I went to see my GP today as I am not doing at all well on the tegretol feeling dreadful. I wanted her to bring forward my Neuro appointment as its another 17 days to wait. I started to tell her how I felt and ended up bursting into tear, which she wasn't at all impressed with.I said that the pills make me emotional and I feel so bad, she said you're not dying, stop crying!! I tried to explain how I was feeling and that I couldn't take the medication any longer but she kept interrupting me and saying irrelevant things. When I tried to explain things she kept telling me to listen! She has told me to only take half a tablet three times a day instead of a whole one. I tried to explain that I'm already having break through pain on 600 mg a day so cutting in in half will bring the pain on. I explained that I have a rash 30 mins after taking each pill and she said you may be allergic so we will have to watch that. So I have to cut the teg in half until Monday and I have another appointment. If its not helped she wants me to go back on the Gabapentin which had stopped working. I feel so despondent and fed up, It's obvious that I know a lot more about the condition than she does! I feel like its pointless seeing her. This is like being stuck in a nightmare that I can't wake up from. I can't change Doctors as I live in a small Spanish town and its her or nothing. Don't know what to do.
vent away! That is what the group is for. Tegretol makes me very emotional. Which is strange to me because I am not a crier. keep strong and hope she can help next week. Most GP's never see a case of TN:( Mine had not until me. Big hug x
Thanks Jackie, it s so helpful to be able to get it out! I've calmed down a bit now. xx
Jackie said:
vent away! That is what the group is for. Tegretol makes me very emotional. Which is strange to me because I am not a crier. keep strong and hope she can help next week. Most GP's never see a case of TN:( Mine had not until me. Big hug x
Sorry your GP is so unkind. I do agree you have to be careful with your reaction to the Tegretol, though. I was also allergic. I did get some ( never complete ) relief from 2400 mg of Gabapentin, but had MVD this past Friday, and so far it has been the best decision I have ever made.
Hope you get to feeling better soon.
Christine
Hi christine, Brilliant news that the MVD has helped you. That is so wonderful to hear. Would you mind telling us about the op and how you felt after all the details so we have some idea of what to expect? The mean GP (who incidentally looks a bit like a witch!! he he!!) Said Do you know there is an operation you can have, so at least she knows that much!!How long did you have to stay in Hospital for? Are you home now? How long do you think it will be before you're up and about again? So so pleased for you. One more person saved!! Hazzah! x
Christine said:
Sorry your GP is so unkind. I do agree you have to be careful with your reaction to the Tegretol, though. I was also allergic. I did get some ( never complete ) relief from 2400 mg of Gabapentin, but had MVD this past Friday, and so far it has been the best decision I have ever made. Hope you get to feeling better soon. Christine
You poor thing. I am sorry you are going through this. I have been so blessed. My nurse practitioner diagnosed me the first time she saw me and put me on tegretol. She left to move away and I cried when she told me because I had been seeing her for 20 years! We hugged on my last visit. I had to go see her replacement because of breakthrough pain and she was VERY nice. When I had to go back again in Dec. for more pain, I started crying and she was so sweet. She hugged me before I left and promised me that we would do what is best for me, so she referred me to a neurosurgeon. I go on Monday. I was supposed to see him on the 16th of THIS month, but we had some ice the night before and I took a nasty fall, so I had to reschedule. I have been very blessed so far to have people that are sympathetic to my situation. I don't know what I would do if I had to deal with a-holes all the time. Good luck to you. (((((((((((((hugs)))))))))))
Hi Donna, That was very lucky indeed as it seems some people spend months or years without a diagnoses. I in fact diagnosed myself and then went to a doctor, who confirmed my diagnoses!! I'm very lucky I saw her before the one I have now as she was lovely. Unfortunately she was a private Doctor and I can;t afford to see her as the tests would be much money. Good luck with the Neurosurgeon when you see him/her. I saw a post on here earlier about MVD and the lady is doing really well, so there is hope for us all. xxx Lots of love to you, thanks for taking the time to reply I really appreciate it. Dx
Donna Cook Turnage said:
You poor thing. I am sorry you are going through this. I have been so blessed. My nurse practitioner diagnosed me the first time she saw me and put me on tegretol. She left to move away and I cried when she told me because I had been seeing her for 20 years! We hugged on my last visit. I had to go see her replacement because of breakthrough pain and she was VERY nice. When I had to go back again in Dec. for more pain, I started crying and she was so sweet. She hugged me before I left and promised me that we would do what is best for me, so she referred me to a neurosurgeon. I go on Monday. I was supposed to see him on the 16th of THIS month, but we had some ice the night before and I took a nasty fall, so I had to reschedule. I have been very blessed so far to have people that are sympathetic to my situation. I don't know what I would do if I had to deal with a-holes all the time. Good luck to you. (((((((((((((hugs)))))))))))
I think most doctors have a hard time understanding how bad the pain can be. In fact most people can't understand and really how could they? I am lucky to have a husband that has seen me handle great deals of pain in my past ( from different things then TN) so when he sees the pain I am in he is very understanding as he realizes it must be horrible for it to take me down.
As for meds I haven't heard of anyone ( correct me if I am wrong) that doesn't have any side effects. For me it wasn't worth it as I can't work, I am tired all the time, depressed to the point where I scare myself and basically have no life when I am on the drugs. My GP is very understanding but what can she say? The drugs help the pain but the side effects are real so really it is my choice in the end. I put most doctors in the same boat as engineers and other highly intelligent people. They don't always have the social smarts to go along with their academic intelligence. Once you accept this it is easier to not get insulted by them. ( my GP is excluded)
I am fortunate that I work from home so I don't need to go outside if I don't want to. I wake up very early and if I have to go outside to walk my dogs I make sure I am very tired and ready for a nap beforehand .I wrap myself up like a mummy, take my dogs out and when I come home I take 2 tylenol 3's and try to go to sleep before the pain hits. I feel the pain while I am sleeping but it is much more bearable than when I am awake.
I realize this is not for everyone but I would much rather have the pain a couple of times a day then to live in a fog, not be able to work and feel like life isn't worth living. The pain is horrible but I try to keep positive, exercise, eat well and appreciate what is going well in my life.
Just my two cents worth. I realize there are many people who are much worse than I am but I also think that the pain is worse if you let it control and define who you are. The mind is a wonderful thing and I do believe it can help us control the pain if we allow it to.
I wish you all the best and that you soon find what works for you
Debra,
Hugs. I’m sorry your GP seems to lack any empathy for you. Have you seen a neuro for this yet? It might the GP is over her head with your tn, or lacks enough knowledge on tn, or a little of both. Because of the lack of empathy I would go find a new GP, but this is just me as I don’t care to have a doctor who does not even try to put their feet in my shoes. Watch out for reactions for the tergatol. If you notice the rash does not go away call your doctor. If your are still concern about your reaction you can call the pharmacist and ask about reactions such as yours and when it maybe needed to stop medication. I hope you are doing better today.
Hi Debra, so sorry to read of you’re dissapointment.
It can be so discouraging…
Try and do the half pill 3x a day…it might be that your dose was too much too soon, you might still be able to tolerate the Tegretol. I understand your fears about pain while you do this, it sucks but it might work . At least if you try you’ll know for sure before dismissing this med and trying something new. Have you tried the slow release version yet? I didn’t get much pain coverage with the regular Tegretol but for some reason the slow release adequately covered my pain.
Because of your rash, really keep a close eye on things the next few days.
I hope you wont suffer too much while you try this…when you go back Monday your doctor will see that you tried it her way. Make sure you get her attention regarding the gabapentin, tell her to listen to you for a change, as you’re the one suffering!!
Be respectful, but let her know it’s time for Plan C. Ask her opinion on other meds…maybe bring a list of meds from our website (under TN facts on main page ) and ask her opinion!
I hope this approach works, stress to her that your quality of life is being affected !
Huge ((( hugs))) , be sure to let me know how it goes on Monday !
Mimi xx
Hi Debra
I am going to post my surgery experience in detail very soon, but will be happy to give you some info right now. I had been officially diagnosed with TN in some form since June 2012. Tried Tegretol, was allergic,switched to Gabapentin. The maximum dose for me has been 2400mg, which minimizes my pain somewhat, but I always have pain. In October, I asked my neurologist about surgery, and he did not really seem to eager to refer me to a neurosurgeon, even though he agreed I was not managing well with medication. At that point, since I did not really need a referral for my insurance, I decided to explore my options myself.
I chose Dr. Jeffrey Brown in NY. I live in Atlanta GA, but Dr. Brown is so highly regarded, not only in the medical field, but within this group,that he was my first choice for a surgical consultation. Dr. Brown confirmed, as I suspected, that I had bi lateral atypical TN. On January 25, I had MVD on the right side. The procedure took about 4 hours. I woke up with pain from the surgery, of course, but no TN pain on the right! I am thrilled! I was supposed to spend the first 24 hours in ICU, then the next 2-3 days in a regular room, but due to a little bit of a problem with my blood pressure, I spent 2 days in ICU and then was released! So, surgery Friday, out of hospital Sunday, and I will be flying home tomorrow ! I have been sleeping a lot, pretty weak, and of course, have pain, but truly do not feel as bad as I thought I would. I get my stitches out in another week. I cannot drive, or lift anything heavier than 5 lbs until that time, so no housework for me I am moving about slowly, and will be relying on friends and family for the next few weeks for a lot. I hope to be back to full speed in a month.
I know we are all different, but I hope you will at least look into MVD. I am so glad I did!
Best regards!
Christine
I want to know if your doc would give you an anti-anxiety med or a topical med or both in the mean time of messing with the anti-epileptic meds we all love to hate!
Go to google and print off a McGill Pain Scale - fill it out and take it to her - maybe this will make her more empathetic - or print off a "google image" of what your pain paths look like -- there are hundreds to choose from
Lastly - if you have TN1... zaps of pain like lightning that come and go, you are a better candidate for MVD. If you have atypical TN, burning , boring constant (ish) pain , MVD is possible but not as good as if TN 1.
Send me a message and I will go to the top of the food chain for you
for a world renowned TN surgeon - he lectures in many countries he can give you a referral --- he did my MVD and would surely know somebody across the pond to help you out.
Hi, It all sounds great, hope you have a good flight home and get settled back in. There is no place like home, for comfort and rest. Keep us all posted and thanks fro writing all this even though you must be feeling rotten. So pleased for you xx
Christine said:
Hi Debra I am going to post my surgery experience in detail very soon, but will be happy to give you some info right now. I had been officially diagnosed with TN in some form since June 2012. Tried Tegretol, was allergic,switched to Gabapentin. The maximum dose for me has been 2400mg, which minimizes my pain somewhat, but I always have pain. In October, I asked my neurologist about surgery, and he did not really seem to eager to refer me to a neurosurgeon, even though he agreed I was not managing well with medication. At that point, since I did not really need a referral for my insurance, I decided to explore my options myself. I chose Dr. Jeffrey Brown in NY. I live in Atlanta GA, but Dr. Brown is so highly regarded, not only in the medical field, but within this group,that he was my first choice for a surgical consultation. Dr. Brown confirmed, as I suspected, that I had bi lateral atypical TN. On January 25, I had MVD on the right side. The procedure took about 4 hours. I woke up with pain from the surgery, of course, but no TN pain on the right! I am thrilled! I was supposed to spend the first 24 hours in ICU, then the next 2-3 days in a regular room, but due to a little bit of a problem with my blood pressure, I spent 2 days in ICU and then was released! So, surgery Friday, out of hospital Sunday, and I will be flying home tomorrow ! I have been sleeping a lot, pretty weak, and of course, have pain, but truly do not feel as bad as I thought I would. I get my stitches out in another week. I cannot drive, or lift anything heavier than 5 lbs until that time, so no housework for me :) I am moving about slowly, and will be relying on friends and family for the next few weeks for a lot. I hope to be back to full speed in a month. I know we are all different, but I hope you will at least look into MVD. I am so glad I did! Best regards! Christine
Hi I do have some anti anxiety meds that were proscribed by a different doctor, Xanex, but I haven't told her about them as she got really snooty when i mentioned I had seem a different doctor, because she was not listening It took a minute for me to explain to her that that was BEFORE i saw her so I didn't dare mention I had the xanex!! Thought she might kill me!! I needed one after I came out that's for sure. I'm going to ask my Neuro if i can just contact her directly in future about the TN as what is the point of being under her and then having to go through someone else, who doesn't know what she's talking about! The Spanish System is very different then the British system and i'm trying to get to grips with it. Thanks for your time, i will print of the chart and show her though I think she may be the Spanish version of the HULK!! Wish me luck!!
X
Kc Dancer Kc said:
I want to know if your doc would give you an anti-anxiety med or a topical med or both in the mean time of messing with the anti-epileptic meds we all love to hate!
Go to google and print off a McGill Pain Scale - fill it out and take it to her - maybe this will make her more empathetic - or print off a "google image" of what your pain paths look like -- there are hundreds to choose from
Lastly - if you have TN1... zaps of pain like lightning that come and go, you are a better candidate for MVD. If you have atypical TN, burning , boring constant (ish) pain , MVD is possible but not as good as if TN 1.
Send me a message and I will go to the top of the food chain for you
for a world renowned TN surgeon - he lectures in many countries he can give you a referral --- he did my MVD and would surely know somebody across the pond to help you out.
Thanks Mimi, I'm doing the half pill as you said, I may as well try it. I'm having quite a lot of break though pain but nothing i can't handle. i'm a bit afraid to eat as that is often when i get the real nasty buggers! I feel clearer in my mind but I'm aching all over and my chest feels a bit tight. I have just taken the dog out and feel quite knackered now, Wondering if the meds mask other aches and pains that pop out when your not on such a high dose.
I will try and hold it together better on Monday as I think i'll get a better result with her if i'm dry eyed!! She need to understand the severity on the situation, but unfortunately she isn't the listening sort, Goodness knows what attracted her to medicine!! Ha ha, Thanks again sweet lady .
Dx
Mimi said:
Hi Debra, so sorry to read of you're dissapointment. It can be so discouraging... Try and do the half pill 3x a day...it might be that your dose was too much too soon, you might still be able to tolerate the Tegretol. I understand your fears about pain while you do this, it sucks but it might work . At least if you try you'll know for sure before dismissing this med and trying something new. Have you tried the slow release version yet? I didn't get much pain coverage with the regular Tegretol but for some reason the slow release adequately covered my pain. Because of your rash, really keep a close eye on things the next few days. I hope you wont suffer too much while you try this...when you go back Monday your doctor will see that you tried it her way. Make sure you get her attention regarding the gabapentin, tell her to listen to you for a change, as you're the one suffering!! Be respectful, but let her know it's time for Plan C. Ask her opinion on other meds...maybe bring a list of meds from our website (under TN facts on main page ) and ask her opinion!
I hope this approach works, stress to her that your quality of life is being affected !
Huge ((( hugs))) , be sure to let me know how it goes on Monday ! Mimi xx
I would love to get a new doctor but I live in a Small Spanish town and she has the monopoly !! I have seem a Neuro and have another appointment in a couple of weeks so am going to ask if i can just go through her in future. Its pointless seeing a specialist and the only way to her is though someone who doesn;t know what they are talking about but decides she knows everything! Its been so helpful being able to just tell people that understand and offer advice and love. Thanks again xxx
Kari said:
Debra, Hugs. I'm sorry your GP seems to lack any empathy for you. Have you seen a neuro for this yet? It might the GP is over her head with your tn, or lacks enough knowledge on tn, or a little of both. Because of the lack of empathy I would go find a new GP, but this is just me as I don't care to have a doctor who does not even try to put their feet in my shoes. Watch out for reactions for the tergatol. If you notice the rash does not go away call your doctor. If your are still concern about your reaction you can call the pharmacist and ask about reactions such as yours and when it maybe needed to stop medication. I hope you are doing better today.
I am moving about slowly, and will be relying on friends and family for the next few weeks for a lot. I hope to be back to full speed in a month.