Trigeminal neuralgia please help!!!!! I can't continue on these drugs that make me feel. like a ju

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Suffering on and off since my twenties with TN only just been diagnosed in a round about fashion by doctors after 12 months of torture. Been on gabapentin and alzain both making me feel vile so refusing to take them. Please tell me there are other options I will pay private if necessary ??😡😭

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  • Posted

    First do you have typical or atypical TN? There are many options for tyical TN and not so many for atypical. There are operations, acupunture, Botox...
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  • Posted

    Hi Joanne, I have been suffering on and off for about 15 years now, and am having  a really awful flare up at the moment. I went to my GP and asked to see a neurologist. I have seen him now and am waiting for an appointment for an MRI scan, and have also been referred to the pain clinic. I know exactly what you mean about how awful the drugs make you feel. There are several options available, some very invasive, some not so. Please research as much as you can. Australia seems to have a lot of info about TN. I wish you well because this is a terrible disease and nobody can really iunderstand how bad it is unless they suffer themselves xx 
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  • Posted

    I had that problem with tegretol. it's better with trileptal but still not great.

    Many people are helped with MVD surgery but not all. I'm worry for your misery.

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  • Posted

    Sorry to hear that you are suffering. i too had TN for 1.5 years before opting to get MVD ( Brain surgery), The surgery worked to resolve my TN pain but other complications continue ( not as bad as having the TN pain though). Please ask your Neurologist if you are a candiate for this procedure. I like you, could not handle the numbing effect of the drugs anymore.  I was on 800 mg of Tegretol which would still not control the pain all the time. Reoccurance of pain happened every second / third day when i was on the meds. Laser/ Gamma Knife was going to be a temporary fix for me according to all my research and speaking with neurosurgeons so i opted not to get those and go for the micro vascular decompression instead. Good luck. I hope your suffering ends. Feel free to ask anything you like.
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    • Posted

      Hi Saaz,

      I also had 2  MVD's with complications. I no longer have the electrical shock, but now I have 24/7 involuntary movement disorder of twisting and spinning which cause severe pain 24/7 nonstop for 2 years now. I'm on more meds now then when I was having typical TN pain. Can you please tell me what complications do you have since I cannot find anyone on the internet with my condition.

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    • Posted

      I don't have twisting and spinning, but I do have 24/7 pain. Did doctors gave you any hope that your nerve will heal over some years? What medications do you take for the pain? For me only opioids seem to help at the moment. I also take max dose Gabamentin and antidepressants. Tegretol didn't help at all. I am planning to try Lyrica.

      Can some nerve blocks help you?

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    • Posted

      Hi, Laurel

      I am copy pasting my post i shared earlier on this blog. I hope people aren't annoyed that i am repeating such a long post but it's easier this way for me than to rethink the whole thing.  I haven't heard of the movement disorder that you describe but being on this site, i have read so many different terrible symptoms that people have experienced  and it's really unfortunate that when we go to the "experts", the neurosurgeons are still in the stage of collecting data with regards to this horrible condition.  Below is what i had posted earlier.

      I wish for this post to be seen by anyone considering the MVD procedure for Trigeminal Neuralgia. By no means do i intend to scare anyone and anything i post here is just my experience. I don't intend to say that this will happen to you but you should ask your surgeon about all of these things and make sure you get an experienced one.

      I had the MVD procedure March 29th 2016 to fix TN of the 3rd cranial nerve ( pain occurring in the lower left lip area ). My complication was that the TN nerve was being pushed by the Basilar artery. This as it turned out was a very rare case and after interviewing several surgeons, i found that of all of the surgeons that had done the MVD procedure, none had encountered the Basilar artery as the offending blood vessel. ( The basilar artery is very thick compared to smaller blood vessels which are ususally the one's causing problems for most TN patients, so my case was always going to be complicated). During my 18 months of pain pre-surgery, i tried Carbamezapine ( didnt' work at all), Gabapantin ( didn't work at all), Trileptol ( didn't work at all) and finally Tegretol which worked somewhat, but i kept having to increase the dose all the way to 800 mg per day and that too would not control the pain all the time. Reoccurance happened every two to three days.

      Now to the surgery - I read and researched everything i could before deciding on MVD. All the posts i saw and based on my case, no other treatment seemed like it would be a lasting solution. Gamma Knife, Rhizotomy, Glycerol injections, Baloon compression etc, none of those according to my research and consultation with several surgeons were going to be a solution. MVD, although invasive, was supposed to be the only lasting solution to this horrible pain. Evey post i read , patients said they recovered in 2 weeks post surgery and were back to work with no TN pain. So MVD it was for me too.  Well, things unfortunately went wrong for me. The positive note is that the TN pain is gone so far. Praying that it does not return, however, during surgery, the surgeons decided to do a partial Rhizotomy as well. Rhizotomy is a tricky procedure and one really has to know what they are doing. My whole left side of the face is totally numb ( not just the TN pain area), which to me could mean that the surgeons took it in their own hands to damage much more of the TN nerve than they needed to. I also have a pulling sensation on that side of my face that lasts 24 hours a day and it's incredibly uncomfortable. I don't have a sensation of how to chew food on that side without it sometimes coming out of my mouth and is also a problem when drinking liquids. It's hard to explain but when you lose that kind of sensation, your focus on the basic things like eating and drinking has to be there and those activities that were second nature are no longer that. Smiling feels awkward as you think your face is swollen. I asked the doctors about this and their answer was " well, it's better than the TN pain right?" I don't know how to evaluate it. TN pain was severe and intense while it lasted and i would say was definately worse than anything i have been through, but this bears down on you 24 hours a day and it gets me exhausted just fighting it all day and concentration on work related activities becomes very hard.  Post surgery, i had severe headaches and was unable to sleep for several days on end, this lasted 3 to 6 weeks. Finally, the worst headache occured around May 12th, around 6 weeks post surgery. This headache was like an explostion in my head. I have never felt anything like it and i don't know how i didn't pass out, but i was taken to ER for it. They gave me Morphine, it did absolutely nothing, then i got two doses of Delaudid after that and after the second dose, they headace subsided by 70 percent, but returned to full flow 3 hours after i was released.  Next medication from the surgeon was a steroid . After the first day dose of the steroid, the headache was gone. The MRI report that came a few days later from when i was in ER showed a Pontine Infarct.  I spoke to the surgeons about it and they denied that there was indeed a micro brian stroke that occured. They took a stance that the radiologist was wrong in reading the report. I showed the report to another Neurosurgeon and two other radiologists and they all confirmed that it was a small stroke, most likely a result of something that went wrong in surgery. The explanation i got was that the basilar artery has several small branches of blood vessels that connect to the pontine area and also supply blood to the brain, and it's likely that during surgery, they accidently ruptured one of them which later resulted in the minor stroke that i had. Anyway, the surgeons continue to deny that happend and have really provided no support after the fact. They have not even set up future appointments to see how i am doing. During my recovery, they also refused to prescribe me any meds stronger than Tylenol 4. When  complained of post surgery pain, they wanted me to see another dept for pain management.  All of this happened with a well known surgeon at a major hospital in Texas.

      I just want people to know that before going through this procedure, ask every question imaginable, write notes of what they say. Don't get swayed by only reading experiences of people who have had 100 percent sucess with no side effects.  I understand that in some cases like mine there is no other solution other than MVD, but i think the surgeons should have clearly explained how bad Rhizotomy would feel and that they don't know if the nerve will ever regain full sensation or not. Also, the way they have ignored my following the pontine infarct that they caused should not happen to anyone.  Please feel free to ask me anything.

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    • Posted

      WOW, I thought I had a bad MVD. My heart goes out to you. I pray that you are improving a little each day. Well, I can not tell which procedure is causing all the pain. Before MVD, I had Stereotactic Radiosurgery with radiation(too much lateral damage). Here it goes. Weakness in chewing, numbness on the side that was treated, pain on that side, eye numbness(can not tell if I get poked in eye or not), inflammation/irritation of the eye, facial weakness, hearing loss(now there are bells chiming, train whistles, symbols playing, and swoooshing), double vision at times, hoarseness, my gait is off(balance), and difficulty swallowing(food gets stuck in my throat). All the side effects of lateral damage from injury to the cranial nerves.

      Now, as to the MVD surgery, All the same side effects, with the addition of "anethesia dolorosa" on the surgery side, which is pain over numbness. Oh... found out from a Facial and Oral Pain Doctor after all these procedures. My fault for not REALLY doing ALL my homework FIRST!  Anyway,  It started after staples were removed and he cleared me to return to work ("you can come back if you want the other side done"...REALLY!). So then I ask my med Doctor(Neurologist) about this condition, and he said, "it is the same thing as TN, just another name". WRONG. I wanted to tell him to read the book Striking Back and were you absent the day they went over that in Medical School.  So I left with a new drug to try, Lamotrigine 250 mg ER/day, with 25 mg as a kicker if needed. It has run its course, and here I sit writing to you as a tool for coping with this "monster".

      Sorry for the length of this. I hope it answered all your questions. If you have any of these side effects, please let me know so I can stop thinking it only happened to me. Oh, I had my done in Tucson, Arizona.

      God Bless,

      Greg

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    • Posted

      Hi Saaz,

      I am so sorry that this happened to you. I also had a MVD. Fortunately no complications, but it didn't take away my strong atypical pain. Now keep fighting with doctors to get more treatments. I feel that nobody really cares. I just called them that I need new medicine because I have so strong pain that I am suicidal. Nurse refuses to give to the doctor and said that he maybe calls back end of the day if he has time. That I come to hospital anyway 15th of September. I said that I have to live until 15th and with this pain I probably will kill myself before. Nurse was like ok and maybe doctor will call back. Like WTF?!?

      Is there hope that with some years sensation comes back? I had MVD in May. First I didn't feel half of my head, but now I feel little in some places.

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    • Posted

      I'm currently on Gabapentin and I'm feeling super depressed as of late and my pains coming back . What's your max dose of gaba and do the antidepressant helps ?

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  • Posted

    Hello Joanne,

    There are many other drugs and there will be one (or two combined) to suit you if you keep at the doctors to get off their collective bums and find them for you.

    I am on a combination of Tegretol and Lyrica. Tegretol was a godsend to me when it all first started then later my Neurologist suggested we add Lyrica. I have since had a Gamma Knife procedure which seems to have worked so for now at least I have no pain. Others on this forum will tell you what they are taking. Write it all down, take a support person along (it un-nerves the doc) and insist on something else. Many doctors are lazy it seems to me and prefer to just stick with what they have always used. Don't let them. Keep researching and asking questions. Don't just suffer anymore and think they know everything. Please stay with us on the Forum. There is much to know and learn here. I wish you a pain-free weekend.

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    • Posted

      Hello Valkyrie,How much mg of tegretol are you on and how many mg of pregabalin are you on? I am at present on 100 mg of pregabalin only and I am having a few pain free days but not enough.I may ask my doctor to put me on tegretol as well.I was on 600 mg of pregabalin but I was so spaced out I came off it,now building up to 300 mg.At 600 mg though I was pain free.Bliss.I have type 2. Cheers! 
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  • Posted

    Acupuncture sometime have great help with TN, Do you have neck problem same time? 
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    • Posted

      I think with this type of condition and the pain and anxiety that it causes, i totally understand how patients will try anything. I myself tried accupuncture.  Went through several sessions, almost $1000 worth and it didn't help at all. Not even a little bit.  Then i came to the conclusion that although the accupuncturist was trying to get to points in the nerve on my face to numb the shocks, there was just no way possible for him to treat the issue because TN is caused by a mechanical fault inside our body and specifically usually at the base of the brain where the TN nerve is being pinched by a blood vessel or a basilar artery. It's like two electric wires coming in contact with each other and sparks fly. No other way to fix it, other than (worst option - damage the wire / TN nerve ) or wrap it / seperate it with teflon as they do in the MVD surgery.

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