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Kat2010

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Sorry If theres already a thread about this but am really looking for as much help as i can get .

I currently am living and caring for my best friend who is married and has a beautiful 18 month old baby girl . I didnt realise how much her condition ruled her life until i moved in with her . She is in constant need for care. Her so called Doctors who push her from pillar to post with different things with no soultions to her problem. She has seiziours every other day at the drop of a pin we could be any where shes fallen down stairs blocking our front door , soooo many times she has fallen and missed her daughter by centermeters. we are in a&e at least once a week , the nurses telling her to snap out of it as she is "apparently " putting it on ! her mood swings are like nothing i have ever seen before , she has screamed and shouted at me for the smallest things and even kicked punched and pushed me to the floor for really no reason at all ! i cant imagine the strain that is on her husband day in day out and i have only been helping her for the last 5 months and i am almost at my wits end . I can't belive that Doctors no nothing about this condition and that they advise the nurses that they are putting on the seziours . My friend has a Cyst on her brain apparently the size of an apple and im no medical professional but that must put some strain on her but doctors refuse to look any futher in to it and just say you been dianoised with PNES thats what it is . I have my friend daily in tears saying its not fair why wont any body help her. Today was almost the last straw for me when her out burst turnt in to an attack on me kicking and punching me , while most normal people would walk away from a situation like that , I know that is not her and we need help . If any one knows any one that has been in this situation that has got help from doctors or any specialists please contact me . Also she has touretts , OCD and under activie thirod just to top it all off .

( Sorry i am dreadful at spelling )
 
Hi Kat, welcome to CWE!

It's great that you are standing by your friend, and looking for ways to help. See if you can use your influence to get her to a doctor. She needs to get some second and third opinions ASAP on what's going on. Even if her seizures are psychogenic (and they might not be) as opposed to epileptic, they need to be treated. Set up some appointments with a new neurologist and/or g.p. The emotional symptoms and the siezures could be related to the brain cyst, or her hypothyroidism, or even a side effect of meds -- there's no way to know for sure without a comprehensive diagnostic work-up by a good physician.


Best,
Nakamova
 
She also

needsto have her EEGs redone, I'm thinking. How long of a period of time did they spend on doing her EEGs? 20 minutes? an hour? 2 hours? If that's the cse, INSIST that she has an EEG that is a MINIMUM of 48 to 72 hours. Preferably an ambulatory one, so that her natural triggers, whatever they are, can be used to make the seizures occur, and hopefully show up on the EEG. You see, EEGs only capture seizure activity that is going on when the E patient is hooked up to the EEG machine....it is like a "snapshot in time".

Also, I assume an MRI has been done because of the knowledge of the cyst. Is it not possible to drain the bloomin' thing? Good grief, I have one too, and it will have to be drained eventually. I've already been told how they will do it. Not my idea of fun, but....whatever. Releasing that pressure will HAVE to help.

Like Nakamova said, get 2d, 3d, and even 4th opinions. What you're putting up with is an awful lot, but you're a great friend to do it.

Here's a suggestion. And yes, I've done the thyroid thing too (hypo). I digress.....back to the suggestion. Here it is: Have your friend take either a daily multi-vitamin (certainly can't hurt), or better yet, a dose of B complex vitamins. B vitamins are great for brain health, and while I'm not saying they're going to cure her, they certainly MAY help her.

ALSO: KEEP AN E JOURNAL. Yup, it can be a pain in the arse. But, it will be worth it, and SHOULD help the doctors in the long run.......especially a new one. I have a great list of things to put in it......you'd be surprised at the things that can trigger seizures, including lights, sleep, stress and FOOD. Yes, FOOD. Let me know if you want me to post that list of things.

PNES is not really common. It sounds like the doctors are trying to blow her off more than anything else.

I hope this helped more than it confused you.

And BTW, welcome to CWE.

Meetz
:rock:
 
be safe

Hi and welcome to CWE I agree with the two posts above defiantly need to find a good dr. being in the medical profession myself I completely understand how this can be very difficult to do and to find a good dr. and this is where I have an upper hand with working side by side with some they are ones that I would trust my life with and others I wouldn’t let treat my dog see some doctors only do the minimum and others actually go above and beyond where are you guys from as well you can actually search different doctors online and get their patient reviews and what they actually thought about them only problem can be doctors that are very highly liked by their patients tend to have a long time to get into sometimes also this is a great site see if anyone has a really good dr. that is close to where you guys live also just the tumor itself depending on where it is in the brain can cause massive behavioral changes the brain still has much uncharted territory in the medical profession and I definitely agree with possibly having her get a longer EEG done just like when someone is hooked up to an EKG to look at the heart were only getting a snapshot of what is going on and hoping to catch what is going on and the mood swings could be from her meds or it could be from where the tumor is pressing on or it could be her acting funny post seizure hard to tell but also if she is turning violent that isn’t good either she could hurt you, her husband or her daughter by accident and not be intending to do so have the dr. given you as the caretakers any meds to try and calm her behaviors down when they get this escalated also seems someone needs to look at all her medications and make sure she doesn’t have any polymorphic condition going on that is making her act more out of character from medication interaction hope this helps best of luck to all of you be safe
 
yes, I agree with the above!
I also think that OCD and Tourettes don't go well hand in hand. I had a friend who had tourettes, and his ticks would eat away at him until he did them. Random things like yelling "METAL" or in a few cases, hurting himself or others. He once hit a brick wall bare fist and broke alot of bones in his hand. but he couldnt stop it. He said the pain inside from not doing it, was a million times worse than actually hitting it.
So your friend might be doing the same thing. Unable to control her outbursts because they are eating away at her. So her seizures could be adding to the ticks she has.

The cyst could be making her seizures worse, and depending on how long she has been diagnosed as having Tourettes, it may be possible that she may be acting out like a form of seizure. Complex partials can sometimes do that, as well as being in the post-ictal state. For no reason at all I once bit my fiance during a complex partial, and punched him in the face during the post-ictal phase.

its anbodys guess, but she does need to be looked at more. And she will need your continued support. It must be super tough on her as well.
 
Thank you all for your replys we are trying to get other doctors to look at her but no one will it's a continued battle with our gp and hospital we also written complaints about the way the hospital staff treat her . We have looked in to making a short documentary about her condition and sending it to diffrent people to help . We video record as many of her sizours as possiable and her doctors even have copies but I doubt have even looked at them .
 
Just wanted to say I think you are a wonderful person! Wish I could give some advice but am not familiar with your health system. In general I would say complain to the highest level person, keep asking to see another doctor (or take her to another doctor) and basicly make as much noise as possible
 
We have just sent off a letter to the head of the hospital so fingers cross we can get the ball rolling :)

I have asked Kayleigh to sign up to this forum so that she can share are experiences so hopfully it will get better soon :)

x
 
Is there another hospital available? Even if it's farther away, it might be worth it to find more sympathetic care.
 
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