Symptoms affecting my head!! Upper jaw, throat and scalp.

[Horsewhisper]

Hi there, anyone familiar with the following? I’m being driven a bit bonkers with them at the moment and a bit of help would be great. Diagnosed with UCTD in April after being symptomatic for many years. For the past year, I have constantly had a pulsating feeling along the whole of my upper jaw, it is clear enough to count my pulse with it! Drs have not addressed it so far (MRI scans of head & neck with blood dye, were clear). I have it all the time. Also have episodes where I have trouble swallowing food & drink and have to eat really slowly. This is coupled with nighttime choking, where I sometimes awake unable to breathe or swallow. Dr said not sleep apnea (not overweight, neck measurement 14”) Finally (and this is a bit odd!) from time to time I get this creeping scalp feeling where it feels like someone is pouring a thick fluid very slowly over my head!! Any suggestions would be appreciated, thank you.

[panda2]

Hi Horsewhisper,

I can't account for the choking, which sounds just dreadful! But the strange sensations, like you mention with the fluid do affect me from time to time. I get water drops and occasional pouring water on the skin sensations, intermittent twitching - sometimes jumping - muscles everywhere including the jaw on 2 occasions. I'm UCTD also. I saw a Neurologist first because of the sensations and tingling toes and fingers. He explained that connective tissue diseases can creep into the nervous system and overlap with odd symptoms/sensations like this. I'm hoping our treatment will lessen these, but I'm still in the early stages of trialling so can't say from experience just yet.

There must be an answer about that choking though!

Panda x

[Horsewhisper in reply to panda2]

Hi Panda

Yes I get the twitchy muscles, for no reason my leg or arm will jerk out unexpectedly. My hands sometimes feel like I’ve stuck them in a bed of nettles, they tingle/sting so much. Sometimes I feel like I’ve been stung in the feet and hop about looking to swat a non-existent wasp! Interesting to hear about CTD overlapping with these kind of sensations, at least there is an explanation. It would be useful to hear about drug trialling outcomes as & when you have them. Thanks for the info.

Take care

x

[Hidden]

I just started feeling water spots and water running down my legs when none is there. Have been waking up gasping and trying to get a non existent gum eraser out of my throat too, just had a tooth extracted and have felt gums pulsing at night. Your post sounded so similar. I am taking meds for Parkinson’s and thought maybe from that?

Having other strange feelings too . Not very helpful for you, but at least someone understand s. Am trying relaxation techniques. Good luck.

[Horsewhisper in reply to Hidden]

Thanks CKingPs, at least we are not alone with dreams of strange things stuck in the throat! Mine include a giant blueberry, a velvet gem bag and a fishing weight (not all at the same time). I will mention to Neuro next time as it needs looking into, interesting to hear other similar experiences, I don’t feel so alone now!

[Lupiknits]

I have the pulsing sensation which showed as "nothing significant" on MRI so I've just sort of ignored it ( I have found certain head positions which make it more obvious).

The choking and swallowing is how my CTD started. Unfortunately I ignored what seemed to me to be acid reflux for a long time. Keep an eye on your weight and report if it drops. I take a large dose of omeprazole daily, which helps, and have adjusted to small soft meals, nothing after 8pm. Waking up with the choking is, I know, very scary. Check this out with your GP and Rheumy because blood tests could show systematic sclerosis might be a possibility.

I don't get the trickling feeling though!

[Horsewhisper in reply to Lupiknits]

Thanks for the advice Lupiknits, I will get this checked out with GP and Rheumy appts at end of July. I have dropped half a stone since April, I am normal weight for height and age and haven’t changed what I eat, just eat slower and have less interest in food. Interesting to hear pulsating sensation returned nothing via MRI, same for me too. Will keep you posted.

[Lupiknits in reply to Horsewhisper]

If you notice anything harder to eat than others, best cut it down. Please mention the weightloss. I've ended up seriously underweight. Trying not to be gross, but if the symptoms get to the point were food sticks in you oesophagus and can't seem to get into your stomach, so you have to regurgitate it, tell them very insistently. If that gets so bad you can't seem to even get water through, go to ER. The water problem has never happened to me, but I have been advised to treat it as an emergency. Dehydration happens fast.

Hope they can help you out.

[Horsewhisper in reply to Lupiknits]

Ok will mention and thanks for the advice, very much appreciated.

[Bebe76]

Do you have very tight jaw muscles? I have a pulsating feeling in the back of the neck and base of the skull. In my case I think it is due to having extremely tight neck muscles. I have back issue to and I get the same pulsating sensation in my back when the muscles are very tense/tight.

[Horsewhisper in reply to Bebe76]

Hi Bebe76, I don’t think my jaw muscles are tight, but they may well be. I try and do yoga relaxation exercises a few times a week which include head/face & neck stretches, I’ll see if there is a difference next time. Thanks for your suggestion.

[Krawlins]

Hi there, for years when I returned to work after chemo and radiotherapy I found I got pulsing hot pain in my top and bottom jaw, so grating and felt hot and nerve like, I had lots of tests including checking for salivary gland blockage, nothing ever showed up. It would be worse if I got stressed and after years I realised if I drank a lot of water it might subside so then I started connecting it to being dehydrated and to stress, I would often get it when I had to go on reception to cover lunch, I never liked being on reception and it did aggravate my symptoms. It was relentless, I visited the dentist thinking it must be a tooth/teeth, had everything x-rayed, where i was told i had two very deep fillings and though dentist didn't think there was anything wrong with that, I asked to have the root fillings instead- still no change, at my wits end I eventually asked him to pull out two teeth, in hindsight this was a stupid decision but i was desperate.

I will never know what caused it because I still had the same pain after having the teeth pulled, for many years; once i learned to drink more and avoid stressful situations it did eventually improve. I do though get the creepy, crawly feeling on my scalp and on other areas of my skin, again I think its nerve related as in a type of neuropathy. Sometimes on my left cheek it feels like I've an ice cube stuck to it, this lasted for a couple of weeks. Like you, I used to wake up choking and I notice when I'm dropping off the back of my throat relaxing and I'm now on lansoprazole which has slightly improved how many times this happens in the middle of the night, its a frightening experience isn't it.

Please keep us posted if you ever find out what that might be, I was borderline on one of my thyroid blood tests so they repeated it a month later and said that one was ok? I am diabetic type 2 by the way.

Good luck in finding an answer.

[Horsewhisper in reply to Krawlins]

Hi Krawlins

Thanks for sharing your experiences with me, not very nice for you to have gone through all of that but helpful to me to read about it. Jaw/teeth wise, I’ve not had any fillings or dental work, the pulsating feeling started last summer when I had an acute flare of multiple symptoms probably precipitated after a bash to the head. Head scans etc, all clear, so haven’t bottomed this out yet and the pulsating is there all the time.

About the choking, this started 6 years ago and a scope of nose & throat by ENT didn’t reveal anything. GP put it down to anxiety, which I poo-pooed and just got on with it. Having looked at replies it looks like something possibly autoimmune related. Yes such a horrid thing to experience in the night, I have now learned not to panic and force myself to take a breath, which isn’t always easy!

I will mention these symptoms to GP & Rheumy at next scheduled appts in a months time along with the scalp creepy feeling as this could be neuropathic too. As recently diagnosed, I am early on in my treatment pathway, on 200 mg hydroxy daily and 75 mg aspirin to help with brain fog. Thyroid and blood sugars normal. Thanks again & I’ll let you know any outcomes.

[Lorska1]

On the choking front..... do you get heartburn or constipation regularly? Just a thought, but I got the choking and it turned out to be Gastro Paresis because my stomach wasn't emptying properly amounts other things.

Hope you get it sorted as it's very frightening when it's happening to you xx

[Horsewhisper in reply to Lorska1]

Thanks Lorska1, no I don’t have heartburn or constipation, but interesting to hear how it can impact on choking.