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Treating Symptoms: neck, jaw, ear, cheek area

Messages
44
Hi all,

My first time posting and to begin with I must thank everyone on this site for selflessly providing such valuable information. It’s great to have a community with as much knowledge and experience as this to be able to interact with.

I will try to keep it short, and have bolded the main parts below, for those who don't need the backstory. I’m 25 male, diagnosed with “cfs” following EBV/Hepatitis/Splenomegaly. Original EBV diagnosis was 4 yrs ago. I recovered in 3 weeks but relapsed 2 months later, without a quick recovery this time. I couldn’t get out of bed for first 10 months and was diagnosed with “cfs”. I am still not back to working, but have progressed to managing short walks most days and spending 8 or so hours out of bed, broken up by periods of rest.

I usually only feel fatigue after exercise now, but have felt all along that ‘fatigue’ is not the most important symptom. It is a decrease in the severity of the symptoms, more than an increase in energy, that signals my improvement. Or, put another way, the less symptoms – the more energy.

I understand there are many ins and outs to the condition and much trial and error in treatments, so to start with I wish to keep it as simple as possible and seek advice for only one particular set of symptoms, which so far I have not found a clear way to treat.

The symptoms are numbness/tingling/throbbing/aching in the cheek, jaw, ear & side of neck area on both sides. I am sensitive to noise which can increase these symptoms, and when these symptoms are at their peak it can lead to fuzziness/fogginess in the head and inability to focus. When these symptoms are at their lowest I have no fuzziness/fogginess and have good brain function. The severity of these symptoms fluctuate each day, never disappear entirely, and are worse after exercise.

Things that may or may not be related here are my swollen glands, throat and tonsils. I’ve also read recently about the possibility of incorrect Vagus nerve function, which is in the same area. Whether those things are related or not is speculation, but at least it lets you know there area I am talking about here.

Does anyone have any advice into treatments/supplementation/drugs etc… that can help decrease these symptoms?

I have been eating what would generally be considered a very healthy diet. (Which of course, may not be quite as true for “cfs”, if only we knew…)

I have tried many different things already but there would be too many to list, so assume that I have tried nothing and feel free to mention anything that comes to mind.
 

SOC

Senior Member
Messages
7,849
@bootsydan, Valcyte was the only thing that made a difference in those kinds of symtoms for me. It the worst, the sides of my face would swell up like I had a bad case of mumps. I was without those symptoms for a couple of years, and they returned very mildly as HHV6 and EBV titres increased recently. Back on Valcyte again and the cheek/jaw etc symptoms are decreasing again.
 
Messages
44
@SOC

Thanks for your quick reply!

This from Valcyte's website is a concern: "Valcyte may cause cancer"
As is this from Cort's website: "Valcyte costs about $2,000/month in the U.S."

From the little research I've just done it's disappointing that once one stops taking the Valcyte, the symptoms come back. Equally however, most have very positive reports while taking the Valcyte, which is encouraging.

I'm glad you found something that helps and this is certainly something I will consider.

As Valcyte is an anti-viral, it seems at the very least to confirm the role of virus/es in the condition...
 

golden

Senior Member
Messages
1,831
i get numbness down my left face and left brain. my keft eyeball has gone numb in the corner and feels funny. This appeared after massive head pressure for weeks plus major disautomnia.... the head pressure was finally released slightly whenblumps appeared around my ear.

Doctors have mistaken mumps with me too.

it is my right jaw that causes pain and throbbing.

i have had some recent periods were it feels more normal.

i have flared my nostrils and pinched the tip of my nose whilst widening my eyes...taking in more oxygen and this brings a momentary release.

the same as gently opening my mouth and sticking out ky tongue - have to be very careful with my jaw though.

i have learned acupressure for face and scalp and when i shaved off all my hair i found i naturally kept on massaging my scalp as it felt lovely and soft - improves blood circulation. (but i only ever massage in one direction which is towards the heart )
 
Messages
44
@beaverfury

That is a very interesting story. I wonder if you can get that condition without having had a dental procedure, as I haven't since being diagnosed with CFS? Apparently it is caused by loss of blood to the bone. As blood supply in CFS can be affected, it might not be unreasonable to speculate that the bones aren't getting enough... I might take this info to my doctor, who holds the key to the scanning machines. I have previously had a bone scan which did not detect anything, but that was for back pain and I'm not sure if my jaw was included in that scan or not.

I have also been tested for Lyme, which came back negative.

Were the antibiotics successful for you?


@golden

It seems your symptoms are along similar lines to mine... Are there any acupressure points you have found beneficial?


Thank you both for replying!
 

SOC

Senior Member
Messages
7,849
@SOC

Thanks for your quick reply!

This from Valcyte's website is a concern: "Valcyte may cause cancer"
As is this from Cort's website: "Valcyte costs about $2,000/month in the U.S."
Lots of things, especially medications, can cause cancer. Sunshine can cause cancer. That's far from saying there's a significantly increased risk of cancer.

The cost is indeed very high. According to my insurance company, it costs $140 per day, which is more like $4000 per month at a usual dosage for ME. Insurance covers some of it, of course.

As with all other symptomatic treatments for ME, what works for one patient is not good for another. We all have to do the best we can with the illness and the resources we have.

From the little research I've just done it's disappointing that once one stops taking the Valcyte, the symptoms come back. Equally however, most have very positive reports while taking the Valcyte, which is encouraging.

Yes, Valcyte is not a cure for ME. There is no cure for ME. Unfortunately, herpesviruses remain in the body for the rest of your life. If your immune system is not able to keep it suppressed, which is likely with ME, then herpesviruses will continue to reactivate. That's the sad reality of ME until research comes up with a cure.
 

golden

Senior Member
Messages
1,831
@beaverfury

That is a very interesting story. I wonder if you can get that condition without having had a dental procedure, as I haven't since being diagnosed with CFS? Apparently it is caused by loss of blood to the bone. As blood supply in CFS can be affected, it might not be unreasonable to speculate that the bones aren't getting enough... I might take this info to my doctor, who holds the key to the scanning machines. I have previously had a bone scan which did not detect anything, but that was for back pain and I'm not sure if my jaw was included in that scan or not.

I have also been tested for Lyme, which came back negative.

Were the antibiotics successful for you?


@golden

It seems your symptoms are along similar lines to mine... Are there any acupressure points you have found beneficial?


Thank you both for replying!

hi bootsydan :)

i just learnee several systems over the years and now just use my intuition . It is rewarding when i get relief