so I have to tell you all this one, I went to the ER with sharp chest pains,nausea, dizziness, tingling in my arm,it hurt to breath. The nurse's hooked me up to all the monitors, I passed out for a few minutes so they say, and my neck had sharp pain on the left side. Also trouble speaking. I gave them my medical history, Lupus, Chari malformation, 5 cervical disc replacements, NOH, MS auto immune disease. I told them I desperately needed help managing my symptoms, 7 hours later, after a few test, a Staff DR came in and said,,,,, O' you have a phantom Migraine. I dismissed this so called conclusion by the nice DR and asked them to call my Primary MD. The ER DR said we would not bother him at this time. I could not walk either, but he discharged me anyway. What is wrong with this picture? I am in tears and so upset that they could just brush me under the medical rug so fast. Has anyone had experiences where no one seemed to care? I am lost, weak and sad. Where are we to turn when the health care systems Don't. Need some support please, thestorm😢😢😢
HEADACHES-uggggggggg: so I have to tell you all... - LUPUS UK
HEADACHES-uggggggggg
does anyone care out there??????? so sad.
Sorry you are feeling so low. Maybe you could contact your GP.
Cyber hug coming your way
I care. I care deeply. See my response below.
Dear Kelly, thank you so much for your heartfelt words, and the wonderful information you gave me. I will be researching all that you said, and finding another new Dr. in the future. I am grateful to you all. for you are all I have, my cyber family. hugs thestorm
Yeah I feel you don't worry your not on your own.
Hello,
I do not have full lupus, but a low lupus. So forgive me please if I overlooked or miss obvious clues that relate specifically to only lupus proper.
What I do have, is a very severe case of Anti phospholipid Syndrome. It is on the lupus spectrum, and is a form of lupus.
About 1in 4 or 1 in 5 lupus patients also have APS. ( Anti phospholipid Syndrome.)
I am recognizing many potential symptoms of APS in your episode. This sounds far more likely to be an episode of hypercoaguable blood than a phantom migraine to my layman ears and eyes.
Have you been checked to APS antibodies?
Balance problems, neurological problems, ( migraine extremely common, but I am aware the lupus headaches plague both diseases) aphasia, ataxia, chest pain ... all common with episodes of blood systemically too thick throughout body.
I enclose for you the following website. Have a read. It’s broken down organ by organ. See what you think.
I encourage you to bring it to your doctor ‘s attention. It’s very likely you have already been checked. Perhaps make sure, and maybe it’s time to check again.
All the best to you in getting to the bottom of what’s going on with you. ❤️
Did they run the battery of blood tests to rule out heart attack, CA occlusion with utrasound of neck or stroke with ct scans with and without contrast?
I wonder if you have considered the possibility of cervicogenic headaches yet? I ask because when mine first got really bad my husband called NHS out of hours and they sent ab ambulance. I was really lucky that the paramedic’s mum had Lupus/ Sjögren’s so he was used to reassuring her and understood me better.
We decided against A&E because we worked out that this was not a stroke so I’d end up sitting in bright lighting in uncomfortable chair half the night only only to be be sent home.
Anyway cervicogenic headaches are referred from the neck as it spasms and are iwhat I have apparently - the symptoms are pretty much as you describe. Also your Chari malformation and 5 cervical discs replaced could well lead to these awful neck spasm related headaches i imagine?
At first I was told these headaches were likely migraine and given migraine pills. But I knew from a neurologist who specialised in migraine that I’d be unlikely to develop migraine suddenly in my 50s. I had no vision changes apart from slight blurring and terrible photo light sensitivity and nausea.
Finally I was told by my neurologist and rheumatologist that these headaches were certainly related to prolapsed cervical discs, one slightly compressing my cord. Finally they stopped once I started doing regular neck exercises as shown by a physio and adopted better posture.
My GP prescribed Diazepam at high dose to take if they come back and so far I’ve had two days back in the dark, taken 10mg Valium before bed and woken up headache free.
Having read up some are more intractable than others. But it may be worth looking at cervicogenic headaches and also CSF leaks if you haven’t had these excluded already.
Thank you twitchytoes for all the great information you gave me, with a back story. I will be looking into your suggestions carefully too. When I finally do get a new Dr., boy will I have a list to give him. You all are a great wealth of information and medical insight. Sorry it is taking me so long to thank everyone, but symptoms keep me from my computer often. It makes my eyes and brain see things backwards or my RA stops me from typing well. I am thankful to have you all here in cyber land. Feel better yourself. thestorm❤
This is so sad, you have to percerve sweetie, I realise that it seems the odds are against you but you are important. Hoping you find the answers. Take care x
After being a Lupus & Sjogren's patient for 14 yrs at St. Thomas they are discharging me?!
Do I have lupus 
Taking my own advice
