Should I detox? I'm scared & confused

[Flutterby4]

Hi. I am very confused & scared. I suffer from multiple health issues. Most are neuroloogical. I have had brain surgeries, have a VP shunt in for Adult Onset Obstructive Hydrocephalus due to multiple other brain abnormalities. I still have no real answer as to why I lived a healthy life for 25 years, suffered a seizure like black out spell one night (lot of stress at the time) and my life turned upside down. I don't ever remember having headaches where I asked my parents for asprin or tylenol, unless I had a tonsil or sinus infection. Maybe I have always lived in pain and it was just normal to me until my pressures went to a fatal level. Along with this, I have multiple pain issues now associated with my battle to live. I have several brain disorders that are associated with pain. The brain sends out scrambled messages or something. Yet I know I have a high threshold to pain. It took the drs 1.5 yrs to figure out I had increased cranial pressures because they never recorded my opening pressure in the beginning which held the answer to why my laterial ventricles were enlarged and I had crowding at the brainstem and cerebellum, along with missing the middle part of the brain. Okay...so now I have neuromuscular disease and fibromylagia. Are these the same things because no dr ever tells me answers. I have to pull my records and search for reasons and answers. All these drs toss my around like a hot potatoe and when I get a good dr, they move away! Uggh! So I have all these drs telling me I have real pain...multiple health issues causing pain. And then I have these drs who say my pain is all related to my opiate use! Well, it was real pain for 1.5 years untreated (ICP) that lead me to cry out for help. Once they repeated the spinal tap, several drs on my team at the time said I was an absolute CHAMP to have maintained a "normal" working life walking around with my brain under pressure and dying from tissue damage. I know what is PAIN from health issues and what is pain from taking pain pills. Yes, you build a tolerance and become dependent. But heres the deal. I have never had a day without pain since the seizure. The only times I have not felt pain is when I'm being sedated for surgery. So now I have no drs like before. I have been reduced to training clinics. I did have a good dr who really looked at my whole history. I was asking him to help me get off the Oxycontin and Oxycodone I had now been upgraded to. I did use Percocet 10/325 for 7 years. I was given 120 a month but often made these scripts last several months. I only took when I was needing a break from the pain. My idea' was to try and tolerate as much pain as possible to build my own natural tolerance. It was when I had to work long shifts that I would then rely on some help from pain pills. I think what has happened is some dr in my care has labeled me. Yet I have 28 medical diganosis. All the way from severe iron def anemia (hematocrit is usually around 10) to IBS, Gastric Bypass after Brain surgery to reduce crowding, potassium def, hydro, Chiari Malformation and the list goes on and on. When I review my own records, I can't believe I am still functioning as close to normal (what is normal, lol) as possible. Okay with all that history and leaving tons out....
HERE IS MY QUESTION:
My new doctor says only end stage cancer patients are entitled to my type of current pain treatment. I was put on this after delivering my 4th child, after my health battle begun, and my body literally shut down. My bone marrow stopped producing red blood cells, I had low labs where they shouldn't be, high labs where they should be lower...I was a mess. Holding on to life but on the outside world. Fighting to not be admitted. So now that I am almost 2 years out from baby, I guess she thinks that all the pain issues and effects just disappear. How does she not see that I made Percocet 10s last for 7 years and only was upgraded by another trusting team of Drs when I was so low on everything, had a partial shunt blockage found on the end of my tube which I think is back from scarring in my belly from pregnancies...RAMBLING> SORRY.
She wants me to withdraw off all pain meds. I don't get it. WHAT ABOUT THE REASONS I WAS PUT ON PAIN MEDS....THE FIBRO itself is treated in hundreds of people. And I can't take alternative meds like celebrex or lyrica because I was told it would instigate my seizures again...I was told my best treatment option was narcotics.
SO she has cut me down on the first month to a 1/4 of what I was taking. I AM SICK. I FEEL REAL PAIN. I HURT from my own health problems and the withdraws. WHY are they not offering a detox plan? I have 14 brain disorders and I feel like I am dying. I called the office adminstration of the hospital. I was told that all of my complaints are totally vaild and all makes sense and adds up....but nothing has been done. I've been told that they can't make their doctors treat patients a certain way...and they have not found a dr that will.
SHOULD I ASK FOR METHADONE TO HELP? Will it help my real pain?
DOES ANYONE UNDERSTAND THIS as I am frantic and I know this post is all over the place. I have real pain issues. I have been called a walking miracle by a top 10 neurosurgeon. He also said I was a champ and he has never seen someone endure the pain I did for as long as I did. I have no more options. I don't want to turn to the streets to live some kind of life without pain cuz that is only going to make it worse. I am suppose to make a 1 month script of my meds last 2 months and I am coming up on the first 30 days and will be empty on that day. What am I going to do? My body is already withdrawing in a sense because the dosage is no longer addressing the pain and instead my body is craving more I guess. IT *****. I never wanted this. I wish I would have declined any increases and stayed on Percocet because I never got treated like this. I know people who have said their back hurts and they get all kinds of stuff. YET I HAVE ALL THIS HISTORY AND RECORDS. This same dr office group admitted me a couple months ago, threw me in to total withdraw, gave me 1 pill verses the 12 I was taking and also had me on morephine the night before and stopped it cold turkey. It was the scariest thing ever in my life. My body was doing all kinds of horrible stuff. Twitching, vomiting, nausea, sweats, shakes, and on and on.
Can anybody suggest what I should say to these DRS? Its like the agree but won't treat. I am willing to come off opiates as long as they do something for the real pain. The headaches from my shunt not draining fast enough, the fact that my body is eating my muscle (waisting away of muscle - a neuro issue) and the FIBRO, neuromuscular disease...so MUCH. How am I going to live? I was barely making it before I gave in to the increase which I fought and delayed as long as I could before going crazy....why do these drs not look at the facts in med records.
IF anyone can make sense of my desperate post, please let me know. I am so confused. I spent all night feeling horrible....like I was scared. ALmost like I am having hallucenations but I am not taking any street drugs or anything else other than reducing my normal meds. Hope someone understands all this and can offer some adivce. THANK YOU SO MUCH for reading my ramble mispelled post. SHAKES are bad right now. WHY are they doing this to me...I am not a self chosen addict. I just want to live with some decent quality of life. !HELP!

[new2thisAZ]

Hi - I apologize for being absent, but having a little bit of crazy myself and have been extremely overloaded.

How are you?

[vicki595]

Hi-  I hope you do go to the ER. Some things need to be addressed for you.   A couple of things:

Usually, a non addict who has pain and receives an opiate pain med, will not need to get another rx for pain from another doctor.  Usually that person will say something like: "I already have some Percocet at home". It wouldn't matter if it was prescribed from another doctor.  So, I think that may be how it was looked at...

Regarding school?  You described being dismissed because it "would be a waste". That's illegal because it's discrimination.

As I said, I hope you get to the ER. Those seizures need to addressed before your brain is further damaged.

Best of luck to you!

[Flutterby4]

Hi. Its 4:02 am. I had a very rough day and night in bed going through withdraws. It feels like my heart is pounding so very hard yet beating slow. There are times it will seem to speed up. I think that may be anxiety related when I begin to worry, "what is going on with my heart!" I have all the stomach flu symptoms. - yuck. But here is what has me really worried. As I was sleeping, it was like my mind kept running. I just lost my brother last week and it was like I was in a dream of all the events. I guess I feel like I'm losing touch with reality from all the stress to my health. I was asleep but aware of what I was feeling and thinking. I began crying in my sleep trying to wake up from the real sleep and the reality I am facing. When I finally woke and was laying in bed, it was like my brain did a reboot. Like time just stopped and then skipped like a broken record. I then took one of my last breakthru's to help ease some of the feelings. Then I fell back to sleep. Hours later, I think I had a seizure. Again, I was aware of my sleeping body but could feel twitching and jerking...I was unable to pull out of it. Then, Thank GOD, one of my younger children came running in the room. She persisted until I was talking to her. She said, "Momma, why euuu shake, euu (you) cold momma?" I think she saw me having a seizure. She said, "You made loud funny noisees momma?" This is my 3rd and she is very gifted in spirit. She said she needed to wake me up. Isn't that weird but special. So I had all my kids come lay with me for a bit until my agitation started acting up. I told them it was time for bed. I was able to fall back asleep but woke again with the above issues. I believe I am having small seizures from withdraw. My chest feels like a weight is on it. My arms and legs feel real heavy. I am about to go to the ER at the other hospital in my area. I pray that they will check all things and come up with something that will help. I signed on to write down the 3 things u had posted earlier to take in. I also wrote a timeline of events. I hope this helps. I am really worried about how my heart is responding and my brain. But my chest hurts like it has not before. I do have a mild right atrium av block. This was found by chance during all the other testing after the first seizure black out spell. I wonder if the narcotics have took a toll on my heart or not having them is taking a toll. Plus I have been so low on all my labs including blood volumes...I just am tired. Very tired of all this. But I will stay persistent. If I don't. I may loose this round with serious health consequences. So off I go, please pray for me. I am taking my lap top just in case I need to look up information to discuss with the ER docs. Thanks.

[new2thisAZ]

I wish I was your neighbor, too. :-)

Whether or not anyone else in your immediate circle says it, I'm PROUD of you! You're not lazy. You have so man legitimate health issues... and one of which would put an average person down and out. And you're here, supporting your kids, living your life. Yes - it stinks at time. Yes - it would be easier if you didn't have to balance all this crap. Yes - doctors can ADD to the problem. But you're doing it.

I say, keep on keeping on. When the road is uphill, strap on your hiking boots. When the boulders rolls down the mountain and threaten to crush you, jump out of the way and get back on the trail. You will still encounter some jerky docs - LEAVE THEM. You need, and are worthy of, a doctor that will be your partner and trusted director. They are out there, even if they are few and far between.

Keep posting. It's the funniest thing on these boards, I don't know you from Adam, but I feel akin to you and the struggle you describe. Please let us know how you're doing.

[Flutterby4]

CONT:
Well, since I find myself rambling, I will close this out. I think this is all good for me because it is allowing me to work out my inner feelings without dropping the load on my loved ones. I know they worry for me. My mother is a RN. You would think this would be of benefit. Instead, she cries that she cares for people all day long and can help them but she can't help her daughter. So I have chosen to not reach out to her to much. She is my back up voice. When I was leaning all these things, I would call her and tell her the
negative possibilites just in case. I have to live with the fear that my shunt could just stop working and I could go to sleep and fall in to a coma because of the sneaking rise in pressures. I just needed another voice to explain all the research and possibilities of the many problems.
I am going to do all you suggested. Well, after I sleep and have a rested mind. I post after a day of long events and I'm usually very tired (in many ways).
Again. I really thank you for your time and all you have said is more than welcomed and understood. There was nothing harsh at all about it. It's almost as if you were suppose to come across my post to help....because all you have said, I have tried in the past and it was about reminding myself that I need to try it again since there are different care professionals involved.
I really have experienced some cruel things in the med world. I can tell when they are just judging me based on my list of meds before they even review my history. Once they look in my chart, I can see and hear a change in their approach. Now its just these DRS who think the only people who feel pain are end stage cancer patients. I am not one of these patients but I can assure them I feel real pain. The sad thing is that, I really dislike, HATE (which is a strong word) sitting home each day. Up until my 4th baby, I was still working part-time and going to school to better myself. It was the pain that changed all of that. I just wish they would understand I want to treat the pain so I can resume a life worth more than sitting at home. I am by no means a lazy person and I feel just that. LAZY and trapped. I push myself many days and then at night, I pay a horrible price. So I have just gotten comfortable with doing little so I feel little. Understand?
Sorry for my spelling issues as well. I have gotten use to spell check because most things I do are on the computer. Or the text language has become a common daily use.
Ok, gonna go. I will post my updates about Monday. I am going to attempt to make the list recommended. I wish you were my neighbor so you could help me. LOL. Thanks again. God Bless you....I mean that

[Flutterby4]

CONT:
See, I am not only fighting this unknown rare brain process, but I am also confronting my biggest fear. My maternal grandmother died from Alzheimers. When I was young, my mother had her live with us. I remember her moments. We could be baking cookies and all be good. She would know exactly who I was, were she was, and what we were doing. The next minute she would start screaming that I was a stranger trying to hurt or take something from her. I saw her total fear. Like, she was somewhat aware that this whole moment just took place, but really not connected to it all. Make sense? And I remember hearing her cry at night. She would wake up and be confused where she was, what year, and all kinds of things. But she would cry more at night because of the dark. It just made it harder. So my Dad got special nightlights to put throughout the house. I wrote her a letter to keep at her bed trying to explain the things that would create confusion and fear. (Like that movie, 50 blind dates wth Adam Sandler and what he did for Drew B character). Then there was the times she would need us to explain the Alzheimers process. So, I eventually took that letter back and just wrote, GRANDMA, we love you and you are with your family in the year (19xx). With that said, my grandma also had severe Triple Curvature Scolosis. She fell when she was a child and broke her back in an area that healed but it aggrivated her TCS. She was hunched over pretty bad by the time I was born. Her shoulders were very uneven. My TCS was actually diagnosed at the age of 17 (before all my med stuff) after a car wreck. I was told it was mild. My mother said she had me checked throughout my younger school years due to the history and it was never found. That DR. explained that TCS usually skips a generation, meaning it skipped to me. So I also have to worry if the Alzheimers has done the same. Then add that on top of my neuro findings, wheew! Also, with Septo-Optic Dysplasia, I have to worry about losing my eyesight. It is close to perfect right now thank God. So my fear is this, dealing with Alzheimer symptoms at a young age and then to be blind. So I will be lost in the dark, literally. That is a HUGE fear. So bad, I sleep with lights on and usually stay up all night until daylight breaks. Well, I only get to do this in the summer when my older kids are on school break. That allows me a little more time to sleep in. My husband has been working from home when able and that helps as well. So I take advantage of it while I can. I just don't like the dark. I know I should be making myself get use to it just in case, but my faith is stronger than that. I believe that GOD will not give me more than I can handle, and that is just something I have told him I can't handle. So I pray he continues to grant me good vision. My only visual problems are blurring, bobbing, partial block-black spots...etc due to neuro issues. Everyday is different. I even have days were my speech sounds very altered and then it is fine within hours. Its very weird. I know that my brain is reacting at these moments to different messages and possible pressure changes. The shunt that I currently have is an adjustable by natural change one. There are some you can change the settings to low, med, or high. Mine reacts with a valve that will open based on the fluid amounts for the day. Even sneezing will activate the valve to start draining. I actually like this one because if I had one with settings, it would run at the desired level all day. So this one works with my body and it has been good to me. When it was placed, I did have a small infection which could lead to menigitis. I was very fortunate. It was scary because I went in to have the stitches removed and my primary noted the drainage and pus like fluid on the incision site. She called the town, 3 hrs away, where I had the procedure done. They were all on RUSH ALERT telling me I had to go immediately back to the town to be admitted. But after one night and prayers, everything balanced out.
I have a book for Alzheimers patients that contains brain games. I do this every week or so to keep myself active. I usually can write a better flow to things but with my med changes, it has just been hard to keep track. I misplace things all the time.
I have had to remind my loved ones that this is not an easy process. I have been able to TIVO that show on VHI with the actors going in to detox (can't think of the name right now) and the other show on A&E called Intervention. It is helpful for them to see others going through the hard process of withdrawing. I just have to make sure my older kids are aware that my issues are not from abuse but still the effects are similar.
Another thing is that I really don't have anyone to just talk to. I am a mommy of 4. My older kids are in that stage of FRIENDS ARE EVERYTHING. I am there whenever they need to talk but I do not like to overwhelm them with my own issues. And then I have 2 under the age of 4, so I get lost in the BABY TALK. I don't work outside of the home so my conversation is a bit on the null side.
I said I was once the multi tasking queen, now I am the ramble queen. LOL. But what you said is not harsh, its the truth. And its part of my changes that I must try to stay up with.
I do wish I had someone like you close in my family. It would be nice to have someone to go with me to appointments that can help me stay on point about the current issue and long term request. I have tried this believe me. I even ask after we have touched base on current med problems what can be done for long term. Like with my triple curvature, it is mild and I have had some changes take place on the history of XRAYS. I ask why have they not suggested me wearing a back brace at night to help keep me aligned. They just push it off like its not a big deal and one said, well when it gets bad enough, you can consider surgery to place rods in your back. Sometimes it feels like they totally overlook preventative measures and just wait for the ISH to hit the fan.
I have told them that I would much rather focus on long term goals than short term. This is why I made my percocet mgmt work for so long. I did not want to exhaust all possible pain options early on in life. I plan to be here as long as GOD has allowed me. And with that, I have also had drs make a mockery of my faith...like saying, well since you know GOD has worked miracles he will continue. I laugh inside and think, GOD gave us all knowledge to use and he would like us to enforce that. Meaning, if I am suggesting a good long term fix for TCS, why not use it. The only thing is that I need a DR to get a back brace fitting done and they just don't listen. We all know that alot of the medical world is just about money and the current new meds that are the POPULAR choice.
.

[Flutterby4]

Hi there. I again want to thank you for the time taken to respond to my dilema. I really appreciate all you have suggested and wrote. The firstt thing I want to address (since it was towards the end of your post) so others may not think it is harsh...is the comment about being unfocused. You are right. It's very hard right now to keep focused on one task with all the changes going on due to medications and something that could be controlled and changed. It makes it harder because I have been aware of the subtle changes in my thought process. I once was the MULTI-TASKING Queen. I was one of those people who actually worked better under stress. In all of my jobs over the years I worked, I was a top employee. I even got an award once made just for me called, MULTI-TASKING QUEEN, lol. To be in my mid 30s and deal with what my grandmother is, well its kind of heartbreaking. See, I was told that my brain fuctions like that of an autistic person. This was discussed when I went to one of my DR'S concerned that I was forgetting things that I use to not. I also noticed my nerves were getting bad out in crowded area's. What I was told was that brains are like computers. We clear memory (temp things not needed long term), we store memories and other things, etc. And sometimes your brain can crash with to much being loaded. And that was what had begun to happen. The many sounds in a store, the aisles of people, moving in and out of spaces, and basic general things were creating a overwhelming program to load and RUN. (HAHA). I try to laugh at these things because its a good natural medicine.

[new2thisAZ]

Hi again. Sorry yesterday was so rough. The more I read, the more I think you can act as your own advocate. Take control of what you can! You are an amazing, dedicated woman. You are the BEST expert on your own health, what has worked, and what hasn't. Now you just have to figure out the best way to communicate all that info to them.

Unfortunately, our healthcare system is broken. So many people believe that each doctor is aware of what each other doctor is doing. That one group has access (and reads!) what another group may be doing in the same hospital system. We don't. It's tragic, but true.

The very best thing you can do is find a system that works for you to record your own information. I have one myself. I started it on my computer - it's a simple Word document that lists current medications, dosages, and prescribing docs. Then I have another section called "chief complaints" - which for each appointment, really should be limited to no more than 3. It's sad, but most visits are slotted for 15 minutes. That includes a history, and exam, and treatment. It's all the docs are paid for, and it's all they can afford to spend with each patient. Another travesty, but sadly the way it is. Once in awhile, you can get 30 minutes or 60, but it's usually once a year or for your 1st visit.

I care what happens for you, and I want to put this as gently as possible - you have SO much going on, your history is so complex, I fear you will lose your doc before you really get to explain your primary concerns and what you are looking for them to help you with that day. Unfortunately, it's likely not going to be a chunk of items, so how can you prioritize your top 2-3 concerns that they can address that day? Is it to share your history so they can treat you better? Is it to address the pain? Is it to address coming off narcotics? Is it to figure out the cause of the seizures? Etc. Unfortunately, docs don't have a great history of tuning people in, but tuning them out. You can help them. I'd even consider having that bullet point list and GIVING it to them. They can read - and you can tell them "Here are the items I want to walk out of here understanding." Heck, this is even a great exercise for you to understand and break down everything going on into manageable parts.

Please don't take this harshly, but you have such rich life experiences, and you take care to make sure we understand, that your writing can come across as a little unfocused. I am making an assumption that might also occur when you speak. The medical community, quite frankly, stinks at listening. And it's REALLY hard to change their approach, but you can change your approach to them.

I'm really glad to hear you'll be seeking out help Monday. Will you try a new doctor, or stick with one you've used before? What can you do to prepare for that appointment?

And, I'm hopeful that today will be a better day for you than yesterday! Keep posting!

[vicki595]

You asked about Methadone. Yes, it's sometimes used for pain and not addiction. Ask the doctor about it. I really don't understand why she's taking you off pain meds!!  I would think she'd want you to be comfortable and have a good quality of life. And I agree, you need an advocate!  Have you contacted any social services in your area?  You are on disability and entitled to receive help!

[Flutterby4]

Today has been very hard. I had to lay down most of the day and deal with horrible withdraw effects. I think I had 2 seizures that were very mild. It was like I just disappeared for a minute, like time stopped (paused) and then resumed with a lost gap of memory and time. I pray that these drs really listen to me. I am not seeking pain meds, I am only seeking a small bit of relief. I know I will always deal with some kind of pain due to all that is wrong, but I am not strong enough to do this all alone. I need some help. I'm not asking to fly high. I have even declined increased dosage because the side effects (the euphoria that others do seek) are much more deteremential than the pain benefits. I don't like feeling drunk or high...I just want to feel like me minus some pain. Again, I no so many people on much more than I who have nothing compared to what I do. Why is it so easy for them to get pain help verses me? Probably because the worries of what my happen are not the same. Please pray for me. I fear I am going to die from this withdraw or from living in so much pain I just can't take it. STILL SCARED. MORE THAN BEFORE. GOD has done so much for me and I do rely on my faith in great ways. I have always been a fighter, I just don't want to give up and I'm starting to feel like that is on the surface. I have overcome so much.....I was told to abort my last 2 babies and I refused to do that after I was given a second chance at life. Its like the DRS blame me for the results of the wear and tear on my health. Why can't they see someone who was so unselfish they risked their own life for beautiful life to take place. Both babies are very healthy. My last one was exposed to much more pain meds than my 3rd one. And he is very smart and alert. A little on the small side but he is a JOY. I would never go back and do it different. So I just have to hold all that love as my motivation, but its hard looking at their little faces and to think I may be gone and not see them grow up. GOD, hear my cries and deliver me please....And that prayer so hard knowing he did not create pain meds but I need help. My body hurts and I wish it didn't. Its like a prison. I want to do much more in goals and determination but my body is this huge weight and I just want to break free. The pain meds was helping me live a more normal life and now they are taking them away and I am left in bed most days. I just cry....

[Flutterby4]

Thank You so much. Your advice really helps. It makes perfect sense to do that. And yes, I have tried it in the past and the drs will often distract and not let me finish. What happens is the first point begins discussion and then a list of test is suggested, scheduled and the rest is forgotten about because I think, maybe one of these test will provide an underlying reason and answer, then my pain will get better. The fact is, the more I review my own records, I don't see how they can't see how much of a trooper I am. I have been through so much and its like they pick out the one bad thing and run with it. Meaning, I did have a dr drop me because she claimed I did not tell her I was getting other pain meds. Here was that situation. I had been treated with Percocet 10 for 4 years at the time when I got pregnant with baby 3 after the health battle began. Because I was pregnant, I told her I did not want to take any meds while pregnant. That worked the 1st trimester until I just could not take it any longer. My OB/GYN said it was safe to take Perc while pregnant. So she prescribed 5mg of Perc in the amount of 50. I told my primary dr this and that it was not helping. But she must have forgot that part. She then added 5mg in the amount of 30 per month to help with the return headaches (which was later found during my c-section that the end of my shunt tube was blocked with fibrous tissue from my belly stretching due to growing baby). My OB gave me perc for RLS at nights. So I was on 80 pills of 5mg Perc during my pregnancy. Prior to for 4 yrs I had 120 pills of 10mg Perc. So in a sense, I was still taking less than I was already okayed for. After I had the baby and made a comment to my primary that she should help me pay for college since she was treating me with birth control and I still got pregnant, just teasing her, I got a letter she discharged me for not telling her I had another dr prescribing pain meds. I tried to explain that I did tell her during the appt she wrote the 1st script in preg and that she use to write 120 of 10mg...so what was I doing that was wrong. Plus both DRS were part of the same hospital and I figured it was all in their computer system, and my OB was very aware that I was getting the other script. It was even written that her script was for RLS and the other was for chronic headaches. I feel my primary found a way to get me out of her care by blaming me for something innocent. By the time u add the scripts...I was really getting only 40 pills of 10mg. Take the 80 5's - make it 10s and you get 40 pills of the 120 I use to get for 4 years. Its just been a mess. I did not ask for this and they often treat me like I am somehow making this a bigger issue than needs to be but then when u ask them for answers...they respond with, I have never seen a case like yours, you have a very rare disease process and complicated history. So again, all that u said makes complete sense and I will try it. I am calling Monday to ask for help. Even if they feel I should detox and have no pain mgmt....they should offer something like methadone to help during the process. Using narcotics for a total of 8 + years is a major deal when and if it was considered to be only addiction use. Do they not realize that the 3 meds I am withdrawing from have alone killed people during detox. So I have 3 meds that have caused death on solo withdraw, plus my brain is different than everyone else. SO my brain could respond in major fatal ways and that is what has me so scared. I know my body very well. I can even tell when my blood count is in the single digits by the way I feel. And my body is crying out for help. There is a horrible fealing of fear that something bad is about to happen. My body is literally wigging out. I have twitches and my husband says he thinks I am having seizures while I sleep. He tries to wake me out of them, he says I don't respond and then I stop the slight jerking (twitch) and snore real loud. That sounds like a seizure to me. Then I call to ask them to check my activity and I'm told they can only get a true result after I have been of all meds for a while and it is out of my system so it does not cause an abnromal beta activity result. How is that going to save me if indeed I am having seizures now. And another dr said to treat minor seizures in my case could case full blown seizure activity...she is the one who said narcotic treatment is the safest way for me to treat pain because it has worked in the past without serious side effects. The only effect is possible abuse (which I have never done) and tolerance. All these other meds such as neurontin, which I have tried, leaves me like a zombie and often results in horrible rebound headaches. I have 4 children ranging from 15 to 2. Being a mother is the only thing I have left. I have lost my career due to disability (stylist) and had to drop from nursing school because I am a risk to caring for patients because of my own health issues and fainting spells. I do hope to finish my degree just because I want to and to show my kids that as long as you try, you are a winner. You play the hand life dealt you no matter what. But now my school has said that they do not wish to provide my education because its like a waist of time I guess. I just want to be a good mother. I still fix my kids dinner every day and I plan to keep doing it. However, now that they are decreasing my pain meds, I am in bed now most of the days and it breaks my heart. The sad thing is you meet a dr in a quick office visit and you entrust your life and quality of that life to them to only be judged as to what they believe is best...I have been told by another dr that he does not allow patients to dictact their care. I saved this dr from killing me with a depo shot for abnormal female bleeding explaining that it could possibly cause a stroke due to my health history. I guess he got mad that a disabled mother could out think his education.Its been very hard. I wish I had a personal advocate but in my area you can only complain to the hospitals advocates who always agree with me but nothing is ever done. Thanks for your help.

[Flutterby4]

I am missing the Septum Pellucidum. The septum pellucidum (SP) is a thin membrane located at the midline of the brain. Children who are born without this membraine and also have other abnormalities--pituitary deficiencies and abnormal development of the optic disk--have a disorder known as septo-optic dysplasia.ave agenisis of the corpus callosum.
That above was copied from NINDS. I also have all the other stuff associated with it incuding agenisis of the corpus. That movie Rainman was based on a woman who had AGCC. So that is part of the middle part of my brain I reference. I also have a "deformed" 3rd ventricle and aqueductal stenosis. There are so many abnormalities and some often tie it to each other like above. I am trying to find a ONE NAME disorder or disease that cna explain the 14 abnormalities. There are more "Findings" on my MRIs and CT scans but no one explains what it means. Like the radiologist will remark on my anterior horns and that they are squared off and I don't really know if that is normal or not but they list it in the findings and remarks. And I did consult pain management. The first hospital only checked my spine and commented that I had mild arthritic changes in my triple curvature scolosis, facet disease, DDD, and loss of lordosis. See, my whole neuro development appears to be ABNORMAL and with all that I have, you would think I would be in a wheelchair or severely disabled. I am able to walk and talk fine. I do have subtle issues and to have a flattened pituitary gland and empty sella syndrome, my moods are somewhat decent. However, I fought so hard to INSPIRE my loved ones that faith will overcome this battle that they sometimes forget that I am alone in the world facing the unknown as I yet to find anyone in my situation. Back to pain mgmt. The 1st place also found I was way low on vitamin D. They only sent a script for high dose Vitamin D units. Never addressed my real pain from my brain being different and all the problems I have. The second place I just went to told me....He was not smart enough to treat my pain. Because they are scared of prescribing a medicine that my brain will not like and what could happen. I also had gastric bypass after my VP Shunt. I was looking at having another brain operation to uncrowd the cerebellum and brainstem. I had been diagnosed with Psuedotumor Cerebri as well which is associated with the absent septum pellucidum. I did a ton of research in my quest to avoid as many brain operations as possible. What I discovered was the Psuedo had most of the same symptoms as Chiari (aka Cerebellar Ectopia) malformation which the surgery was to address. Due to my change in physical activity because EVERYTHING HURT, even brushing my hair at the time, because of having increased pressures, I put on alot of weight. I was already a bit overweight when this all began from having 2 children back to back. So I decided to have gastric bypass for overall health benefits and if I became a total dependent patient, I would not be heavy and possible neglect would not occur...also, when you are overweight, all your internal structures become larger. My hopes was to shrink and make more room in my brain. It worked. I had great improvement in all areas until I got pregnant 2 years after gastric bypass. My body did not respond to hormone birth control. I had 3 different forms of birth control. I had just switched from the nuva ring because it was irritating my insides to the YAZ pill. So I actually had a month of the nuva ring released in my system and took the YAz pill on top. I also had PLAN B called in during my switch and I still got pregnant. That drained my reserves off vitamins, put alot of stress on my fragile health, and made my shunt work harder since pregnancy increases fluid volumes. I hope that helps explain more. So yes, I have talked with my local pain mgmt groups. My city only has 2. I am going to try to revisit the first dr again and hope he will listen more to the real issues. He had asked me what was bothering me during that appointment. I told him my lower back and pelvic area. I guess that is why he went the route he did. I told him I also have mutliple kinds of headaches...he said, we all do. Look, I even had a dr at a major hospital (Barnes) tell me that my only problem was migranes. This was after a top 10 neurosurgeon cracked my skull open and put in a shunt. This dr was basically trying to tell me, after looking at 1 page of my brought med records and 1 film of brain at the bery beginning, that I should have never had any surgery. This dr was like 83 and still in practice...so you know what I thought. He just has to much pride to admit that he has NO CLUE what he is looking at. Many drs have told me it looks like my brain suffered a major trauma and I should not be able to walk and talk, but I do. That is why the walking miracle comment was made by the top 10. I have literally had drs tell me...I was dying to I only had migrane issues and all the diagnosis by multiple other drs are all in my head....NOT LITERALLY...lol. This is just a mess. When you have the unknown and deal with highly trained drs, they often try to push you off with some BS answer to protect their practice. That leaves a patient very scared and confused. I often cry that my health neuro problems (which have been found to be chronic and terminal = me being on full disability) will not kill me, it will be the neglected healthcare for those issues. Thanks for your response and time.

[vicki595]

You're missing the middle part of your brain??  How can that be?   WOW!

Have you consulted a Pain Management Clinic in your area?  I think that would be your best bet. They are trained to treat folks with chronic pain issues.

Good luck!