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Any Help Would Be Greatly Appreciated

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Unread 04-09-2012, 03:28 PM   #1
Pennypat
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Default Any Help Would Be Greatly Appreciated

Hello everyone, My doctor thinks I have TN. I have an earache and have been to ENT and had cat scan but all was clear. My doctor prescribed Lyrica 75 mgs. twice per day. I have been taking it for 2 weeks. The first week it helped the pain but this week it is not helping at all even though the ear ache is no worse. It is not a sharp, terrible pain, just aching and boring sometime. The pain is constant. I have an appt. to see a neurologist on April 20. Does Lyrica cause a sore throat or hoarseness and does it cause a change in taste? Also, is this how TN starts out? I have read up on it and am in constant fear of the horrible ice pick stabs yet to come. Any information is welcome and I look forward to meeting everybody but I warn you, I am no computer whiz and it took awhile but I finally figured out how to post here. I am new at this stuff. Thanks!
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Unread 04-10-2012, 07:13 AM   #2
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Welcome! I'm glad you found your way here. I don't know that I can answer any of your questions but I think you will find someone here who will be able to help. I am glad you have an appointment with a neurologist coming up. TN or any kind of painful illness is scary! But hang in there and hopefully you will find something that takes away the pain soon. And it helps to be able to talk with people here!
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Burntmarshmallow (04-10-2012)
Unread 04-10-2012, 09:53 AM   #3
Burntmarshmallow
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Hi Penny. I have never been on Lyrica so I am not sure I can help with that one. I do know others who take it as part of their pain control regiment it works once the right dosage is found. each of us is different so what helps one may not help the next. some may be on higher dosage or lower or even different meds all together. I do know meds can change the taste of things or even just give you a odd taste in your mouth .
How long have you been dealing with ear ache?you mention being on meds for 2 weeks now so hugs to (((you))) ear aches stink!!!!! did you have a cold or sinus before hand??

Is this how T.N. starts out.... if I knew the answer to how T.N. starts out I would without a doubt help many many folks . . they are different ways one gets this a blood vessel wrapping or touching the nerve, trauma, virus infection shingles,chick pox ... some cases it may be hereditary . there is no 1 one real answer to how .T.N. starts .
Try to give your med more time to build up , perhaps your Doc will adjust the dosage so Make sure you mention this at your Apt okay? please don't waste one second of a good day wondering and worrying about if you will get stabbing pain. But if that bridge comes we will cross it but for now I think seeing Nuero and getting pain controlled by med and adjusting to all of it is work out enough
I hope you will let us know how the apt turns out and what your neuro thinks. we are here for you ,we care . I hope someone who has been or is on Lyrica will reply.
sending low pain and wish for your neuro apt to go well. hope you have a nice rest of week.
PEACE
BMW
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Unread 04-10-2012, 02:38 PM   #4
Pennypat
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Confused Thanks So Much For The Welcoming Words!!

I really appreciate your responses to my questions and even more the kind words. I have been so afraid since I researched TN and found out what it was. Now I know I have other people to talk to about it. I had 3 root canals on upper right side last year and still had dull ache. Went to my now new dentist and he said I had TN that there was nothing wrong with my teeth. Went back to primary doctor today as the dosage of Lyrica was not working. She upped it to 150 mgs. twice a day and also gave me Ultram. I see the neurologist on the 20th. I hope I am posting this correctly to the 2 people that were kind enough to answer my previous post.
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Unread 04-10-2012, 03:34 PM   #5
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you post fine. If you need help around here or have trouble just post or message me ( click on name of person and you can leave message on their profile )
sorry to hear you had teeth work that did not need to be done But that is not uncommon.a plus is at least you have a good new dentist .
I am sure once you have neuro apt you will get meds that better help with the pain. and you will Always have us to talk to and get support from . because we get it and we are here for each other . welcome to the family Penny tho I wish you or no one had this .
PEACE
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Unread 04-10-2012, 03:50 PM   #6
BethO2L
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Default Hey Penny

Maybe I can answer a few more of your questions...

Where to start?? The easy one Lyrica. I have been on Lyrica for probably...5-6 years. It's a good drug in certain situations. It is very similar in nature to Neurontin ( another very good drug for TN) it was initially created for diabetics with leg pain (nerve related) now it is being sold and prescribed for a variety of disorders,,,all related to nerve pain. It is an anti convulsant which works by slowing down the rate at which the nerves fire, so less nerve firing equals less pain...it also can equal fatigue, brain fog, nausea,,,and yes difficulty in swallowing. When I am on a larger dose I have difficulty in swallowing...for me it is minimal and I just got used to it. So a sore throat or hoarseness does not sound unusual, however mention it to the Neuro when you see them, they need to be aware of any side effect you are having. Can it change how things taste??sure any drug can. Every person reacts differently to any medication...like antibiotics will suppress your appetite and make your birth control pills less effective...they all have side effects,,here's a funny one. I was in a group setting and we all agreed that Lyrica can also increase flatulence.. yup you can fart more on this one...just an FYI.

It is a fairly clean med in that it is more metabolized by the kidney than the liver so it moves out of your system faster than other anti convulsants that go through the liver, they seem to have a longer half life in your system...all that really means is that they are all different and you will have to find the one or combination of drugs that work for you in controlling your pain.

OK, now the harder part, do you have TN,, sounds like it could be. I have heard of it starting in the ear before and migrating to more facial pain. That the lyrica worked for a time also implies that it is nerve related pain. However, your dosage is very low, you're at 150mg daily,,,for TN you are probably looking at double that to really give you better coverage. Usually how we are diagnosed is to be given Tegretol and call me in a few days if it helps the pain,,,there's your diagnosis. From there it is a process of finding a dose that covers your pain and you can live with the side effects. Some people (like me) can not take Tegretol (made me feel drunk all the time) but I can take boat loads of Neurontin and be fine..You will find that no one takes the same meds or at the same levels,,,this is a very individual disorder and you will find that you will need to treat it how it works best for you.

My advise is to always try and and give the meds a couple of months before you give up on them,,your body can adjust and the side effects can become minimal,,,that is of course if the med is controlling your pain.. that will come later,,for now let's deal with your symptoms.

Could be that your TN ( or facial pain) is the kind that causes more general constant pain, there is no guarantee that you will develop that "lightning bolt" pain..everyone is different. And if properly medicated that sharp pain may become a more severe dull ache or an intense tingling,, it hits everyone differently. Don't worry, it hasn't happened yet, it may not happen. Don't wait for the other shoe to drop,, that will only cause more stress and stress is probably the number one cause of increase in TN pain.

So a quick FYI, if you are diagnosed with TN, first purchase "striking back" probably the best most comprehensive book on TN. The TNA website sells it as does Amazon. Next, cut out all aspartame, MSG, caffeine and as much sugar as possible,,,all can increase TN or facial pain. Start taking a GooD vitamin B complex, the B vitamins especially B12 work on helping rebuild the mylean sheath around nerves, so it can really help in reducing pain. Drink water, lots,,these meds can be hard on your system so the more clean water you can drink the better they work and the more it cleans the toxins from your system. Sleep in primary, if you have trouble sleeping because of pain or you are just a bad sleeper see if your MD can RX some ambien or whatever your medical situation permits,,,you can not deal with pain with no sleep...Avoid Tooth Whiteners!!! they can sensitize the tooth and make the TN worse!! trust me on that one..be prepared to face some depression and deal with it!! don't think you can muscle through,,you can't,,
chronic pain=chronic depression, cymbalta can help (if you can take it) because it helps with depression and pain....lastly, the one no one ever listens to me about...learn to meditate. If religious meditation is your thing fine,,if not go buy a cheap CD on basic meditation..learn to control your breathing, how to relieve stress,,even if it's just the basics it can make an enormous difference in the quality of your life and in the end that's what this is all about. You may never be pain free but hopefully you and your MD's will find a way for you to be pain controlled so you can continue to have the quality of life that you want. You will have to make compromises but that's just part of dealing with any chronic pain issue.

If you have diabetes you make compromises, if you have TN you make different compromises to continue doing what's important in your life...that's the goal. Is this a difficult disorder,,for some of us, for others it is a minor inconvenience, it will depend on the severity. You don't know that yet and you won't for a while...don't go looking for trouble!! Take this one step, one issue at a time.

Remember there are a lot of great people here who can give you great advise on how to cope and tricks we have learned over the years,,keep searching and asking questions,,sooner or later someone sees it and gives you what you need...and lastly (sorry about the length of this) this site is great as are the people you will meet here, but I agree with you,,it's not easy to navigate (here that monitors!!!) it could be a lot more user friendly,,it took me a long time to figure it out,,I'm not very Techie either....but I am forever grateful for the help, the advise and the friend I've gotten from this site..stay with us, we are here for you and you have all our support..we've been where you are, scared and alone. You're not alone,,don't be scared..TN changed my life but even after a decade it hasn't stopped me, don't let it stop you......Good Luck...let us know what happens at the Neuro...Beth
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Unread 04-11-2012, 04:42 AM   #7
Pennypat
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Default Thank you Everyone

Thank so much for the information. I will definitly buy the book. I hope I do not have this horrible disease but if I do I am so thankful I have yall to talk to.
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Unread 04-17-2012, 09:16 AM   #8
BethO2L
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Default PennyPat

Yes,,this is a difficult disorder but it's not the worst thing that could happen. It can't kill you unless you let it. It changes your life, yes, this is not how I saw my life at 50+ but it's still a good life. Don't give up hope!! Things are changing everyday!!
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Unread 04-21-2012, 01:14 PM   #9
cailinruaidh
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Quote:
Originally Posted by Pennypat View Post
I really appreciate your responses to my questions and even more the kind words. I have been so afraid since I researched TN and found out what it was. Now I know I have other people to talk to about it. I had 3 root canals on upper right side last year and still had dull ache. Went to my now new dentist and he said I had TN that there was nothing wrong with my teeth. Went back to primary doctor today as the dosage of Lyrica was not working. She upped it to 150 mgs. twice a day and also gave me Ultram. I see the neurologist on the 20th. I hope I am posting this correctly to the 2 people that were kind enough to answer my previous post.
You have received great advice on this page, Pennypat. I'm not clear though on when you had the root-canals done, it sounds like it was after you got the pain?
The Lyrica is drying out your mouth/throat, which is a common-effect. Keep a bottle of filtered water by you and maybe some hard candy to suck to make your mouth more comfortable. That may also affect the taste in your mouth. You can divide the total daily dose of each drug and take it 3 or 4 times a day instead of twice) if that helps with any side-effects.
Also, you can take some extra paracetamol with the Ultram, I find it especially helps with the dull pain. Don't take any more than 1,000 mg in each dose and remember to factor in the paracetamol already in the Ultram; I think it's 325 mg in each tablet? Check the box to be sure.
You seem to be doing everything you can: keep on trucking, gal.
Cailinruaidh (red-haired girl in gaelic)
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Unread 04-21-2012, 01:57 PM   #10
Dsaxton07
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Frown Ear Pain

Quote:
Originally Posted by Pennypat View Post
Hello everyone, My doctor thinks I have TN. I have an earache and have been to ENT and had cat scan but all was clear. My doctor prescribed Lyrica 75 mgs. twice per day. I have been taking it for 2 weeks. The first week it helped the pain but this week it is not helping at all even though the ear ache is no worse. It is not a sharp, terrible pain, just aching and boring sometime. The pain is constant. I have an appt. to see a neurologist on April 20. Does Lyrica cause a sore throat or hoarseness and does it cause a change in taste? Also, is this how TN starts out? I have read up on it and am in constant fear of the horrible ice pick stabs yet to come. Any information is welcome and I look forward to meeting everybody but I warn you, I am no computer whiz and it took awhile but I finally figured out how to post here. I am new at this stuff. Thanks!
I right there with you. I went to the ENT for a constant earache and ordered a CT. My CT was also clear and then the doctor refered me to pain management. I have had one steroid injection that gave only a few days relief and having my second one Monday. I have an appointment with the Neurologist May 3rd. I was started on Lyrica but have not seen any change since Ive been on it. I feel like for over a month I'm living off of pain medicine and not any progress has been made!!
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