I have not had family with Alzheimer’s, but I have had friends with family members with Alzheimer’s and it’s a devastating disease! You know my good thoughts are with you all on these diseases that devastate families!
I had a good time at the Komen Walk, but knew there would be a cost… It rained so the barometric pressure is higher and I’m having a very bad week so far! Good news, it can get better, but realistically this is a terrible time of year for me. My head hurts so bad I don’t know what to do and I don’t even want to talk about my ear, sleep or breathing out of my right nostril. Only 10 full days until neurosurgery appointment, but have to go through ENT department one more time. I won’t comment on ENT, but suffice to say I’m not a fan!
I feel like crap and could literally vomit of I spin around one time, but I am amazed at how resilient and forgiving the human brain is. Every year around this time I feel exactly this bad or worse, but somehow forget each Summer period when the barometric stabilizes. If this is the final season of this level of symptoms I will be very happy to be done this madness! I get very annoyed when I’m having so many symptoms I can’t work and today was one of those days… Just a bit of venting… Hope everyone is having a decent day! I sincerely hope tomorrow is better, but the ENT is certain to aggravate some nerve tommorow. Not looking forward to it.
Hi DeeG -
I hope the only “nerve” the ENT irritates tomorrow is your “funny bone”. Talk to him about your cranial nerves & how ES affects them (can irritate at least 6 of the 12 i.e. facial, trigeminal, glossopharngeal, hypoglossal, accessory, vagus). Let him know you’re aware that they, along w/ vascular compression (internal carotid artery &/or jugular vein are most common), are what cause the diverse symptoms of ES. These nerves exit the skull near the attachment point of the styloid processes & thus are vulnerable to irritation if the styloids are elongated or stylohyoid ligaments are calcified. If you go in w/ solid knowledge on the subject, you might get him to raise an eyebrow because of your knowledge which could be very satisfying for you. If he totally dismisses you or accuses you of reading this on the internet, you can smugly know you’re better informed about the body than he is & that he is ignorant of some very important medical facts of which he should be more well informed.
You can Google the above named nerves if you have time & look at their courses through the body. Seeing where they “reside” will help you understand the cause of at least some of your symptoms.
Thinking of you & hope that your ENT apt goes surprisingly well! Let us know how you get on, hugs to you.
I will. Apparently, it’s audiology and vertigo test. Probably will not have to sit through the reading of 10 years of notes and restatement of symptoms, thank goodness. Maybe they won’t touch my neck at all. This is looking up every moment…
And, even though I don’t feel well I feel better than the weekend.
It was surprising, but I’ll let you decide if it went well…
Audiology went as expected. Left ear perfect and right ear, not so much!
Then after a very long stay bin the waiting room because they forgot me, I saw the ENT. The nurse asks me if I’m still on my Sjogren’s medication? What, who, when…news to me. Even though I’m being seen by neurosurgery and there are notes in the file this doctor wants to start all over with diagnosis. I told him to hold off until I get my CTA before he schedules me (meaning never) because I’m not going to an ENT another 10 years! He knows of an expensive, self-pay treatment I can try, a type of PT that may help, so on, etc. It was free advice and that’s what it comes down to. It was interesting to find out I supposedly have Sjogren’s… Any thoughts?
DeeG
I still think it’s worthwhile pursuing definitively whether or not you have ES. The CTA should help with that if they scan the correct part of your neck (i.e. hyoid bone to skull base). Make sure that area is being looked at.
I’ll let Jules talk about Sjogren’s as she is more informed about that than I am.
I have symptoms of Sjogrens, but not diagnosed. They did blood tests, which were negative, apparently can be in 30% of patients. Next step of diagnosis would be a lip biopsy, I decided against that in the end as I didn’t like the sound of that & the medications for SjS either, my symptoms are manageable. (I have dry eyes, mouth, skin etc. The tiredness & aches & pains have reduced alot through changing my diet)
Everyone’s different though, so would depend on what symptoms you have whether medication might be right for you…I think it’s got to be linked, not that ES has caused SjS, but maybe the inflammation the styloids caused made the immune system go into overload?!
Ben’s Friends have a site for Sjogrens too, so yiu could have a look at that & see if anything rings a bell (SjS can be a primary autoimmune disease, so you can have it by itself, or secondary so there may be another AI condition as well…how weird though that they never mentioned this diagnosis to you!
I agree that the priority is to get the CTA done, & see about getting ES sorted.
Thanks, I am all over this ES diagnosis. Different ENTs at the same facility have given me the following diagnoses: ETD, TMJ, possible thyroid disorder, Meniere, atypical Meniere, endolymphatic hydrops, Sjogren’s, chronic Otitis Media, vestibular neuritis and possible perilymph fistula. 8 days to my CTA…
I agree! I’m not going overboard on measures to fix dry mouth when I think it is the medicine for HBP that came on with the increased symptoms of 4-5 years ago. So far Salagen works fine with few side effects.
3 more nights until my test and I’m ready! I just want information so I can move forward. That’s not too much to ask… Rainy days are not fun, but I’m hanging in there!
WOO HOO!!! That is indeed exciting news! I’ll be praying for clear results & a definitive diagnosis.
Yes, Grandbabies make a HUGE difference! Very excited for you!!!
I was also DXd with Dysautonomia and Autonomic Neuropathy ! I also feel like I have a leak but on nthe good side of my head. I see light coming from behind but there is no light behind me. Is that one of the symptoms?
dharmadel,
ES can cause symptoms that mimic many of those that come w/ dysautonomia & autonomic neuropathy. I’m not saying you don’t have those, but if you get an ES diagnosis & end up having surgery, there’s a good chance some of the bothersome symptoms from those two diagnoses will go away.
As far as the lights you see go, I had a weird eye thing happen that was unrelated to ES. I saw flashing lights but they looked like shooting stars which I saw out of the “corner of my eye”. It turned out my vitreous humor was separating from my retina (not an uncommon event for peri-menopausal or post-menopausal women). I had noticed a lot of floaters in that eye the month before the light show started. A retinal tear can occur during the separation process, but in my case, that didn’t happen. One month after the first eye went through that process, my other started up. SHEESH! The journey lasted about a month for each eye. I’ve had no eye problems since then, & the separation of the vitreous humor from retina did not affect my vision.
I know that Intracranial Hypertension can cause visual disturbances, not sure if the light thing is down to that or not…
I’m good. Sitting here waiting to be called for CTA. Listening to Imagine Dragons. Thought I was going to crochet, but looks like hook fell out in car. Oh well… Music is fine for me. I will update when I’m done. VerIfied CTA was head and neck, but she said orders never specify provocative position. There is a 3D scan available.
Not griping because I worked over to make sure I didn’t use leave today, but how can on reasonably wait in good cheer for a doctor who is an hour past time? Maybe he will have a diagnosis for me then it is all happy face reviews!
We’re lucky in the UK to not have to pay, but waits of that long & more are common- a good book is definitely called for!
I was going to crochet, but left hook at home so I listened to music. Finally, newly diagnosed as patient with ES. Doctor said he talked with ENT he is referring me to earlier in the week and the doctor stated he hadn’t had an ES case recently. Crazy enough, that doctor tried to put me on more BP meds 3 years ago. I told neurosurgeon and he said he will send notes to his ENTs office with diagnosis and reason for referral to avoid another rescinded diagnosis and run around. I’m official now… I didn’t want to have to find another forum and “get to know” new people, but who knows, when I’m better I might like people and noise and the chaos of life more!
HOORAY!!! VICTORY IS AT HAND! You have a diagnosis (for better or worse), DeeG. Now you can move forward toward recovery!! GREAT JOB hangin’ in there!!
