hi everyone .my symptoms as ive described in several posts earlier are mostly the roof of my mouth and in my throat they burn and grind all th etime and it worsens after eating , so there might be a gastric problem as well that i believe was after a gastroenterologist dilated my esophagus ehen doig a routine endoscopy with no reason and i think that migh caused something on ES ( didnt know i had it then ) thepain is sharp and sometimes i gfeel like a needle in my throat and over salivation and pain on roof of mouth that even goes into my teeth ( ent told me that he could see in a laringoscopy video the eagle)ive taken oxcarbazepine , duloxetine and pregabaline but only each around for 5 days or so because i cant tolerate gives me headaches more reflux etc and now since anxious a dr prescribed lexapro ( only taken few days)which makes me shiver at night . the only thing i like about the pregabalin is that it would help me sleep besides the klonopin that. i take .im also experiencing chest pain when waking up and overall discomfort /feeling off. Does any one have had to try manu meds before finding one that helped ? ive heard of amitriptiline but never taken since.i already wake uo with a very dry mouth and since changed sleeping positiions now facing up im starting to breathe from mouth . cant now sleep on my sides immediately get a headache .Also does cervical pillows helped anyone? thank you very much for any guidance. i know jules and isaiah are always helping everyine but wante dto know if others had any experiences with somethimg that would ease the grinding sendation having something stuck .sending good energy to all
I will just input on the Lexapro because I take it but in a very low dose i.e. 5 mg at night. It’s possible your doctor has started you on a dose that is too high. How much are you taking each day? I’ve taken 5 mg for many years & it has worked very well without side effects, but I know we’re all different with what side effects we can get.
I take Amitriptyline for the nerve pain, I started on 10mg in the evening, and increased it to 20mg. I did increase it to 30mg after a bad flare but I did get palpitations on that level. I don’t know about the dry mouth- I have a dry mouth all the time anyway & had it before starting on Amitriptyline. Most of these medications take a while to build up enough to work, so 5 days isn’t enough to see if they’ll help really, but obviously if you’re getting side effects like chest pain then you don’t want to stay on them- I’m not sure if I’ve understood that right, if the chest pain is since you’ve tried the meds or if you were getting that anyway?
Sleeping propped up helped me, I used a wedge pillow, and also one of the V-shaped orthopedic pillows. I’ve never been able to sleep with one of those cervical pillows, too uncomfy!
Hi, I was not able to tolerate the drugs they give you for nerve pain but I have found that red light therapy/photobiomodulation helps ease nerve pain. D
thank you very much jules! Also do you happen to know any successful surgery doctors in the Chicago area?
I’m so sorry for the very difficult struggle that you’re in. There’s no doubt that this level of pain, discomfort and mystery can cause anxiety and be extremely challenging.
In my experience, there is tremendous variability with these meds and how different folks respond to them.
I have taken amitriptyline for what I thought was a low-dose (at 25 mg ) for years for sleep (That dose is possibly what has allowed me to go this long before finding my styloids). At one point my doctor did increase it and I had dry mouth and it was terribly uncomfortable.
I have taken gabapentin during this process as well. And I’ve mentioned before I have a love-hate relationship with that drug. (I’ve not tried Lyrica, but understand it is similar). I suspected that the gabapentin was also making things worse, ie the headaches, bloating (Also, making me very uncomfortable).
I am in the process of going down on gabapentin and hope to be off of it soon. And then I’ll know what’s what because I do have headaches and also have a challenging upper cervical spine to be reckoned with.
I believe duloxetine is also also Cymbalta… I took that drug a long time ago and I loved it for depression. I didn’t pay attention at the time that it was used for nerve pain… And I don’t believe I had significant nerve pain then.
And using gabapentin as an example, I needed something to help me at that time. And I was most grateful that it would help with my nerve pain. It has been quite difficult in many other ways… But at the time, and during I needed it and I’m glad I had it.
With your headaches two things that you could add to the mix if you aren’t already, one would be a hefty dose of magnesium (daily, religiously). I like natural calm, which is a powder form and I take about 500mg a day. I have also use Flexeril and baclofen which are muscle relaxers.
Regarding your pain, gabapentin is used for burning mouth syndrome… And is very effective for nerve pain, so if you can stand it, or Lyrica or Cymbalta, perhaps with some help added in for the side effects, maybe you can get to a point where you can get through diagnosis and treatment. 
This is the only doctor we have listed for Chicago at the moment.
•Dr Miloro, University of Illinois, Chicago 312- 996- 7640 http://hospital.uillinois.edu/Find_a_Doctor/Michael_Miloro.thm
There are several posts about Dr. Miloro which you can find by using the magnifying glass search tool & typing his name in the search box.
Dr. Cundiff is also listed but is outside of Chicago -
•Dr Jason Cundiff, 27790 IL-22 Ste 27, Barrington, IL, (847) 649-6000, (Does intra-oral and external surgery) https://theentcc.com
If you’re on the FB ES group, they may have other doctors that someone there could recommend.
Regarding the pain in the roof of your mouth, I experienced burning mouth syndrome before I knew about my styloids. It is one of the things that Covid can affect, and at that time I have not had at least a symptomatic case of Covid, but that was the only thing different that I knew of in my world anyway. Just an FYI Re Another possible cause (?).
That pain was reduced to nothing with gabapentin. If you can tolerate gabapentin, it might be a good way to get through this…to get health back before proceeding to surgery of any sort. I will give you the hints and tips that I figured out along the way about how it affected me in the ways I countered those side effects.
Also, if stomach is still a problem, the magnesium needs to be taken with some caution because too much can cause diarrhea. (I do not know what happens if you have gastritis). Any sort of probiotic you can get in your system whether that be yogurt with cultures, kefir, pills, if that hasn’t been cleared up from the antibiotics, your body needs some help with that for sure.
thank you Leah i was just prescribed gabapentin .what were teh side effects that you experienced? im taking o.5 lexapro and klonopin but today i woke up with a sharp poking pain on yj throat and i think mor than burning mouth syndrome(which it could be ) probably like i have a woulnd on one side of the rooff if my mouth the right side ( which i have most of my aches. i even now have trouble speaking and when moving head i almost feel like sand or clicking;/
i feel worst even after taking such a small dose of the lexapro in ony in my 6 day with headaches and what it seems to be more reflux but today that sharp stuck thing on my throat was very scary i wonder what oeul dbe thee best way to sleep pr if theres lidocaine or something .did you get surgery already? Did it help ?im terrified ab it i joimed also the fbk group and what i read seems like a horror story . everytime i eat 2 mins after i get this weird sensation between dryness grinding and extreme salivation and burn even if water so …;/ so ive lost a lot ofweight and wondering of related to eagle or separate gi issue
im back in the states figuring insurance and the general dr gave me gabapentin 3 times a day 100 mg and famotidine but im not sure if should take ppi yet i will consult w ent soon
thank you for all your advice!!!very much appreciated .feel like getting worse and worse .wonder if should stop lexapro since when started everything down hill. sending good energy your way
@Eli - If you’ve been feeling worse since starting Lexapro, you should stop taking it to see if you begin to feel better. You’re taking several different medications, & there may be some drug interactions taking place. With all your stomach, throat & mouth pain/burning getting worse after starting Lexapro, it doesn’t sound like a good medication for you.
Have you tried a liquid diet (I’m sorry I’ve forgotten). There are many commercially made protein drinks & protein powders that are high calorie or that can be mixed with something like full fat coconut milk that would give you extra calories. A liquid diet could be very helpful for you at this time. You can also make a healthier liquid diet by mixing greens like spinach, kale, collard, arugula, avocado, & fruit, in a blender w/ coconut milk, yogurt/kefir, or other non-dairy liquids & protein powder, in case part of your gut trouble is a dairy allergy. If you know dairy is ok then even ice cream or a non-dairy version could help slow your weight loss.
Have you tried lidocaine patches on your neck? @Leah has found those to be very helpful as I’m sure you’ve noticed.
I hope you’re able to get into an ES knowledgeable ENT VERY SOON!!
thank you ! im only taking lexapro 2.5 and klonopin so not sure perhaps is gastric issues as well or reflux either caused by gastritis or eagle itself . today i woke up with a very sharp stabbing pain on throat whoa thats was a first one dont know what to do in those cases , foreign object sensation .lidocaine Patches would be for only pain externally im assuming? otherd rd prescribed gabapentin but nervous to start anything now
thank you.
fabi
also jules mentioned a v shape pillow should help when sleeping do you min showing whcih ones are those?
thank you a million
fabi
Lidocaine patches can help w/ pain inside your neck, too. We have a number of members who have found them helpful to reduce ES symptoms before & after surgery.
Feeling like something is stuck in the throat & a stabbing throat pain are a classic symptoms.
Gabapentin is worth trying, but I’d start it after stopping the Lexapro since it hasn’t helped you at all. You may need to wean off the Lexapro i.e. take it every other day for a week then 3x the next week then twice the next then once after that.
Here’s a link for V shaped pillows. Amazon is a good resource for these:
https://www.amazon.com/s?k=v+shaped+pillow&crid=2TB79PAXXDWWD&sprefix=v+shaped+pillow%2Caps%2C207&ref=nb_sb_ss_ts-doa-p_2_15
Agree with @Isaiah_40_31 regarding tapering off Lexapro…
Regarding pain in throat, lidocaine patches helped with my ‘fork in my neck’ pain… not sure how far in the impacts are felt, but absolutely worth a try. You can get over the counter lidocaine patches at the drugstore.
Regarding gabapentin, since you are taking Klonopin, I would be cautious of adding gabapentin (and apologize for not connecting the dots prior). FDA has issued a warning about combining Gabapentin with other CNS (central nervous system) depressants for which Klonopin is one (and opioids after surgery).
FDA warns about serious breathing problems with seizure and nerve pain medicines gabapentin (Neurontin, Gralise, Horizant) and pregabalin (Lyrica, Lyrica CR) | FDA. (@Isaiah_40_31 and @Jules I am going to go back to my replies that note gabapentin and add this warning).
“Gabapentinoids are often being combined with CNS depressants, which increases the risk of respiratory depression. CNS depressants include opioids, anti-anxiety medicines, antidepressants, and antihistamines. There is less evidence supporting the risk of serious breathing difficulties in healthy individuals taking gabapentinoids alone.”
That being said, may be worth looking at cymbalta and amytriptyline … (not a doctor so only a suggestion to discuss with your doctor).
And agree with @Isaiah_40_31 on smoothies (include yogurt/keifer for help with gastric issues) and elevate while sleeping.
@Leah - thank you so much for being observant about drug interactions. I periodically check this online when someone lists a bunch of different meds they’re taking but didn’t in this case so your information is vital & most helpful!!
thank you leah and wendy very much
maybe thats why im feeling so bad even just lexapro and klonopin
The klonopin would help with anxiety and muscle spasms … not sure if it would help pain. And sorry don’t know about Lexapro. I would suggest trying Cymbalta instead of Lexapro as it is for nerve pain and used off label as an antidepressant. (Double check me but believe correct on that). Hoping relief is on way.
I’m a bit gobsmacked that no one told me about the gabapentin issue (figured it out after surgery). I definitely felt this problem. And felt it prior to surgery. Told prescribing NP that I felt I was having breathing issues (back in the summer). But was given no guidance on it.
Was told it was being used after surgery for pain and since I was already on it, I thought that’s fantastic, I will be in good shape. But I also take amitriptyline and of course was prescribed opioids after surgery. This is one area why I I think AI will be very helpful in the future. 