Unbearable pain

[Raven]

Nick has been prescribed Neurontin for neuropathic pain in his feet. They also gave him Clonidine for his blood pressure. Ativan also for pain. He is not taking the Ativan because he doesn't want to have problems with addiction later on. He has been taking the Neurotin and it does not seem to ease the pain. Night time is worse. If the Neurontin dulls a bit the pain, it will sharpen in about an hour. He has told me he is now drinking because he thinks it will dull it a bit more. It is so hard to watch him as he wrestles with the pain but even if he wakes me, I prefer to be aware of what is going on.

The problem also is that he can't get a follow up with his doctor for some of the other dx until January. His neuro dr will be seeing him until two weeks also. Meantime, he is going crazy with the pain. His drinking doesn't help much either plus I can't seem to convince him that he is risking it by doing that. They also told him that there seem to be problems already with his liver. That it was swollen. The drink he is taking is of pure grain alcohol now. I am so concerned about all this and don't know what to think or do. I have never taken any pain meds so am not familiar with them excepting that they can be addicting. I don't think my pain has been as horrible as his is at this time.

Can anyone suggest anything for him as he has asked me to post this question for him. I, personally would be so grateful to any suggestions or help.

Would appreciate any feedback from Wise, SCI Nurse or David Berg too.

Thank you from this mom who is so concerned.

Raven


PS: Forgot to add that the nuerologist is keeping tabs on a bump that is on head, found after an MRI and CScan.

[jenny973]

I am an RN and any pain medication is adddictive. My husband is a T7-8 complete para new. He was prescribed neurontin but he will not take them because he has heard too may bad things about them. Robbie takes lortab 10mg 1 every 6 hours as needed. Some days he takes them and some days he doesn't. He drinks more now also. His injury was this last Sept. If he hurts then he needs pain medication just take them in moderation and only take them as prescribed. Try not to take them while drinking though. This new world is not fun for any of us but right now I just let my husband do what ever he wants and I just watch from the side. No one likes a nagging wife. Pain is only what a person can describe. Maybe flexeril might help? You can ask your Dr. it is a muscle relaxer and it is not a narcotic. I hope he gets to feeling better.

[teena]

Raven, I am not questioning his Dr.'s ability to diagnose at ALL, but did they rule out gout?

Tell Nick he's in my prayers...

Teena

[Tiger Racing]

I am an RN and any pain medication is adddictive.
Is that a fact? I haven't heard that Neurontin is addictive, not to mention that for people who suffer from chronic pain, addiction is the least of their worries. Pain uses up pain meds. If one is crippled by pain, refusing to medicate for fear of some life long addiction is just silly.

My husband is a T7-8 complete para new. He was prescribed neurontin but he will not take them because he has heard too may bad things about them.
I know a few people who suffered from side effects severe enough that they discontinued Neurontin. However, I also know quite a few people, my mother and myself included, who were greatly helped by this drug. I suggest that people educate themselves fully on all potential side effects and monitor themselves closely while giving it a try. If it helps, then fantastic, if it doesn't, then they can stop taking it.

This new world is not fun for any of us but right now I just let my husband do what ever he wants and I just watch from the side. No one likes a nagging wife. Pain is only what a person can describe.
It's great that you recognize that you can't truly judge your husband's pain, but personally, I count on my family to help me deal with all aspects of my life, including this one. Giving advice and counsel to one's spouse is important and doesn't have to equate to "nagging".

C.

[Lee555]

Raven there are other drugs that may help with the pain, like Elavil for nighttime relief. And Tiger is right, if you have severe pain that greatly disturbs your daily routine a person really needs to do something about it. It turns into a viscious cycle of escalating suffering and depression. My situation is so much less than most of the folks on this forum but if I didn't have the painkilling meds I would be a basket case. And if he is open to it, take him to the ER for administration of something more powerful. The possibility that when he feels what it's like to be without pain, that he'll be able to see a way through his pain. You might also mention that the booze might actually worsen his body pain. I would guess his drinking is more depression related, not body pain related.

[TMAZ]

Neuropain is hard to treat. Usually, I have found it is a combination of drugs that work the best for me. If he is on Neurontin maybe he can use Cymbalta with it or Xanax. They seem to have a good relationship together. It is playing chemistry with meds to get them right. Dont stop trying though.

[cvelusc]

Appears we have a lot in common. In the past I’ve had the same neuropathic pain, on an hourly basis, occurring anywhere below my knees. The pain was horrific and an equivalent for an AB person would be holding a flame from a lighter to their legs for 5 seconds, removing for 15 seconds, and then repeating for a significant amount of time (i.e., minutes, hours, and sometimes longer). I’ve been through quite a few drugs – from lyrica, baclofen, amitriptyline, effexor, mobic, trazodone, percocet, various OTC pain relievers – and nothing is as effective as marijuana. May not be a feasible option for Nick, but with marijuana I was able to cut out all of the preceding drugs. The only pill I take in the morning now is a multivitamin.

Depends on the person, but for me a very slight amount of the drug is all that’s required to turn the neuropathic pain into this fuzzy warm feeling. Kind of difficult to describe, but definitely better feeling than the neuropathic pain.

If he does decide to try marijuana, I have found that there’s an additive effect. That is the drug is more effective roughly a week after starting. So, if he does try marijuana and notices little improvement (or possibly increased pain) then my suggestion is to hang tight and give the drug about a week to settle into his system.

The legality of marijuana here in the States is by in large bogus. Some of the States have laws to protect medicinal marijuana patients, however, the federal government will still arrest and seize property of those prescribed patients under the auspice that marijuana is a Schedule 1 drug (i.e., same category as cocaine, heroine, etc) and deemed without medical use and extremely addictive. I’m not sure where you’re from, but I hope the climate is more conducive to helping him out with this apparently taboo (and useless?) drug.

--Christopher

P.S., I love hearing the argument of how marijuana makes people lazy. I find that hilarious considering that I took 5 graduate-level courses this semester and scored a 4.0. Suffice to say that I’ve found marijuana to be very effective this semester in quelling the pain.

[alan]

I hope you find something that helps. I'm still looking, as things keep getting worse and I get more miserable. I can't take this any more, but I don't know what I can do about it. The worse my pains get, especially in the upper back, combined with the popping scapulas, the less I'm able to use my arms. Breathing gets more difficult as abdominal pain keeps increasing (forget eating - that's been trouble since the pain started.)

[David Berg]

Raven, Neurontin is a front-line drug for neuropathic pain and is often combined with an anti-depressant like Elavil. The way I usually try to put it how either of these works as a pain-killer is that when you're dealing with neuropathic pain you want to calm the nervous system. Both those drugs are made for that. Treating neuro pain is very challenging and it can be trial and error to find what works best for any individual. BTW, what dose of Neurontin is he on? The max dose for neuro pain is often higher than when it's used for other purposes.

I also have not heard of Neurontin being addictive when used for pain. Even with narcotics, if they're used appropriately the chance of addiction is significantly lower. Also, keep in mind there's a bi difference between being dependent on a drug and being addicted. For example, a diabetic is dependant on insulin because he has a legitimate need for the drug. That doesn't mean there's an addiction. Someone in severe pain has a legitimate need and deserves to have that pain treated.

[Raven]

Thanks to everyone for your input and suggestions.

For those who may not be familiar with me, Nick is my caregiver and son. We don't know what has brought on this problem for the moment. The only thing we do know for a fact is that he began having problems with his legs and more so with the bottom of his feet. I posted on Care Forum and it was suggested that it might be plantar fascitiis. We thought it might be so but in the last month the pain began to hit him mainly around his toes and around the foot. It is so painful that he can not walk normatlly with both feet flat. He walks kind of on the sides of his feet. He also started to lose balance and the pain was more unbearable at night. He was hospitalized and went through several tests such as an MRI, CT Scan and bloodwork. the MRI was done on his head because he also has a bump on his head, close to his forehead. They want to have him check in again in two weeks for any differences. They released him after also giving him potassium through an IV and also something else because he was anemic and dehydrated.

After he was released last Friday, he was prescribed Ativan, Neurotin, folic acid, and cloniline. He aslo has to be back next month for update and is waiting on more answers on other results. He was also told he had a slight heart murmur and tachycardia. His nuerontin is Rx at 300mg every six hrs. His main complaint is that pain which is not letting him sleep or do much of anything. The effect of neurontin lasts him only about 1 hr or so. He is concerned because he also has been hired to be my caregiver and has to take his 5yr old to and from school each day in spite of how he might be dealing with the pain. He has read all your replies and waiting for anyone else who can give him more info or ideas what to do or how to deal with this all.

Your replies are greatly appreciated.

Thank you

Raven

PS to Teena: He said he was told it was not gout. Thank you for your input Teena and your good wishes. Love u

[teena]

PS to Teena: He said he was told it was not gout. Thank you for your input Teena and your good wishes. Love u

Hmmm...I just suggested that one because my Dad has gout and it affects his feet and toes...and ability to walk/move...when he has a flare-up.


GRRRR, pain!!!!

I love y'all too!

Teena

PS--I have a home remedy...(and I hope this makes Nick LAUGH OUT LOUD, cause he needs to...

**My home remedy is to have Isis teach Nick how to stand on his head...:D

[teena]

And as an added thought...NO the above comment was not meant to belittle or make light of Nick's pain...

(Just fyi) :D

Teena

[1010011010]

first id like to thank everyone for their input. i asked mom to post this question for me as i figured everyone here would certainly be more familiar with pain.
ive never been really sick from anything more serious than a cold and such so i guess i just ignored this when it started. id get this weird numbness around my lips and thumbs. out of nowhere i started getting this stabbing pain on the bottom of my feet so that i couldnt walk at all. i was trying advil, sitting them in warm water, or using ice on them. rubbing all kinds of things but nothing would stop the pain.
the only way i can describe this feeling is similair to when a body part falls asleep and the blood starts coming back. those sharp stabbing pain thats super sensitive to even a breeze. it doesnt feel numb at all. i get these weird jolts at random that make my whole body twitch. its gotten to the point where i cant sleep more than an hour or so without waking up.
this pain has me crying and i know i worry mom. most of all i dont want to scare Isis wiht my moaning and sobs. Im getting tired of hearing myself whine about this daily.
i know getting smashed on alcohol is not going to help and will probably only make it worse. the nuerontin seems to dull it the littlest bit, but sometimes i wonder if im just suggesting that to myself? i got my rx for the Ativan today
but its a 7 day supply. i figure if im going to have to wait until next month for a follow up, id better stretch those pills out.
my visit to the hospital sucked and i believe made me weaker that first day after being discharged. the Dr told me my muscles had a little atrophy yet they had me lying around all day. they had a cna sitting with me at all times and another patient i shared my room with, since we were on 'fall precaution' or something.i asked if i could be escorted outside and walk around a little bit and was told no. if i did, the cna would have to go with me and thered be no one to watch my neighbor. im not sure how im supposed to build any muscle back on my legs if i cant even get up...
this pain is driving me crazy. when i lie down, sit, stand, anytime its there. im completely unfamiiliar with anything like this , thus why i had mom ask here.
again thanks to everhyone for their suggestions and input. sorry this reply was kinda long.

[SoFla]

Many of us here feel your pain, on a daily basis. There are times I feel as if my toes are caught in a vise-grip. Neurontin will help with the weird jolts, or some other drug can address them. You are still on a low dose. What you really need is a diagnosis. I know how frustrating that can be. I went without one for years. But you are on the right track, and should know the cause soon. Best of luck!

[1010011010]

forgot to mention a couple other things. i have a feeling old party days probably screwed up my nerves too. i started using Ephedrine when i was 18 and working 18+ hours at an assembly plant. mom warned me about that but of course i didn't listen. i really have a feeling that messed with me. i was taking atleast 3 bottles of 60 pills a week for atleast 8 years. each pill containing 25mg of ephedrine hci.
i also noticed that ive ground two teeth on the right side down during the night. i assume because of the pain? since this hasnt happened before. just wanted to add that in also.
the Dr dxed me with Folic Acid deficiency. the papers they gave me said i also had parasthesia, nueropathy and microcytic anemia? im taking 1Gm of folic acid daily so hopefully it will help with time along with the nueronten. i do want to know why is it that i shouldnt stop taking the nueronten w/o weaning myself off? what will happen exactly?

this feeling i get also extends to my legs too. sometimes i wake (usually mornings) and feel like my legs arent
there. moving them requires a little more effort. they
feel heavy and this is really worrying me. when i stand first thing upon waking up i feel like i can barely hold my own weight on my legs.

the alcohol i had started to consume is alot and i
know and accept that its not going to help at all. i am drinking 190 proof/95% alcohol (everclear). approximately 20-30 oz aday, spread out throughout the day diluted in koolaid or something.

ive gone days without the booze but it's still there. ive
also tried mota too and while it does take away the pain, theres the brain fogginess i get. it kinda freaks me out
and im not really used to anything like that. its acceptance or debate on its use is another topic and i wont say whether or not my mom agrees to my trying it or not. i was raised to see things like drinking and such as vices. i dont want this recent condition i've run into as a reason for me to do things like this, however i feel like its driving me crazy and desperate. i really just dont know what to do anymore.

again i want to emphasize my appreciation to everyone who has put in some input for me. i am not sci'd and i can never understand anyones pain here but i come to you with the utmost humility and ask for your advice knowing you all here have more knowledge and experience than i do.

[SoFla]

Get a bite guard for your teeth and put an end to the booze -- NOW. Nobody enjoys a cocktail more than me, but the amount you are drinking could be the root of your trouble. I have a friend with your symptoms. She had every scan imaginable last year, with no clear diagnosis. She was finally told it was most likely alcohol related. She is showing signs of alcohol dementia, an irreversable condition. Your doctor did not give you a reason for parasthesia and neuropathy. You very well may be in the same boat. End the booze!

[David Berg]

Raven,

So he's only on 1200mg/day of Neurontin? How long has he been on it? You have to ramp up to the higher doses, but at a dose that low I wouldn't expect it to do anything for pain unless it's an unusual individual. Usually they say 3600 is max, but I know of some people (and this is a very individual thing who needs or can tolerate really high doses), but a number of people take 3600-4800, and I've heard of 9600 per day.

[Raven]

Thank you Teena for your words. Also want to thank you SoFla for your advice to Nick. He tried to stop after he was released from the hospital but the pain got to be too much for him. He has read your words and realizes that what you all are saying is right but we both feel so lost with this problem. I am sure there is no way I can fully comprehend what he is going through at this time, I only watch and hurt inside for my son. I do however appreciate all the suggestions, advice and replies that have been given to him from the bottom of my heart. I knew that this site has the best people to give him all that you have given him so far. May God bless and repay you all for everything.

David, I wish that they would also have taken more tests of the rest of his body. I noticed a bump on his leg and another on his back that worries me and makes me wonder what they might be. Somehow, I believe that they did not take more care of other parts of his body to see if there might be anything else that might be causing this pain. But to many doctors(Wise not included). we don't know anything so they at times ignore our words. I also believe he does have a bit of scoliosis on his spine because I noticed a bit of difference in the height of his shoulders. As to the med, he says he is afraid of taking Ativan and if it might become a problem later on. To us, dependency and addiction is almost the same as we have seen the problems within some of our family members previously. I, myself don't take any pain killers with the exception of Tylenol and that is only the amount my physician has told me my body can tolerate which is two 500mg a day. He worries me so much since I see him using alcohol as a means of helping to deal with the pain. We have talked a lot about the problems it brings too plus the other drugs he has mentioned before of taking. The only thing now is that this pain I cannot but be aware that is so terrible for him. I think I have learned to cope with physical pain since my sensations are not as sharp as his and therefore, I can not completely emphatize with him. I don't know what to suggest or tell him anymore since I feel so confused and at a loss for answers to all this. Have told him to contact his doctor at General Hospital but he feels that they are only blaming the drinking to what he is going through. I don't know what else to say or do now.

Please forgive my long post and I do appreciate everyone's support and replies here.

Raven

[firesmurf]

so very sorry for what you are both having to deal with.believe me,i have been on both ends of the spectrum here with my SCI and my son having to undergo liver failure and transplant and then suffer a severe brain injury on top of it.PLEASE stop with the alcohol,honestly,if you are already showing a "swollen' liver and also drinking everclear on top of it,oh honey,you will end up with way more problems here than worrying about any level of addiction.if you are also taking any tylenol based meds and the benzo too,you simply cannot drink anymore.are you seeing a good pain management doc?believe me.they have many many different modalities to try and manage even the worst of the sorst types of pain.this is really where you need to be.

you are actually at a pretty low dose of neurontin.i was at 3200 when i started with gabitril,another anti siezure med.you have a long way to go yet and could go much higher than you are.there is no real chance of addiction with the anti S type meds.i have never ever heard of anyone becomming addicted to them.they are not like narcotics at all.speaking of the narcotics.in some cases,long acting(like oxycontin) meds can help to some degree with certain levels of neuro pain.it is never "never" that they don;t give some relief.a chronic pain patient taking any narcotic,espescially the longer acting since you do not 'feel' the euphoria you normally would get from a short acting full release med,only has about a 3% overall chance of real addiction developing vs the much higher rate in the rest of the popultaion.the key here is monitoring,guidance and direction that can be found thru any good pain management clinic.they hold you accountable.i like that part.it lessens the risk of developing addiction simply becasue you ARE accountableto the pain doc.but they can just offer you sooo many different modalities to try and manage even the worst of the worst types of pain.this is what they do,every single day,manage bad chronic pain.this is really where you need to be.

i am just REALLY concerned about the alcohol hon.trust me, you do NOT want to end up with liver problems now.it is an ugly horrid experience that i would not wish on anyone.we went thru absolute living hell watching our son die a little bit each day til he got 'sick enough' to qualify for that life saving liver transplant.the alcohol HAS GOT TO GO.period.espescially with what it is you are drinking and the fact you already are showing signs of a swollen liver.you just have to.if you think the alcohol has a much stronger hold on you than you can manage,get some help with it,for your own sake.but it just cannot be part of actual pain management,it can't.i can guarentee you it will come back to haunt you.you also really do need to go in and have your liver labs run just to see how things are going with it.there is one thing about the liver that no other organ in our bodies has the ability to do,and that is actually regenerate itself from certain levels of damage.if you stop now,the chances of any damage(depending on severity and just where that damage is actually located)righting itself with healthy tissue again are pretty good,but once you go beyond a certain point,it will not do this for you anymore.it just cannot go on like this anymore hon or things will become much much worse for you than they are now.it just comes with the territory.i think you are using this to help you cope with alot of different things.seeing a good therepist can do wonders for your outlook and help you to manage all that you are dealing with without the use of a mind "numbing' drug like alcohol.my therepist really helped me to get things into perspective and deal the right way with all that i had on my plate.this is a much better solution,really.the thing about both alcohol and the neurontin,they both tend to actually work on the very same areas of the brain.you could be defeating the neurontin with the alcohol,you know what i mean?these both work on the cerebellum.i know for certain that lyrica works on this so i am pretty sure that neurontin does too.your just not doing yourself any favors here with this added 'pain" med you are consuming.alcohol is just NOT a good way to try and manage pain and can lead you down a very very bad road you do not want to go down,believe me.its a very scarey one.i grew up with an alcoholic father and sister and things were not good in our home,trust me.watching what my son went thru was just hidious.he was only 12 and was found to be in 'suprise" liver failure when he just vomited up blood at school one day out of the blue.he had just had a 'full' sports physical too and somehow the stupid PA totally missed an enlarged liver and spleen?hello??it was an ugly experience that was casued by a mutated polycystic kidney disease gene.didn't know we had it and didn;t have a clue he was even sick til he was actually down to only 20% of liver function left.unbelievable.it just shows you how well the human body can compenate but only to a point,then the shit hits the fan in a very big way.you DO NOT want this.and you do deserve better.

i don't mean to sit here and freak you out but honey.you will end up there if that alcohol consumption continues,espescially when you are also taking other meds.there are just soo many much better ways to handle your pain and whats in your head,ya know?getting into a good PM clinic where they will be able to better identify ways of managing YOUR particular pain processes would be ideal for you.what you are doing now is just very self destructive.it will not work.something has to give here at some point and things can get worse,that is all i am trying to tell you.i wish you luck with this in finding better ways to try and live with the hell you have unfortunetly been given.it does suck,and it is not fair,but this is what we are for some reason having to live with.but there are just so many better ways than what you are doing right now.getting into that PM would be the best thing to do.they also have referrals for therepists who understand what its like to live with chronic pain.these are the best types of therepists for us to talk to.they understand just what it is we deal with every day.very different than other outside of PM therepists.just give PM a good try and please,for your own sake and your familys,stop the alcohol while it still is possible for you.if you cannot do it alone,get some help with it.it is out there all you have to do is ask.you just don't want to go down that road,trust me.i do hope things will get better for you soon.please keep us posted,K?Marcia

[David Berg]

Raven, if you're going to be on a NSAID for the long-term, I'd really encourage you to pick something other than Tylenol. Of all of them, I've heard the worst about that one for long-term use. There's others here who can better detail the problems that can cause, but you're better off with Motrin, Advil, or something else.

[JerseyGirl]

The best one I've found is Aleve/Naproxen. That's what I take and out of all of them, seems to really help. Hope your friend Nick gets to feeling better!

[Raven]

Raven, if you're going to be on a NSAID for the long-term, I'd really encourage you to pick something other than Tylenol. Of all of them, I've heard the worst about that one for long-term use. There's others here who can better detail the problems that can cause, but you're better off with Motrin, Advil, or something else.

David, I don't take Tylenol unless it is something bad that I can't tolerate. Most of the time, I just try to ignore the pains I get.since it doesn't seem to be that bad. Just occassional headaches or body aches due to colds or part of the Hep C Virus. My hepatologist said that Tylenol is the only one my liver can tolerate due to the damage it has already. He told me that the others are way too strong for me to use. Will continue to bear with my pain without any other meds if possible. Thanks for pointing this out to me, I do appreciate it too.

Nick has also just told me that he is going to attempt to not drink at all this week end. He would like to have you all to wish him luck. I tell him to take one day at a time.

Thank you firesmurf, I really think you do understand my feelings as to all this that is happening to us here. It does seem like my sister says, "if it were not for bad luck, you would not have luck" or "if it doesn't rain on you, it hails on you". I want to tell you that Nick did read your reply and paid really close attention to it. Also, I hope things for you and yours go well after all you have been through yourselves. God keep you safe and in good health always.

One thing, I would surely like to find out what or where this pain is coming from or even why. He was just telling me that he thinks his previous gf probably hexed us because he just also broke his glasses. LOL

We will keep posting and reading here for any more replies from all of you beautiful people.

Raven (Lenore)

[teena]

Raven, I wish y'all lived up here...at least my cousin who owns an optical shop could fix the glasses...LOL...

This whole saga of your lives reminds me of what someone said...

"Some days you are the windshield, some days you are the bug"

sighhhhhhh...

I'm PMing Nick...so tell him to keep his eyes peeled...:)

Take care and God bless!

Teena

[metronycguy]

Raven, if you're going to be on a NSAID for the long-term, I'd really encourage you to pick something other than Tylenol. Of all of them, I've heard the worst about that one for long-term use. There's others here who can better detail the problems that can cause, but you're better off with Motrin, Advil, or something else.
i take mobic, i think it is like a cox2 but safer, i also dont bleed much after a surgery with it,they all suck.
celeberex and vioxx got pullled they worked very well, but the heart thing could ruin your day

[quadvet]

Nick has also just told me that he is going to attempt to not drink at all this week end. He would like to have you all to wish him luck. I tell him to take one day at a time.

Raven (Lenore) Best, Nick. When you feel weak, reread the previous posts. Ditto from me x10. Keep us posted.

[1010011010]

have gone from friday completely dry. its been tempting but im sticking with my meds. last night i finally too the ativan 1mg. an hour later i took my next dose of neuronten. after a while i was real calm and fell asleep for atleast 3 hrs. when i awoke the pain was all there again. i took another ativan and went to bed. after lyin there a while i fell asleep again another 4 hrs. so it
would seem that ativan brings me some short relief. i dont know if the dose is
too small or what not but ill find out.
also have decided to go back to another hospital. kinda like a second opinion. my neighbor is coming today and i hope to make some arrangements with her
about taking isis to school and picking her up after school. this way isis' mom won't start complaining about having to drive across the city to take isis to
school, and jumping at this as an opportunity to have Isis in school over by
Isis' moms house. one less stress off my back.
thanks again to all of you. i can see why my mom can spend hours on these
forums with you all :D

[firesmurf]

tell nick i am VERY proud of him and he is doing the right thing for himself.i think at this point he is just having ALOT to deal with and the alcohol just helps make alot of that "go away'?alcohol,unfortunetly is like that.but reality will hit and you just cannot keep yourself in a stupor your whole life ya know?i really am pulling for him and hopefully he will be okay.i just have one concern for him right now with stopping?if he has been drinking every single day,espescially if it is everclear,he could have some WDs from it.it is just like any other drug that you are on for a long period of time that your body can become dependant on too,mostly because of the action on the brain it has.just make sure you keep a close eye on him,K?

is he currently IN pain management?if not,this really should be his next step.these are just people who treat bad pain every single day,thats all they do and some are really amazing at it.there are different things he can try to manage his pain to the point where he could be able to get back some of what he has had to give up.it is always worth a good try ya know?he also really needs a solid dx of where this is actually coming from.just what tests has he had run on him and what types of docs has he actually seen so far?tell nick i am pulling for him and he is bigger than this and can do just fine without the numbing of the alcohol to cope.there ARE much better and safer ways.tho it may be hard for awhile,he IS doing the best possible thing for himself,trust me.please let us know how he is doing,K?hang in there mom.Marcia

[quadvet]

Good job so far, Nick, stick to it. Recommend you heed the wise words of Firesmurf. I hope the Ativan gives you enough relief to get some sleep tonight. You too Raven, hang in there.


ETA: Nick, translate your signature for me will you please, thanks.

[firesmurf]

How are things going nick?good or at least a bit better i hope?when i posted the post above here,we must have actually been posting at the very same time as it was not there when i started writing but was when i got done.go figure.thats why it probably didn't make sense.i am wondering about your blood pressure?whats up with that?i just quickly ran thru the very first post here and saw you were taking clonidine for your 'blood pressure" just wondering what that is about?how old are you and what have your BPs been like?

just wanted to touch base hon and see how things are going.please let us know when you can,K?hang in there nick.Marcia

[Raven]

Nick has been planning to go to the hospital on Wednesday. He is doing his best to deal with this pain and tomorrow we will be trying out for how we will be having Isis taken to and from school so he can find if he can rely on his friend. We will be also trying to see if one of my nephews will take both of us to the hospital so I can be there to speak with his doctors. I want to be informed as to what they find out and how we can tackle whatever it is that needs to be addressed. I have spoken to him and asked him not to keep anything back from his doctor and to advocate for himself so he can get the help he needs. The problem we have also been encountering is the ride to and from the hospitals or doctors since he can't help me to get on his Explorer. Hopefully, my nephew and sister will be able to be transporting us on that day.

Firesmurf, Nick is only 28 yrs old and we know his BP should not be so high so we also need to find out why it is doing this. I have tried my best not to stress him out so it won't go up. I don't recall how high it was on the day he first went to the er but it was pretty high. They were concerned about it and were addressing it at the time with monitoring too. Thank you all for your good wishes, concern and care.

If Nick doesn't post or reply after this, I will do my best to keep you all updated on what transpires.

Raven

[quadvet]

We will be also trying to see if one of my nephews will take both of us to the hospital so I can be there to speak with his doctors. I want to be informed as to what they find out and how we can tackle whatever it is that needs to be addressed. I have spoken to him and asked him not to keep anything back from his doctor and to advocate for himself so he can get the help he needs.Because you cannot risk the bolded not happening, he needs you to be there, JMO.

I hope you can make it. I rode across town in the back of a Toyota pickup to make it to an appt..but it was summer.

All the best, keep us posted.


.

[dan_nc]

have gone from friday completely dry. its been tempting but im sticking with my meds. last night i finally too the ativan 1mg. an hour later i took my next dose of neuronten. after a while i was real calm and fell asleep for atleast 3 hrs. when i awoke the pain was all there again. i took another ativan and went to bed. after lyin there a while i fell asleep again another 4 hrs. so it
would seem that ativan brings me some short relief. i dont know if the dose is
too small or what not but ill find out.

Ativan has a relatively short serum half life, so it's not unexpected that it would only last about 4 hrs. When I take ativan, I usually take one, go to sleep and wake up 3-4 hrs later and take another one.

[firesmurf]

sounds like you got a plan there,and that helps.i definitely DO really strongly feel like you do,he needs to advocate for himself,BUT he also needs to always have another person along with him at these appts so you DO stay in the loop.i always have my hubby or my mom with me for my more important/bad appts as i do not always hear everything that the docs say,ya know?it does help alot.i am glad he is taking some initiative here tho,this is something he will just have to be doing for himself for like ever.there could be a few different reasons for his higher than the norm BPs some are just pain and others can be a bit more invloved too.how are his kidney functions.kidney problems can also cause higher than norm BPs as well as possible sympathetic nervous/para symp involvement of some level.just a few possibilities.the adrenal gland that kind of sits on top of the kidney could also be a possible cause.there are just too many possible reasons that a kid his age could have high BP.this could just be a part of whatever is actually causing all this to begin with too.but they DO most definitely need to find out whats causing this in him since high BPs can cause a host of other issues in him eventually.

just had a thought for you here and it would be worth checking into at this point.i would make some calls to your local transportaion services type places/programs?the ones for people with disablitiys?i know around here in MN they are called DARTS?they pick people up and drop them off for doc appts and other places that people need to go to.i would contact your county social services programs and set him up with some sort of social worker who would be a big help in his life in making certain he is able to take full advantage of any possible programs availiable to the disabled.its always worth a shot.trust me raven,there are many different programs availiable in most countys for people in nicks situation,its just a matter of tapping into the right resources,ya know?i would start with a call to your countys social services network and see where thattakes you.if he happens to be on SSI,this would be a huge thing that could help alot in him getting many different services that are just there.its worth the time and effort to at least check these out.also,always ask when you are making appts to certain types of hospital or specialist appts if they provide their own transportation service.i found out that the place where i have been getting all my MRIs(spinal) and ultrasounds for my kidneys and liver on a regular basis for the past eight years actually does provide free cab rides.been going there for years and always having to ask people to drive me.it wasn't til my last MRI i needed about a month ago when i mentioned i was having trouble finding a ride there that they actually divulged the fact that they have their very own cab service availiable free of charge.shocked the heck outta me since i had been going there for many years and no one ever told me this was even availiable.would have been nice to know that like back in 01?hello?just another possibility to check into,you wont know til you ask ya know?just some helpful hints that could lighten your load.

i do hope things go well at the appt and they can do something good for him.by the way,who is ISIS?please keep us posted,K?if possible,ask this new doc or whoever you are seeing for a possible referral to a good pain management clinic,i really do think nick would really benefit from their more experienced knowledge in treating his types of pain.he also desperately needs a real proper Dx of his condition.what types of real testing have they done on him thus far?what were any significant results?

i just also wanted to mention something to you that i HAD to start doing with my son when he went into liver failure years ago?start obtaining ALL and i mean every little test result and hosp reports and doc clinic notes from anyone who has ever laid hands on him and then keep it all in some sort of an expandable type folder?this helped me SOOO much when we had to go to an ER again for something or just taking it with us whenever he had an appt?all you do is grab that folder and go,wherever.it has everything the docs would need right there,saves a ton of time when in a crisis and also,i have found that when seeing new specialists,some people who were supposed to forward all my records or the latest test results failed to do their jobs for me and there we would have sat,without whatever we really needed.having my own set of my records with me always,i could just reach into MY records and pull out whatever it was and have them make a copy of mine.but never ever give up any of your own records to anyone,always have them make a copy of yours.this one thing,just constantly obtaining and updating all your own records saves alot of time and hassle for you.i cannot even count the number of times that just having my own records with me for me or my son really saved our butts from something.its just a good idea when you have an ongoing condition,espescially when it keeps changing on you.you always have the latest stuff with you.

hope things go well on wed.please keep us posted.Marcia

[firesmurf]

was hoping to see some kind of update after weds appt.how did things go?hows nick doing with the drinking?you two have really been on my mind.i do hope something positive came out of that appt.let us know when you can ,K?marcia

[metronycguy]

drinking gos bad but drinking also reduces pain. it is a definitely workable painkiller, drinking also gives a big kick to other pain meds in the body, sometimes too big a kick and will cause death.
the Bowery bums(Bowery is now a millionaires row) were not kidding when they needed a drink they were in extreme pain, since drinking an diabetes tend to go hand in hand , the stinging pain if th extremities, the toes s is relieved by drinking

[Raven]

Nick saw the doctor in ER yesterday. Sorry I didn't update but we were tired and trying to deal with so many things on the same day.

Thank all so very much for caring and trying to help us. You all have been of great comfort to us during this hard time and I pray that God blesses each and everyone of you for it.

I decided to get some more information on his Dx on the care forum, so I posted a new thread there. If you would like to follow up on it the link is .. http://sci.rutgers.edu/forum/showthread.php?p=771226#post771226

Again, thank you all for everything. Hope we may be of some help to you all if (hopefully you won't) you need our support or help too.

(((((Hugs & xxxxxxx))))

Raven

[firesmurf]

wow.i didn't realize that you could even get neuropathy from just alcohol.how long(years)has he been drinking?(i did read that other post).he has to stop at this point or things will become much worse for him.it is crucial.is he perhaps also suffering from some level of depression as well?getting him into see a good therepist to help dump the crap he is feeling really would also help tons.i HAD to see one as there were just way too many things with me and my son that were so completely out of my hands to even begin to try and control,i felt absolutely helpless.god its a horrible feeling.i am sure you know how that is raven.does this situation appear to be alcoholism to you?i know there are places on the net where you can take that ten question test that can give you an idea of just what the chances are that this IS a very real problem that needs intervention by someone more familiar with alcohol treatment.if there is a problem there it does need some intervention before other things start happening that would be much worse than what he is dealing with right now.if there is one thing i have learned since the day our son got sick in 99,just when you think things couldn't possibly become any worse than they already are,it can and it does.he just simply cannot drink anymore period.he is feeling the efects of this in a very profund way already ya know?if he stops right now,there could be some lessening of the pain and it would most definitely slow the progression of what he is currently dealing with and making it worse and more painful(and could help reverese the already present damage to his liver as well.the liver is much more forgiving than any other organ.but that depends on extent of present damage too). unfortunetly raven all you can do is give information,guidance,direction and all the love in the world to him,the rest is up to him.i wish you both the best of luck with this.please continue to keep us all posted on how things are going,believe me i do care about you two.Marcia