I’m 20 F and I was diagnosed almost a year ago with lupus, but I can’t figure out if these episodes I’ve been having are related to lupus.
For almost two years I’ve been having these episodes once or twice a month where my whole body stiffens especially my left side (I can’t squeeze my hands or move much), I’m extremely confused, I stare into space, I’m unable to understand other people like the words get confused in my head, my heart speeds up, my face twitches sometimes, I’m nauseous, I drool, and if I’m exerting even a moderate amount of energy I “collapse” or faint and I’m so exhausted I can’t move for an extended period of time but I’m awake like I can hear everything. Before these episodes I often have a headache in the back of my neck and head.
After these episodes I’m often nauseous and tingly on my left arm, hand, and back. Usually I can remember most parts of the episodes.
I have had a CT scan and MRI during one of my first episodes over a year ago and showed no signs of a stroke. I have been to the ER several times for them and they don’t seem to have a concrete reason. One suggestion was hemiplegic migraines but that didn’t seem like the full answer.
I was looking into seizures and that could seem to be an answer. I take 200 mg of hydroxychloroquine and 4 mg of prednisone and that doesn’t seem to affect these episodes at all.
Any answers are appreciated!
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arpurce
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Those episodes sound really scary. Have you been referred to a neurologist? These neurological symptoms can be really hard to figure out even for doctors who specialize in the brain disorders. They were clearly concerned about your symptoms when you were in the ER and ruled out stroke. Did they mention getting an EEG?
I have had a lot of weird neuro symptoms and really understand how frightening they are. It is helpful to know exactly what symptoms warrant immediate attention. Make sure you get that clarified.
They did do an EEG almost a year ago and told me nothing showed up as wrong or concerning and basically told me it’s probably just some kind of headache but again that doesn’t seem accurate. I think pursuing this with a different neurologist might be the next step.
That is the same with me. EEG was normal years ago. My neurologist explained to me last time I was in the difference between a seizure - think that is electrical - and the way our brain neurons are not working right. These problems can look a lot alike, probably more common in those with lupus or lupus-like diseases.
The migraine diagnosis they are giving you is not dismissing your symptoms. They don’t know exactly what migraines are, but they are getting closer to understanding the complexities. They can really mess with our brains - even causing temporary paralysis. I have a diagnosis of “migraine variant” even though I don’t get headaches.
I agree it would be good to see another neurologist to get their take. Are you on medication? These medications for seizures and migraines overlap. I am on both. They help the neurons work better .. or something like that. 😅
I had symptoms for years before the MRI showed abnormalities.
Hello arpurce, I am sorry you have been going through these frightening episodes, with no answers. I am not a doctor but I thought I'd share my son's experience as it may be relevant. He started having episodes on his 10th birthday in January with fainting (sometimes 6 times a day), he also had similar episodes to you with half paralysis, incapacity to talk/slurred speech, cognitive issues and memory issues. Hemiplegic migraines was one possibility and I have family history of migraines with aura, it seemed to make sense. His episodes are now far less frequent, may be he has a "pre-"faint now every 2-3 weeks but no more of the stroke-like symptoms, it is also preceeded by dizziness (vertigo and nausea) and sometimes blurry vision and headaches. In these episodes, he needs to lie down when he feels dizzy, this avoid him fainting.- Neurologist ruled out epilepsy. For this, I may recommend you ask for an extended EEG to completely rule out epilepsy as a 30mins EEG may not capture an episode (and epilepsy wouldn't show on a MRI).
- Cardiologist diagnosed vaso vagal syncopes. A sudden drop in blood pressure causing these episodes. The cardiologist has really helped us. He now has to drink 2-2.5liters of water a day and has also prescribed slow sodium tablets to increase his blood pressure. This has really made a massive impact. On the days when he doesn't take the tablets, he has an episode the next. You may want to explore seeing a cardiologist to rule out POTS or vaso vagal syncopes. It can also explain the hemiplegic migraines.
- Lastly, I myself have been diagnosed with undifferentiated connective tissue disease in the summer and also a PFO (a small hole in my heart). I have since learnt that my migraines are linked to my PFO. And I have read also that the PFO can cause hemiplegic migraines. Apparently, having a PFO is quite common, but not everyone experiences symptoms.
- I still don't know for sure what has caused these episodes for my son, we have possible untreated Lyme disease diagnosis, but I think there is certainly some link to autoimmune somewhere, particularly with me having been diagnosed this summer, but time will tell.
Wishing you for the episodes to lessen and for you to get answers. Sending you good wishes.
I have been diagnosed with vasovagel syncope in high school but they were unable to give me any solutions but I’ll bring up the sodium tablets with my doctor! I was also diagnosed with a small hole in my heart as a baby but the doctors said that wouldn’t be a cause of anything. I think bringing that up again will help considering it could affect things. Thank you so much for you response, I’ll bring some of these suggestions up with my doctor!
Very interesting that you were also diagnosed with vasovagal syncope in high school and the PFO younger, there must be a link somehow. It would be great if your doctor could refer you to a cardiologist to discuss these (and rule out anything else). For your age, I think you would have to drink 3L a day (that's what my cardio told me for myself). You can buy the slow sodium tablets online without a prescription, but I'd check my blood pressure first with my doctor as to ensure that you don't have high BP (the salt increases the blood pressure). Alternatively in the interim of seeing the doctor, you can increase your salt with having toasts with olive oil, tomatoes and salt for breakfast. Really hope you get answers, it may take a while before you get confirmation but don't lose hope that it can get better. Let me konw how you do or if you find anything. All the best
How did they make the vasovagal diagnosis? I wonder if that would be seen differently now that you have lupus? So complicated!
I was diagnosed based on symptoms with orthostatic hypotension. When I started getting a bunch of weird symptoms, they did a tilt table test which confirmed the type of syncope it was.
Anyway, all of this could be related or separate. But all related to your lupus.
I was diagnosed with vasovagal syncope in high school because I was fainting a lot after athletics and high energy/excitement moments during sports. The fainting from high school was a lot different than my experiences with these 'episodes' I'm having now because they were triggered and the symptoms are not exactly the same, but could be connected in some way!
That actually does sound different. Your “episodes” sound like what some of us experience that are either seizure-related, migraine-related or what I call “weird head” stuff that are considered the low level CNS symptoms.
Does anything trigger your episodes? Migraineurs and people epilepsy can be hyper sensitive to so many things - noise, scents, bright lights.
I can get a slow motion passing out episode from smelling perfume. 😫.
I don’t know if this will help but my neurologist described me as having a very sensitive neurochemistry. There are so many ways in which lupus affects the brain - can be subtle - and they don’t understand all the mechanisms.
Glad you posted. I think you should ask a new neurologist if they could try meds to help you to function better. They have to think out of the box. Use us as examples of people who have been helped. I draw on people’s experiences here.
Hi KayHimm, this is so interesting, so glad to meet you. It came as a shock to me this summer to have these diagnosed (plus asthma, IBS), but I think it explains all the weird symptoms (which have been worsening this year). I am currently investigating whether my days of dizziness and blue lips (particularly after exertion) are due to the PFO and a possible desaturation on exertion (due to a possible shunt from the PFO), but it is difficult to say. x
Same with me - mine was found on work up for pulmonary hypertension. I don’t have the symptoms on exertion like you do. Definitely your doctors will want to know this.
@Roarah has a PFO with APS. She has a lot of knowledge in this area. Have you been tested for aPL? You probably have been. Rheumatologists usually test for these antibodies.
How was your UCTD diagnosed?
I have Covid-related asthma and long-standing IBS (possibly related to autonomic nerve damage).
Glad to meet you too. We have twin presentations. 😅
Thank you Kay for your reply. I'm sorry you have to go through this also, and it's nice to meet someone with same issues, as people around me don't understand really and as I'm usually known in my old self to be quite active, I don't think my friends can see that aspect of me who has episodes of unwellness. I'm not sure about the aPL antibodies, I will ask at my next meeting, thank you very much for pointing out.
My GP referred me to the rheumatologist after showing her photos of some of my symptoms and explaining my fatigue. Initially, I don't think she was buying my fatigue as an issue (and suspected peri-menopause, aged 45), but I think the photo of my new raynaud's hands did it. I've also had swollen face, some rashes and some strange bruises appearing on the legs (after a run). The rheumatologist immediately suspected Lupus or Sogren, he asked me a few questions, to which my answers were yes (hair loss, dry mouth and eyes, mouth ulcers etc.. on top of the fatigue). He did some bloods, and I came back positive for ANA and low C3. He's put me on Hydroxy 200mg a day, after saying he couldn't confirm which autoimmune disease I had but that I definitely had an autoimmune, but at this stage too early. I've been lucky as I have days when I am well, it comes and goes. The bruises on the legs are not explained though.
Were you diagnosed recently also with the PFO and the UTCD?
Sorry, just saw this post. I was diagnosed with UCTD nearly forty years ago when the syndrome was being described. You seem to fit the picture of UCTD at this time. Good thing your GP was on the ball and referred you to a rheumatologist.
The PFO was discovered about fifteen years ago on routine stress echo. I had something consistent with pulmonary hypertension and had an esophageal echo to confirm I had PFO and not an ASD. Confusing, right?
How long have you had symptoms? After two years the chances are good you will stay UCTD. About twenty percent of people will go on to develop lupus, scleroderma or another CTD.
Best of luck. The change in our selves is so hard.
Thank you Kay for your reply and sorry it's taken me so long to reply, I've been busy with the children and one of them getting covid the past week. All well now. Very interesting. My migraines with aura started may be 7-8years ago, and the weird symptoms started around February this year. My fatigue has always been here, but this year, it has been hugely impacted since February. Feel free to PM me (I'm not sure how it works..), I'm happy continuing chatting. xx
Yes, I am on both. A combination of Effexor and Topomax is a known migraine cocktail. I figure I am a little covered for seizures, but that does is usually higher, I think.
If still having frequent breakthrough episodes it might rule out migraines and rule in seizures as the cause and the dose can be adjusted accordingly. Good luck.
Hi arpurce, some of what you describe like staring into space,not understanding what's being said,having facial tics etc sounds like what I first had in my 20s. I was diagnosed with lupus at 17. After a few of those episodes,I collapsed at work one day+had a full-blown tonic-clonic seizure so I was finally diagnosed with focal epilepsy. It might be helpful if you ask your lupus consultant to refer you to a neurologist not just for scans(as often there is nothing to see) but just to talk over all these individual symptoms which happen to you during an episode. Do you live with anyone? If so, you could ask them to film you next time it happens+ you can show it to the neurologist? I hope you get the help you need very soon. If you want to ask anything else, please do.Take care+let us know how you get on X.
Hi KayHimm, you're right, really difficult to pick up on as I had all those weird symptoms for years before anyone actually noticed and I myself actually spoke up about them. I would have an episode then when it passed I would completely forget about it and then forget to mention it to the doctor or lupus consultant!
Yes!! My rheumatologist called them “constitutional symptoms” for years. I was sent to a neurologist who thought migraine variant and didn’t rule it being autoimmune related. Ultimately I was told I had “low level CNS involvement” and referred to a neurologist who specializes in seizures and has an interest in autoimmune disease. My MRI showed mini stroked that time.
We do have to speak up! Fortunately there is a lot of research interest into brain autoimmunity now.
There is no science behind a lot of our treatment. They have to use what they call “expert opinion.” Maybe that is when they share experiences about us. 😅 So yes, the more we speak up, get treated and see what helps, the better.
Interesting the way we all refer to “episodes.” I am going to mention that to my neurologist. The brain does so much! And when it isn’t working right, we have an “episode” I think. So scary, right?
Yes KayHimm, the epilepsy drug Levetiracetam also called Keppra works for me 500mg twice daily. Haven't had any episodes or full-blown tonic-clonic seizures since I started it. They did try other epilepsy meds first but they didn't help so it was trial+error at the start(as it is with most people)but we got there in the end,phew! One of my MRIs did show a mini stroke but they couldn't tell when it had occurred so it couldn't be linked to the onset of the episodes.
P.s. I was put on epilepsy meds and after they found the right one to suit me(Levetiracetam), I've been on it ever since(more than 20 years!)+have never had any more episodes at all!
Also, Lupus definitely affects the brain as well as most of the rest of the body so your lupus consultant should definitely refer you to another neurologist if the one you've seen hasn't been able to help. Good luck!
hi , I suffered with very bad rightsided hemiplegic right from numbness on my face to unable to write messages and understand people the migraines were so severe and painful that I have to sleep it off all the time spent a lot of time in bed.
I was referred to a neurologist initially at my local hosp then after and unsatisfied outcome even my GP was unimpressed by it. We requested a neurologist referral at Oxford it was the best decision I have made it controlled my migraines, though 3 years later I was diagnosed with SLE. it has been now 15 years ,I do get it occasionally but not as bad as before.
I am on meds for my migraines quite a high dose that keeps it stable together with Hydroxychloroquine and arcoxia and other pain meds. If you know your aura when it happens then it is good or food that triggers it then best avoid it. If you can find a preventive drug to stop it from happening it wound be good . Or a drug to stabilise your migraines totally altogether.
Yes , Stress is the main factor for triggers of migraines. If you can find some way / outlet deep breathing / mind focus of interest of relaxation to take that stress away.
I had 2 different set of episodes of migraines both totally unrelated. 1st set of Migraines was food related . It was when I had finished my Chicken pox incubation period 14 days I had it all on my head .
I then had my 1st daughter it all cleared up no migraines at all it was wonderful. then had my 2nd daughter after her birth low and behold it hit me like a hard the migraines came slowly and steadily.
Each stress level sets in the more intense it becomes until I was getting it every day in one day I would get multiple attacks.
Hope you are able to get a referral to a neurologist to treat you one that would listen to you . All the best my dear.xx
BTW, the drug I am using is still not fully recognise for use for migraines in the UK. thought is listed for use in books it is only consultant use only . each time my GP had to refer back to him for advice regarding dose as I am on a very high dose as it is not recommended in the BNF. It is only used for epileptic .
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