Never a dull moment. Had a major seizure last Tuesday and ended up in the hospital. They are trying to figure out why. Neurologist yesterday mentioned possible vasculitis but not sure. No family history of seizures and testing just beginning. Has anyone dealt with this? I am totally freaked out and just want to know what is going on.
So sorry that happened to you. I had two seizures both just before passing out due to blood pooling in my legs which I found out was due to autonomic neuropathy. Then I had a tilt table test and it happened again. Now I can feel when it is starting to happen and I immediately sit down. That helps me. Also, I was told to eat a lot of salt and drink a lot of water. I don't know if this is anything like what happened to you. Good luck.
Sorry to hear about this new wrinkle. There have been people with Sjogrens who have had seizures and I don't remember all of the reasons but do know that it is not uncommon. Also, lupus patients have seizures also. Just thought you could use that info cause docs will be checking all the options. You will be ready having tests that is for sure. Good luck and please keep us posted. Irish
Well....here it is 3 weeks later..and its been one big nightmare. This is how things went. My GP said I may never know why I had the seizure and he thinks I need nerve pills to calm me down. My rheumatologist said he doesnt feel comfortable treating seizures, and I need to see a neurologist. The neurologist said "autoimmune issues can be very complicated" so I should see a rheumatologist! My sister has lupus and is having other autoimmune issues and is seeing a rheumatologist and neurologist at HSS (Hospital for Special Surgery) in NYC. She is helping me set up an appointment there, so I am hoping I can get in soon, and get whatever testing I need. I am really depressed with my doctors letting me down...and scared about the seizures. Was also told that I cannot drive for at least 6 months. My husband has a seizure disorder (all his adult life) and cannot drive. Right now, we are relying on people giving us rides to wherever we need to be. We are both trying to stay busy and keep working. Would you please keep us in your prayers? I know we'll get through this, but right now it is difficult. Thanks for listening.
You must see a neurologist.
ccc
Ok. At the end of my rope. Does anyone know of a neurologist that deals with autoimmune issues? No one in my area (northeast pa) wants to help me, and are leaving it to me to figure out. I am getting nowhere. My health insurance said there is only one doctor in the entire United States that deals with both these specialties, and that is Dr. Julius Birnbaum at Johns Hopkins. His appointments are 6 months out and my insurance company said he is out of network. If anyone knows of any other doctors, I would appreciate the info. Been a month since my seizure, and I haven't seen a doctor. Does that sound right, cause it doesnt to me.
Finding a doctor who knows anything and is willing to admit he/she doesn't know everything is harder than finding 'hen's teeth' (old indication of rarity).
You will probably have to wait to see if you have another seizure is my guess. In the meantime keep searching for a good neurologist/rheumatologist in your area.
I would also suggest that you try to find a doctor who specializes in autonomic/dysautonomic problems.
What will happen eventually is that you will find a doctor who knows enough about your conditions to add everything up and deal with your problems.
I wish you the very best. I have spent a long time searching. I had a great Rheumatologist to start with and then we moved to a medical waste land (El Paso, Texas) but even there I found a few good medical professionals.
Now I live 20 miles from Duke Medical Center and 20 miles from UNC Medical Center and I have a marvelous team of medical professionals, mostly associated with Duke.
And this is perfect for me, since I have a wide range of conditions and not all of them would fall to any one medical speciality.
Regards, Elaine
PS, I had 'seizure like' episodes, which were finally traced (by ME) to my favorite medication, Cymbalta. So now I am working with my neurological team to find a replacement which will manage my pain as well as Cymbalta, without the unfortunate jerking and falling, known as Myoclonus and Syncope.
The bottom line is you need a neurologist. Finding one that specializes in autoimmune is almost impossible. Find a good one and make an appointment cause you need treatment of your seizures no matter what the cause is. This neurololgist should either be a keeper or one that will be able to refer you to someone who may be able to help you.
If you stop and think of all the people with seizure disorders in this world I would bet that a good many of them may have an undiagnosed autoimmune disease. They still get treatment for the seizures as to put off treatment can be dangerous to ones health.
Do no despair at this point and time. There are very few people who see Dr. Birnbaum and they are getting help for their seizures. I would advise getting an immunologist or someone to sort out your autoimmune disease and find a helpful treatment. This might help slow down the attack on your nervous system. The neurologist may be able to help you find the immumologist also. Good luck. Irish
You are all so wise...and a blessing to me. Thanks for taking the time to listen and for always giving sound advise :)
Finally got an order for blood work (complement c3, complement c4, cardiolipin ab IGA, IGG, IGM, drvvt screen w/ reflex, beta 2 glycoprotein 1 IGG / IGM, and paraneoplastic ab panel)....and they (my rheumatologist) are sending me to UPenn Neurology. Finally. Of course, won't believe it till I am actually there. Anyone here been to UPenn for treatment? I do know they have a good rheumatology department, and probably will end up there as well. Now...just hoping my appointment isn't too far out. This not driving is beginning to cause problems at my job.....and I really need to keep it (and the medical insurance that comes with it)...also would like to know what is causing the seizures. Thanks for listening...
That is terrible! See a seizure specialist. At least they can give you anti-seizure meds and monitor you and perhaps give you a shorter no-drive period if it appears to be an isolated incident. I have never had a tonic-clonic or grnad mal seizure, but I do probably have focal temporal lobe seizures. I saw ae epilepsy specialist who got me started and then found a neuro who also knows her autoimmune stuff (in SC). Someone has got to take you. That's ridiculous. What do they think you're going to do? Die on them? Call them back and say that you just want a seizure eval and preventative treatment, not a full treatment plan for autoimmune, because you're going to Hopkins to get that. Maybe they'll feel more willing then.
Well had all my blood work done this morning...so will see what happens there. My appointment is Nov 14th at UPenn with a neurologist that specializes in seizure disorders. I know rheumatology will have to be involved..but at least we're headed in the right direction. If there is a cancellation prior to November, I might get in earlier. I do have medicine for seizures (keppra), so hope that works while they figure all this out. Thanks to everyone who listened and took the time to post.
Glad that things are seeming to line up for you. I know you will be glad to have all this testing over with.. Good luck and hope you find some answers. Irish
Lori,
I was dxed with seizure disorder AFTER SjS dx. Because I had suffered a distinct pattern of events for 8 years, the neurologist stated I had to have suffered the condition at least that long. Just saying this as I lived a semi normal life..with those symptoms PLUS the SjS sicca, digestion, eating, oral cavity problems for nearly five years before dx/medication. I am not one of the ones who searched for dx or even questioned any of what was going on. I just lived with all of it.
Once dxed, a neurologist will be quite aggressive with treatment and follow up. EEG confirmed mine..then followed up with MRI. My tests were ordered within a week of my first neuro visit. Honestly, I sought treatment from a neuro as I was convinced I had "early onset" of Alzheimer's. My neuro---sort of frustrated comedian--asked "early"? I was 72. Anyway, passed the Alz screening..he had me walk a straight line...and I couldn't. I had zero idea that I couldn't. He sent me to adjoining hospital immediately for EEG.
I am telling you about the order of the seizure dx, as I did not think of it as part of the SjS. In fact, the first time I mentioned it on this site, I was told by a member not to discuss things not associated with SjS here. In the last year and a half, seizure questions come up frequently. Our local sjogren's group has two medical lectures a year. The one we had a couple of weeks ago HIGHLIGHTED seizures associated with SjS. I was stupefied. She told me this has been recognized fairly recently as being a result of the messed up immune system. She says it's still being studied. I have NOT seen my neuro since I learned this. Bottom line here: I don't think my neuro even considered the SjS in confirming his suspicion I was having seizures.
Last thing I want to share is my next door neighbor --quite young...early 30s, had 4 myoclonic seizures before ambulance got to her home--one quiet Sunday afternoon. She was hospitalized for 5 days---tests, etc. She was diagnosed "idiopathic seizures." I'd never heard of this. She is still being monitored closely. No more incidents since that day..which was about 6 months ago. They say it may happen again, may not. Now then..to me? That is scary. I mean, what if she'd been at the grocery store--by herself....or driving. Oh gosh...now i'll be scaring everyone. Sorry. But hope you get what I mean: there are many types of seizures. and btw: my neighbor is on seizure meds, which will (as my med does) control the seizures.
Good luck dear, and just find yourself a good neuro.
ccc
Hi CCC,
Thanks for your insight. Makes me wonder how long we have to wait till they truly understand this autoimmune business..and why the medical community as a whole just doesn't want to deal with it. I may be wrong, but am convinced the seizures are related. What started out as dry mouth/dry eyes has now affected what seems every system in my body...and like you, I just dealt with it for the last 25 years. I also am dealing with gastro and memory issues. It's just so scary. I really hope this neurologist is willing to look at the autoimmune side of things. At this point he can do what needs to be done....I just want answers. Thanks again for sharing, and good luck with doctors too!
Dearest cccourt:
Of course we talk about conditions not usually related to Sjogren's. Ignore anyone who tells you otherwise.
So many of our conditions are related to our disordered Immune System, and it takes TALKING and WRITING about everything to get it all sorted out.
Fortunately I just ignore the naysayers and know-it-alls. I rather suspect the know-it-alll who told you to 'stick to Sjogren's' has no idea what he/she is talking about on any subject.
Regards, Elaine
Just an update. I finally saw a neurologist / epilepsy specialist at UPenn. He said I have epilepsy caused by autoimmune issues. He felt it was vascular, and said it was more than likely due to inflammation in the blood vessels in my hippocampus area of my brain. I have also been having memory problems which is part of it, because the part of the brain that is affected. Have to keep taking the keppra for the seizures, the Plaquenil for the inflammation, and the Ecotrin for the anticardiolipid business. If I have another seizure, I will need to have a spinal tap. And of course....I still can't drive. Please keep me in your prayers, cause I am still very scared and stressed about the whole thing. Glad I finally got a doctor that is figuring things out, but still a lot for me to deal with. Thanks for listening.
Great to hear. What is anticardiolipid? Also...why a spinal tap? Also, how does he KNOW which part of the brain is affected without the EEG? Or MRI?
Just curious.
Who told you not to drive? I am asking because I still can't believe no one has told me not to drive. I am terrified I 'll have an accident and be taken to an ER..and have to divulge my seizure disorder> then ordered not to drive. The first year after dx I drove a very narrow area. Truth be told, the first year I was overdosed on the seizure med. Eventually I stood my ground to revisit dosage. Once resolved, I almost feel normal.
I am so happy for you. If you can't drive, get out and walk. :)
Have a great day. ccc
Hi CCC,
The antiphospholipid syndrome has to do with the clotting factor in your blood, my hematologist refers to it as "sticky blood". I can get a blood clot quicker than most folks. I get the levels of my anticardiolipins checked every 6 months and am on Ecotrin (for a blood thinner). This also puts me a risk for vascular incidents. The inflammation just adds to the problem. Yes, I had many EEG's and MRI's. Having memory problems too, so it seems to point to the hippocampus. At least that's what he feels. When I had the grand mal seizure in August, my neurologist told me I could not drive for 6 months. Every doctor I saw after that, said the same. The neurologist/epilepsy specialized confirmed the same. The 6 months are over the end of Feb.2018.
If I have another seizure, the count starts all over again :( The not driving has been difficult, because ironically my husband has a seizure disorder and cannot drive either. In the big picture, I will take my meds, and make the most of each day. Thanks for your input, take care :)
Grand mal is answer to my driving query. Bless you heart w' hubby too. You must be one organized woman! And..info relieves my fears for me too. Have a great holiday season. And not too long before 6 months is up. ???????????????????? ccc
ccc - thanks for the kind words, hope you have a peaceful holiday also. :)
Well....made it thru the 6 months of not driving (actually 7 months by the time I saw the doctor). Seizure free and my driving privileges are reinstated. I am a bit nervous about being in the car by myself, so my husband has been supportive and going with me. Hoping the fear eventually goes away. For now, just happy to be driving again....
Lorigacc
Now...let me ask you: are you seizure free, or are you seizure controlled? My neuro emphasizes I am fine, I have "controlled" seizures, but I maintain a diagnosis of epilepsy.
And yeah...even tho I didn't cease driving...very far...my first time back on a highway was scary as could be. If I drove slowly, I'd be honked at for the entire journey, and if I kept up with traffic, scared me to death...so meandered in the right lane as best I could at about 60/65. You are right though. Harrowing.
Glad to hear your news.
ccc
You passes the first hurdle. You kept your stress in check and found a neurologist, got a diagnosis (sjogrens no less) and got medications. You are driving again. You should be proud of the progress that you made. It takes moxy to deal with these autoimmune issues and to persevere through all the hoops to treatment.
I am wondering if you have seen a hematologist for your clotting disorder. There are several drugs available to prevent clots and an assessment may be indicated. Inflammation can affect the blood vessels in many ways and sometimes we need to dig deeper into things to make sure all the angles are covered. So many things that can affect the clotting issues.
Will say some prayers and keep the faith cause you have kept on going through all this. Irish
I believe it?s highly possible that seizures could be related to Sj?gren?s. If Sj?gren?s is systemic inflammation and can affect any part of the body not just mucous glands then i think it can affect the vessels and cells in the brain.
Thank you for all your kind replies :)
Yes, I am seizure free. Taking Keppra, so maybe that is why, but I'll take it. I do see a hematologist every 6 months to have my anticardiolipin levels done (other blood work too). Chances are the levels could go up in-between those 6 months visits...but can't spend my life getting constant blood work. They do think that could be one of the possibilities of the seizure (tiny clots). They also believe that inflammation plays a part in it all. The neurologist wants me to up my dose of Plaquenil. Might be a good idea anyway, cause I have been having an RA flare. Also, experiencing some kind of psoriasis on my back, so maybe that will help that too. Still nervous that I could have another seizure...and nervous about driving, but gotta keep living life, and not let the disease get the best of me. Having this forum is a great support.