Confused and Frustrated!

I am really frustrated, scared, unsure what to do..... not even sure if what I have going on IS related to EDS. I've somehow become "everybody's else's problem" as far as my Dr.'s are concerned. I've been calling for weeks with symptoms that are slowly getting worse -it started with my face, a pain below my eye on my left cheekbone. So much pressure and discomfort. Then my left eye is in pain. A LOT of pain. Like shards of glass poking in there type of pain. Then my ear goes weird.(Also, left) Not too severe with pain, but itchy way down deep inside. Enough to bother me.... I've called my Dr. several times, and wait and wait and wait for the call back. And when they do, they call late in the day and tell me I need to call a different Dr. then THEM!!? "That this is my Primary's issue", or"it's my Rhuematologist's issue", or "I better call my Rehab Dr", etc. The other night I woke up with the most intense pain I've ever had in my neck ever!!! It was the sort of pain that made me vomit it was that severe. This is all going on my left side of my face and neck too. And the neck issue travels on up the back of my head. When it settles, like now, It hurts just to comb my hair! It now feels bruised after the night episode. Calling the Dr.s are getting to be useless. Finally I got one to call me back, at 5:00, and tell me that "Yes, you really need to be seen!!! BUT, they are closed. AND their schedule is full the next day. you need to go to an Urgent Care of your choice or the Emergency Room for Treatment"!!! Talk about pushing me off on everybody and anybody and making sure they document their charts to state that "they told me" I needed to be seen!!! Although not a one of them would see me? I guess I've never run into his before where I've suddenly just become the 'hot pototao' and I'm everyone else's issue. Although I just vented to you all....... I also have questions. Do any of these symptoms sound familiar to any of you? And if so, ARE they anything to stress or worry about? I was so upset about this I decided to just say "#@$%% IT" and didn't go in. I didn't bother. But, I'm sure if I'm up again with the pain that makes me sick....I'll rethink that strategy. I'm still stuck with a lot of left face and eye pain - so.....I am somewhat worried. Anyone have any ideas?? ..... I would appreciate any ideas or suggestions anyone could offer - ? Has anybody run into anything like this before? The fact that it's all the left side side of is somewhat concerning, although I have no idea what the significance of that would be?? I generally don't run to Dr.s that much for things other than my standard appts., so when something like this comes up, and then nobody is willing to see me........ I get so confused. I FEEL like something bad is wrong is all...... maybe I'm over-reacting hopefully.

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Hi EDS-Gumby,

I don't know how helpful I can be, but I want to give you a ((((HUG)))). I have not heard of symptoms like that.

I don't know if I am talking out of turn, but if I could share my thoughts with you. If you are having disturbing symptoms or pain to the extent that you are vomitting and your doctor(s) won't/can't see you, I would head to the ER immediately. I know this is probably making you mad since this is what the doc who passed you off said, but right now it is not about the docs and what their deal's about you, your health, and your comfort. By going to the ER instead of the Urgent Care, you have access for whichever specialist needs to be called in to assess and/or assist.

When the answer is found, or at least your pain is controlled, then address the issues with your docs. The challenge with EDSers is that docs are challenged by us and often don't know what to do. They hope another doctor knows what to do because they don't know. Hopefully a cause will be found at the hospital so that you know which doctor to address first.

I do hear your fear and frustration but I really would like you to get yourself cared for first since the doctors are not rushing to your aid. I am sorry it is that way, it is not fair, it is not how it should be. But right now you are in serious pain with unknown symptoms. Go to the ER more thinking and over-thinking...make sure you are ok.

Gentle hug...

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How are you? Have you seen anyone? The symptoms you describe are not familiar to me (sorry). Could it be a type of migraine? Let us know how you are. I read your post late last night & was too exhausted to respond, but wanted to let you know I'm thinking of you. I'm sorry you're going through this. ((hug))


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Just wanted to send {{{gentle hugs}}}! I agree it might be a migraine, but it would be very wise to rule out a potentially more severe type of event. Our pain usually picks the absolute worst times to hit us, but if you can, try to avoid the ER on evenings and weekends. That being said, if the pain is so severe that it's uncontrollable and you're vomiting get thee to a hospital asap no matter what day or time it is, in my opinion.

Feel better soon!

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I'm wondering how you're doing today. I'm so sorry you have been having such awful symptoms. I hope you have found some kind of relief!


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Hello there!

I, too, am sorry to hear about how you've been repeatedly "brushed off" by your MDs. This is a VERY OLD problem, for me, since I've had to develop a team of 15 different MDs/DOs/therapists to deal with me, since ONE 72 year old surgeon butchered my body, so badly, I'll never be able to work again, in ANY capacity! What you are describing, is a process I've been through, myself.

Though I have no way of being certain that what you are going through is due, exactly, to the same reasons as mine, I can at least guide you to the proper group of MDs/DOs to help address your issues. I'm partially paralyzed now, on the left side of my trunk, due to my surgeon's butchery. Since I no longer have functional "core muscles" on my left torso, they are no longer able to provide the "operational support" necessary to my left leg, when I walk or stand. As such, whenever I get severely fatigued, my left leg will abruptly buckle.

I've had two MAJOR falls, as a result of my left leg abruptly buckling. The last one left me with a concussion, post-concussive syndrome, whiplash, massively torn up shoulders and knees, and a giant "goose egg", on my forehead. Since I was wearing a Fentanyl patch at the time of my fall, I had no way of knowing how seriously I had injured myself. Thus, it took me 5 days to drive myself to the ER to get my acute headache checked out. I'm NOT prone to headaches, so I learned LONG AGO, that if they show up and persist, that something is VERY WRONG (when I was 28, it turned out that I had viral meningitis)!

The ER MD had a CT scan taken of my head. However, he neglected to inform me of what the results of that CT scan were. It wasn't until I ordered ALL of my medical test results that had been taken of me, from the past 3 years (to be sent to me, directly), that I finally learned what that CT scan showed. One of the things that it showed, was that I have polyps and/or cysts growing in my left sinuses.

I have SO MANY health care issues going on, that the fact that my left nostril has been "trickling out" steady amounts of mucous, for the past few years, has been entirely ignored by me. However, my body hasn't been ignoring a THING! As all of my recent bloodwork shows, I have all of the "classic signs" of someone with severe allergy issues. The growths in my sinuses are (probably) related to the allergy issues and plugged left sinuses, I've been ignoring, for years.

Thus, my PCP has referred me to see an ENT MD/DO. I have an appointment, this next week. I've had dust mite allergies, for years, and went through the whole series of allergy shots for them, many years ago. However, what I didn't know I needed to do to prevent MOLD allergies, was to do some extra maintenance tasks with my CPAP machine. Therefore, I feel fairly confidant, that my new MD will "discover" that I now have severe allergies to molds!

When my left sinuses are inflamed, they swell and press against my left eye and ear. This causes my left eye to have stabbing pain in it and my left ear tends to, internally, itch. It's rare for it to "blow up" into a full left-sided headache, but I do vaguely recall this happening a couple of times, in the past.

However, being the retired RN that I am, I'm ALWAYS aware that ***if I'm having severe pain AND vomiting at the same time***, it's something that MUST be dealt with, in an ED! They are the only ones who have strong enough pain medications on hand, to get my pain under good control, since I will no longer be able to take any oral medications (due to the vomiting). Inevitably, I'll need an IV to be placed, IV pain meds and IV anti-nausea meds given, then I'll be thrown out the door, as quickly as they can throw me. I've had a dozen kidney stones and two gallstones in my life, so I'm, personally, an "old hat" at the routines within the ER!

Therefore, I'd strongly recommend that you find your way into a highly reputable ENT (Ear, Nose, and Throat) MD/DO, ASAP! Between now and then, if you end up with a headache that leaves you vomiting, don't even BOTHER going to an Urgent Care Center, as they, too, will just tell you to go STRAIGHT to the nearest Emergency Department! Been there and done that FAR MORE TIMES than I EVER wanted or planned to! Best wishes to you!

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