if I can. It feels wonderful for the aching head.

Hi All,

Thanks again for the advice.

As to the back question- My mother's back started to get bad about a year before I was born. Subesequent problems came from either the first or second surgery. I think they tied off a nerve in the second surgery. Funny story about that below.

I only remember the second as I was three at the time- and only because there is a funny story with that one. My brother and his best friend decided to ride their go carts on city streets, this is illegal in my city. A policeman saw them and followed them home. My brother and Sam ran into the house screaming "hide me, hide me" The policeman knocked on the door. I answered. I was three, he was big and scary, and I proceeded to slam the door in his face then take a flying leap onto my mother's bed. (She didn't want anyone to move the bed.} At this point, she decided to get up and see what was going on. By this time, the policeman was far more concerned with the fact that the 3 year old was scared of policeman than the fact the my brothers had broken the law.

Yes, I have had my back thoroughly checked out. I have slight scoliosis. However, I do have a head forward position. My mother said from the time that I was born that I "had a funny neck". Even as an infant, I had a very sensitive head. I would scream bloody murder every time my mom washed my hair, or tried to do it for church. I had short hair when I was little because the fighting ovver foind my hair was so bad. We have one picture at church of me standing next to my best friend crying because I did not want to wear a bonnet in the photo.

She took me to a pediatirc orthopedist who thought it was nothing. I also wore her old back brace for a while to see if that would help. It didn't. When the headaches became chronic, she kept asking the doctors to look at the neck. When we finally convinced them to do so, they did an occipital nerve block- which led to my first period of remission. I had nine great months. Also, I was able to really enjoy British Studies in Oxford at that time. This eventually led to the placement of the stimulator, which has also helped tremendously- more than anything else. I think there has to be some connection between the headaches and the neck stuff, we just don't know what it is. I know there has to be some connestion, I jut don't know what it is.

Yes, I have been told to take benedryl with my headache medicines because it does help and maked the meds a little more effective.

As to ice- I hate cold showerd, but I am not above wrapping my head in ice packs or simply putting it on the back of neck.

The IV is scheduled for Wednesday at 1. This was the first time that was avaliable. So I will sticke it out till then. The insurance did approve the increased doses of Klonopin and Zanaflex. A combo of tylenol 3, klonopin, and benedryl is taking the edge off- knocking it down form a 9.5 to a 9.

I don't have to volunteer this week, but will probably be needed every day next week, which is fine. So my plaan for today is to rest, hide from Mom as she is in pre-party mode, use any form of distraction that I can- reading, watching something on the computer. On the bright side, I have mastered a new knitting stitch.

Ok, I know I rambled on again. Sorry.

Thanks so much for your help.

Pain free days,
sailingm

Yes the whole neck thing is interesting.

I am coming to the conclusion for myself that the neck plays a huge part of it.

I've told the story before of how I have seen numerous chiropractors over the years who have taken xrays and never mentioned that 2 of my vertabrea are fused - c2 and c3. This was before I learnt to look at things myself.

When I went back to my last chiro recently to pick up some xrays he took about two years ago, (I'm retrieving all my xrays because I am starting to glow a bright green and don't want any more), he commented "with that neck anything could be happening."

WHY didn't he say this two years ago????

So now researching it myself. Anyway that's my rant for the day, think I did the same rant a few months ago but it just makes my blood boil thinking about how all these chiros and doctors who have seen my xrays never said anything.

Interesting how the nerve blocks on your neck do affect how you feel Sailing. At the moment I am experimenting with a cervical collar at night to see if it gives some relief. I'm hoping that by letting the neck muscles relax for a few hours that some of the tension will go. Who knows for $18.20 it's worth a try.

So why did you have a guilty consciense as a 3 years old? Were you a naughty little girl?

Hi,

No, my brothers used to scare me by making siren or police sounds. Also the policeman was huge and that would scare any three year old. My brothers are 8 and 1O years older than I.