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need answers can anyone help

I have pseudotumor cerebri and I have experienced 5 episoded of periodic catatonia in the last year has anyone ever heard of this before? I have had all the tests MRI, EEG, Cat Scan they are all normal. I am also on Diamox 500mg Twice daily and I also suffer from hypothyroidism. I'm very frustrated and confused PLEASE HELP IF YOU HAVE ANY INSIGHT!!!!  It would be greatly appreciated.

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Hi , I also have pseudotumor cerbri. I was diagnosed last year and had a vp shunt put in. I am curios about you saying you have had catatonia, what do you mean? I ask that because I have had alot of "episodes" in the last six months. Some have been worse then others, but what happens to me is I can't move my whole body or talk I can only grunt to answer someone, also my left arm will stay locked up for awhile after I start to come out of it. I have been to the er a few times for it, they think it is seizures (I go for an eeg in two weeks) I would like to know if that is similar to what happens to you?
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Hi bsbubble!

I'm sorry to hear that you have to endure all of these.  Several things might be happening.    One is that the Diamox dosage may be insufficient so as to produce symptoms.  What happens is when you accumulate too much fluid in the brain, pressure increases, and the neurons are not able to function properly.  Maybe your "catatonia" is a manifestation of this phenomenon.  Or it can be a seizure equivalent just like with Layla77's.  I suggest you establish constant communication with your neurologist so that he may be able to adjust your medications.  Treating pseudotumor cerebri entails a very good physician-patient relationship.

I admire all of you for enduring this kind of condition.  Be strong and seek support from your loved ones.  My regards...
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Avatar universal
Hi, Thank you for your response. I am very sorry to hear about you having these episodes.
I have may episodes just like that the very last one I had was last week and I passed out and could not talk nor could I move any of my body everything began to come back slowly however wevery time I get theses episodes they seem to be getting worse than the last one. My Dr. keeps telling me that its all in my head and that I suffer from depression and the physchologist says that I am very mentally sound. They refuse to do a spinal tap to check my opening pressure and they can't find anything clinically wrong with me. I really between the two us thta maybe we can figure this out.
GOD Bless you and I hope to hear about your results with you EEG soon. GOOD LUCK TO YOU!!
Jennifer
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Avatar universal
HI, Jennifer I am also sorry to hear that you are going thru this, but at the same time its comforting to know someone else is experiencing the same thing, and that it's not all in our head :) well In a sense it is all in our head lol. I will let you know what I find out with my eeg is set for the 28th I know some how this is linked to IH.
You said your eeg was normal, did they say or has any doctor said that it might be seizures?
Have you noticed if anything brought on the episodes (don't know what else to call them) I have noticed that it is when I feel confused or it has also happened when I was upset or to much to think about, I was in Walmart trying to pick out a cordless phone and I was overwelmed by the choices and what one to pick this one does this but that one does that, and then it happened I couldn't move, I was just standing there staring at the phones thinking ok I need to move but I couldn't. My mom finally came along and she already knew what was wrong with me. Another time I was on the phone with my husband we were kinda arguing, and then all of a sudden this feeling came over me like I really don't care what we are arguing about, I think I even forgot what we were disagreeing about. So I said to him call my mom (he was out of town) I don't feel right I didnt feel like I could call her and it felt like I couldnt move my body. He called me back and I was able to answer the phone but I felt less energy and then I couldnt answer him I could only grunt it felt like I had no control over my body. My mom came to my house and when she got here I really couldnt move or talk she called the ambulance, and they came. When these episodes happen I feel no control over my body and I can't talk, they last about three to five minutes and when I "come out" of them I am very week sometimes I am nauseated but I am very tired. After I had a different eposide at walmart ( maybe I need to stay out of walmart lol) I slept in a deep deep sleep on my way home for about 30min and when I woke up I was really confused. and another episode was brought on by me stubbing my toe. sorry to keep rambling on but I wonder if what is happing to you is similar?
I hope you get some answers soon, don't you just hate when they won't give you a spinal tap, it's not like we really want one I mean who wants a spinal tap! :) I had to fight for my last one my opening pressure was normal(I do have a shunt tho and a suspected csf leek from my nose) but they did tell me I have elevated protein in my csf not sure what that means yet. I hope my nero will have some answers for me on the 28th
Hoping you are having a pain free and episode free day
Layla
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Avatar universal
HI, well actually my episodes are only when i'm standing up and I get this feeling real quick like I just don't fel right then all of a sudden down I go and I'm out for the count sometimes it lasts for a couple of hours ans sometimes like my last episode it lasted for about 5 hours and I coul not talk move my arms legs or neck or anything all my function came back slowly but it can take up to a few days before I have the use of my limbs. This last time which was about 9 days ago I was with my boyfriend having a great day we went to the Mrs. Fishers potatoe chip factory (I guess Don't remenber that day) but anyway I felt a little dizzy and then within seconds I went down and could'nt do or move anything at all they called the ambulance that at about 1pm and the next thing I know its 6pm and I'm in the hospital in the trauma ward???
It does in way seem like our episodes are similar however I will tell you that with each one I have they are getting worse. This lasst one was the worst thus far. It took 3 1/2 days for me to get all my movement back in my legs. Please let me know what they find out on your EEG. on the 28th ok. I have to have surgery on the 29th Tonsils YEAH!!!!!
I really hope that you get some answers and get them soon I have been doing alot of research on the subject and have found out that is very oten misdiagnosed. I just found out about another possible problem you might want to look into its called ORTHOSTATIC INTOLERANCE Check it oot it has alot of the same symptoms that we exhibit. Hope this help look forward to talking with you again real soon.
Hope you also have an episode free day!!!   GOD Bless
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Avatar universal
I am so sorry you are going thru that, I'm sure that it is very scary, it is scary to pass out and then come to and not know what happend. Such a weird feeling.I have had some times that I have passed out but not for along time just a few minutes.  I hope you find answers soon. Easier said then done, I know.
I looked at that orthostatic intolerance and it sounds or is similar to pots have you looked at that I think they are connected. I had a website for pots bookmarked because alot of the symptoms I have I get heart palptations, racing heart and I also have had excrusiating (sp) pain in my stomach that has made me pass out before. I experinced that same pain when I was in the hospital and after my shunt surgey I was in intensive care hooked up to all the monitoring equipment, and the nurse wanted me to sit in a chair, and when I stood up I felt like I was going to pass out I had that horrible pain in my stomach and the nurse I could see the freaked out look on her face because my heart rate dropped and she was telling me breath in thru your mouth and out,I didn't pass out but I came extremly close. I told the nurse that that happens to me at home and she said, that it was my vagus nerve. I also had a blood clot right after that surgey. So I have kinda wondered about the pots. Not to mention alot of other symptoms.
I used to get a racing heart I would be laying down and my heart would just start racing like 130 bpm but my blood pressure medicine helps keep that under control now.
Good luck with your tonsil surgey. When I had my surgey (vp shunt) in Aug. the only thing I was worried about was how much hair they were going to take off of my head. lol I was scheduled to go on a cruise in three weeks and didn't want my hair to look bad on formal night pretty sad huh? :)
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Thank you for the response again. I went to the eye Dr. yesterday and found out that I have moderate peripherial (sp) vision loss so whats next I don't know just scared now I don't want to go blind!!! I'm glad that that orthostatic intolerance is a possible diagnosis for you at least its new avenue to explore? Well hope you doing great look forward to hearing from u soon!
Take care and GOD Bless!
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Avatar universal
WOW, who would of thought that early the next morning after I typed to you, I passed out while I was on the toilet. I hit my eye and head really bad it was swollen about two inches, and now it is all black and blue. I went to the hospital and they kept me, I just got home today they did alot of tests and of course found nothing. They did an eeg, echocardiogram, and some other test. But the doctor did tell me I possible have POTS I didn't even mention that to him he said it all on his own. how weird is that? he also said something about my vegas nerve.
Anyway the hospital I went to the neurologists that are in my area are not that good my regular neuro is in HOuston,(three hours away) so I will still go see him on Monday. The neuro that saw me in the hospital I told him I was having blury moving vision and he wouldnt even look in my eye so when I got relesed from the hospital I went to my eye doc. and he was just leaving, (he had an appointment)but he looked in my eyes real quick and said to come see him in the morning and he wants to dilate them and look better. He thonks I might be having papaledima (sp)
Have  you had papaledima before with your pseudotumor? Is the vision loss because of damage from papalidema? Is the vision loss permenat? I am so sorry to hear that.
good luck and take care hope you are feeling better soon
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Avatar universal
I am sorry to hear that you were in the hospital and I hope everything turns out weel for you. Maybe the POTS ia diagnosis though, hopefully they will figure it out for you. As far as I go yes the sision loss is permenant, now I have to go see a neurosurgeon to see about possibly getting a shunt put in. I am scared to death about that sdo you have one? If so what is the recovery time and how long was your  surgery? This might sound stupid but I don't want them to shave my head.  I'm not sure about the papildema but I do believe that is whats causing the vision loss. This really sucks for the both of us you know. Well like I said I hope all goes well with you and please keep in touch and you take care of yourself. Let me know all of your updates okj and I will do the same.
Hey one more thing thanks for being there for me it really helps to have some one who knows what your going through to talk to !!! TAKE CARE   YOUR FRIEND JENNIFER
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Avatar universal
Hi dear

Pseudotumor cerebri is a disorder defined clinically by elevated intracranial pressure (pressure of cerebrospinal fluid in the brain), normal cerebrospinal fluid composition, and signs and symptoms of increased intracranial pressure, including papilledema (swelling of the optic disc in the eye). Diamox (as you are receiving) is the treatment of choice for such conditions.

Catatonia is a condition marked by changes in muscle tone in a large number of serious mental and physical illnesses. The causes of catatonia are not known although research indicates some alteration in brain changes and function. Since you suffer from pseudotumor cerebri (some changes in brain function), you may be prone to these catatonic attacks. Catatonia can be treated with the use of certain tranquilizers such as benzodiazepines, and in extreme cases antipsychotic medications also help. You should consult your neurologist and maybe have an extended course of antianxiety drugs. Also, please try to remain calm and relaxed as unnecessary stress also provokes such attacks.

Best..
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Avatar universal
Hi, I sent you a private message
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