Strange "Flash" symptoms, heavy cape wash feeling

[phalo]

Came online searching for some advice. I was recently diagnosed with Sjogren's and symptoms haven't been as intense over the past few months on Plaquenil. Had a bad night's sleep last night and woke with intense migrane, everything spinning, blurry left eye, really dry eyes, numb & tingly forearms, dizziness, nausea and vomiting after I tried to take tylenol. Slept for half the day and now feel about 85% normal besides a dull headache. Has anyone else experienced these symptoms or should I be encouraging my rheumatologist to be be further investigating?

I wonder if it had an issue to do with the little sleep that I got and my dry eyes constantly opening all night- affecting the brain, REM? I definitely don't think these episodes are cold or flu related.

I haven't found much research on Sjorgren's flashes, cascading neuropathy, inability to speak, motor skill problems, and balance problems during these flashes. It feels like a wash or heavy cape overcomes you and your vision, with a lot of light sensitivity. You're sitting there trying to shake it off. I feel like I'm having a stroke. I definitely feel my ailments are a neurological-immune related issue. And it comes and goes suddenly, depending on if I've had a long day, ate thai food (that apparently uses a lot of fish sauce/MSG, or because of light sensitivity. My rheumatologist doesn't seem to acknowledge my symptoms.

[Reanne]

Do you think you could have had a stroke?  It's so hard to tell what is wrong, especially when your doctor doesn't seem to be listening to what you are saying.  I have trouble sleeping sometime.  When I usually get headaches is when I haven't slept the night before and I sleep "hard" (if that makes sense).  The neuro said it as migraines, but the pain is in the back of my  head, not one sided.  It feels better to sit up and not move at all.   I don't remember light bother me, but sounds certainly do.  The neuro also said any schedule change can cause them.  I hope you find some answers.  Don't give up.

[irish]

My first thought also was that you could have had a little stroke. I would see your doctor and get this assessed as it sounds like more than a run of the mill "flare" issue.

Any time the vision is affected assessment is needed plus the neuropathy issues of arms, etc. I am wondering if you have ever seen a neurologist and if not I think I would find one ASAP. Good luck. Irish

[P.Trish]

Do not want to scare you, but 3 yrs ago, I had the cascading neuropathy symptoms before sjo dx. Had MRI - no stroke evidence ( but TIAs - very tiny strokes) do not show unless the MRI or CT scan happens during the event. However, they found an 'incidental' brain aneurysm. Neuro confirmed this had nothing to do with my symptons. It was coiled, stunted & I went  my merry way back to teaching & my usual life , but the continuing cascading sent me back to the  neuro who sent  me to the Rheumotologist & the beginning of the autoimmune saga. No meds were ordered, yet. Cascading  symptoms continued. 2 yrs ago, I had a stroke - 2 very sm clots to the brain. It affected my right side, some numbness, but I count my blessings that my limbs still function. Now, of course the drs think it was all sjo-related.

Sorry for the long tale; my point is: try your very best to get to a neuro, just to be safe. Also, many of  us have similar symptons & it definitely doesn' mean you are at risk for a stroke. I hope you feel better soon!

[Winnie]

Phalo

I have had a similar experience at night for the past several years and when I asked my doctor about a stroke, he brushed me off.  My symptoms were a burning , choking feeling in my throat that caused me to sit up or I felt like I couldn't breath.  My heart would be pounding and my left I would do this twitch and temporary vision loss until I became aware of my surroundings. 

I am 90% better in the last 4 months.  The only thing I did was got food allergy tested and took out foods that I was intolerant to.

If all of your neurological tests come back ok, then check out allergies.

Best of luck

Winnie 

[Scottietottie]

Hi

I have a couple of friends who experience what you describe but they are due, in their case, to migraines. They don't have SjS. I would definitely get your migraines investigated further in case they are not Sjogren's related. Trouble with Sjogren's is - it doesn't stop us suffering from other stuff as well.

Take care - Scottie 

[quietdynamics]

phalo  I had a similar episodes. My 1st episode was an entire summer and ER tests showed, no stroke. In fact the second time when the ER gave me the release paper, I went to sign them stating I had not received proper medical treatment..lol. Drs. were not happy.

3rd episode I went to a different ER more thorough work-up and they considered admitting me. A neuro was called.  I have been under his treatment ever since. I take Topamax, med for seizures in people who have epilepsy and used for chronic headaches, not necessarily Dx'd as migraine. The neuro sees me every month, I keep a headache diary and he has also tested for muscle weakness and handles my sleep disorder.
He is not a specialist in SJS and is open to the information I take in.

Each ER visit did check for stroke. That is the number one must do at the ER, along with heart attack.

If you do a search in the upper right of this forum page for "headache" and "migraine" there is information. On the web you can search " sjogrens headache"


I would follow up with a Neurologist. My best to you

[Joe S.]

I think that you should see a doctor also. It reminds me of a severe migraine. My TIA's are usually oriented to my left side and bring loss of control, drooping face. The one that happened in front of the doctor, dropped me to the floor. Please get it checked out.

[phalo]

I followed up with my rheumy, he said he thought it was vertigo and tossed a prescription at me. (when I first spoke to him on the phone he said that I should come in as soon as I can. He may need to do some bloodwork, or it may be related to Sjogren's or could be something else.

Ignored when I kept asking him about my numb arms (feels like electrocution going down my fore arms) and the vision issue and that was slightly off and light sensitive the next day.
Waiting for an appointment with NYU's Hospital for Joint Disease next month, I REALLY hope they will put forth the effort into research and 'helping' their patients. 

[quietdynamics]

 
phalo..I got the "Vertigo" suggestions also, when this first happened, which did not in any way explain neuro symptoms, and during 2nd event my eyes dropped on their own from the 12 o'clock position to 5 / reset and dropped again, could not add single digits. That was the visit to the ER where when they wanted to release me after stroke and heart attack were ruled out I was began writing on the form that "I felt my life was compromised and I had not received proper medical treatment/evaluational".   

I won't rehash my other post.
Look up Mayo Clinic Chronic headaches. Also, I do believe that these episodes and  prior to my current treatment they lasted for months, they are CNS based, inflammation

From in depth research I have learned that 5% of pop. has SJS or that 5%, 20% report CNS ( of the description we have) General Drs. will not know this and even Neuros' will not so I take the info to them. So really the chances of a Dr. coming across patients like us is slim, and they go on their medical experience.. this is really a small specialty area..even for Rheums

I do take a 81mg (baby aspirin dose) coated generic brand aspirin at bedtime. And it has helped.
Keep a journal, it really will help YOU learn your triggers and how to pace yourself.

Again the Neuro is has given me the most help in something like 10 years.
iraisin posted re: CNS on this forum.