Help for my BFF

[losingmybff]

Hello to everyone! I do not have epilepsy but my best friend does. I am searching for answers and ways to help her cope and any suggestions to help manage her care. She was diagnosed in 2009 with FLE but has not had consistent care since. She does not respond well to medication and her seizures have increased considerably in the past few months. Some ER Drs and nurses have mentioned pseudo or psychogenic seizures as well. Any comments, suggestions or avenues to pursue is greatly appreciated.

 

[stacey]

Hi and welcome!

I congratulate you for trying to help out your friend , it's nice when you have people willing to standby you when things get tough.

Medicines are different for each individual and the side effects are the same, they effect everyone differently. If she hasn't had an appointment with a neurologist or epileptologist then it is highly recommended because they are specialised to help in epilepsy.

If she can come on here too and explain her symptoms a little then there are plenty of people here willing to offer advice and support.

Best wishes

 

[Fedup]

losingmybff

First let me say you are very welcome to C.W.E. and I agree with Stacey helping a friend is something seldom done. Its like trial and error with medications to find one that suits but yes she needs an neurologist, ER doctors and nurses are good but unfortunately they do not understand epilepsy. There are a few things you need to do, like keeping a diary (something she should do) and write down everything that happens as best you remember and if you are present to help by telling her what you seen. A bit more info would be good as well.

 

[losingmybff]

Thank you so much for your replies... She has seen a neurologist as that is how she received the FLE diagnoses. She had a regular neuro when she still lived in the same town as me however she has since moved to Austin Tx and now is seen in a clinic type setting where she never is seen by the same Dr twice. She just had an appt on the 4th of Oct which I attended with her. Again it was a Dr she had never seen before and so she went thru the usual explaining everything all over again. That seems to stress her out a lot. She has been on topomax for several months and at first it seemed to work well. However as I said her activity has increased recently. So this Dr prescribed lamictal in addition to the topomax. She did not respond well and has had 2 major events which sent her to the ER both times. They gave her valium in the ER and observed her for awhile and then sent her home. She has an appt on the 29th of this month at the University Health System Epilepsy center in San Antonio which she made at my urging. I feel that her care would be managed better there since it is an epilepsy center and not just a mental health clinic. I feel that something major has changed since her initial diagnoses and would like to have her completely re-evaluted if at all possible. That is our goal for her at present. I also want to add that she is under a great deal of stress on a daily basis at work and at home. Her job has been greatly affected in recent months due to her increased activity and she is in real danger of being fired. Also she is a single mother with 4 sons whose ages range from 6 to 11. I have kept notes as much as I can being that we don't live in the same city and I know she has a diary but not sure how well she has kept up with it. Very long winded I know but again any advice is very much appreciated.

 

[Fedup]

losingmybff

Its good she has seen a neurologist, its not a good idea seeing different doctors every time she goes for an appointment, it would be a lot better to just have one doctor and one neurologist who would get to know her and so be able to help her. Even in general stress is not good no matter how it comes and like I said the thing with the medication is hit and miss at best of times, you just have to find something that suits you, everybody is different. It was a good move on your part about the Epilepsy center, her care should be managed better. It will take time to get everything working together but it will happen.

 

[stacey]

Hi

I applaud her for being a single mum it's hard work!!

Is there any way that she can get a referral from a Gp for a neurologist that she can stick with because then the treatment will be more organised.

For my son I took records of things like, what he ate at the time, what activity he was doing, temperature , what moods he was in and also things like fatigue can be a trigger. It's a lot to think about but it's worth it when she can take it to the doc and explain precisely what's been happening and why.

I really give a big hug to you for standing up so strongly for your friend you make me feel so proud that she has someone like you there for her.

I don't know what's available in America as far as work place advocacy but have a look around and that may be an option for her to make work life balance better. Many people choose not to tell their work because of the stigma attached but she may have to if she has uncontrolled epilepsy at this point.

All the best for her

 

[chop456]

There are some great words of advice here. I just want to add that you seem like one terrific best friend! It sounds like you are very supportive and I commend you for reaching out for support and ideas. Best of luck to you and more importantly, your friend!

 

[losingmybff]

Thank you all so much for your words of encouragement. (Stacey) Her job is aware of her condition because she has had a couple of events while working. They however are not very supportive and seem to be more interested in alienating her. Which breaks my heart because she did love her job and was very good at it till her activity increased. It has unfortunately greatly affected her performance. One of the ER Drs suggested she apply for disability but she needs to be unemployed first. I have already been looking into that as a possibility because of her situation at work. Very long process though. She is very aware of her triggers and mostly they are smells and any type of stress she cannot easily work through. As for the neurologist... I am hopeful the appointment she has in a couple of weeks at the epilepsy center will be where her care will be located from now on. Will know more after the visit but again I am hopeful. I just want her to get the care she needs to get her back to enjoying her life again. Also was wondering if she should be seeing some type of therapist? I feel she should because some days her lows are very scary for me. Again thank you all for your help. Any and all will be explored!

 

[Fedup]

Depression in a way is a side effect of the medication most of us take. I presume you mean mood swings this could be the medication she is on itself, it may not suit and is something you should bring up at your appointment.

 

[losingmybff]

(Fedup) Yes her mood swings are a big concern. I know depression is a big part of this journey and I am definitely gonna bring it up at the appointment. I feel that some psychological help would be beneficial to her as well though. She is very sensitive at present so I am reluctant to bring up the issue. I have in the past and it upset her alot.

 

[Fedup]

If the mood swings are of concern I would guess the medication needs changing and it may be touchy to talk about but she has to talk and realise it is happening.

 

[Nakamova]

Hi losingmybff --

I hope the upcoming appointment at the Epilepsy will prove a turning point for your friend. Many of us have found that a certain persistence is required in order to find not only the right medication, but the right neurologist as well. In your friend's case, FLE probably makes things more complicated, since it tends to be misdiagnosed as psychogenic seizures.

You can help your friend prepare for the appointment by making sure she has an up-to-date medical history handy. It's also good to have a written set of questions for the neurologist, and to keep a written record of the answers as well as any other information the neuro provides. Typical questions would be about medications (options, dosages, side effects), as well as practical details such as how to get in touch with the neurologist with any additional questions.

In the meantime, your friend may want to look at finding ways to reduce her stress. (I realize this isn't always easy.) It can help to build in mini-breaks throughout the day where she focuses on her breathing for a few minutes. In addition, making sure to eat, drink, and sleep properly can go along way as well. Good information can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

As mentioned above, your friend may find it useful to join CWE at some point -- there's lots of good support to be found here.

Best,
Nakamova

 

[losingmybff]

(Fedup) The mood swings and depression are a great concern for both of us. I think I see it a little more clearly than she does though because I can see how much her attitude towards life has changed. I fully intend to talk with the Dr about her medications and address her depression. (Nakamova) I too hope this will be a turning point for her care. It is very frustrating especially now that her activity has increased and they are labelling her with psychogenic seizures after her initial diagnoses of FLE. She feels that they are saying she is faking and that is affecting her even more. I already have a list of questions for the Dr that I plan on asking and plan on discussing them with her before we go. However she has been taken to the ER everyday the last 3 days and again they say she is presenting with psychogenic seizures. Trying to get her to focus on things we need to discuss is almost impossible because mentally she is extremely fragile right now. I feel like she is having a breakdown and am doing evrything within my power to reassure her that normalcy is possible but that it's just gonna take some time and effort. Reducing her stress is another touchy subject due to her situation at home with a less than supportive boyfriend. I spoke with her this morning about joining CWE and am certain she will as soon as she is able. In the meantime I am passing along all the info I am gathering in her brief moments of peace. Thank you both so much for your input. I am already encouraged with the support and help from this site.

 

[Nakamova]

You might let her know that psychogenic seizures are not considered "fake" seizures. They may be caused by emotional stressors rather than abnormal brainwaves, but they can still result in significant physical pain. Some folks have both epileptic and psychogenic seizures, and receive treatment for both. (Treatment for psychogenic seizures usually involves therapeutic counseling and Cognitive Behavioral Therapy).

That said, many inexperienced neurologists assume that the absence of a positive EEG is definitive proof that seizures are psychogenic in origin. Given that about 20% of people with epilepsy have normal EEGs, such a diagnosis should not be made lightly. If her new neurologist at the Epilepsy Center is considering a diagnosis of PNES, you may have to argue otherwise on her behalf.