Please, I just don’t know what to do. Sat was the stay over night in hospital, I’V’s prevented pain pretty well. Released Sunday afternoon with prescription for Prednisone and upped on my scrip for for Carbamazepine to over 800mg per day. Today still getting electric shocks and I called dr who called in prescription for Baclofen. I have just had a number of shocks and the prescription says 1 10mg 3x daily. Since I didnt get this med until around 4pm I didn’t start it until around then. However I have now taken the three doses and Ii have had mor shocks with more just waiting to appear if you know what I mean. I just don’t see any sense calling the dr or going to the ER unless they kill me. I don’t know how you guys who have suffered with this are making it. Why isn’t the medicine working!!! I already take a zillion other drugs for relaxation etc for my bipolar, I just dont understsnd. I still think this is all a bad nightmare and this is not happening to me.
Many of the meds used in managing TN can take days or longer to reach therapeutic levels in the bloodstream, Phoebe. And try to remember that you might be experiencing feelings of emotional distress in part because the Carbamazepine tends to suppress blood levels of some of the meds used against the bipolar. This is a nasty combination and I am by no means trivializing your pain. But I think you're going to have to strive for more patience for at least a few days.
Go in Peace and Power
Red
Hang in there Phoebe. Hugs, Min
Again, you are newly diagnosed. I do not know but did your doctor not explain that it will take days to get the Carbamazepine to build up in your system? I was on 900 mg a day, still feeling no relieve. I called my doctor freaking out before Thanksgiving weekend and said I could not live like this, I could not handle it. At that time they added 300 mg of gabapentin to the carbamezepine. The first two days I had relieve, after that I was getting major pain. On top of this, the ER doctor had prescribed vicodin.
And it could be that the carbamazepine is not what you need to control the pain. For me, that medicine made me a zombie and I am switching over to the gabapentin only with vicodin for the breakthrough pain. Today, I increased my intake of the gabapentin and the pain stayed away until this evening and I took my vicodin and most of the pain went away. Not all, but I can live with what I have right now.
Can you go to your GP and talk about some other options? My doctor was really open to switching meds when it was clear the carb was making me miserable and not effective alone. He made it clear that if the gabapentin didn't work for me, then I was to call him and we would switch to something else or add another drug to it to try and supplement it.
Hang in there. I am going through this along with you. I am newly diagnosed on Nov 16th and I understand how frustrating it is. There is no magic wand, I wish there was!!!! At this point I am willing to make this pain stop all together.
I opted for surgery because I could not handle the meds.
You can ask for lidocane cream/patches to put right on the pain -- helped me.
Keep posting!
Both Lisa and Dancer illustrate one of the most powerful strengths of a patient to patient website like this one. The personal experience and perspectives of others who have been through the same journey matter a lot in finding your way. And I think Lisa's approach to participating in her own medication management is spang on target. Her relationship with her doctor is very much a model that I have for years encouraged face pain patients to seek out actively.
Thanks to you both for participating and helping. And to Phoebe my own add-on to the encouragement: "Hang in there, lady."
PS to Phoebe (off topic here): Site managers have squared me away on links to non-profit organizations. I'll be posting a short note to your thread in the Feedback discussion, within the next few minutes.
Regards,
Red
Phoebe, I feel so very bad for you. I have been in just the same place and wondered if it would ever end. Well for me it does from time to time. I enjoy every moment out of pain.
I take the same approach as Lisa. You just learn with time you have to assertive without ticking off your GP. Mine does not have all the answers but my neuro knows this and writes a letter after every appointment I have with her. It tells my GP what alternative meds to prescribe me if my current regime fails or the side effects are intolerable. Somehow with knowing this back up is in place I have been able to relax a little about my condition and at last we are on top of it.
I must add that having Red for a friend does not harm me either! It is my safety net along with the support I gain form the members here. Being able to read up about my concerns as a site member is a comfort also. It has made so much difference.
I hope for better things for you very soon.
Jackie
I can't remember, but do you have a good GP? Mine is awesome. I have had him for years. In fact, he delivered my daughter 13 years ago when he was a really a general practice type of guy. He has since stopped delivering babies which is a darn shame.
My doctor is also a DO. I have found in my experience that DO's are more open to a holistic approach to medicine. My whole family, mom & dad, and sister and her kids (before she moved) are treated by him. No visit takes place where he does not stop to ask about my family, how life is, what's going on, so on. There are some studies that show that DO's are schooled more to do this then regular MD's. Anyway, my doctor is more apt to credit things like alternative medicine. I asked him if he thought any of that would help this condition, and he said no and explained to me WHY? He said maybe acupuncture, but right now he did not recommend I do anything to aggravate the condition by sticking needles in my face.
I guess what I am saying is don't count out what your GP says or knows about this condition. My GP new alot more than I thought he would. And knows his limitations. He told me we were getting a referral to a neuro and that once I had an appt if these meds did not work, he would call the neuro and ask him for other possible meds to try.
One thing I want to caution you on that I just learned. My GP made a referral to a neuro that has a yucky rep in town for patient bedside manner. I called around to other neuros in town because I am uninsured and thought I could just call one up. Anyway, I was told that they really needed a referral and that it was not for insurance, but to get the report my doctor will write as well as past medical reports. I know that you made some calls yourself to the Mayo Clinic. I hope that they told you something similar. I would hate for you to spin your wheels here.
I know part of your frustration is drug contradictions. While rxlist is a great sight, if you are not schooled in this, you might think you are going to die putting all your meds in there... I thought so!!! That is why it is so important to trust and have a relationship with your pharmacist. I have been going to the same pharmacy for years and they know me by name. They have the training and ability to know what contradicts and they will let you know. They have to or it is a malpractice issue for them. If something interacts which would cause major illness or death, they are going to call the doctor and tell you.
Lisa I am from the UK so the term DO has no meaning to me. Can I ask you to explain so if someone asks me something with that in I will understand? Thank you, Jackie
Lisa (iamrite) said:
I can't remember, but do you have a good GP? Mine is awesome. I have had him for years. In fact, he delivered my daughter 13 years ago when he was a really a general practice type of guy. He has since stopped delivering babies which is a darn shame.
My doctor is also a DO. I have found in my experience that DO's are more open to a holistic approach to medicine. My whole family, mom & dad, and sister and her kids (before she moved) are treated by him. No visit takes place where he does not stop to ask about my family, how life is, what's going on, so on. There are some studies that show that DO's are schooled more to do this then regular MD's. Anyway, my doctor is more apt to credit things like alternative medicine. I asked him if he thought any of that would help this condition, and he said no and explained to me WHY? He said maybe acupuncture, but right now he did not recommend I do anything to aggravate the condition by sticking needles in my face.
I guess what I am saying is don't count out what your GP says or knows about this condition. My GP new alot more than I thought he would. And knows his limitations. He told me we were getting a referral to a neuro and that once I had an appt if these meds did not work, he would call the neuro and ask him for other possible meds to try.
One thing I want to caution you on that I just learned. My GP made a referral to a neuro that has a yucky rep in town for patient bedside manner. I called around to other neuros in town because I am uninsured and thought I could just call one up. Anyway, I was told that they really needed a referral and that it was not for insurance, but to get the report my doctor will write as well as past medical reports. I know that you made some calls yourself to the Mayo Clinic. I hope that they told you something similar. I would hate for you to spin your wheels here.
I know part of your frustration is drug contradictions. While rxlist is a great sight, if you are not schooled in this, you might think you are going to die putting all your meds in there... I thought so!!! That is why it is so important to trust and have a relationship with your pharmacist. I have been going to the same pharmacy for years and they know me by name. They have the training and ability to know what contradicts and they will let you know. They have to or it is a malpractice issue for them. If something interacts which would cause major illness or death, they are going to call the doctor and tell you.
As always, thanks again for the support.
1) No, none of the doctors I have seen for this affliction explained about the time it takes for these meds to get into my system. Seems somewhat out of whack to have meds prescribed for pain that take time to build up doesn't it?
2)Have not seen my GP for this, who happens to be a DO which may be why we love her? Did not realize that DO has bedside training in school. My husband refuses to see anyone else for medical care if at all possible.
3)Was a chiropractor today. She went over my brain scan with me which I just realized my neuro did NOT do. And darn, I was just starting to like him. Before I could object though she had me on the table. She said the RIGHT side of my face/jaw/whatever was very out of whack. I am going to feel might stupid if what she fixed today cures me. Possibilities?
4)Went to my therapist appt. today and actually fell asleep on him, OMG!!! He is so sweet though. He called my husband and told him I was too wasted on my meds to drive and would he pick me up. I didn't know the muscle relaxants could do that to you? I thought only pain pills did? NOW I KNOW I CAN'T be on these forever. I would never get anything done!
5)And just to clarify, my pain comes and goes. I do not have it constantly. Mine just comes from out of the blue and kicks my butttttt.
6)Thanks RED, glad we got over the misunderstanding.
Phoebe
Jackie, a DO is a doctor of osteopathy. Has training as an MD with additional courses in types of physical therapy that may have elements in common with Chiropractic.
Regards, Red
Thank you so much Red, makes sense. I want one!
Richard A. “Red” Lawhern said:
Jackie, a DO is a doctor of osteopathy. Has training as an MD with additional courses in types of physical therapy that may have elements in common with Chiropractic.
Regards, Red
My pain is the same. Comes out of the blue and levels me. I can feel fine one minute and then BAM. I never know when it is going to strike. I can look back and see that I was kind of building up to this with episodes of pain that were extremely painful, but I had put it down to my TMJ or a tooth or something. Been having those pains for about 6 months. Was not until the first BAM and an ER trip with debilitating pain that the ER doctor and Neurologist there said TN... The thing is that I had started to suspect something when I googled "extreme pain in sinus and jaw area". The symptoms were just spot on.
However, the ER doctor was clear to me that the carb med takes awhile to build up, similar to taking SSRI's for depression. He also told me it was imperative that I follow up with my GP so that he could evaluate me to see if things needed to be changed, and to order blood work. Because longtime use of carb meds may cause liver problems. My mom was with me and she made the call the next day to the GP and made the first available appt. Your GP is the only person who has your WHOLE medical history and it is really important that this person is brought into the loop. He or she may be able to ally some of your fears and/or give you more detail then what you have had. I really encourage you rather than seeking relief right now from the Chiro, or the Mayo Clinic, or another neuro, that you go see your GP and get a plan. Don't spread things out, taking kind of a shotgun approach. It may be also that Carb meds are not effective for you. A neuro is going to want to work with your GP anyway (or should want to).
Hi Lisa.
Going the GP route is not an option for me at this time. She seems to collect the reports from all my other doctors so she knows what to say to me when I see her for wellness visits. She won't even order my blood/drug levels for the drugs from my psych. dr. She says that those tests are for the other dr. to run. Anytime we have something that needs a specialists opinion she says go get it. She will work with any dr. we see, but the big stuff is started by the other drs. Come to think of it I do find it interesting that she keeps saying I'm on too much medication but she won't speak to the psych. dr. about it.
In that case, you need a new GP. Because this is the a GP's job. Period. She is mistaken on what her role is imo. My doctor is the one that runs all these tests and stays on top of all of this. I was told by my GP that I would see the neurologist, but unless they opted for surgery, then I would see him but be sent back to my GP to be monitored. IMO that is what you need. My GP would call my psych and has before, to brainstorm. I fear your doctor is running the risk of medical malpractice as I doubt she is following the medical standards. She sounds, quite frankly, lazy.
Lisa, I've heard discussions like the one between you and Phoebe many times over the past 16 years. I tend to believe there is no one size fits all rule here. A great deal depends on the training and professional dispositions of the GP. Many GPs will NOT under any conditions attempt to manage psycho-active medications for either depressed patients or those with chronic neuropathy conditions. They don't feel they have adequate training to do so safely, and they refer to psychiatrists or neurologists (or sometimes anesthesiologists or immunologists). Likewise, many GPs go through 45 years of an active practice without ever seeing a patient who has TN, and without refreshing themselves in current practices of neurology. Others may do just the opposite, playing an active role in conditions that are often treated by other doctors with specialty training.
Because of these variations, one of the suggestions I sometimes make to chronic facial pain patients is that they re-interview their family physicians to make a thoughtful determination as to whether they need to change from a GP to a board certified Internist who (a) has more specialty training in internal medicine, and (b) who sees an older patient population with issues more closely aligned to those of TN patients (the majority of whom are 50 years or older when pain first presents).
My two Red cents, for whatever they're worth...
Regards, Red
Dear Lisa and Red,
Indeed a touchy subject. This particular doctor takes an awful lot of time listening to patient concerns. It is the only dr. I would and have waited in the waiting room for an excessive amount of time. She is not afraid to listen to the suggestions of her patients. I can tell you at least 2 times in the past I have mentioned the possibility of conditions, she has ordered suggested the specialist, we go, and voila, I am correct.
I do see both your points but unless you are there I tell you as with other non-dr. situations you just never know. I DO know she will be happy, as my neurologists office has stated, that I go to the MAYO clinic and have the best of diagnostic examas possible. I just don't see how a GP, no matter how great their reputation is would be able to afford all the diagnostic equipment that a major medical center has.
I do know that any time we have had major incidents in our family health wise she does want to be informed. If your GP is able to stay up to date on all treatments and has the resources for all your tests fantastic. Red is correct, if I interpret him correctly, there is a a reason for specialists.
Can't wait for Dec 14! (Oh, ck out my post on my first public attack :( )
Totally makes sense Red! And there is no one size fits all rule either. I think it is my own frustration at what I perceive to be lazy people in "learned" professions like doctors and lawyers who refuse to do what they should. While I understand not wanting to monitor psychiatric blood levels, which technically a psychiatrist should do, I would say that someone needs to be monitoring Phoebe while she is on those Carbs, that I believe is very important. And to know that she was not told they have to build up in her system is frustrating. She seems to be stuck in a cycle of a nightmare. It makes sense to have one point person or at least an advocate?
What about a nurse/patient advocate? My doctor had one just last month when he was getting a run around that would have killed him had he waited longer. My cousin is one in the LA area. She took all his medical records, reviewed them, and because she knew how to speak the language, was able to explain WHY the appointment was crucial for him to get into right away. Seems like with all the cross talk, someone like this could help Phoebe.
Just a thought.
Oh, and to clarify, I was seen by a neurologist in the ER. That is where my diagnosis happened. I have been referred back out to a neurologist in a few months. We have the appointment made because it take so long to get an appointment in my town. However, I may not need one if the meds work.
I am not knocking your approach and I am sorry if anything I have said appears that way. I do hope that what my doctor has told me is true, which is there is no single test or diagnostic test that can be taken or given to show TN. And treatment is by trial and error and patience.
:)
Your doctor is correct in his observations about testing and diagnosis. And medication responses are so varied that the process of working you up to effective levels is often indistinguishable from trial and error.
I wish you well in that process
{:-)
R