Ehlers-Danlos Support UK

Jaw and Throat Spasms

Over the last year I've had swelling on the right side of my throat with swelling in the face and neck. Recently this has progressed to spasms in throat, chin and now both sides of jaw with nerve pain in gums. I've had spasms in the body since early childhood. These spasms are in the larynx as well which are unnerving. GP has said we'll watch it... As far as I know I have hEDS; I am making an appointment with consultant as others have suggested. Any advice would be very comforting and appreciated.

17 Replies
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I forgot to mention that I'm new and have never posted... I would be grateful for ANY HELP 🌻

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Hi there and welcome🙋. I am sorry to hear you are suffering. You will find support on here. Everyone is kind and helpful.

Please follow up with your Doctor rather than 'wait for them to decide what to do next' if you feel the symptoms you describe are getting worse or causing you significant problems.I have found that we can often be forgotten if we don't take charge of our own 'health route'

The symptoms you describe may or may not be related to your hEDS, but hEDS is a connective tissue disorder and is multisystemic with comorbidities.

In my experience - and that of others- we have to educate our Doctors about EDS and steer them towards the appropriate tests and treatment that we need. Having an EDS specialist can help with this.

I have hEDS and associated conditions, as does my son.. We were diagnosed privately earlier this year by Dr Hakim in London. We saw many rheumatologists and various consultants before him who could not identify our many symptoms of this hereditary condition. We have found Dr Hakim to be excellent, offering ongoing help and support..

I hope you find a knowledgeable consultant who can give you the care you need. Best wishes xx

The HMSA is run by people all affected by EDS and HSD in some way. They can offer help and support. Dr Hakim is cheif medical advisor.EDSuk also offer advice and support.

Hypermobility.org

ehlers-danlos.org

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Thank you so much for reply and information Tillyray!

I agree completely and will be making an appointment with Dr Hakim. I have been seen by Dentist which is ummm we'll just say unsatisfactory. I was diagnosed in the states but ALL my noted were lost. So we begin again. 🌱

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Hey there and welcome :D Oh my goodness poor you, I agree with Tillyray, don't let them watch and wait, they'll forget. Are you being seen by ENT or a Dental Hospital? You need to get those symptoms checked and then you know what you're dealing with. Don;t let your Dr make you feel like a hypochondriac, if these symptoms are causing you distress they need checking out. Take care, I'll look forward to your posts. There are so many helpful people on here so feel free to ask anything. This and the fibro forum have been an immense help to me and in particular, Tillyray. I find there is much to be learned from those who have walked the path before you.

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Thank you Andrea Superstar, I used to be Superwoman... but unfortunately my body no longer agreed.

Muscle Spasms, IBS and dislocations seem to be the worst for me. But this rather new throat and jaw issue is worrying while it's in spasm, as well as painful.

I shall push on. Thank you 🌻

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Thank you Tillyray for reply. I agree, you do learn a lot from those on the same path. Also feel like you're not alone on the journey 🌻🌞

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I have EDS type 3. I have left sided throat spasms since I was 12. It pulls my trachea to the left and it feels like a peanut stuck in my throat. I had my tonsils,removed,as the Dr thought that was what was causing problem. I have had lots of surgeries due,to misdiagnosis in my life. Don't have,any unnecessary surgeries. Only cause u more problems . My face pulls. My gums hurt. Had wisdom teeth cut out at 18. Two other teeth were impacted and had those cut out. Caused nerve damage and edsers don't heal well. Stay clear from opiates and,benzo. Very addictive and withdrawal is hell. Opiates and,benzos,are now taboo in USA and Drs are not prescribing anymore. Good luck and God Bless

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Sorry you have the same problem Country4eva; it is comforting to know that someone else has exact same symtoms. Infact in this moment it feels like I have a terrible tooth ache where there is no teeth! I haven't had this problem long, I feel for you, having it since you were 12! I find if I cause pain on another part of my body, my mind concentrates on that pain and gum pain subsides. I Self-Reiki to try and relax throat. It's very unerving and feel like I can't breath.

What a way to live eh? 🌻

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Physical therapy on the neck helped alot

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Any movement on my neck is priblematic with spasms everyehere. Always something, but thank you 🌻

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Poor you. I do hope your GP refers you to an ENT specialist in your ares who understands hEDS. You can always google your local hospitals ENT departments, find the specialists names and google them to find out if they have an interest or training in EDS or genetic problems. Hercule Poirot eat you heart out! Remember you have the right to request your GP to refer you to a hospital/ Specialist of your choice. Take an active role in your health care as you are the specialist in you!!!

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Thank You Aishah50! I have requested this, bit knowing I have the right to will give me more strength when I ask again 🌈🌻

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Your welcome Honey. Gone are the days when Doctors were able to play like God. You know your symptoms and body better than anyone. Didn't realise my throat symptoms required input from an ENT specialist until I saw Dr Hakim. Feels like my throat is closing up, have nasal drip and hoarseness and change of voice at times. We have to be the leading person in our health care as often the GPS are stumped when presented with our myriad of symptoms. Remember they are into treating symptoms not cause. Unless your pathology presents in certain way they often dismiss you. Be strong, be calmly assertive and don't give up as this means you give up on yourself. There are so many lovely supportive people in this group that have your back in times of need.

xx

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Thank you again Aishah50, funnily I also have post nasal drip, hoarse voice and my voice cracks like a boy passing through puberty! 😄

I hope your day is filled with laughter and not pain 🌞🌈

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Aishah50, how did they help you with your throat spasms etc? '🌻

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Haven't yet. They are sending me to an ENT specialist.

I'll let you know when I get my appointment.

Xx

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I wish you lots of luck 🌻🌹😙

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