Desperate for help

General General TN & GPN (Old Site)
1

Hi everyone,

Thanks so much for accepting me into this group. Sorry in advance for the long post.

I have had this pain on the left side of my throat for a while now. Been ignoring it and try to push things ( food & liquids obviously) on the other side. Now the pain has increased and its frequency too. its unbearable.Its not a constant, permanent pain but more like a sudden stabbing electric shock. it just strikes out of no where. Cold foods trigger it and also crunchy bits. The attacks are agonising, I gagged numerous times like someone was strangulating me and it can last up to a minute. I have been to the emergency 3 days in the row - to be told nothing is wrong. They have run endoscopy to dismiss any foreign objects lodged, I have had a gastroscopy to eliminate any issues with food pipes. Xray, scans, blood tests, swallow barium. All came back normal. The MRI reports came back normal too. Every mouthful is accompanied with fear and anxiety that I will have an attack. I have been told "its just a scratch in the throat, we dont know what you ve got, it will go.." I have also been asked if I suffer from any mental illness, psychological issues ( like really im making this whole thing up!) Well, no it does not go and in fact this is getting worst. Its taken an immense toll on my life. I feel let down by the hospital, by the doctors..I feel misunderstood. My daily life is a nightmare at the moment, I drink with straw only, I chew my food to death to swallow easily and to avoid the pain to wake up (if it makes sense) I have lost 3 kilos just in 4 days. I only eat soft & hot food ( porridge overdose) Only room temperature water. For temporary relief, I have been administered xylocaine viscous which is a numbing gel to apply on the throat prior every meal. It seems to provide me with a bit of relief but I cannot do that for the rest of my life. Paracetamol liquid ( no tablets, too frightened to chocked with pain) does not do anything as it seems like a nerve pain. Anyone here in Sydney Australia can point me in a direction . Desperately need help. How did you get diagnose with GPN?

2

Hi Virginie- INHAVE read your post today and feel so upset for you. I am not a doctor but does sound as if your symptoms are well in the Gpn category. My journey with this strange affliction started about 4 years ago- referral to this specialist and checking that no teeth problems- meanwhile pain was unbearable and taking a lot of medication not really helping. One of the medications Tegretal I had a horrible reaction to and ended up in Emerg. Unable to swallow.

Imwas finally referred to a surgical neurologist - the diagnosis was not easy and it was recommended that I have a MVD ( decompression) had it in May and thank. God have no pain. I woke up from the op. And was able to clean my teeth without severe pain.

It is a complicated illness to diagnose and rare. The surgeon asked my permission to have my data and case be a party of a study which I agreed upon.

Be pro-active with the doctors- you can’t cope with pain like this

I live in Canada- toronto and had my operation at Toronto Western
Will be keeping you in my thoughts

3



hopeful said:

Hi Virginie- INHAVE read your post today and feel so upset for you. I am not a doctor but does sound as if your symptoms are well in the Gpn category. My journey with this strange affliction started about 4 years ago- referral to this specialist and checking that no teeth problems- meanwhile pain was unbearable and taking a lot of medication not really helping. One of the medications Tegretal I had a horrible reaction to and ended up in Emerg. Unable to swallow.

Imwas finally referred to a surgical neurologist - the diagnosis was not easy and it was recommended that I have a MVD ( decompression) had it in May and thank. God have no pain. I woke up from the op. And was able to clean my teeth without severe pain.

It is a complicated illness to diagnose and rare. The surgeon asked my permission to have my data and case be a party of a study which I agreed upon.

Be pro-active with the doctors- you can't cope with pain like this

I live in Canada- toronto and had my operation at Toronto Western
Will be keeping you in my thoughts
4

Hi Virginie

“hopeful” pretty much nailed it. Be proactive, don’t let you fool by some doctors. Our condition (GPN) is very very rare and one specialised neurologists or neuro surgeons are familiar with it.
It took me 3 years to get diagnosed with GPN.

I am not a doctor and the following is solely based on MY PERSONAL EXPERIENCE:
Drugs like Tegredol, Neurontin, Lyrica ect. are terrible things. I also ended up in the ER room. My pain only got worse and I had a load of terrible side effects. The only drugs that help me are Tramadol and Clonazepam … no bad sideeffects except beeing a little “high” for the first 2 weeks.
LIKE I SAID … ONLY MY PERSONAL 2 CENTS AND I AM NOT A DOCTOR.

Micro Vascular Decompression (MVD) helps about 70% of all patients. I had my MVD in August 2014 and it made things worse, BUT A LOT OF PATIENTS ARE PAINFREE AFTERWARDS.

I do not know any doctors in Australia, but if you can travel, your best bet is to go to the USA, they have amazing doctors over there (I can help you out with some contact infos). I had my MVD in Germany and the 2 surgeons there were very good aswell.

Anyways, start fighting this bloody condition because it can and will destroy your life if you don’t get cured … trust me, I know what I am talking about.

This forum is an excellent place to get info, contacts and discuss your problems with other sufferers.

The link below gives you an overview of the MVD and Rhizotomy surgery.

http://www.mayfieldclinic.com/PE-Glossopharyngeal.HTM#.VH4am0ekqrU

http://www.mayfieldclinic.com/PE-rVGN.HTM

All the best

Mike

5

Your story mirrors mine from 2006. It sure sounds like GPN. Go to a good neurologist or neurosurgeon who has dealt with GPN. MVD cured my problem, 2 years ago (for now), but it was a long road to recovery. MRI doesn't always show the blood vessel putting pressure on the nerve, and many MRIs aren't good to detect GPN. It can take a special coil, and your neurosurgeon might see it. My neurosurgeon's office told me they operate on the symptoms, not a study. It is certainly worth a try at medications for some relief. Good luck... I know how bad it is and you're not crazy.

6

Hi Virginie,

Sorry to hear you are having so many problems. Sure sounds like you are having classic GPN symptoms. Unfortunately, like others have said, this is a very rare condition and many doctors have not ever heard of it. Doctors can't diagnose what they haven't heard of so it is easier to label you as "crazy". I am really sorry about that as well. Fortunately, I had knowledgeable doctors who made the diagnosis from the very beginning of my journey. I am a physician as well as a fellow GPN sufferer. I really hate it when doctors make you feel as if you don't have real pain just because they lack the knowledge to diagnose it. If GPN were as common as trigeminal neuralgia at least a few more doctors might recognize it. But that is a whole other story for a whole different soapbox. Anyway, my personal journey took me through years of different medications without good pain relief. I had atypical GPN with constant pain with intermittent shooting electric pain. I understand very well what you are going through. It can be unbearable and you will do anything to make it go away. I finally had MVD on the right side with good pain relief. I did have several complications from the surgery, but it was worth it to get rid of the pain. For the past several months I have started having GPN pain on the left side so I suppose my journey is beginning again. I have a lot of hope this time because I know that it doesn't have to last forever. If need be, I will have the MVD surgery on the left as well but won't wait 4 years. Many people find pain relief with some of the anticonvulsant medications that are used to treat nerve pain or other medications such as antidepressants, etc. It can be a trial and error proposition depending on the person. The main thing is to find a doctor who is knowledgeable, empathetic, and can make the diagnosis which most times depends on a careful history. Don't stop until you find the right doctor. Be your own advocate. You are certainly not crazy but GPN can take over your life if you let it. You are certainly on the right track and I'm glad you found this forum. Best wishes to you on your journey. If ever I can help I would be glad to. God bless.

Rudianne

7

Thank you so much Hopeful, Mike, Vicdoc, KatyB for your responses and kind words. Words cannot express my gratitude and appreciation. In just a matter of two weeks - I feel that my world has been turned upside down, my life has been taken away from me. Finding this group and reading your messages give me some hope that there is light at the end of the tunnel. I have had some really down thoughts because of that over the last few days, as I said I feel so let down and misunderstood by the doctors. Australia is an amazing country in so many ways but unfortunately we are lacking in the medical/science field. I will keep you updated in my journey. Many thanks

8

Hi. I understand that you live in Australia, but if you are so desperate and willing to go overseas for an operation, I know this neurosurgeon, he is well known for his specialty in GPN surgery in South Korea. He had many patients who had had same symptoms as you are having now, and they are now pain free after surgeries. He can diagnose you by looking at this specially done MRI. (Im not too sure what the differences are between normal MRI and this one.) Please let me know if you would like his details. Hope you feel better soon.

9

I had several MRI's and nothing showed either. Finally, a neurosurgeon ordered the MRI with the (CONTRAST DYE). This MRI will allow them to look at all of the cranial nerves.

10

Hi Virgine! My mother has GPN and your symptoms and story are so similar!!!! She spent about 8 months going to her MD and then a throat specialist with the same exact results as you describe. Finally, in desperation, my father phoned the oldest, most experienced throat specialist in the town they had previously lived in and convinced them to give her an appointment. It was this wonderful man who realized that this was a neurological order called Glossopharyngeal Neuralgia and he referred her to a neurologist. As all the others have said, I'm no doctor. But I believe you should see a neurologist asap. Best of Luck to you.

11

Hi Virginie, Sounds like you need to ask your GP to provide a referral to one of the teaching hospitals to explore the possibility of GPN. The top three are all good. Once you get a neuro ask them about the GPN as a potential diagnosis. Explain the outcome you're after - which is a reasonable quality of life and the pain being managed. I'm pretty sure once you see a neuro they'll be able to give you a diagnosis or some pain management and discuss some treatment options with you. Keep in mind, it sometimes takes trial and error to find the right mix of medication or treatment to enable you to live the life you want, so hang in there. Getting the diagnosis is often the hardest part. Keep in touch and let me know how you go. All the best,

Smiley :)

12

do try acupuncture. although my symptoms weren't as severe as yours the acupuncture gave me some relief for a while. good luck.

13

My 2 cents on MRIs and getting told that one is crazy and your pain is not real.

Hi

I realized that there are a lot of stories about MRIs that did not show any nerve compressions or damage.

Furthermore there is a big problem with patients being told that they are crazy and have mental problems, just because a lot of doctors have no clue about GPN and nerve pain in general.

Regarding all these posts about MRIs and that nothing can be seen on most of them.

I had about 10 MRIs, before I did a "special" high resolution 3D MRI where my doctors could see a compression of the GPN.

First of all, most compressions or damages to nerves cannot be seen on an MRI because the "abnormality" you are looking for is way too small for the resolution of the MRI picture. It is like looking for the US flag on the moon with your IPhone camera.

There are some good MRI machines that take pictures at different angles and higher resolution and combine the pictures with 3D imaging software. Using such a machine will usually give you good results to visually identify the problem.

The next hurdle is that most doctors, even so called "specialists" have no clue about what they should be looking for on an MRI picture.

It is sad but most doctors are just useless if it is about GPN. Most doctors don`t even know that this condition exists.

Another problem is that most doctors have no experience with GPN and consult their textbooks. Most publications about GPN are a copy and paste version of some old book from the “stone age” and only mention ONE single GPN condition, which is the one with the temporary pain attacks. Permanent pain is not mentioned in most publications and there is the reason why it is so difficult to get a diagnosis, if your condition does not exactly mirror the textbook description of GPN.

A really good doctor/surgeon will spend a lot of time with you, talking to you and physically examining you.

Even if nothing shows up on an MRI a good neurosurgeon will perform a MVD or Rhizotomy surgery solely based on your symptoms.

I was told many times that my pain is not real and such a condition does not exist. I had surgeries with 2 different surgeons during the last 1,5 years. First the come up with a plan ... perform the surgeries according to their plan and if you are not fit by the end of the planed procedures, they tell you that you have mental problems and give up.

What I recently did, was to get myself thoroughly checked out by a psychiatrist who is specialized in pain symptoms. I attempted 10 sessions including a lot of talking, performing tests, hypnosis etc.

The result was … guess what ? ... I am not crazy and now I have a 7 page report including test results that clearly state that my pain is real.

The reason for doing this is, because when you are starting treatment with a new doctor, the entire Bla Bla Bla about mental illness and psychosomatic pain is off the table from day one.

I am telling you that this where the best spent 1000 Euro in my entire life.

Of course if you have mental problems and they are the source of your pain you will at least know what your problem is.

In my experience, doctors start talking about mental problems and psychosomatic pain as soon as they realize that they have no clue.

Just my 2 cents on MRIs and getting told that one is crazy and your pain is not real.

Get well

Mike

14

Hi Virginie

Your story and symptoms are exactly like mine before i had my MVD surgery. It took 5-6 years from the first painattack til i was operated. The bloodvessel was completely twisted around the 9. and the 10. cranial nerve. Since the operation in july 2013 i have been totally free of pain-attacks.

I have had a lot of sideeffects from the operation: paralyzed voicecord, paralyzed throatmuscles, no appetite, no sence of taste. But most important: NO PAIN-ATTACKS...... :-D

Best wishes and hope for your future

Brian

15

Hi Virginie,

Your symptoms sound almost exactly like what I experienced my first go round with GPN. Don’t give up hope and believe in yourself. Some advice for what it’s worth.

  1. If you have to - puree your food so you can eat! I was down to pudding, warm beverages, Ensure (fortified milk product), gummy vitamins (dissolved in my mouth), and baby food. Don’t let yourself become weaker because you’re not getting the proper nutrients.

  2. Make sure that you have at least one Dr on your side, Primary Care Dr is fine. If not, change Drs.

  3. Print out some research papers to have on hand for discussions with your Dr. The following website is a great resource.

http://www.ncbi.nlm.nih.gov/pubmed/

Some other good ones are:

Mayo Clinic
http://www.mayoclinic.org

University of Pittsburgh Medical Center
http://www.upmc.com/Services/neurosurgery/Pages/default.aspx

Mayfield Clinic
http://www.mayfieldclinic.com/PE-Glossopharyngeal.HTM#.VH_eMGK9KSP

NSPC
http://nspc.com/index.html

All in the US, but a good starting point. There are probably equivalent research or teaching hospitals/clinics in Australia and you could try them too.

  1. I would do a search for Neurologists in Australia and don’t be afraid to search many miles away from your hometown. You want someone who specializes in Neuralgias (Trigeminal, Hemifacial, etc). If you are still having difficulty finding someone, try searching for some of the Drs listed as contributors to research papers. I have seen several in your area of the world, I just can’t remember who. The first link, to nih, will be the best help for that purpose.

I wish you the best of luck. I too went through the ‘this is in your head’ and ‘try to be aware of when you are stressed’, Phooey! They truly have no clue!

16

I just wanted to thanks everyone who took the time to share their experiences and stories with me. It has certainly provided me with hope and given me some perspectives. All the best to all of you.

17

Oh man. I feel for you. I've had constant pain pain near the base of my tongue for over 6 years marked by horrific spikes into unbelievable 10/10 pain. The only reason I'm skeptical it is glossopahryngael neuralgia is it also feels like it cramps. This hands down the most painful thing I've ever experienced.

I also have a history of mental illness (depression, anxiety). I really hope you don't have the history. If you don't, go to a psychiatrist and see if you can get your 'mind' approved of by society. It would really help to have social confirmation you're not a 'crazy.'

If you're like me, and not at all crazy, but had had depression since I was 7 and some social phobia since I was 13. I don't want you to give up, but here's what I'll tell you why:

I've found things that helped. The first so far for me has benzodiazepines (valium specifically). Most doctors will not prescribe this substance anymore for any reason due to the DEA. However, if you find access to a medication like this, I want to warn you it is horrific to discontinue even small doses. I was prescribed it for some time, and then the doctor suddenly decided I was either a 'drug seeker, a crazy, or my pain wasn't real enough' to justify to the DEA and cut off cold turkey. Episodes for hours, every single day.

The second one that has helped me is duloxetine and I'd imagine probably by extension the tryclics. I only found this out after researching on the internet pain management and requesting it specifically. Doctors have tried to give me anti psychotics, SSRIs, buspirone, thyroid meds for the throat pain, you name it. I had to be very proactive to get any help, and I've been left out in the cold more often than not. During an episode, I went to the ER and was told, 'this is an entirely emotional issue, there is nothing physical occurring' and then sent to the psych unit.

If you can get 'social' approval like Rush Limbaugh then you can use or abuse any drug you want. If you have th social capital, use it before it's too late. Cause you will likely end up horrifically depressed, potentially suicidal if this condition isn't treated.

18

Hi Virginie,

Sorry to hear about all your pain and I hope reading some of the replies have helped. I always found that reading other people were going through something similar made me less scared, because at the start like you, I had NO idea what was going on NOR did my GP.

I could have written your post, in fact I think if you search for my posts you'll probably find it from 3 years ago. Since then like you, ALL my MRIs came back clear and I have been bounced from "specialist" to "specialist" here in the UK and it was getting seriously frustrating having all these tests and a throat biopsy last year (which in hindsight didn't help one bit). My GP was at a loss because she had no idea what was wrong with me and I just felt like because everything was clear, the medical profession were starting to think I was making it up!!

It took ME going onto FB to a forum on there and asking for anyone in the UK to email me their specialist names. I researched one in London and then asked my GP to refer me to him. That was this summer, and in October he FOUND an artery wrapped around the GPN nerve. He's offered me the MVD and after lots of mulling over, I've decided to have it in February. S**t scared as it doesn't always work and the horror stories are horrendous, but anymore horrendous than dealing with this pain all the time? (I don't have attacks, I just have pain all the time). So basically, although lots of ENT specialists in the last 3 years have suspected it was GPN, it wasn't until this October that the REAL neurosurgeon (not an ENT, they can't help!) finally confirmed it.

Anyway so what I would say to you is take control of this from the off. Troll forums and this website for people with this condition near where you live, get the name of their specialist and get your GP to refer you straight to them. If not, your GP will choose the nearest ear, nose and throat specialist which will be sympathetic but ultimately no use to you. GPN is VERY rare so you need someone who has treated and dealt with it specifically (or TN). Get lists of medications that have worked for people with this condition and have your GP trial you on them. With no disrespect to GPs out there, it is not their area of expertise and they grapple with invisible symptoms so the more you can help them with your own research, the better it will be for you. That's what I've learnt in the last 3 years and I wish someone had told me that when the symptoms first manifested.

In terms of medication, Tegretol and amitriptyline have helped me but they don't work for everyone.

Best of luck and keep on here, it will help!

Amanda xx

19

Thank you Rudianne for your lovely message.



Rudianne Thomas said:

Hi Virginie,

Sorry to hear you are having so many problems. Sure sounds like you are having classic GPN symptoms. Unfortunately, like others have said, this is a very rare condition and many doctors have not ever heard of it. Doctors can't diagnose what they haven't heard of so it is easier to label you as "crazy". I am really sorry about that as well. Fortunately, I had knowledgeable doctors who made the diagnosis from the very beginning of my journey. I am a physician as well as a fellow GPN sufferer. I really hate it when doctors make you feel as if you don't have real pain just because they lack the knowledge to diagnose it. If GPN were as common as trigeminal neuralgia at least a few more doctors might recognize it. But that is a whole other story for a whole different soapbox. Anyway, my personal journey took me through years of different medications without good pain relief. I had atypical GPN with constant pain with intermittent shooting electric pain. I understand very well what you are going through. It can be unbearable and you will do anything to make it go away. I finally had MVD on the right side with good pain relief. I did have several complications from the surgery, but it was worth it to get rid of the pain. For the past several months I have started having GPN pain on the left side so I suppose my journey is beginning again. I have a lot of hope this time because I know that it doesn't have to last forever. If need be, I will have the MVD surgery on the left as well but won't wait 4 years. Many people find pain relief with some of the anticonvulsant medications that are used to treat nerve pain or other medications such as antidepressants, etc. It can be a trial and error proposition depending on the person. The main thing is to find a doctor who is knowledgeable, empathetic, and can make the diagnosis which most times depends on a careful history. Don't stop until you find the right doctor. Be your own advocate. You are certainly not crazy but GPN can take over your life if you let it. You are certainly on the right track and I'm glad you found this forum. Best wishes to you on your journey. If ever I can help I would be glad to. God bless.

Rudianne

20

Thank you for taking the time to share your story with me Amanda, very helpful.



I have had 3 acupuncture sessions in a week - I have to admit it has provided me with some relief. I am still nursing my baby at the moment so any heavy medications is a No no for now anyway.



All the best for your surgery, will be thinking of you. Keep us posted x









granadam said:

Hi Virginie,

Sorry to hear about all your pain and I hope reading some of the replies have helped. I always found that reading other people were going through something similar made me less scared, because at the start like you, I had NO idea what was going on NOR did my GP.

I could have written your post, in fact I think if you search for my posts you’ll probably find it from 3 years ago. Since then like you, ALL my MRIs came back clear and I have been bounced from “specialist” to “specialist” here in the UK and it was getting seriously frustrating having all these tests and a throat biopsy last year (which in hindsight didn’t help one bit). My GP was at a loss because she had no idea what was wrong with me and I just felt like because everything was clear, the medical profession were starting to think I was making it up!!

It took ME going onto FB to a forum on there and asking for anyone in the UK to email me their specialist names. I researched one in London and then asked my GP to refer me to him. That was this summer, and in October he FOUND an artery wrapped around the GPN nerve. He’s offered me the MVD and after lots of mulling over, I’ve decided to have it in February. S**t scared as it doesn’t always work and the horror stories are horrendous, but anymore horrendous than dealing with this pain all the time? (I don’t have attacks, I just have pain all the time). So basically, although lots of ENT specialists in the last 3 years have suspected it was GPN, it wasn’t until this October that the REAL neurosurgeon (not an ENT, they can’t help!) finally confirmed it.

Anyway so what I would say to you is take control of this from the off. Troll forums and this website for people with this condition near where you live, get the name of their specialist and get your GP to refer you straight to them. If not, your GP will choose the nearest ear, nose and throat specialist which will be sympathetic but ultimately no use to you. GPN is VERY rare so you need someone who has treated and dealt with it specifically (or TN). Get lists of medications that have worked for people with this condition and have your GP trial you on them. With no disrespect to GPs out there, it is not their area of expertise and they grapple with invisible symptoms so the more you can help them with your own research, the better it will be for you. That’s what I’ve learnt in the last 3 years and I wish someone had told me that when the symptoms first manifested.

In terms of medication, Tegretol and amitriptyline have helped me but they don’t work for everyone.

Best of luck and keep on here, it will help!

Amanda xx