How long did you suffer without meds?

General General TN & GPN (Old Site)
1

I guess everyone's experience is different but I'm wondering what is the maximum length of time I'll be able to go without meds. I've had TN for 17 years without taking meds, but there were only two really painful episodes and plenty of pain-free periods.

My GPN was fairly mild and confined to one area of the throat for 4 years, but over the past 9 months it has moved out to the lower jaw, ear and back of throat, while becoming a lot more painful. Also, there haven't been any days without pain and it's becoming difficult to get a good night's sleep.

2

Hey Nomad, sorry to hear about your GPN pain apparently gaining in severity. My pain was not alleviated by any painkillers prescribed me until the correct diagnosis of GPN was made. That for me was 4-5 years but each episode was met with a morphine shot which killed the pain instantly (via Paramedics)Once my GPN was diagnosed, Tegretol (Carbamazepine) was prescribed and that certainly stopped any pain attacks but sadly also stopped my full time job, driving and any real form of life, as it tended to leave me in a dribbling, confused state. My MVD was successful and, for me, the relief was immediate. All the best Nomad, hope it gets sorted

3

Your story is very reassuring Kiwi survivor. How old were you when you had MVd please?

4

I was around 37 when the first pain attack occurred and had the MVD when 42.

katyB said:

Your story is very reassuring Kiwi survivor. How old were you when you had MVd please?

5

Hi Nomad,

I am 55 years old and I have had the pain (right side only, involving tongue, jaw, ear, throat and my voice singly or in some combination) for the past 8 years although it was only correctly diagnosed 3 years ago. In the beginning an episode would last 2 - 4 weeks but they have gradually lengthened and my last one lasted 7 months and the current one has lasted 2-1/2 months so far. At its worst the pain is 10/10 and a spasm lasts about 90 seconds (combined shocking/burning/stabbing sensations). At other times the spasms are shorter (5 to 20 seconds) and vary in intensity from 4/10 to 9/10. I've tried gabapentin and amytriptyline to address the symptoms and also hydrocodone to stop the pain. In my case none of these drastically reduced the frequency or severity of spasms and all made it impossible for me to do my work as a university lecturer. Right now I am simply dealing with the pain with no medication. I have had to stop teaching my local classes and resort to online teaching techniques only. While I can train myself to "absorb" a lot of pain it takes a lot of energy and becomes the focus of my life. I am investigating the surgical option right now. My wife has been a wonderful source of support and I am very thankful for her strength through all of this.

I am sorry to hear that your GPN affects your sleep. Thankfully mine is apparently inactive while I'm asleep. If I can find a position in which I can go to sleep without triggering a spasm I usually sleep several hours. During the worst times I have used an over-the-counter cold medicine like alka-seltzer to help me get to sleep. I am quite susceptible to any drug that makes you sleepy and so this helps me fall asleep more quickly. It does nothing for the pain, of course, but it reduces the time period in which a spasm will keep me from falling asleep.

Best of luck in dealing with your GPN. I have found this site to be very helpful for information and it helps knowing that you're not the only one facing this kind of trouble.

-John

6

Did your pain start out at a high level, or gradually increase as mine has?

KiwiSurvivor said:

Hey Nomad, sorry to hear about your GPN pain apparently gaining in severity. My pain was not alleviated by any painkillers prescribed me until the correct diagnosis of GPN was made. That for me was 4-5 years but each episode was met with a morphine shot which killed the pain instantly (via Paramedics)Once my GPN was diagnosed, Tegretol (Carbamazepine) was prescribed and that certainly stopped any pain attacks but sadly also stopped my full time job, driving and any real form of life, as it tended to leave me in a dribbling, confused state. My MVD was successful and, for me, the relief was immediate. All the best Nomad, hope it gets sorted

7

The level of pain has always included very hard 9/10 or 10/10 spikes. What has changed over the 8 years is the duration of both individual spasms and episodes of activity. When it first started each spasm only lasted a second or two to perhaps 5 seconds. I thought I had a bone or something lodged in my neck the first times and that it was jabbing me. Now the worst spasms last about 90 seconds while most are 5 to 20 seconds approximately. The episodes of time when I have spasms have also increased in duration from 2 - 3 weeks 8 years ago to a duration of several months now.

-john

8

That's bad news about the job, John. I was laid off and effectively forced into retirement a few years ago, so that isn't a problem for me. In any case, apart from two days when I was hopping around clutching my throat and sticking a finger in my ear for short periods, the pain has never been bad enough to stop me working. But, as you noted, the pain does tend to become the focus of one's day if you let it.

I was something of an insomniac before the TN and GPN, but pain is definitely making it worse. I have to exercise in the afternoon, read for 2-3 hours and take Tylenol before I can sleep

John said:

Hi Nomad,

I am 55 years old and I have had the pain (right side only, involving tongue, jaw, ear, throat and my voice singly or in some combination) for the past 8 years although it was only correctly diagnosed 3 years ago. At its worst the pain is 10/10 and a spasm lasts about 90 seconds (combined shocking/burning/stabbing sensations). At other times the spasms are shorter (5 to 20 seconds) and vary in intensity from 4/10 to 9/10. I've tried gabapentin and amytriptyline to address the symptoms and also hydrocodone to stop the pain. In my case none of these drastically reduced the frequency or severity of spasms and all made it impossible for me to do my work as a university lecturer. Right now I am simply dealing with the pain with no medication. I have had to stop teaching my local classes and resort to online teaching techniques only. While I can train myself to "absorb" a lot of pain it takes a lot of energy and becomes the focus of my life. I am investigating the surgical option right now. My wife has been a wonderful source of support and I am very thankful for her strength through all of this.

I am sorry to hear that your GPN affects your sleep. Thankfully mine is apparently inactive while I'm asleep. If I can find a position in which I can go to sleep without triggering a spasm I usually sleep several hours. During the worst times I have used an over-the-counter cold medicine like alka-seltzer to help me get to sleep. I am quite susceptible to any drug that makes you sleepy and so this helps me fall asleep more quickly. It does nothing for the pain, of course, but it reduces the time period in which a spasm will keep me from falling asleep.

Best of luck in dealing with your GPN. I have found this site to be very helpful for information and it helps knowing that you're not the only one facing this kind of trouble.

-John

9

Ah yes! The GPN dance with variations! Mine usually includes lots of hand-waving. Quite amusing for our cats I'm sure. It also tends to cause my vocabulary to be supplemented from what I normally say.

<<GRIN>>

-john

Nomad said:

That's bad news about the job, John. I was laid off and effectively forced into retirement a few years ago, so that isn't a problem for me. In any case, apart from two days when I was hopping around clutching my throat and sticking a finger in my ear for short periods, the pain has never been bad enough to stop me working. But, as you noted, the pain does tend to become the focus of one's day if you let it.

I was something of an insomniac before the TN and GPN, but pain is definitely making it worse. I have to exercise in the afternoon, read for 2-3 hours and take Tylenol before I can sleep

John said:

Hi Nomad,

I am 55 years old and I have had the pain (right side only, involving tongue, jaw, ear, throat and my voice singly or in some combination) for the past 8 years although it was only correctly diagnosed 3 years ago. At its worst the pain is 10/10 and a spasm lasts about 90 seconds (combined shocking/burning/stabbing sensations). At other times the spasms are shorter (5 to 20 seconds) and vary in intensity from 4/10 to 9/10. I've tried gabapentin and amytriptyline to address the symptoms and also hydrocodone to stop the pain. In my case none of these drastically reduced the frequency or severity of spasms and all made it impossible for me to do my work as a university lecturer. Right now I am simply dealing with the pain with no medication. I have had to stop teaching my local classes and resort to online teaching techniques only. While I can train myself to "absorb" a lot of pain it takes a lot of energy and becomes the focus of my life. I am investigating the surgical option right now. My wife has been a wonderful source of support and I am very thankful for her strength through all of this.

I am sorry to hear that your GPN affects your sleep. Thankfully mine is apparently inactive while I'm asleep. If I can find a position in which I can go to sleep without triggering a spasm I usually sleep several hours. During the worst times I have used an over-the-counter cold medicine like alka-seltzer to help me get to sleep. I am quite susceptible to any drug that makes you sleepy and so this helps me fall asleep more quickly. It does nothing for the pain, of course, but it reduces the time period in which a spasm will keep me from falling asleep.

Best of luck in dealing with your GPN. I have found this site to be very helpful for information and it helps knowing that you're not the only one facing this kind of trouble.

-John

10

I went about 5 years prior to finding any effective medication. During that time I had constant pain and occasional spikes into the 10/10 beyond comprehension level. I was constantly dealing with suicidal thoughts and almost gave in multiple times.

By the end of it I couldn't speak, eat, or do pretty much that stimulated the area at all as all of them would trigger episodes. I've found medications now that are helpful but have lost access to both at various points due to issues with doctors/insurance at a few points. When the medications are withdrawn the average pain increases to prior to base line levels, as the brain and body develop dependence on any functionally altering medications (anti depressants, anti convulsants, etc) and when going through withdrawal the episodes are triggered daily for hours at a time. The worst period I hadn't eaten or slept for a week and was near death.

To be honest, at this point I can't survive without the medications now, as the withdrawal process triggers the episodes so I have to try to plan ahead. I often take less medications than ideal, so I can have a buffer. for the next time a doctor or insurance plan could take away my medications. I view my dependence on medications similar to how a diabetic is with insulin. My body does not function effectively without them.

To be honest the only thing I've really learned from getting this illness, is it is physically impossible for strangers to care about your health as much as you care about it. Only you are suffering. They can't feel the pain, they don't have to go without food, they don't have to live life as a mute, and the strangers in your life, it's just a job where they get paid and try to improve their own lives. Strangers care a lot more about how things relate to themselves than how they relate to your well being.

I definitely hope at some point there will be free access to medication for everyone so humanity will be free to choose both the most effective and affordable solutions without insurance or having strangers making blind decisions. No one should ever have to go without effective medications for any reason, and no one has the right to judge what is effective for pain since pain is subjective and there are no objective tests.

11

Right now, duloxetine is very helpful and they want me to pay 300 dollars for a single generic bottle unless I get better insurance.In a market where permission neither doctors nor insurance is needed the price could be below 20 dollars. Having all of these middle men trying to profit from my illness makes me sick. I have no idea why anyone should need permission from strangers and middle men just to treat health conditions.

Maybe not in my lifetime, but I hope one day people will be allowed to read the exact same scientific journals and buy their medications in an informed, and self sufficient manner. People would be able to try every medication and find ones that work quicker without having to ask strangers who are expected to magically know what works for you, and when we find thing that work we need permission and then pay through the nose.

No one should have to go through what I've gone through. I've had near death experiences countless times that were unnecessary and I've had to do a lot of things that no one should have to do. For me at least, the pain at the base of my tongue is a treatable condition, I think this is likely the case with many people. Its' a blessing, so long as as no one is interfering with treatment.

12

Thanks, Kuchak. Sounds like you were in a lot more pain than me right from the get-go. I've only seen neurologists twice. The first one didn't offer me anything for the TN pain, but said, "Vitamins might help," as I walked out the door. The second one, who I saw about relatively mild peripheral neuropathy, gave me Pregabalin (Lyrica) without informing me of the potential side-effects and failed to diagnose GPN when I described my symptoms.

13

Yeah, I've learned a lot more about side effects, mechanisms of action in specific medications, and neuropathic pain at this point by doing individual research, sadly.

I've never been fully informed of the side effects of any medication I can recall being prescribed in my entire life by any doctor. At 7 I was given lithium, which caused life long thyroid problems. All throughout my life this pattern has repeated.

I am currently dependent on a medication that the FDA has given warnings about withdrawal effects:

http://www.drugwatch.com/cymbalta/withdrawal-symptoms/

The manufacture is being sued in a class action lawsuit for withholding clinical evidence in trials. Now I'm aware of all of this, because I take this medication to control pain, but I'm not fully in control of this. Doctors and insurance companies have more say in this matter than I do at this point. People without insurance pay twice as much for the same medications.

None of my doctors had considered neuropathic pain or recommended me seeing a neurologist prior to me doing some individual research as well. Doctors would recommend exclusively the wrong kind of anti depressants that have no effect on nerve pain. I had to research the issue myself in order to gain access to this medication and then convince someone else to prescribe it.

In the age of the internet, we are likely more equipped to research and maintain our health than strangers, but if we that's 'self medication.' If someone looks for affordable medication outside the prescription/insurance industry that makes you want to pay through the nose, then you break the law by buying 'illegal drugs.' I'm fed up with ill people suffering.

Self education and self medication is the way to go. If doctors, insurance companies, or pharmacies feel it is in their best interests that you you should suffer, then that's what happens. No one should have to suffer needlessly, be poorly informed, or at the mercy of anyone else when ill.

But no one should have been discriminated against because of the color of their skin either. Positive change to any establishment isn't possible without at least some people getting shot and taking the fall. It might be me one day, if I can survive my illness in the first place. They should teach medical science in primary schools so we can all have medical educations and assist in diagnosis and treatment. It'd be a lot more useful than a lot of the junk they teach, but I'm sure people would find some objection to that as well.

14

Hi Nomad, I have had GPN for 18 years and there is no time that I have been able to go without medication. I tried stopping but the pain started to come back. I have cut down as much I could during periods of no siezures but had to increase drastically if the seizures came back which happened on average about every 12 to 18 months.

Regards Phil (chips)

15

Hey Phil

Are you serious? GPN for 18 years!!? Why so long? Have you had an MVD?

Michael



chips987 said:

Hi Nomad, I have had GPN for 18 years and there is no time that I have been able to go without medication. I tried stopping but the pain started to come back. I have cut down as much I could during periods of no siezures but had to increase drastically if the seizures came back which happened on average about every 12 to 18 months.

Regards Phil (chips)

16

Hi Phil. 18 years is a long time! But your pain seems to have been way worse than mine right from the start. Currently, I don't have any pain-free days, but the pain isn't really that bad and it has specific triggers rather than just occurring randomly.

chips987 said:

Hi Nomad, I have had GPN for 18 years and there is no time that I have been able to go without medication. I tried stopping but the pain started to come back. I have cut down as much I could during periods of no siezures but had to increase drastically if the seizures came back which happened on average about every 12 to 18 months.

Regards Phil (chips)