Trying to be intelligent about getting ready for VEEG starting the 16th

[Bidwell]

I would be grateful for input as I get ready for an upcoming VEEG. I did one several years ago but at the time I was so passive and so ignorant that I really did not appreciate what was happening. In the interim I have had some bad times because of side effects and general confusion and frustration about how drugs were effecting me and the issue of do I or do I not have seizures. I have taken seriously various bizarre and/or robotic medical personnel while knowing that I am getting increasingly confused and PISSED; and because of time and age, am accumulating symptoms that nobody seems to grasp well enough to be of real help. I am determined to do right by myself this time around and I am hoping that the forum will help me. So here is the first question.
The paperwork from the hospital came today and it says not to discontinue any medication before entering the VEEG unit. I take 250mg Zonisamide. I understand it has a half life of 60 hrs. It sounds like the hospital intends to have me sitting around for over 2 days while that the Z goes out of my system. But I could have just as easily started the process at home! This MIGHT be reasonable on their part. What do you think? Also can you think of any conditions under which they would not discontinue the drugs for the duration of the VEEG? I have suspected that maybe the Z is one reason I have strange problems with eye sight and even hearing.At the same time I credit the Z for focusing me and it has been been better for me than the other anti-epilepsy drugs that have passed through me. I will appreciate whatever thoughts you have about this.

 

[AlohaBird]

Well, if you are concerned that the Z might be a cause of your symptoms then I think it makes sense to maintain status quo until the gerbil (you) gets in the cage where it can be observed. Then they can see you both with and without Z in the mix.

 

[Bidwell]

AlohaB, Thanks. That sounds right to me, too. My worry is that they WON'T eliminate it at all. Can anyone imagine that they would do something like that? The reason I ask is because I am sort of pushing myself into being pro-active if need be since I tend to go along with whatever is being dished out, sometimes to my detriment. in this case, I am adamant that I need to know what happens when the Z is out of my system.

 

[gbpackerfan]

Hey Bidwell. I have had a couple EEG's in my time, one was video. I was never told to stop my meds, only not to sleep for 24 hours before. That being said, I never had to stay at the hospital for them, just at my Neuro's office, in and out in a few hours. Stopping and restarting E-meds is dangerous for a number of reasons and I wouldn't think they would do that. I've had 'normal' EEG's and abnormal EEG's while on dilantin. I took zonisamide for 4 months and had a lot of bad side effects. Everyone reacts to different meds in their own way, but personally, I think zonisamide is a horrible drug. I had depression, anger and irritability issues, no appetite, extremely oily skin because I wasn't sweating, memory and concentration issues, etc. I don't think that there is much you can do to prepare other than follow the doctors instructions for the V-EEG. Keep notes of what is going on with you to tell the Dr next time you talk. I have issues of remembering everything that I want to tell my Dr when I see him and notes or taking a companion who is aware of the issues helps a lot. I wasn't honest with my Dr for 15 years about my ongoing issues, even while on meds, because I didn't want to lose my license. It may sound selfish, but I've never had a seizure while awake. Now I'm coming clean to get the treatment I need. Make sure you are honest with your Dr. I was in denial for a long time and have become very proactive in my treatment. If you are expressing concerns and don't think your Dr is taking them seriously, tell them that. If they don't heed your words, you can always go see another Dr. I would suggest that you be open with your Dr and stick with it as long as you can. I've been frustrated with my Dr in the past, but I also wasn't following his instructions or being honest with him. For me, dilantin doesn't make me feel weird like the Z did, but it doesn't completely control my epilepsy and is not good for long term use. I'm totally for being proactive in getting treatment but remember that the Dr has a lot of training and may have a plan for your treatment, but is not the one getting the treatment and taking the heavy meds. Just be as up front and honest with your doc as possible, good luck.

 

[Cint]

The paperwork from the hospital came today and it says not to discontinue any medication before entering the VEEG unit. I take 250mg Zonisamide. I understand it has a half life of 60 hrs. It sounds like the hospital intends to have me sitting around for over 2 days while that the Z goes out of my system. But I could have just as easily started the process at home! This MIGHT be reasonable on their part. What do you think? Also can you think of any conditions under which they would not discontinue the drugs for the duration of the VEEG? I have suspected that maybe the Z is one reason I have strange problems with eye sight and even hearing.At the same time I credit the Z for focusing me and it has been been better for me than the other anti-epilepsy drugs that have passed through me. I will appreciate whatever thoughts you have about this.

The reason the hospital wants you there while you discontinue Zonisamide is to provoke a seizure in you. Therefore, they can have the EEG on video and determined what type of seizure(s) you're experiencing so they can make the proper diagnosis.

It is explained here:
http://www.epilepsy.com/learn/diagnosis/eeg/video-eeg

If you think Zonisamide is causing your eye problems and hearing problems, then now would be a great time to tell your neurologist about those darned side effects.
All AEDs do have side effects, some worse than others.

Good luck!

 

[Cint]

Stopping and restarting E-meds is dangerous for a number of reasons and I wouldn't think they would do that.

This is why a VEEG needs to be done in a hospital where experienced neurologists and nurses know what to do when witnessing a seizure. If an EEG is done at home, that is a whole different ball game.

IMO, it would be best to have a VEEG the 2nd time around if seeking a proper diagnosis.

 

[Bidwell]

gdpackerfan -- What a GREAT post! You covered all the bases and I appreciate it. Lately I have been very impressed by my dissociative qualities, and if you dissociate, honestly ends up being a big issue. Also I am having cognitive difficulties along the lines you mention but I have not connected them as possible side effects of zonisamide. Thanks.
and CINT, thanks for the citation. At this point a lot of providers have heard about my eyes and my ears and I will start emphasizing the side effect possibility. I guess it seems obvious to me but I should know that that does not mean a lot if I don't speak!

 

[MichaelJO7]

I like to write down, or at least be very clear in my mind, what I hope to accomplish at the doctor's office before I go. I would also suggest you get a copy of the CD and report, and read it yourself. It may mean having do go through an online medical dictionary, but I think it will be worth it. I have certainly found that to be the case.

 

[Bidwell]

Thank you. I would not have thought to get a copy of the CD and report and I certainly will do that. I don't mind going through medical dictionaries! I don't like to bring another person with me to doctor's appointments so this time I am going to record the interactions on an iPhone. Writing down what I am hoping to accomplish -- THAT is so much more difficult than I would have believed! But that's the job, for sure. Thanks!

 

[Pinkattitude]

When I just had my VEEG, they did not end up doing many things, other than sleep deprivation, because I was having seizures anyway. I think they will want to see what your seizures are like on full meds, then they will take you off to see if there are changes in what's going on in your brain when you have seizures.

The doc said my med wasn't working any more due to what he saw on the EEG as I was having one. Once it came from one area of the brain, twice from another area. At this point he cancelled the flashing lights and hyperventilation tests stating they were unnecessary.

They don't want to do too much to you because they have seen that people have effects from these tests for a week or so after they go home. Thus they put me on lorazepam (spelling?) for a week when I left. For me, I think it was overkill because the only test I had was sleep deprivation for two nights. But they can be overly cautious.

The best thing I did was to have a seizure when the nurse was standing right by me. They want you to push a button when you have a seizure, but for me, that's not going to happen because my hands are effected right away. But I said, "push the button" as the seizure started! Since she was right there, it was the perfect time!

So if you have seizures that someone else will see before you can activate the seizure alarm, it is helpful to bring someone with you. Plus, the sitting around all day is BORING! I was there for over 4 days. My butt got sore. Oh, and take your own pillows and your favorite blankie - makes the stay nicer. I also had my techie husband and son bring in my computer - not a laptop, the floor type - and set it all up. Helped pass the time and kept me awake for the sleep deprivation.

 

[masterjen]

Hi, Bidwell;
I cannot think of too much to add to what has already been posted. You may want to check with the facility you're going to and find out if they have Wi-Fi before bringing a computer. Where I went there was no Wi-Fi because they did not want to risk interference with the other equipment around. Also, there are times when you may be taken out of your room for scans or other tests, and your expensive (or inexpensive) belongings are at risk for being stolen. If you're into any hobbies, take that along for entertainment. Nothing like the somewhat mindless task of latch-hooking, crotcheting, etc. but that gives results you can see!

 

[Bidwell]

Thanks, Pinkatude! I am noticing that I am posting a lot lately and it is because I am not talking very much in person. I am in a very bad mood. Your post is reminding me about the boredom factor, which in my case, is nearly unimaginable but now that you mention it, it might be a trigger. You are also reminding me that I need to think out what I am going to do about visitors since I am not convinced that I want people around me. Thanks. Your post jogs me!

 

[Bidwell]

Masterjen, I am SO AWARE of the THEFT FACTOR. I agree. I won't bring a computer. The hospital has invited me to bring a cell phone, so the iPhone is coming and I have a very long book to read. I am an artist and every day I sketch people on basketball courts especially or people walking and running, the point being speed -- 10 to 15 seconds and then a new piece of paper. Well I have a book of photographs of action shots of nudes and I thought I would hone my skills copying from the book. I can go at that kind of thing for hours. Furthermore it is just this kind of intense focus that I suspect is being impacted by the medication and might be of interest on an EEG. At least I FEEL like my poor brain is sputtering away. There MUST be something to see! Thanks Jen.

 

[Bidwell]

REVIEWING SEIZURE NOTESThe nurse practitioner on the EEG unit did a long phone interview with me yesterday, collecting information. I am to bring in all my seizure notes from 2011 onward to the VEEG so I have been collecting them and re-reading them. I have forgotten a lot, especially about how the events have changed over time and how different meds changed things... It was been sobering but as I remember more I am feeling more in control.

 

[AlohaBird]

Good. More patterns start to emerge as you look at longer stretches of time. It's good that you are keeping records.

 

[Bidwell]

Lessons Learned from Rereading Logs. This morning Karen B posted about how she organizes her son's seizure log. I admire her good sense. If I had realized how mountainous the detail can be and how it can obscure any time line and any informed objectivity, I would have paid more attention to organization in the first place.I report the same symptom a million times and that can be very numbing. But I gradually realize that I am reading about a WHOLE YEAR devoted to being mindless and half dead because of the Tegretol in my system. And THEN I see that the physician RAISES the dose [and I said not one word to question the necessity of this medication change because I am completely blotto.] Angry? Heart sick is more like it.
In the best of all possible worlds I think that from the very beginning neurologists need to spell out their intentions and responsibilities toward their patients, specific to Epilepsy. I think they should make public statements about the ethical prescription of medication and oversight as well as the parameters of diagnosis. I think the neurologists drawing up this statement should relate it to the Hippocratic Oath. This statement should be specific to Epilepsy. It should be given to every new patient so that everyone knows what the doctor's limitations actually are -- along with the doctor's responsibilities -- and I am talking DOCTOR as differentiated from SYSTEM.
What a dreamer I am!

 

[Ruth]

Hi Bidwell, just do what the doctor's tell you to do. You just relax and let them do the work.

 

[AlohaBird]

Reviving this thread as I head into my own VEEG on Monday. I'll be there 3 days to a week so they tell me.

They encouraged me to bring a computer or tablet or whatever to pass the time and said there is wifi in addition to cable TV and movies available.

I am also bringing a stack of crossword puzzles and sudokus.

The doc asked me what I consider to be my triggers and I mentioned booze, caffeine and sugar. He said, "We can't serve drinks unfortunately, but we can get you a lot of strong sweet coffee." Caffeine is my idea of "doing drugs". This part at least should be fun. I used to enjoy a good coffee buzz.

Any other "pro tips" from those who have been through this?

 

[masterjen]

Sleep deprivation, exercise bike, poor eating (eg. lots of sugar, have friends bring in junk food from fast food joints, etc.)

 

[AlohaBird]

Sleep deprivation, exercise bike, poor eating (eg. lots of sugar, have friends bring in junk food from fast food joints, etc.)

Urg. All in the name of science, eh?

I'm going to be on my own since I have to fly to another island to do this. The cafeteria would probably have some good junk food. The neuro said he could make sure I get lots of strong sweet coffee. I told him booze was a trigger too but he drew the line at serving me cocktails.


And I'll be getting some sleep deprivation like it or not since I have to be at the airport at the crack of dawn.