Pseudoseizures- Conversion Disorder

Hello my friends,
Here I am again... 2 years later with the same issue that has gotten much worse. It is such a hurtful situation to have "Pseudoseizures" and no one has a clue about a real cure. I have practically lost everything. My job, my driver's license, most of my memory, etc... Doctors dont seem to take this health matter seriously. What else do you do when you're unable to work, drive, etc? Disability keeps getting denied, medicaid denied 2-3 times.. if I can not work do to my condition, and DMV thinks that it's serious enough to take away my driver's license, then how is it possible to even afford living? Afford health insurance? My GOD, can anyone help? Does anyone have any answers??? I JUST WANT MY LIFE BaCK!

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I don't know what you're experiencing, but I know how awful the prospect of having conversion disorder is. Pseudoseizures and conversion disorder are not necessarily the same thing, however.
What is your actual diagnosis?

Regardless of whether they're pseudoseizures or you have conversion disorder, the treatment is the same. Treatment involves identifying the triggers, firstly, and then resolving or coming to terms with whatever the conflict is. You may not even know. However, they are psychological problems manifesting physically. That's different from a medical problem in that your symptoms are not explained by any other cause, nor "validated" by any testing.

I really wish you the best of luck; my neurologist aunt suggested I might have conversion disorder. She's wrong (she doesn't know all the symptoms or the results of any of my tests), but I certainly understand the feeling of what you describe. My best advice is to let go of the outcome, let go of convincing others of your condition, stay focused as best you can, and take one step at a time. Literally. You'll get through it and past it if you're willing, though it won't be easy; but you CAN do it.

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Thanks... Doctors say Im having pseudoseizures... But I have read articles and watched a lot of you tube videos that say they are the same as conversion disorder...soo idk ... Whatever it is..im gonna fight until I get thru it ..thanks again

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My daughter was MISDIAGNOSED with pseudoseizures thought to be due to conversion disorder. Her psychiatrist has known her for more than 3 years and disagreed with the diagnosis... Conversion disorder and pseudoseizures due to it should be made by a psychiatrist not a neurologist (since it is a psychiatric disorder that takes time to establish and is only valid when other physiological causes have been ruled out).

Anyways, we found out in my daughter that they were actually syncopal convulsions due to uncontrolled POTS. 10% of people with POTS (a form of dysautonomia common with EDSers), pass out and I think Dr. Blair Grubb (really one of the world experts), says 3% have syncopal convulsions. My daughter's blood pressure was so unstable, it would bottom out, she would pass out and convulse and it looked like seizures but wasn't so they labelled it as pseudoseizures. 3 months later of having to strap her in a wheelchair, and tell her she could psych her way through it (not my best moment as a mom but I was listening to the doctors instead of following my gut), we tried her on Midodrine. It increased her blood pressure and she rarely has them these days unless she gets sick, or her autonomic nervous system takes a hit.

I am not a doctor and I can't diagnose you and I'm not trying to but I just want you to get other options checked out with your doctors as well just in case they aren't pseudoseizures and can be controlled. It is very hard to find a doctor who knows enough about POTS to get this. Look for cardiologists that are familiar with it or neurologists that specialize in dysautonomia. That would be the place to start.

(((Hugs)))

Aurora

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Get an attorney. With possible conversion disorder and the anxiety and depression associated with the frustrating symptoms of your condition, you should easily get disability. They turn everyone down the first three times unless you have an attorney. Most attorneys will not charge you unless you win and then they take a percentage that they told you off the top of your back pay and first payment but not for life of payments. Good luck.

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Here is how I was awarded permanent disability the first time around. I made a list of my diagnosis/symptoms on the first page with the doctor that diagnosed it & the date the diagnosis was given. Then I attached all doctor evidence and blood work for the past twenty years. I am glad I keep all my records scanned in chronological order on the computer and a few back ups. Make sure you make every appointment. With enough valid professional opinions, they do not make you go to their doctors. I was approved in just a few months. I did not have an attorney. It is all about the records and authority. My doctors have tremendous authority as I went to the best to get my diagnosis and symptoms. So many people lie, they have to make sure it hard enough to weed out the frauds and quitters. They do not want to deny the real cases, so just show them you are real with solid documentation.

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My son had them for years. Artane, a Parkinson drug could stop them. However, when he had chiari decompression surgery with upper cervical stabilization both his pots and his pseudo seizures stopped.

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Wow..thanks everyone..this is good information. At this point I havent been able to afford my health insurance when it went up, so I dont have insurance or the funds to see my psychiatrist or neurologist any more..i see my primary care dr for medicine refills/samples..but I am truly lost for what else to do at this point. I have an attorney thru my long term disability group but I am wondering should I seek further help or what??? I just dont know any more..i wud vey much rather go back to work, but I know it is not possible for now... Thanks again and i will look into these other options

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I m going though the same thing. I kept getting denied with Medicare but it wasn't for my seizures but we did get it.
I know I got it becuase I had a disability lawyer. Also, I have been hearin they wount take your condition serious untill you get a lawyer. I
Did it for about 2 to three years.
I think you will get a lot of helpfull indie from my videos go to www.youtube.com and search in the search box, jujub428 and I have videos about what I m going though and things that may help other people as well.

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I have had a lot of the same as what Bean1 said about her son- I used Cinamet the parkinsons drug and it was able to help my convulsive/seizure(not EEG positive) episodes a lot. After my chiari malformation was decompressed, I was fused, and my back was de-tethered they still persisted though and the side effect of nausea from the meds were unbearable. We did however find in the end they were tied with my POTS/Dysautonomia and the top doctors who deal with POTS/EDS patients were able to watch my episodes and confirm it was NOT conversion disorder (which is usually a great way doctors say I don't know whats wrong, I've not seen it before, it must be in your head).

Do you find they happen less when your laying down? I would keep your fluid intake up, try to get salt in and work towards a POTS/Dysautonomia diagnosis. If a local cardiologist is willing they can work off the simple first steps for treatment of POTS. An easy way to diagnose an EDS/POTS patient is doing a "poor mans tilt table" which is NOT a real tilt table test. You can also stand yourself upright, don't move and after 5min see if your legs become a red, purple, blue color (indicating your blood is not returning to your head). Of course if it causes a convulsive episode before that time you also have an indication. I would really go for the diagnosis, take a look at www.dinet.org and send an email out to either Dr. Blaire Grubb in Ohio or Dr. Hassan Abdallah in Virginia, tell them your story and ask what they can do.

Lisa

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Wow..thanks so much my friends...i will be doing further research in these areas as well. God bless u all!

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Sandraf617, As I was getting ready to reply, I reviewed all of what others had to say... So as not to be redundant I want to say, you have already received incredible support and advice!!!! I AM in the mental health field and truly believe first that it is MOST important to very seriously explore an individuals organic (meaning physical health conditions). While it is completely appropriate to support and discuss a patients psychology (after all, having an illness puts incredible stress on a body system!), it is of utmost importance to rule out some sort of dysfunction. I am so supportive of the positions of Shrabs and LisaSimmons. I think places to start are exploring POTS/Dysautonomia. This can be done easily online, and as LisaSimmons suggests some fixes can be done without much expense. You may be able to raise the head of your bed a few inches, increase salt and fluid, etc. Some individuals with dysautonomia (especially with no treatment) may have autonomic seizures. It is possible that you are being misdiagnosed with "pseudoseizures" or conversion disorder. As you hear from Shrabs story this this is all too familiar. When doctors are at a loss and are frustrated themselves, they all to often diagnose a psychiatric illness. I hope you will find good medical answers as well as some good support for all you are going through. Both are important.

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Thanks so much.. i will be looking into all these options probably later today as I am not feeling well at all right now...completely out of all of my meds for a few days now and i think i maybe having some withdrawal issues...gonna try and rest this morning..please keep me in ur prayers my friends

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I think you have been given great advice already. I will, however, add my 2cents worth. Last time I was in the hospital, I had
a seizure, which after an EEG was negative, was told I had a pseudoseizure. So far that is the only one I have had. That was
2-3 mos ago.
About being turned down for disability, what has been said was closely my experience. I was denied the first time and
everyone told me that always happens. I got a lawyer (Friedman, always on TV) saw them, followed what they said and my
diability was approved. We never even went to court.
You are having a very rough time and I will keep you in my prayers.
Donna

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I was told to have this condition by doctors in medical ward and sent to psyciatric. However they dont want to confirm it as conversion since i have hyperaldosterone. I have trouble walking and driving. It is frustrated when there is no proper diagnosis and treatment.

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If you feel that these are true "seizures" or convulsive episodes, then by all means you should look deeper into the POTS issues. There are so many things that can cause convulsive sycope. The heart can cause many syncopal/ convulsive type issues. Look for a cardiologist that is familiar with POTS. Dr. Blair Grubb, from the University of Toledo is awesome and well worth the time. Once you really get the correct diagnosis, then you can start with some meds to try and treat some of the symptoms. Don't let anyone tell you that they are pseuedo seizures. I got to the point that I would tell Drs. that they were not allowed to say that around me, because they did not know what was wrong with my son. I was about ready to punch the in the face...and on more than one occasion. Just because they do not know what is wrong does not mean it is any less of a medical condition. Search on line and dig for the answers you need. It is in your best interests to do that. Good luck dear one. Kathie

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Hi Sandra,

Your story sounds a lot like mine. Psuedo-seizure is a term neurologist like to use to get difficult patients out of their offices quickly, and out of all the doctors I have had to deal with in my life neurologists are some of the most un-godly horrible human beings I have ever encountered. Keep in mind that complex partial seizure are very difficult to diagnose even with EEG - the sensors have to be set very deeply. What it sounds like to me, and forgive me if I'm wrong, but think your probably experiencing some horrible freaky panic attacks. Mine went on for years and years, I went to psychs, shrinks, then neuros - but the one who diagnosed what was going on with me was an Endocrinologist. I had been doing meditation for a long time, and I would get these "episodes" - I would look for a psychological connection and wouldn't be able to find it, something "physical" was going on - so, I spent $120 or so, bought a glucometer and strips, and started testing my blood sugar when I would have my "episodes". Sure enough, I would get anxious, sweaty, shaky, panicked, freaky - then I would test, my sugar would be 50, 40, sometimes 35 - and shebang "Pseudo-seizure" - (I'm being sarcastic I hope you know) - I was having a complex-partial seizure, the brain isn't happy when it runs out of glucose. My endocrinologist sure as heck knew what was happening. Turns out, I have hypoglycemia and Celiacs disease. (This after a lifetime of having shrinks, psych, and neuros telling me I was a complete flaming psycho.

Stick to your guns, and have faith. Go to a endo and get tested (you could have something else going on - but I know that stuff like this is "always physical" - I don't believe people have problems like this and it's "because their mental cases" that's nonsense, then try to find a good neuro/psych. If your unemployed right now, start a diet for hypoglycemia - maybe cut the gluten, casein out also, it will help your health and certainly won't hurt. Lamictal has a worked wonderfully for me, used it for years but now happily completely medication free.

Good luck! ; )

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Hi,

My daughter sounds a like yours Aurora...and I did the same things as you did. Now we are awaiting a diagnosis of POTS she gets eval. in Sept. but she goes thru the same passing out or on the verge of it. and then starts to shake as well. seizure like. And then she is exhausted and weak after she has one of the attacks. Hang in there sandraf617.

Tracy K

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Upaya66,
Thanks.. I understand completely.. Neuro doctors are the worse.. they are quick to call u crazy! I'm like man, I have 2 degrees and a plenty certifications, I aint crazy I just want to know whats wrong so I can move on with my life! lol Anyway, I was also tested for Celiac Disease last years.. they found little traces of it, so I did start the gluten free diet as well.. so sometimes I am ok but then the seizures just come out of no where. I tried lamictal for a few months and it did nothing.. I started Kepra some months ago and for the 1st 7 weeks, I was seizure free...then from out of no where, I fell out and had a seizure and from then on... they started coming back to back all over again... I had one this morning while taking a shower... started vomitting, called for my sister to help me because I was very dizzy and eyes were blurry and before I knew it, I opened my eyes and she was standing over my head asking me was I alright.. Apparently I had made it out of the shower before she came in the room and managed to get to the ground before it started.. Of course by then my head and body was hurting me so bad.. so she helped me to bed and I slept for the last few hours...

I have contacted Friedman & Friedman thanks Donna68.. waiting for a reply call... I have also contacted the MAYO Clinic to find out about getting tested for POTS.. I really appreciate all of your help my friends and I will keep you posted. God Bless!

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Hey! I'm also facing the misdiagnosis of psychogenic non-epileptic seizures (PNES). They have officially changed the name because the name pseudo-seizures because it was felt with that name people and doctors were not giving the syndrome enough weight. *derisive snort*

I mean, honestly what did they expect??? You tell someone all of these seizures that have taken over your life that they are all somehow your fault because they're psychological and see how well that flies. It's like having EDS but being told you're a hypochondriac, I think that's why this particular diagnosis has made me so furious.

They dress it up in nice wording, make the description as inoffensive as possible but it still comes back to the same thing: this is a psychological disorder, you're INSANE. GET OUTTA HERE, CRAZY WOMAN!!!

Ugh. Doctors do this when its too complicated to come up with a real answer. They just put it all back on us, the patients, and let us suffer the consequences.

I have a couple of bits of advice for you. Do not give up! If PNES is *not* what you think you have be confrontation. Tell them I don't think this is what I have.

Secondly, do your research on the disease they think you have. You can point out how you are alike and unalike. Do you have an epileptic diagnosis you believe you have? Find out about that one. Collect all you doctor's clinical notes, plus any MRIs and EEGs.

Third, you are the one that really knows what's happening, not a doctor. As such, I think keeping a seizure diary helps. Simple stuff. Print out a calendar, put a star on a day you have a seizure. Two stars for one you had a particularly bad or long seizure.

Describe your seizures IN DETAIL. From how they start, what sets them off, WHAT YOU DO DURING THE SEIZURE, what happens after the seizure. Detail it all.

As for myself, I believe I have non-epileptic seizures resulting in tics (phonic and motor) caused by brain trauma from a car accident six months ago. Tics, even non-epileptic seizure types, are considered to be part of the movement neurological specialty and not a epileptologist's specialty.

Please don't give up. You're not crazy. I believe you are suffering and there is a doctor who will too. Keep looking for better healthcare professionals in your life. I encourage you to do research and to resist being labeled with a diagnosis unless you truly feel that this describes you.

Good luck and you aren't alone in your struggles.

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