I became aware very recently that I had developed a problem with swallowing and also 'choking' at night at roughly the same time as my TN started.
Specifically, I seem to 'choke' on something at least once a day. At mealtimes something relatively innocuous seems to get stuck in my throat and when I try to swallow it's like my swallow impulse has stopped working, or working properly.
Likewise, every night I go to sleep and nine times out of ten I get woken shortly after, choking on my own spit. I cough and cough to no avail. It's annoying and a bit frightening.
It's not sleep apnoea. I'm not and never have been a snorer, nor am I (much!) overweight.
Has anyone else experienced either of these? I wondered if they are related to nerve damage or maybe side effects of Tegretol???
I did have problems with swallowing, but that was attributed to another condition I have, which is Arnold Chiari Malformation. This is a structural abnormality , which puts pressure on central nervous system.
I know this May not relate to you at all, just thought I’d put it out there.
Christine
I've had this for as long as I can remember. I've had a videofluoroscopic swallow study done as well as an esophageal manometry to measure pressure in my esophagus. It's obvious from the above that my esophagus doesn't work, but doctors don't know why.
I sleep on a wedge with a pillow on top. When it gets bad, I sleep with multiple pillows on top of the wedge. I also tell people if we're out eating together that my esophagus doesn't work and if I choke, not to give me the Heimlich maneuver as that won't fix the situation per se.
Hi Christine, thanks very much for the Chiari information. Having looked it up, it's not impossible that I may have a mild version of this. Certainly I have several of the symptoms. Any doctor ever confirmed to you that your TN is part of this problem, or related to it? It doesn't seem very far-fetched that brain-slippage, as it were, might press on the Trigeminal nerve too.
Christine said:
I did have problems with swallowing, but that was attributed to another condition I have, which is Arnold Chiari Malformation. This is a structural abnormality , which puts pressure on central nervous system. I know this May not relate to you at all, just thought I'd put it out there. Christine
Hi Student, I take it you have TN too? Has anyone ever suggested there might be a connection, or have you been investigated for possible Chiari, like Christine mentions?
studentNpain said:
I've had this for as long as I can remember. I've had a videofluoroscopic swallow study done as well as an esophageal manometry to measure pressure in my esophagus. It's obvious from the above that my esophagus doesn't work, but doctors don't know why.
I sleep on a wedge with a pillow on top. When it gets bad, I sleep with multiple pillows on top of the wedge. I also tell people if we're out eating together that my esophagus doesn't work and if I choke, not to give me the Heimlich maneuver as that won't fix the situation per se.
My neurosurgeon thinks my TN is more than likely caused by the Chiari Malformation. I had decompression surgery for the Chiari in 2003, and ever since that surgery, I would get burning, and a feeling of pressure in my right scalp, teeth, and behind my eye. It was always attributed to residual nerve damage from the Chiari. It wasn’t until almost 9 years later the burning boring and pressure became intense and chronic. About a month afterwards the shocks started, and within a year I had it on both sides.
FYI, Chiari is often Undiagnosed,misdiagnosed, or dismissed as being incidental, and not the cause of symptoms. If you suspect you might have it,try to see a neurosurgeon who treats Chiari patients. It took me six months and four doctors to get my diagnosis.
As always, I would be happy to answer any questions!
Christine
That sounds as if your Chiari Malformation surgery may have caused your TN, rather than the Chiari causing the TN? Is that what the doctors think, that the Trigeminal nerve has maybe been damaged either directly or indirectly by surgery?
Since you suggested it I've been having a good old poke around and at first I dismissed it. As usual with brain-related issues I didn't have the unsteady gait (how would I know on Tegretol? - hah!), headaches and so forth, but then I read that the symptoms sometimes don't present and it can be quite asymptomatic. I even came across a load of entries on Google for studies on TN along with Chiari where one said, I quote, "It is thought by some researchers that the link between Chiari and TN has been underreported".
I had been having dizzy spells long before the TN showed up, and trouble with acute insomnia, restless legs and various other symptoms from the type I list. They were just things I put down to incipient old age! But two things have made me wonder if there is more to this: 1) This new development of swallowing/choking symptoms happening every day and 2) when I was visualising my illness (trying to get some healing going!) I kept getting a picture that the problem was at the base of my skull, where it was bowing out/curved under, like it had 'grown too long' and was pressing on my brain stem (and causing CSF leakage!). I found that weird (I talked to Jane about it on here recently, and how insane it sounded) and thought it didn't mesh with the idea of TN = an artery wearing the nerve away.
Still, it doesn't give me much to approach a neurologist with. It sounds far too like "God told me to do it!" Maybe I could just bring it up as something that was suggested to me on a forum and mention the swallowing problems. That way I won't get locked up.
Christine said:
My neurosurgeon thinks my TN is more than likely caused by the Chiari Malformation. I had decompression surgery for the Chiari in 2003, and ever since that surgery, I would get burning, and a feeling of pressure in my right scalp, teeth, and behind my eye. It was always attributed to residual nerve damage from the Chiari. It wasn't until almost 9 years later the burning boring and pressure became intense and chronic. About a month afterwards the shocks started, and within a year I had it on both sides.
FYI, Chiari is often Undiagnosed,misdiagnosed, or dismissed as being incidental, and not the cause of symptoms. If you suspect you might have it,try to see a neurosurgeon who treats Chiari patients. It took me six months and four doctors to get my diagnosis.
As always, I would be happy to answer any questions! Christine
Yup, diagnosed with TN in November of last year. The swallowing/choking is thought to be an autoimmune disorder or connective tissue disorder. It's also my whole GI tract that has slowed motility, not just my esophagus. Chiari malformation has never been mentioned.
Ah, that's weird. When I first went on Tegretol I got chronic constipation. I know, people usually complain of things going the other way. But the weird thing about this constipation was there was absolutely no movement in my gut. I mean none, nil, zilch. There was just no impulse in it at all. It's improved now, so assumably it was just a medication issue, but a strange coincidence.
Sorry, that was perilously close to irrelevant, but maybe you should mention the Chiari Malformation thing to a doctor. If nothing else you can have fun looking at their blank faces. Nothing like an obscure collection of diseases. Ah... for the good old days of gallstones; everybody knows what they are!
studentNpain said:
Yup, diagnosed with TN in November of last year. The swallowing/choking is thought to be an autoimmune disorder or connective tissue disorder. It's also my whole GI tract that has slowed motility, not just my esophagus. Chiari malformation has never been mentioned.
Just to be clear, the decompression surgery for the Chiari did not cause the TN. I had a laundry list of symptoms including pronounced numbness, tingling, burning, gait disturbance, all on my right side, that we’re mostly resolved by the procedure. The TN is more likely due to the slumping of my brain into my spinal cord, along with my brain being too big for my skull!
StudentinPain- have you ever heard of Ehlers Danlos? It is a connective tissue disorder, often present with Chiari. Just a thought…
I had an MRI to rule out MS so I'm assuming that Chiari Malformation is also ruled out. Not sure if the MRI looked at that part of the brain though. I looked up Ehlers Danlos but I don't seem to have most of the symptoms. The original thought was scleroderma but while my ANA tier was positive, my individual titers were all normal. It's so fun having things wrong and not knowing why nor be able to be treated for it. <sigh> Maybe some day I won't have to worry about what I eat in public because I will no longer choke on food.
I have been told a Chiari Malformation can only be diagnosed with an MRI, not a CAT scan. My initial MRI was read as normal by the radiologist, and three neurologists. I was tested for MS, Lupus, Lyme disease,and a lot of other things. My symptoms were getting worse everyday, and none of the doctors could give me any answers.I had done a lot of research, and mentioned the possibility of Chiari to all the doctors, and they all dismissed my concerns. I finally had a family friend, who was a professor of radiology at a medical school, review my MRI, and he was the one that gave me the diagnosis, and told me to find a neurosurgeon, not a neurologist, who had experience with Chiari. After six months, I finally got to the right doctor, and had the surgery three weeks later.
It is very frustrating, and exhausting, to try to get answers, but I always felt there HAD to be an answer to what was happening to me. Try to hang in there!
I'm so thankful this question was asked! I am newly diagnosed with TN and started to have the trouble with my throat swelling but thought it was a reaction to the medications. After trying several different meds they decided it was the TN causing the problems and not the meds! I have learned the pain occasionally moves around from my cheek to my ear to my neck. It sometimes feels as though someone is actually choking me and my neck swells. My doctor said the pain and swelling in my ear can work into the neck since they are connected and are often in pain together. My prayers are with you.
That's interesting, Virginia. My pain's all in my teeth, so I'm thinking it's not likely connected for me, but you never know!
virginia girl said:
I'm so thankful this question was asked! I am newly diagnosed with TN and started to have the trouble with my throat swelling but thought it was a reaction to the medications. After trying several different meds they decided it was the TN causing the problems and not the meds! I have learned the pain occasionally moves around from my cheek to my ear to my neck. It sometimes feels as though someone is actually choking me and my neck swells. My doctor said the pain and swelling in my ear can work into the neck since they are connected and are often in pain together. My prayers are with you.
Oddly I am experiencing this swallowing thing as well I attributed to GERD- Tegretal is a bit of strange drug (calcium Blocking) but I do not think it is know to cause choking . You may want to talk to a an ENT
Hi Edster, thanks for the recommendation, yeah, the choking's a weird one, but I wonder if it's being caused by nothing more elaborate than me having to eat on one side of my mouth all the time, and bolting my food when I'm hungry! The choking at night is a bit more inexplicable. Just by the by, I think Tegretol works by blocking sodium channels, not calcium, unless I've missed something!
Edster said:
Oddly I am experiencing this swallowing thing as well I attributed to GERD- Tegretal is a bit of strange drug (calcium Blocking) but I do not think it is know to cause choking . You may want to talk to a an ENT