They did want to do a complete hysterectomy for me this summer but I told them i was still too young I will be 25 on July 6th and I do not want to give up hope yet. They keep telling me that i can no longer have children because a doctor gave me a staph infection and strep D after I had an IUD placed. That is how this all started. Oh I also had pelvic congestion syndrome where my veins in my pelvic area where swollen and wrapped around my ovaries and uterus knotted kinda. I also get ovarian cysts one month I had 6 and 2 had ruptured. When i was on the meds I told them no but some days now I gaurantee I will end up in the ER begging them for a hysterectomy. Ive done it before I found the reason for my pain. Told them i felt like doing it myself my pain was so bad. It is just a sharp stabbing debilitating pain :S

I'm sorry, I don't have any suggestions. I hope things get better for you though.

I'm sorry it's sounds like you are going through an aweful time of it.

I know the kind of pain you are talking about, and I also use heat to help, but of course in the heat of summer that is out. How about icing the area? Can you stand that? It might help if you can tolerate it.

Meditation might help lower the pain some, it took me quite awhile to get it to work, it's hard to learn how to mediate when you are in high pain levels but it can be done, I needed soothing music to concentrate on to get started. However, it only works while I am laying still not moving, but I'll take any help wherever I can.

How about a tens unit placed on the back nerves above the damage? You might be able to go to physical therapy to try that and they might know some other things you could do.

That's about it , hun, not much I know and it will not replace the meds you have lost, that's for sure. About all you can do is keep trying different things and don't give up hope that you will find something to help. How about acupressure or acupuncture? Have you looked into that? I really wish I had more to offer!

Anyway, wishing you less pain, and sending gentle hugs, hang in there!

I am so sorry for all of the pain that you are in, some of the suggestions that you've been given is very good, but maybe your pain management Doctor needs to send you to a Neurologist so he can explore the reason why you are having this seizures, it might not be the medication at all!
Have they done a scan of your brain? Is time to find out the reason for the seizures and not be so quick to blame it on the meds. Have they tried some other opiods on you? What about Methadone? Have they tried that? Hopefully something can be found to help your pain without causing seizures or any other severe side effect.
Take care and do not give up!

Tipper

I am in chronic pain and i also do not take pain meds due to side effects and personal preference, but what i find that helps some is lidoderm patches they numb the area where the pain is, they help but not totally. I found that trying to have a positive attitude will help, i didnt think it would, when i went off meds and i thought i just cant stand this pain or myself right now, then i told myself just one day of thinking positive and not try and let the pain win that day and it did help.

I am giving you suggestions and like i say they help, but when you do alot of things together that help a little before you know it, it helps alot.

take care

I also have endo. Along with my GP, PT, endo specialist, and pain specialist , I see a pain psychologist. He is GREAT! He is helping me with relaxation techniques and is trying hypnosis. Hypnosis can be very powerful if done right. I am just getting into this part of it and he is creating a special CD for me to listen to at home special for pain. The relaxation CDs help to keep the pain from getting worse with anxiety.

I have been trying to "dry out" from pain Rx to give my body and mind a rest ( so to speak ) and have been using these techniques and have been somewhat successful. ( aside from the withdrawls, which I haven't been able to beat yet. Work in progress and it SUCKS )

Hope things get better!

Megan,
A vagal nerve stimulator is sort of like a defibrillator for the brain. It aborts seizures. You may be a candidate.
Heres some sites to get you started:

http://www.epilepsy.com/epilepsy/vns

http://en.wikipedia.org/wiki/Vagus_nerve_stimulation

Heres a site by a patient with the implant:

http://www.howdydave.com/vns.html

Just Google Vagal Nerve Stimulator,and you will find plenty of information.
Hope this helps and gives you some encouragement. You hang in there.

-Snake

I have 2 fractures on my L4 vertrebra (Flaps) that will never heal and now the bone is growing a different way. My doctor has taken me off my pain pills. The only things that I can suggest to you is the pool that works, warm bath. Now dry heat helps me more than the heating pad. The heating pad seems to make it worse. Will you are in the bath try some Epson salt it will relieve some of the pain.

Some of you have issues more complicated than my own but still I have chronic pain and need to learn how to cope. I'm on a lot of meds but sometimes they don't even help.

The best thing that I do is to be very still and work on my computer. I play scrabble with a few friends and belong to Farmville. It sounds so silly but it's creative, I've met lots of people all over the world and it takes my mind off of the pain.

My pain is really only partially diagnosed. I have a stenosis in my neck which my primary doctor thinks is causing all the pain but I disagree with him because I can feel muscle movement in my skull which causes most of the pain.

Right now, I need to take a bath for an appointment tomorrow with the ENT and I don't want to get in the tub with the pain. I have dentures which are not fit right and I don't know if he can help or not. I'm afraid to go because I'm afraid I'll fall over from imbalance and embarrass myself.

I'm on permanent disability and stay inside my apartment with my disabled son. We're really the dream team! My youngest son who is taking me to the appointment tomorrow gets very frustrated with the situation and sometimes makes it worse. Strangely enough, when I ride in the car, I often get some relief. It must be like a rocking chair that relaxes me. Not looking forward to tomorrow but off I must go.

there has to be some kind of pain med you can take, talk to some other seizure people they may be able to shed some light?

The most important decision you have to make is who will be your pain specialist. If you like your current pain managment provider, then make sure he has tried anticunvulsents like neurontin, and then one (only one!_ antidepressent like wellbutrin, antitryptamlene or other, and then pain pill should not be lortab or vicaden, these are extrememly hard on liver. Change to vicaphrophen, or methodone(stronger) do not take atiq suckers (you will lost teeth and gain 20 or 30 pounds ) and finally, if your pain is over 3 or 4 years,, get the pain pump from metronic, it will change life. but make sure docotor has put at least 200 of tem in okay Good luck Zowiebowie

I wanted to post an update because this change and everything has thrown me into a depression I can no longer handle alone. My pain seems to have taken over my life. They did a new MRI and found that even in the past two-3 years my nerves have done the opposite and gotten worse. Being on meds suck when the dr says it will help and my nerves are worse. My husband a EMT doesnt undestand "chronic" pain to him. Pain tells your bidy something is wrong and you fix it pain is gone. He says this is a way to get attention or worse meds when i hate pills.

At the drs office i was also let down they put me back on vicodin and the dr had to tell me that this medicine is not hard to get off of. Not nearly as bad as the fentanyl. Worse I found out my step son stole some of my vicodin and no longer has it. I cannot wean and Im scared to death to go through withdrawls and possibly end up back in the hospital. I feel like no one can and i mean my family I feel that they cannot understand the emotional termoil this has caused me the anxiety is so bad I honestly havent slept in 3 days. My pain has kept me awake. They found that the seizures were from my pain not being controled another reason for the vicodin but my hubby looks at me like an addict. When I get sick like i will the next few days I will feel like one. They can say that just because you take this medicine as prescribed just like a cholesterol patient I can never help but feel like an addict because of how it makes me feel. It scares me.

The pain the withdrawls the meds all make me feel like an addict. Yet I have never abused and will actually not take my meds until I am in so much pain Im screaming and kicking and having seizures. I have no one to talk to this is the one place I feel safe and I hope I am. Im scared. that word is an understatement. Terrified is more like it. I cannot get my pain meds for another week he stole a week worth of medicine. Im in need of advice. please. someone told me to take sleeping pills and imodium and phenergan if I had some while going through withdrawls. My dr will not help me. Ypu run out early thats it unitl next month. This is something i learned this month I will have the nerve damage the rest of my life and a huge risk of getting more and more staph infections in my abdomin talk about anxiety. They put me on lorazapam also but it doesnt help at all. its 1 mg. I dont know if i can take more than that doseage but my dr has noticed finally that my pain is causing this the seizures and anxiety. I just hate medicine and feeling like crap when I run out. Medicine shouldnt do that a person. Its unfair we live in pain like this day in and out the meds shouldnt add to it.

HUgs evveryone and thank you

uncontroled pain is very hard to deal with. Have you tried seeing a good pain maagment doctor or seen a nuroeosurgeon. It's really impossible to function when it comes to pain that isn't controled. I would say get a good pm doc asap

Megan,

First of all I am very, very sorry for all that you are going through, it is a shame that your husband, a man that is in the medical field does not know or understand the difference between Addiction and Dependency! What is up with that???!!

You do not need to feel like an addict, you are NOT an addict. Addict's seek medications to get high (like the guy that stole your meds). They steal, lie, rob, do anything that they have to do to get their "fix". They go Doctor shopping, and they do not care where they get their meds, it could be from the streets, from a relative, or from a co-worker, they will steal from ANYONE in order to get their fix. That is definetely not you!!
What part of that your husband doesn't understand??!!

First thing that you need to do is find a new pain management Doctor that is going to help you. Check this 2 websites, and see if you can find a Doctor in your area that you can go to. The first one is; www.doctorsforpain.com and the other one is www.raceagainstpain.com. You do not need to stay with this Doctor! You have the choice to go to someone else, someone that is going to help you control your pain, and it's going to treat you fairly.

Next you need to keep your medications with you at all times, or get a safe with a key that you keep with you at all times, so NO ONE can get to your meds. You now know that there is a thieve in your family, and know that he is looking for the quick fix, so hide your meds! Keep them with you, do whatever you need to do to keep them away from him.

Do not talk to anyone about your pain meds, do not let anyone know what you take or for what, you will be amaze how many people will come out of the woodwork to try to get meds from you, and honestly, who needs that? So do not talk to anyone about it.

No one likes to be on medications, but you are in chronic pain, and you need your meds, so stop thinking of yourself as an addict, is a person that needs insulin to survive an addict?? NO! So the same here, you need those meds to be able to function, and to not get seizures, etc... So stop looking at yourself like an addict.

As far as your husband goes...... I would love for him to experience the pain that you are experiencing so he would understand.... I know that is hard, but try to ignore his mean comments. Whenever he starts calling you an addict, tell him; "Yeah, I am an addict, I am an addict that wants her pain control, I am an addict just like a patient that needs insulin is an addict!" suggest that he gets some education, and that he reads about addiction Vs. dependency, maybe then he will understand.....
You are too young to be in this predicament, and too young to be suffering this much. Try to find new Doctor's that will be pro-active and take care of your pain. NO ONE can do this for you, you need to this for yourself! Fired your Doc's and get new ones, that will take your pain seriously enough, to put you in the correct medications. Take care and know that we are here for you.....

Hugs,
Tipper

You really have it rough. First of all I have to second everything that Tipper has just said, your not a addict & your husband is doing a good job at making you feel like you are.

I went through something like you & would not touch the meds until I couldnt take it anymore. By then my pain was out of control & I had to play a game of catch up trying to get some relief. You have to stay a head of the pain & I doubt Vicodin is helping much with nerve pain.

You deserve quality of life, everyone does & if taking pain meds will give you some of your life back then so be it. Its evident the pain is causing you more health problems so you need to get into a good PM that will do whats in your best interest.

Surely after hearing the pain is causing your seizures you husband understands why meds are needed, If not then he needs to sit down with a good PM himself. This might sound harsh but sounds like he is worried about the wrong person & meds. He should be looking at why his son (assuming this is his son) took meds not prescribed to him.

Take Tippers advice & lock your meds up.
I feel really bad fo you & a little offended that you have to go through this just to get some relief.
.God bless, Sammy