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Old 06-27-2011, 02:22 AM
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Unhappy Pseudoseizures are they connected to a type of barotrauma?


My name is Heidi, I am an ex military wife station in Ft Hood. On my ex husband second tour of leave of Freedom Iraq, he came home for r&r for the 4th of july weekend. That 4th of july weekend we did the lake and water park. I have a very high tolance to pain to begin with two nature child birth. Did that weekend in 2005 changed my life forever or a huge misdosage?

I am so heart felt by all the pleads for help, as I am looking for answer. Being treated like I am a pure mental case has left me as hopeless. My most humilating trip to the ER. I was placed in a wheel chair in the lobby for an hour having a seizure. Only the complaints of the people in the lobby got me into the room. I was only in the room 2 min, I didnt even see a doctor and was released. They told me it was not an emergency. The people in the lobby were totaly shocked when they saw me leave in worse shape and no treatment. I know my pain is real. And it has sent me searching for my own dianoses.
I have read alot about causes of seizures, and I found that pain is realated. I also started looking for why i have unbareable pain extreme head pressure. I can't go out in public or have a job or watch tv or radio. Even the sounds of the motor of my pc sets them off.

One night about a week ago I was doing research on clogged ears, grand mals I read every article that can cause the pressure on my head. Then I ran across Barotrauma.
That night my seizures welcome me with full force. And for some odd reason I started decompressing my ears by opening my jaw. With in a matter of mintues the extremely painful pressure just stopped and then my seizure stopped. I continued decompressing my ears the next day and my head just completely feels normal. But with the painful pressure gone only then I realize my ears cannot pop and my eustachian tubes are super huge and this is where my pulse throbbs. Is this glue ear? Barotrauma, PET?
It has been a week now and I actully was able to get out of bed and do yard work for the first time in six years. And with me living in a military town how am I going to get them to even look at my ears when I cant get past the front doors. I have not had a seizure since I did that and i havent felt this good in years. Is this the beginning of the end?

Please help. before I have another seizure
Heidi Quitana
Killeen Texas

Last edited by heidi_quintana; 06-27-2011 at 05:38 AM.
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Old 06-27-2011, 08:04 AM
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Hi Heidi, welcome to CWE!

Is it possible that you got some sort of chronic ear infection at the water park? (Barotrauma is less likely unless you were scuba diving and made a very sudden ascent.) An infection of the middle ear will cause swollen eustachian tubes. A chronic ear infection can sometimes create to a cyst called a cholesteatoma, and in rare cases a cholesteatoma can put pressure on the temporal lobe and cause seizures. If you haven't already, you might want to see an Ear, Nose and Throat Specialist, if only to have the swollen tubes checked out.

What kind of seizures do you have? It's a good idea to keep a journal of them -- when they occur, what happens during them, how long they last, how frequently they happen. It's also good to note other issues: When your headaches occur relative to the seizures, your general health, activities and eating habits, etc. A journal can potentially help identify patterns and triggers related to your symptoms, and can be helpful when you are talking to a doctor.

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Old 06-27-2011, 12:54 PM
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I have Pseudoseizures and they have been with me for 6 years. I have seen every doctor within 100miles. Having every test run, like eeg mri mra. nothing. They have treated me for depression countless times. I already did the note taking parts of my daily habits. My trigger is whisles, an lots of noise all at once. The pain gets so bad that the refrigator, a/c and even my motor from my pc will put me in a world of lava pitted pain.
I have extreme head pressure, and over whelming tenion all over my arms face leg..ok every where.The pain is so bad it looks like stress and neverousness. I have a lump under both ears. Larger under left ear. I feel like echoes bouncing around my head, dizzines to where I need help getting around. Upto a week ago before I did the ear decompression I have seizures daily and in bed most of every day. Like I said in my thread every since I stumble on clogged ears and I did the decompressions on my ears I feel great I am no longer exhausted the pain in my head is gone now. I am now wondering about my house with out help. Once I was dianosed with these seizures I cant get a doctor to take me serious after that. I get raised eye brows and extremely rude comments.
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Old 06-27-2011, 05:02 PM
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Unfortunately, "pseudoseizures" is the diagnosis a lot of doctors slap on when nothing shows up on the EEG. But many, many people with confirmed epilepsy never have a positive EEG. Seizures that originate near the temporal lobe (near the ear) can be too deep in the brain to show up on the EEG.

I think you need to see another specialist or two, starting with an ENT to take a look at the lumps under your ears and help with the chronic ear pressure issues.
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Old 06-27-2011, 06:10 PM
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Originally Posted by Nakamova View Post:
Unfortunately, "pseudoseizures" is the diagnosis a lot of doctors slap on when nothing shows up on the EEG. But many, many people with confirmed epilepsy never have a positive EEG. Seizures that originate near the temporal lobe (near the ear) can be too deep in the brain to show up on the EEG.

I think you need to see another specialist or two, starting with an ENT to take a look at the lumps under your ears and help with the chronic ear pressure issues.


I have temporal lobe epilepsy, and my EEG came up abnormal, but my dr said the seizures he was seeing me have on the Video didnt register as Epileptic seizures. He thought they were non-epileptic seizures. After visits with a psych dr, we both realized the seizures were from abrupt withdrawal of the seizure medications, when he took me off both seizure medications before my video EEG. Ive been on Keppra XR since, and have had no seizures. I would suggest looking into getting a second opinion.
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Old 06-27-2011, 08:03 PM
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I was reading about a woman who had confirmed seizures after an accident was on anti-epileptic drugs then began having differnt seizures-they put her in for video EEG and claimed those were nonepileptic seizures.Somewhere in here psyche that was her response to stress--Im not sure I buy that but Im not an expert and it fits me.Ive spent hours past few days googling pseudoseizures and its amazing every doc and clinic and expert is quick to point to pseudo but nobody pushes the opposite viewpoint--feels like a brushoff of medical docs to psych docs
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Old 06-27-2011, 08:15 PM
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Thank to you all your information is priceless. I am just glad the decompression I discovered has stopped the painful pressure so I was able to feel where the real pain is coming from. I hope this threads helps at least one person to have just the fraction of relief I am having.
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Old 06-28-2011, 10:27 AM
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Nakamova, I was doing research on the cysts. I mu st add I was dianose with lipoma. And I did notice one in my left cheek just a few months ago...could this be related?

As I did my research on the cysts you told me about I have read that its just as hard to get anyone to listen to them until it was almost too late.. Is there any advice on how I can get them to listen to me to help me, with out going through some more costly years of pain?
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Old 06-28-2011, 12:17 PM
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It's hard to know if the lipoma related, since the causes of lipomas are not well understood.

As for getting a doctor to listen to you:
1. Don't be afraid to be persistent -- ask for a second opinion, ask for a referral to another doctor or a specialist.
2. Be prepared with a clear, concise history of your symptoms, listing when they started how they've changed, etc.
3. You might want to consider seeing an osteopath -- they are trained doctors with a holistic perspective, so they are sometimes more receptive finding the underlying cause of a chronic condition. I did a quick Google search, and it looks like there a a few osteopaths in your neck of the woods.
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Old 07-05-2011, 05:13 AM
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Having problems with my insurance now. I will updated what I find out in the future. Now I have information I need to get treated. I am exhausted from my seizures. I still have them when I for get to decompress my ears. I am very grateful for the information provided in this forum. I am sure I have discovered my true condition and excited to progress forward.
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Old 08-06-2011, 02:56 AM
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Talking


Ok now I got that insurance thing fixxed.
Tonight I made it to the hospitpal, I went through the ER. I met a wonderful doctor that listen to all my pains a woes. I explain everything to her as I did in my first thread. She was shock that this was missed for 6 years and only then I disclose the fact I have been repeatly misdianose with pseudoseizures and that they never looked into my ears ever. I explain to her before I realized I couldnt pop my ears and decompress to make the air pressure equal I was focuse on the pain in my head that over shawdow any pain in my ears. but after I discover the ear decompression and was able to get the pressure off my head is when I discovered my ears are killing me. This wonderful doctor gave me a dianose of eustachian tube dysfunction. And she gave me a referral to ENT. Who knows I am sure i am on a path now with less pain and a job I can go to with out seizures. I am sure this dianoses will change maybe with more test on my ears. The reason for me putting my story out there is because I know I wasnt crazy making up this pain. The pain I felt made death a welcome friend if it came. Now with the hope of living a some what painless life is giving me so much more to look forward to. If you know your pain is real. Please stop and see if you can pop your ears. If not look up methods on how to decompress your ears and tell your doctor what you have discovered. I was so frighten to go to the doctor tonight. But I do have alot of fight left and so do you if you still reading this. I will keep posting on what the ENT says on thread in hopes no one else goes through this even one more day of sheer pain.
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Old 09-10-2011, 12:57 AM
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After a long awaited appointment to ENT it finially came. The doctor put a numming mist in my nose both side. Then he put a long skinney camera down each side. Yes it was really uncomfortable to say the least. He could not go all the way down on left side, but manage to get it all the way into the right side. At the moment I am dianosed with eustachian tube dysfunction. BUT, yes there is always that but. He is testing me for nasopharyngeal tumors. I have allot of test yet to be done over the next 2 months. When I see him again in 2 month is when he will let me know if the dianoses changes. I want to thank nakanova for her valuable information that lead my online search for my true dianoses. I owe her a great deal and I hope she see this thread once again. So she knows how greatful I am for her on this site. Because of a misdianoses I may have cancer that has gone undetected for 6 very painful years. The next 2 months is going to be the hardest time of my life not knowing if I have this very life threating cancer. I have research this nasopharyngeal tumors. And I dont like what I have read. But it has every little thing i feel and been going through. In my search for this misdianoses I never thought that I may hold the answer to maybe a handful of people that know they dont have a mental problem to cause so much pain. If you have pseudoseizures and you feel your pain is very real. please read my thread over again and just maybe I have given the littlest of a clue to direact your doctor before its to late. I will post again when I get my resultback in 2 months. Thank you for your time.
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Old 09-10-2011, 11:15 AM
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Hi heidi --

I'm glad that you are closer to a diagnosis, but I also hope so very much that it is not cancer. Please let us know how things progress with the tests and how you are feeling.
Thank you for posting, you are in my thoughts.
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Old 09-18-2011, 02:17 PM
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Went to a new PCM (Primary Care Manager) I told him everything I told my ENT. Of all my pains and woes. I even added what the ENT doctor is looking for and I have been dianosed with ETD. And true to form with out even looking at me. He said " there is too many things wrong with you." "You have depression..!" I told him no I do not have depression. Then he stuck that ear scope as hard as he could in my ear and the pain about knocked me off the table. He got smart and said did I hurt you. Whats wrong with you. I told him he hurt my ear. He still insisted that I have depression, so much that he gave he normal speach on how depression can hurt you all over. I dont disagree depression does this. But I presented you with 1 Dianose of ETD and possible cancer. He was so focus on being right he turned to my husband and try to convence him as well I have depression. My husband has been by my side through the times my eustachian tubes has flared up and felt them convulse out of control. My husband and I ended the appointment. The doctor left and the nurse was in shock as well by the doctors treatment towards me. She wrote down a number to another doctor.
I had this experience with every PCM I have encountered. Like I said in my very first thread I have been treated multiple times for depression and still had the same pain. I have notice if you only give a little information like my ears hurt and feel clogged you will get on a path to the right dianoses. But if you let them know all your pains and woes at once you have depression. I believe that a doctor should run more test to eliminate other factors like animea, and kindey functions. To cancer to the flu. They need to start running more tests before they cause you more damage like me with my ears. I know why the doctor said it was depression cause were in a military town and my husband showed up in uniform. Since the war broke out for Freedom Iraq it seem like doctor has stopped simple testing. I hope they realize what they are doing someday.

I also must add since I discovered I couldn't pop my ears and started decompressing them daily and got on the RIGHT medicine now. I GOT MY JOB BACK YES..! It has been a week now and I am slowly starting to feel better and better. I am so very happy to nakamova for getting me to where I am to day. I no longer have up to 200 seizures a day and I am no longer bed ridden. Life is looking wonderful yet once again..I still have pain yes, but not to the level I was when I first started posting on this thread. I finding out that forums like this, just people telling there stories has helped me more then all the doctors has in a 100 mile radius. I am so grateful to this forum.

Last edited by heidi_quintana; 09-18-2011 at 02:29 PM. Reason: Added another paragraph
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Old 09-18-2011, 11:06 PM
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That doctor sounds horrendous, an absolute nightmare. I can't believe he would treat you so poorly. I'm glad your husband was there for support, and the nurse too. I hope you can find a real doctor soon.

Congrats on getting your job back! That's terrific.
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Old 09-18-2011, 11:16 PM
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I always love to hear good news... even if you are being challenged.
Hope that you get good news soon, or at least a therapy for improvement
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Old 10-19-2011, 12:48 AM
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I am so happy! No cancer. I do have ETD. Please understand I am glad it is just that simple. Being misdianose for 6 years has been the most worst time of my life. I am glad the medicine I am on is doing the trick. ETD is very hard to dianose. So dont give up!. Thanks to every one in this forum with out this forum I would have never got dianose with the real reason for my seizures. Remember seizures can be cause by sheer pain.
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Old 10-19-2011, 07:39 AM
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Hooray, no cancer! That's GREAT news! I hope the ETD doesn't get any worse, and that the medicine is helping minimize any pain.
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Old 12-18-2011, 01:58 PM
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Its been awhile since I have been here. I thought I would update my post. My doc is now treating me for TMJ. It can as well cause the ETD. I now sleep w a night guard to help my jaw relax. I have broke through the meds I was on and the doctor said my body adapted to the med and they were not working no more so all new med and feeling sleepy and exhausted. It is taking alot longer now to recover from the seizures. I guess its because I force my self to work. But I love having extra money. It felt good to shop online and buy my family an awesome christmas this year.
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Old 12-18-2011, 07:53 PM
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I hope the new med helps, I know it's hard to go from one to another.
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