Suffering!

Comment by silverwolf 1 hour ago
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I have been suffering from TN for 35 years now, and have had nerve blocks, been prescribed methadone, tegretol, baclofen, demerol, oxycodone, and a slew of other narcotics, and controlled substances. The only thing that stopped the pain immediately was stadol which no dr. will prescribe any longer. I am guessing because too many people were developing an addiction to it. I never did, all I know is it stopped the pain in it's tracks. It would knock me out for a short time but that is really all you can do for TN. I had MVD in 2007, and was told by my neurosurgeons that this procedure would allow me to be pain free for 10-12 years but 2 years later, I was having attacks again! There is no cure or medication for me anyway that will give me any type of relief, except the stadol or methadone. I cannot seem to get any dr. to understand that all I need now is pain management. No more procedures, or meds that do not work but keep me doped up! I will be 50 years old this year, and I just need something that when the attack hits, to knock me out!.. I was on the treadmill the other day, which triggered a nasty attack that lasted about an hour! I am not a drug addict but I feel that is how these doctors look at me.. I just need something to stop the pain, which is something to put me out into a deep sleep so I do not have to suffer! I awoke the other night at 2:30am with a hideous attack, so bad, I was disoriented, and walking into walls trying to get to my xanax, oxycodone and my frozen rag from the fridge! I am so tired, and weary of the pain, I don't know what to do! It has been so bad at times I have considered suicide because I can't seem to get any help! but that scares me even more than the pain!.. Thank you for listening..


Omg that is a long time to suffer *hugs* must be hard being judged alot. The only thing that stops my pain just like that is tramadol..i was on and off it for some years but my bestt friend and some family told me i look like im on crack..it hurt my feelings big time. While i had relief all people could say was 'oh my god seriously you are so skinny and you never sleep and you really look like a drug addict'. When i told them i dont care how i look this is the ONLY thing that fully removes my pain they would say annoying things like, 'what about if you take 1000mg of paracetamol and ibuprofen -_-...oh please come on!!

Although i have only had this tn or trigeminal neuropathy thing for ten years i do know where you are coming from..sometimes i just dont want to take any tegretol as i know i cant take tramadol at the same time..though i did stupidy try..no effect but headache. I feel like i want to come off these meds which fry my brain and just take the tramadol as and when i need it. I would not sleep and then rest at weird times, i felt like i was in a warm bubble and tho i looked doped as hell i did not feel weak. Sometimes i dont know whats the lesser of two evils..tegretol helps but not all my pain is gone and i feel like a stupid idiot on these meds, its like being locked in a cage and having your brain outside of it .

I just feel so bad for you that it has gotten to this point :(. Do you ever consider that the meds worsen your pain though? I was so angry with my mom but she took my meds and refused to give me them and said i look like an addict. I sincerely didnt feel i was and i still donmt..i was just dosing in accorance to pain and did not crave the tramadol, i just took it when my pain hit. When i stopped the pain was even worse, and i was crying and begging telling my mom i hated her and to just give me pin relief. but after a week or more the pain subsided a bit for a while. It made me wonder if my brain got so used to those painkillers that taking them away made my body angry. I do know that those things apply with methadone but i think tramadol and oramorph are the strongest things ive tried.

sorry if im rambling hun im a bit out there today on my meds...anyway i hope the pain clinic cn sort you with some new meds or at least ANSWERS..they are quick to hand out strong meds then stop them just like that..its not fair and dangerous..hope u get relief soon xxx

Silverwolf,
I wish I knew the answer that would help…that’s the frustrating part, so many of us are suffering and trying anything we can to find relief .
You have suffered a really long time.
What do your doctors/specialists say? Do you have TN1 or TN2? I know there’s many more med options now alone and in combination that people are having success with then there were even 10 yrs ago when I was diagnosed.
I don’t know, Im reaching, any chance you’re up to seeing someone new, with a new perspective?
I don’t even think they make stadol in North America anymore…?
In any event, I’m thinking of you and will pray that you find renewed strength to demand help for your pain and that someone actually listens and helps you.
(( hugs)) Mimi

Silverwolf, re. the Dr Attending form. click, save as, open and print :)

I agree with Mimi. What does your neurologist say? They can try a combo of meds now to try to relieve you. And you could possibly try MVD again. Maybe the original doc missed something or maybe another vessel got on your nerve. Best of luck to you!

Oh sweetie, I’m so sorry. I do not know what to tell you other than you are such a strong person for having this so long. Have you thought about a referral to see a pain managment doctor? Maybe you would be able to get some relief with them? Something you also might want to consider is Botox, or maybe a nerve injection. These might bring you a little relief. Some find that along with their medications having acupuncture done helps bring down the pain so the medications work better. I really wish I could tell what is the magic thing to do to take the pain away, but I don’t know what that might be. I hope you are able to find some relief soon and a big huge to you.

I totally understand how you feel. I have been on every drug and nothing works for me as far as pain management, but the meds did make me a zombie that couldn’t function so I refused to take any. When I get my spells all I want is to be knocked out too. The only thing I can do is take melatonin and hope it knocks me out! Surgery isn’t an option for me because I also had Bell’s palsy and that there is a chance I might lose facial paralysis and make things worse. The best medicine is talking with others who understand. Be strong! Hang in there and remember to live the days that are good.

I have taken just about everything there is to take, and also had the MVD in 2007 which only gave me relief for about two years. At this point I just need pain management. The only thing that ever stopped the attacks in it's tracks was Stadol, and it's very difficult to get a dr to prescribe this.. That is why I am going to try a pain clinic as a last resort because my own family dr will only prescribe oxycodone, demerol or tramadol which none of these work at all!!! Thank you for sharing and caring. I appreciate it. Take care~~~

Mangamel said:

Omg that is a long time to suffer *hugs* must be hard being judged alot. The only thing that stops my pain just like that is tramadol..i was on and off it for some years but my bestt friend and some family told me i look like im on crack..it hurt my feelings big time. While i had relief all people could say was 'oh my god seriously you are so skinny and you never sleep and you really look like a drug addict'. When i told them i dont care how i look this is the ONLY thing that fully removes my pain they would say annoying things like, 'what about if you take 1000mg of paracetamol and ibuprofen -_-...oh please come on!!

Although i have only had this tn or trigeminal neuropathy thing for ten years i do know where you are coming from..sometimes i just dont want to take any tegretol as i know i cant take tramadol at the same time..though i did stupidy try..no effect but headache. I feel like i want to come off these meds which fry my brain and just take the tramadol as and when i need it. I would not sleep and then rest at weird times, i felt like i was in a warm bubble and tho i looked doped as hell i did not feel weak. Sometimes i dont know whats the lesser of two evils..tegretol helps but not all my pain is gone and i feel like a stupid idiot on these meds, its like being locked in a cage and having your brain outside of it .

I just feel so bad for you that it has gotten to this point :(. Do you ever consider that the meds worsen your pain though? I was so angry with my mom but she took my meds and refused to give me them and said i look like an addict. I sincerely didnt feel i was and i still donmt..i was just dosing in accorance to pain and did not crave the tramadol, i just took it when my pain hit. When i stopped the pain was even worse, and i was crying and begging telling my mom i hated her and to just give me pin relief. but after a week or more the pain subsided a bit for a while. It made me wonder if my brain got so used to those painkillers that taking them away made my body angry. I do know that those things apply with methadone but i think tramadol and oramorph are the strongest things ive tried.

sorry if im rambling hun im a bit out there today on my meds...anyway i hope the pain clinic cn sort you with some new meds or at least ANSWERS..they are quick to hand out strong meds then stop them just like that..its not fair and dangerous..hope u get relief soon xxx

I used to go to the ER for IVs of all kinds of doping medicines for the really bad attacks, but the waits were terrible and I would wake the next morning in the same pain as before, somehow no better.....finally it struck me that I could, with my neurologist's permission, simply take valium and benadryl and drug myself to sleep, which I am able to do now, and often this will do a much better 'reset', than if I were to have been more heavily medicated in the ER.

Just something to run by your doc and maybe try, see if that combo is possibly strong enough to work for you. My strategy is to always try to weakest combo first.

Lily

Silverwolf,
I used to take the Stadol in a nasal spray form. Here in the US (I don’t know where you’re from) Stadol NS is no longer available. That was the brand name. What you can get now, which is the generic version, is Butorphanol Nasal Spray. For me, it worked exactly the same as regular Stadol and helped a lot more than Percocet or Vicodin at times. I was able to get it from my PCP, then the neurologist, then finally the pain management doctor I was referred to. (This was not from all 3 Drs at the same time. My point is each one was willing to prescribe it at the time. They used to even be able to call it in to the pharmacy, unlike Percocet and other opiates.) My current neurologist did not like prescribing it, so he would prescribe Dilaudid as necessary. Now, if you are talking about using it in an injectable form at home, I have no idea what the policies are or if it still exists in IV or IM form. I didn’t know if this would shed some light on this or if you already knew that. I figured I’d give it a shot just in case. I hope you find relief soon.

Does Toradol help with TN pain? It’s a very strong NSAID for those who haven’t heard of it. It’s one of the first things they try to give you in the ER if you are there for a headache that is non-traumatic, besides for other pain like kidney stones and gallbladder attacks. I used to be able to give myself IM injections of Toradol at home back when I only had chronic migraines. It was my last resort before going to the ER. I then became deathly allergic and had to stop using it. This was before TN joined the party in my head. Just wondering if it’s an option at all for TN sufferes.



ihold said:

Does Toradol help with TN pain? It's a very strong NSAID for those who haven't heard of it. It's one of the first things they try to give you in the ER if you are there for a headache that is non-traumatic, besides for other pain like kidney stones and gallbladder attacks. I used to be able to give myself IM injections of Toradol at home back when I only had chronic migraines. It was my last resort before going to the ER. I then became deathly allergic and had to stop using it. This was before TN joined the party in my head. Just wondering if it's an option at all for TN sufferes.

I CALED MY PHARMACY THE OTHER DAY, AND ASKED IF STADOL WAS STILL PRESCRIBED AND THEY TOLD ME THAT IS WAS SO I NEED TO GET TO A PAIN CLINIC TO TRY AND GET SOME RELIEF. JUST TO BE KNOCKED OUT IS ENOUGH DUE TO THE INTENSITY, AND HOW INCAPACITATING THE PAIN IS!!! THANKS FOR THE INFO..

ihold said:

Silverwolf,
I used to take the Stadol in a nasal spray form. Here in the US (I don't know where you're from) Stadol NS is no longer available. That was the brand name. What you can get now, which is the generic version, is Butorphanol Nasal Spray. For me, it worked exactly the same as regular Stadol and helped a lot more than Percocet or Vicodin at times. I was able to get it from my PCP, then the neurologist, then finally the pain management doctor I was referred to. (This was not from all 3 Drs at the same time. My point is each one was willing to prescribe it at the time. They used to even be able to call it in to the pharmacy, unlike Percocet and other opiates.) My current neurologist did not like prescribing it, so he would prescribe Dilaudid as necessary. Now, if you are talking about using it in an injectable form at home, I have no idea what the policies are or if it still exists in IV or IM form. I didn't know if this would shed some light on this or if you already knew that. I figured I'd give it a shot just in case. I hope you find relief soon.

I AM CURRENTLY TAKING XANAX AND OXYCODONE, WHICH DON'T DO MUCH! THEY DON'T EVEN KNOCK ME OUT COMPLETELY SO I AM STILL LEFT TO SUFFER!!!

Lily said:

I used to go to the ER for IVs of all kinds of doping medicines for the really bad attacks, but the waits were terrible and I would wake the next morning in the same pain as before, somehow no better.....finally it struck me that I could, with my neurologist's permission, simply take valium and benadryl and drug myself to sleep, which I am able to do now, and often this will do a much better 'reset', than if I were to have been more heavily medicated in the ER.

Just something to run by your doc and maybe try, see if that combo is possibly strong enough to work for you. My strategy is to always try to weakest combo first.

Lily

Hi Silverwolf,
I hope your pain was a little bit better yesterday and will be easier to manage tomorrow. I saw your going to be going for a pain managment. Which is a really good idea for you. I don’t know about the rest of the country of where your at but finding a good pain managment doctor sometimes can take some work. I found this link that I thought might be helpful for you, it is a list of what you will need. Beware also that the really good pain managment doctors will only take patients by referral by another doctor, and there may also be a review on your medical condition for acceptance as a patient as pain managment treatment. It may also take a few try’s before you find the right PM doctor for you. Once you do find the right doctor though it will be worth it. One other tip I have is let the doctor lead the consult and at the end give him your thoughts questions and suggestions. The first appointment should at the very least take an hour, the two PM doctors I saw that were really good was one and half to two hours long. Any how here is the link and I hope you are doing okay and this gives you an idea of what you need

http://thepainstore.blogspot.com/2010_10_01_archive.html?m=1

Thank you so much for taking the time to help me; it means a great deal to me for someone to care enough to do what you have done. Just simple information is key. I thought I was going to be scheduled this week at a pain clinic but I just got off the phone with my primary and the are booked out as far as May & June.. Oh well, I have suffered for 34 years, I suppose another few months will not make that much difference.. I printed out the link you sent. Thank you again Kari for your compassion! Take care~~~

Kari said:

Hi Silverwolf,
I hope your pain was a little bit better yesterday and will be easier to manage tomorrow. I saw your going to be going for a pain managment. Which is a really good idea for you. I don't know about the rest of the country of where your at but finding a good pain managment doctor sometimes can take some work. I found this link that I thought might be helpful for you, it is a list of what you will need. Beware also that the really good pain managment doctors will only take patients by referral by another doctor, and there may also be a review on your medical condition for acceptance as a patient as pain managment treatment. It may also take a few try's before you find the right PM doctor for you. Once you do find the right doctor though it will be worth it. One other tip I have is let the doctor lead the consult and at the end give him your thoughts questions and suggestions. The first appointment should at the very least take an hour, the two PM doctors I saw that were really good was one and half to two hours long. Any how here is the link and I hope you are doing okay and this gives you an idea of what you need

http://thepainstore.blogspot.com/2010_10_01_archive.html?m=1

I’m big into telling doctor’s offices to put me on a cancellation list and then calling every other day to remind them that I’m still around and still need to see them ASAP. You might be able to catch them right after someone canceled. I’d hate for you to have to wait 5-6 months to get pain relief. That’s ridiculous.

I will try that. It can't hurt right?.. Thank you again for all of your help. Words cannot express how grateful I am! I do have one request if at all possible. The link, "The Physician's Advisory form" which I am unable to open to print. i was wondering if you or someone on this site could possibly email the form to me if they already have it printed??? My email address is: ■■■■■■■■■■■■■■■■■■■■ This would also help me a great deal, thank you again for caring for a perfect stranger. It says a lot about your character!

ihold said:

I'm big into telling doctor's offices to put me on a cancellation list and then calling every other day to remind them that I'm still around and still need to see them ASAP. You might be able to catch them right after someone canceled. I'd hate for you to have to wait 5-6 months to get pain relief. That's ridiculous.

Hi Silverewolf, this is the third time I have left a reply about the Dr Ad form!! You must be missing my answers, I sent one immediately than a couple of days ago and here is my next attemp.
Click on the link, save as, open and print

Hope that helps!

Ask your doctor to request an emergency consultation, they will try to get you in sooner than. Like days or two weeks. Not all doctors do this, but it is worth a try to get you in sooner. It is not right to be in that amount of pain. You will need to call your referring doctor to do this. Leave a message with his nurse or for him. I did not know there were these types or referrals until this last spring. No guarantees you will get in sooner or your doctor will do this but it is worth a shot.

Glad to help you out. I really hope you get the pain levels more in control. One last thing to let you know. Although the ultimate goal with pain managment is to make the pain go away; sometimes the goal is just to control your pain levels to tolerable level. So you will have to think about what that might be for you. Hugs to you and keep us posted on how you are doing.



silverwolf said:

Thank you so much for taking the time to help me; it means a great deal to me for someone to care enough to do what you have done. Just simple information is key. I thought I was going to be scheduled this week at a pain clinic but I just got off the phone with my primary and the are booked out as far as May & June.. Oh well, I have suffered for 34 years, I suppose another few months will not make that much difference.. I printed out the link you sent. Thank you again Kari for your compassion! Take care~~~

Kari said:

Hi Silverwolf,
I hope your pain was a little bit better yesterday and will be easier to manage tomorrow. I saw your going to be going for a pain managment. Which is a really good idea for you. I don't know about the rest of the country of where your at but finding a good pain managment doctor sometimes can take some work. I found this link that I thought might be helpful for you, it is a list of what you will need. Beware also that the really good pain managment doctors will only take patients by referral by another doctor, and there may also be a review on your medical condition for acceptance as a patient as pain managment treatment. It may also take a few try's before you find the right PM doctor for you. Once you do find the right doctor though it will be worth it. One other tip I have is let the doctor lead the consult and at the end give him your thoughts questions and suggestions. The first appointment should at the very least take an hour, the two PM doctors I saw that were really good was one and half to two hours long. Any how here is the link and I hope you are doing okay and this gives you an idea of what you need

http://thepainstore.blogspot.com/2010_10_01_archive.html?m=1