8 seizures today...Sometimes i can get up to 10 seizures in a day and it always affects my sanity,it feels like a dark heavy blanket being draped over me,And I feel so alone with these terrible disturbing visions,i see faces of demons laughing at me telling me to do harm to myself,and telling me its time to go..the anxiety attacted to these seizures are very disurbing which has a knock on effect to my sanity.But I keep telling myself there are alot of people who are suffering more than me
Sometimes I think the demons that haunt me are really Angels trying to free my soul.
Today the demons have got to me,but they are not winning.
I still have "HOPE" which we all have... I have Found my coping strategies and have found distractions...But sometimes they don't always work,so I hope tomorrow brings me a spoonful of sunshine to restore some warmth and brightness back to my spirit...And I hope everyone can find the courage to say to themselves "the trick is in not minding it hurts"
popshaw21
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popshaw21
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If you are having disturbing visions of demons telling you to do harm to yourself you should admit yourself for a voluntary observation stay at the nearest phychiatric ward in the nearest hospital. You speak as though these demons have appeared before and I wonder if you have any mental diagnosis in addition to APS. Are you taking medications which may produce this kind of vision? Have you seen a professional about the visions? This is nothing to ignore. It is a symptom as clear as if you stubbed your toe and felt pain. It's just emotional pain instead of physical pain. If these demons are telling you to harm yourself you have a serious emergency at hand. You should at least call the nearest emergency room, explain your symptoms and ask what hospital has facililties to accommodate your illness. Then call someone to drive you there. Since your own coping stategies have not always worked, perhaps a professional can help you to work your specific problems in a different way.
You cannot just let this go. It could be a serious neurological problem producing your visions. Ten seizures a day requires specific medication to quiet or dissipate them. You definitely need a neurological exam in order to properly diagnose you, develop a medical plan and stop the seizures, visions and thoughts of harm to oneself. This sounds like much more than APS to me. At minimum you need to let your GP know of the increase in seizures and I would hope he would refer you to your neurologist to take an MRI/MRA to see what is producing the seizures, because as far as I know, they are not a normal symptom of APS. You're regular doctor should help to get you to the right medical person to help you with these seizures. Each seizure has a chance to cause permanent harm. It is a danger to leave it unattended.
So, Popshaw32, you need to take care of yourself now and make some phone calls so that you can get some appropriate help. Don't hesitate. Just make a call to stop the seizures.
hello,Thankyou for your advice, I have regular visits from a CPN and have been to see a neuorologist about the seizures,and have tried many different medications without success.So I'am getting help its just a case of finding the right medication which is something my neuorologist has suggested and all i have to do now is to go and see my GP this week to discuss changing to a different medication.my neuorologist has said that the type of seizures I suffer with are the most difficult to treat.I have had a recent T.I.A which has damaged my eyes,I had an MRI scan and they found some lesion's around the temporal area of the brain which would exsplain the worsennig of the seizures.Thankfully my head feels clear this morning so hopefully I will have a peaceful day.I will update after ive seen my GP.
So sorry you're day has been so dark and shadowed. Please do seek advice form your medical team with regards your seizures and support with your struggling mind, Seizures can lead to dark thoughts and dreams!! I hope tomorrow brings a lighter day for you!
hello and thankyou for your input,I do have a good surport system from friends and family and hopefully my GP will help and advise me about trying a different medication...Will update after seeing my GP.
Hi sheena,and thankyou for your kind words.I will be seeking some advise from my GP this week and try a different medication,and hopefully the new medication will work for me.i will also be seeing my CPN this week and will have the chance to off load my troubled mind.Thankyou again.....best wishes
Hi Pops sorry you are going thru this- -- i don,t have seizures- some of my meds, the gloomy thoughts are some things my Dc,s are watching for .good advise offered above by your friends on here. do follow thru with your Dc,s and knowing we are here for you when needed. lets hope for some better news after you see your Dc,s -------------------------- jet
You are a good person, please don't harm yourself. You helped me yesterday when I had similar feelings.
I have been diagnosed with Dystonia, my attacks are just like seisures. Is this something you might relate to?
I understand that you feel this way.
There are no such thing as real demons, just the ones we feel which are guilt, worry, fear and despair. Please, please take any advice which will keep you safe, come here and write and write and continue to talk because you are not alone.
Life is precious, and you are important and needed.
The Samaritans have helped me before, this place helps and as I said, YOU helped me yesterday. There IS hope, please don't lose faith in yourself and your abilities.
I'll be thinking of you, and checking this blog because I can't bear to hear the pain you are in.
Hi annie,Thankyou for your kind words,I don't know much about your condition(dystonia)I do suffer with restless legs and I also get the same problem in my shoulder,it disturbs my sleep and I have to get up and walk about then get back into bed and sometimes I'm able to get off to sleep.I have seizures when i'm a sleep and often I exsperience what I can only describe as exsplosions in my head which wakes me up,and they cause me to have panic attacks.The doctor has told me this is due to having seizures and the noise is due to me grinding my teeth.Thankfully I don't get this problem everynight.I'am very thankful for you saying...I'm not alone and its a comfort to be able to share my exsperiences and get some good feed back on this site.I hope you are feeling better and I'm pleased I helped you.Thankyou again annie and I hope you find some relief from your symptoms,and I'am here for you,and your not alone...Please take care and I;ll be thinking of you too.I will update you on my progress...best wishes,popshaw21 xx
I have had both TIAs / mini strokes as well as a seisure or 2. Add to that a couple of fever induced deleriums, and I have a limited though varied experiences of medically induced brain malfunctions. Though none of my experiences matches yours in intensity or duration! The subjective line among them all was, for me, not clear at all. The seisures were more profound, but of shorter duration. The deleriums were crazier, and the TIAs were scarier. But there were elements of all 3 in all 3.
The brain is a complex, complex organ. From my varied, but still blessedly short experiences, I do think Popshaw that you have the right attitude. Run all the data through several layers of mental filters, communicate with your doctors, and trust and hope that eventually the docs are going to figure out how to treat this. And in the meantime, use common sense about what you allow yourself to do - no driving, keep a cell phone handy and rely on friends and family. Which it sounds as if you are already doing.
And do not fail to borrow someone else's rational mental filters if yours are temporarily overwhelmed. If the voices tell you something extreme, and you find yourself beginning to give them credence, pull out your phone and call a friend, or the afore mentioned Samaritans, and hold on.
For what it's worth, we're all pulling for you.
Hang in there. Best wishes for a brighter new year!
And post often! That's what we're here for! Each other!
Gina
No doubt all of us feel for you! The brain and also the eye are complicated organs.
Take good care and please receive my Best Wishes from Stockholm!
There truly are some lovely, caring people on here, it makes me proud to be involved, i'de trade the Hughes any day, but not the lovely people I've met. Every cloud has a silver lining!
Hi. I hope you are feeling better today. I have lupus and APS and I have seizure sometimes. The anti-seizure drugs made them worse. I never had a seizure until I had a stroke. Now I only take Coumidin and I am much better. Sometimes I still get a tic. I think it's because my INR level isn't high enough. I think you should be checked for APS too. Take care~
You mention that you didn't have seizures before your stroke, I wonder, please could you explain how the seizures affect you?
I ask, because I was mis diagnosed when I had a major stroke in 2010. I was told i had not had a stroke, and not to worry and that it was "just a Multiple Sclerosis relapse."
Ive now been diagnosed with APS following arterial clots and massive PE's, and I have also been diagnosed with Dystonia. When I have an attack I am conscious, but my body is in rigours. I contort uncontrollably and end up injuring muscles.
So, as I am newly diagnosed with APS I am still learning. Seizures seem to be a fairly common theme with people on this forum, and so I don't know if Dystonia is what I have, or if it sounds like stroke related seizures. Perhaps a stroke causes Dystonia?
I have been prescribed Gabapentin for this, and it helps, but makes me very spaced out.
I am also fairly new to this site, so please forgive ,e if I have posted in the wrong place, I just have not seen anybody else describe their seizures as being as a resilt of their stroke.
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