I was just curious how many people have documented their "events" whether they are seizures, depression, ect in a journal.

We used to keep a calender where we wrote down the times under the date that Joe had a sezure. We have since given up doing that, because quite frankly we know what will and will not happen on a day to day basis.

Joe and i have reciently talked, basically i brought it up, that we keep a daily journal to keep track of everything that has been done that day. Maybe it would help pin point something we have missed. Maybe keeping track of Seizures ( the event) with the time it started, the type , what it looked like specifically( with it categorized into Aura, Ictus, and Postictal), the time it ended, what he hurt or broke during the seizure, specifically how he felt afterwards, anything he remembered from the sezure, what we did that day, what he had to eat and when, medicines taken that day, medical treatments, ect. Basically anything that we can think of that could have and effect. Then to go through it and see if there are any patterns. Expecially once we start VNS this will be important because i want to keep Joe as safe as possible, perhaps if we are writing things down we will see developing problems before they become something life threatening.

I also want Joe to keep a journal so he can write down his emotions into it something no one but him has to read. So that he can be free to write down what ever he needs to get out. I know we talk about everything, but i can tell there are times when he doesn't want me to worry yet wants to get something off his chest. KWIM

However, both of us are not really the type to write a journal... although i do get on forums and basically write novels expecially when i am worked up about something. I am not one to keep track and write down "mundane" items like that.

So who writes it all down?? What are your experiences with it ?? Has it helped any to have it written down?

My wife keeps a detailed journal of her seizure activity and other things. We also record it on a calendar. It has helped identify possible seizure triggers for her.

I keep a calendar of my seizures and what time of day they are happening.
It's very simple, just seizure or no seizure.

I wouln't want to keep or tack all the information you talked about for the simple reason, I'd feel like my whole life revolved around my seizures.

I like to forget they are there whenever possible, but that's just me.

Dear SezLuv,
I have kept a journal for years. I have chronic depression. Sometimes I ask myself why I continue to write. But I do think it is good to keep one. It is an outlet for me. I especially think it is a really good idea for someone who has epilepsy to keep some kind of record. It can be just the basics at first.

If you have the software Excel that has columns that would be good to make a record. I would put the medication he takes daily, what he eats, the weather, the events during the day, if he has a seizure; try and time it. Describe where it starts and ends and how long it lasts, if you can look at your watch. If and when he gets the VNS; you can put those settings into the record as well.

By the way, you mentioned that your hubby's Dad was exposed to agent orange in Viet Nam. I think that is very important. I would mention this to his doctor, or have him mention it. I had a patient that was in Viet Nam, that had been exposed to this agent. He had a lot of medical problems. He was unable to have kids, this agent made him sterile.

Getting back to the journaling. I can look back at my writings and see my depression at times in them. Much of my writing is very negative. But that is my depression. It is at times discouraging to read my journal. There is a lot of pain in those pages. But, I do believe that is getting better. :yes2:

Oh, welcome. I see you joined the VNS board.

Sincerely,
Bonnie
:hbeat:

Bonnie~An emotional journal for you is important definately.. it gives you a place to release all that is bottled up inside you.. lets you organize your thoughts and feelings towards things with out having to share with another person... Heck "unauthored" blogging online is sort of the same sometimes you can let everything hang out and yet no one knows its you typing so any feed back is not connected to someone. ( Hmm maybe thats just me *G*)

Petunia~ Yeah i can see where people do not want their lives to revolve around sezures, but right now in our world thats exactly where Joe's life is revolving. He can't have back, knee, or teeth surgery til his sezures are under control. Right now he is having 2-3 Tonic Clonics per day with partials. He is in constant pain and restricted almost completely into a wheelchair now til his sezures are undercontrol and something can be done. He tries to do things to get his mind off stuff, but the pain is getting into the way more and more often.

Bernard~ Thats awsome that she has been able to find some of her triggers!!

Yep - a very detailed one. More detailed than the neuro requests, but I like to see if there is a pattern emerging.

I have kept a journal for years to see how my depression varied. So far it has been too hurtful to go back a read. I still keep it today.

Dear SezLuv,
There is a place if you,"want to let it all hang out," it's called the Vent area. You can go there and just let go. Blow off steam so to say. I think all of us have been there a few times at least.

You said your hubby was in pain. How severe is it? Does he have anything to take for pain? It sounds like he may need something for pain, if he doesn't have something already. On a scale of 1-10; 1 being hardly anything and 10 being the worst; what would his number be? Can he take anything? I know he has seizures, but it sounds like his pain needs to be addressed too.

I can relate to what Labrat said about the journals. Sometimes, I don't want to read all of that old, painful stuff. I have thought of just packing those old journals away. I have thought of just burning them.

If you can identify triggers; that is really important. I have triggers myself. One would be stopping my medicine. Or skipping doses.

Sincerely,
Bonnie
:hbeat:

SezLuv

You mentioned your hubby's pain is bad and his sz are uncontroled, maybe if the doctor got his PAIN under control, he's seizures would stablelize!. Pain is a major trigger for me.

As for journaling on a day to day basis. One thing to keep in mind about finding a pattern. It could have been something eaten or drank a day or two earlier.

Bonnie~ Yes he is in some massive pain it is a constant 8 and when his back starts to spasm he says its an 11. He will start shaking and his eyes will turn reddish because he is trying to breath through it but its hard to breath calmly through it. When it gets that bad he says it hurts to breath.

Basically he is supposed to stay in the wheelchair and not walk on his crutches, but to maneuver in and out of the house and to move around the house he has to use the crutches or he can't get to parts of the house at all.

We are still trying to deal with the local medical supply place in town to try and find a wheel chair that will work in the house, since its not a wheelchair accessible place. The doors are only 24 inches, so a 14 inch seat would work because it would be 23 inches from wheel to wheel. Trying to deal with Medicare about a ramp but they said it is a convenience item. So we called all over the place to organizations that were making ramps most places you had to pay for the ramp supplies, which right now $1500 is out of our budget. Then other organizations said that he was not old enough to fit into their grant.

We talked to House for Humanity and they said that they could build a wheelchair accessible house for us, but they do not do ramps.

The neurologist said he could have Flexural or Motrin for pain and he could also get Cortisone shots in his back and knee. They put him on the Lyrica for his seizures because one of the side effects sometimes was pain management. It hasn't helped the pain yet though even though now he is taking them morning and night and it hasn't helped his seizures either. Basically he can't take any pain meds because of where the seizures are in his brain. That if he took them it would cause more seizures to occur. We really do not want more seizures right now. Joe is upset enough with the change in time.

Birdbomb~ His pain in his back went insane after he started using crutches because of his knee. He only started using the crutches 2 months ago. Then with in a month he was told to stay in the wheelchair full time to help to reduce the strain that was adding to the pain. He is continuing to have seizures and hence falling ( even though when he is awake he kneels down pretty quick before actually going into the seizure although he doesn't remember that. ) His body straining against its self causes enough damage without falling.

He is on all pain meds he can have right now except for the shots we are still waiting on the second appointment with the pain clinic so he can have those shots. Which he is very scared to get, but it may help.

His seizures haven't increased since the pain has increased. Nor did they increase when his back started to hurt. It has been a year that his back has hurt, because of a slipped disk. We just found out recently that there was a slipped disk. His last neurologist told him before she retired that there was nothing wrong with his back it was in his head. He begged her to check for tumors or something that could be wrong because the pain was constant and intense and she wouldn't do so.

The point that we are at right now for him to get relief he has to get his seizures under control so he can get a knee surgery done. That’s the main one I think if he could walk on his knee again then his back would hurt a LOT less then it does now. Then perhaps to get back surgery to fix the slipped disk that has caused him constant pain for more then a year now. His teeth are also horrible softened because of the medicines and cracked and continuing to disintegrate. He needs to get them all pulled and dentures made so that he can eat a fuller diet with more raw veggies ect.

Since meds are not controlling the sezures we are looking at everything and anything that could control the sezures. AKA VNS is a very exciting thing for Joe its a hope.

Boy, your husband has a LOT to deal with. I can understand that kind of pain level and the insane attitude some doctors portray...can't do surgery until the sz are under control, can't get sz under control because of the pain, can't take pain meds because of the sz problems!

That is just insane! Pain on that scale causes people to take their lives, they just can't take.

I think I would be shopping around for another doctor, one who specializes in pain management. But I'm sure you have taken that route already.

Do all the research you can on VNS. There are tons of testimonials here, all different levels of responses. Make sure you understand the risks and possible problems, both current and future. If VNS doesn't work, he may be worse off, can he accept that possibility?

At this place, you won't see the surger coated holy grail the marketing portrarys. You see actual real cases as they happen. Often from start to finish. It it works for him, and helps him get his surgeries, he will have a completly different life!

Dear SezLuv,

Sorry, he is not getting enough pain medicine here. After reading your letter, I think Joe needs something long acting for right now. So, he could be a little more physically active with the crutches etc. There has to be something for him to take. Lyrica, Flexaril, and Motrin are a drop in the bucket of his pain level of 8.

I would go and at least talk to a pain management doctor. There has to be something he can take or do to decrease his pain. He cannot keep going on like he is. Has Joe ever tried Baclofen? This is a muscle relaxant, and may help more than Flexaril. The shots you are talking about, is that blocks via the pain management doctor? They could very well decrease his pain he is having.

I think though it is coming to the point that it is worth him getting the pain relief, even if it is risking seizures. The Lyrica dose could be increased (?). There is only so much a person can stand. And you said his pain level is a 8. If his Lyrica dose is increased, that could help his pain.

Not trying to be bossy, but couldn't that be done now? And if that doesn't work, maybe something for pain.

Sincerely,
Bonnie
:hbeat:

Birdbomb~ We have been to the clinic .. this isn't just one Dr saying no pain meds it has been all of the neurologist's he has seen in the past few years. Also he doesn't like to take narcotics because he is a recovering alcoholic been clean for 5 years now, he knows he has an addictive personality so he openly talks about when he is tempted with me and his mom so that he can curb the want.

They do not say that the seizures are caused by the pain though.. they were caused originally by 2 accidents when he was young. The first he looked around fast and knocked his temple on a sharp cornered coffee table which knocked him unconscious and when he woke up he was nauseous. Then the second time he was pushed down a hill and hit a rock with his temple he was unconscious woke up with amnesia and vomiting. Then suddenly started having seizures.

We have been to the pain clinic.. the only thing left he can do is to get cortisone shots.. which he is pretty much terrified to get a needle in his back for an epidural.. because his mom had one and it screwed up her back BAD.. and he has had a friend who had one and became paralyzed. I am sitting back and letting him come to that decision on his own because I know that he is debating pain to getting an epidural and what could happen.

He knows that the VNS could paralyze him or even worse kill him, but he wants to try it because there is a hope that he wants to have less seizures so that he can hold his child with out being scared that he will hurt her and so he can have these surgeries.

Bonnie~ He is taking 50mg Lyrica morning and night.. which was just upped Monday. I am waiting for him to decide on an cortisone epidural on his back .. he would like the cortisone shot for his knee. Normally he is good about calling Dr’s for appointments but with the pain clinic he has been pushing it off. I keep asking and talking with him about it. He is terrified that since the disk is out that getting a shot in his back will cause permeate damage.

He will be calling the Neurologist tomorrow to see if they approved him for VNS. He will also be able to set up an appointment with the Neurosurgeon plus get to talk to his Neurologist. So he could see if he could up the lyrica more since its not working for pain especially since he has Flexural and Motrin. The only other option is to get the epidural.

Interestingly enough he wants me to get one if I feel I need to during delivery, but is worried about getting one himself.

When I spoke of my seizure activity in reguards to pain, I meant if my pain is out of control, I will have more seizures, the extreme pain makes the stress so high it will bring them on.

I have had the cortisone shots to the knees, shoulder, neck and wrists and they have been very helpful. It's very understandable the fear of one in his back. I do wish him the best of luck. He has such a difficult position.

Dear SezLuv,

I understand him being recovering from addiction, and his desire not to return to using. And I admire that a lot. My husband is also in that situation.

The epidural could very well provide him much needed relief from pain. If he can go to someone really good at doing them. Anesthesiologists are very good at doing them. I understand him being afraid of them. I had one for my son's delivery, and frankly that wasn't as painful as the IV start. It really was NOT bad at all. I hardly felt it. I was very scared too. But, it wasn't that bad at all.

Many pain management doctors are anesthesiologists. And they are excellent at doing these epidural blocks. Many patients have been spared from surgery that have been to them. I would highly consider going to these doctors first before having surgery. Surgery should be the last resort, and only if there if nothing else that helps the pain get better. Many pain doctors can tell you if surgery is needed, and if it will help or not. After what I have seen as nurse, I would go to a pain management doctor before seeing a surgeon. I would exhaust all other options BEFORE seeing a surgeon.

One other thing that may help alleviate his fear. During these epidurals, it is done under fluroscopy imaging. In other words, a picture of the area is up on a screen of his back. They can see the bones, etc. the epidural spaces etc. it is under guided imagery. So, it is very precise, and they can see exactly where they are going. It is not a long procedure. And I think he could get relief from his pain.

It is unfortunate that he is focusing on people that have had negative experiences. Just because others have had bad experiences, does not mean that he will have them too. I would encourage him to at least try it once. I would never suggest to anyone as a old nurse if I didn't think it would help. I have worked with these doctors nine months, and they have relieved many people of moderate to severe pain. It's hard to bear that much pain for so long, without getting relief. They usually do three blocks total, unless things have changed since I was working.

Sincerely,
Bonnie :hbeat:

Birdbomb~ He Finally called today and got an appointment ( April 22 )... i wish he would have done like i asked and called earlier because he would have had time to think it through before the appointment and could have cancelled it later... but not the way his mind was working. So we are playing the waiting game for pain management unless someone cancels their appointment since he is on the cancellation list. * crosses my fingers *

Bonnie~ He will want to watch the fluroscopy imaging then *rme* .. i will have to sit in the lobby cause it will make me feel grossed out.. but probubly i will have to hold his hand and look away if they will let me... because i know he is nervious about it.

They have him down for an epidural but no knee .. so i am confused.. because i really believe if they get the knee pain reduced and he could work it a little and maybe walk on it. It would help his back SOOOO much.. because his back didn't start into extreme pain til after he started using the crutches.. it was hurting before but not an 8-11.

Dear SezLuv,

I'm glad he has an appointment. They probably will not want you in the room with him. But may let you. He will have someone with him however. There is nothing gross about the picture they bring up. It looks like shadows really. There is no color or anything like that. It is black and white.

It's hard to tell anything on the fluroscopy picture at all. The doctors though can see things, as they are trained in reading them. The fluroscopy is only for needle placement and so they can put the medicine in the correct area to help decrease the pain. They usually take pictures once they have the site in view good.

If he needs to take pain medicine, and he is worried about his recovery. What you can do is you can give him the pain medicine. So, you can have control over it, rather than him taking it on his own. This is what we told patients leaving detox in case they had surgery etc. sometime later in the future.

It's probably good he is getting his back done first, as that is the most painful area. Isn't it? Then he can get his knee taken care of. I hope he keeps this appointment. I'm rooting for him to go. I think it will help him get some relief. See how his knee is after his back epidural. It may be different pain wise. :yes2:

Good Luck! :goodluck:

Sincerely,
Bonnie

Bonnie~ He is pretty stubborn on the fact of narcotics.. plus all his neurologists have been the same no narcotics. When he is off meds he has between 10-15 tonic clonic sezures per day we found that out about a year and a half ago when he fan out of refills on his meds and no free clinics in the area would take him and we were waiting on medicaid to kick in. That was NO FUN.

We were talking about it last night pain being a trigger.. he was like no if that was true i would have had one during the tatoo i got .. or when i have spasms in my back .. He looks at me in a smartalic look and goes No Stupid people are my triggers *lol*.... If yall would know some of the characters we deal with every day you would see why that was so funny.

Here the past few days til last night he had been at 2 sezures a day WOOHOO had a bit of a tummy... then bam 3 sezures one at around 11pm one at 4:30am and another at 8am DOLP... i know just having one less seems crazy but i can see the physical change in his body when he has less sezures. Heck, i am proud that he has been able to gain about 20-25 lb in the last year that has been wonderful. Hopefully, he will be able to gain another 20 or so that would awsome.

I hope he can get some relief from his pain. It is unhuman to have to live like that! : g :

Hope he gets some help soon, I really feel for your hubby, SezLuv. And of course why are all the meds I take adding weight instead of the other way around?? Just joking, as I know it can be so devistating when there is unexplained weight loss.

Let us know how he is doing and take good care of yourself too!

:im_033:

Let's not even mention weight. I think that is a given with antidepressants. Why can't they come out with something that makes you loose weight?!?

Amen, Sister!

:im_033:

And I totally agree!! Why can't they make something that causes weight loss instead of weight gain?! :Really Mad:

Even the drugs that are supposed to cause weight loss, have caused weight gain for me! The shrink didn't tell me this many years ago, and I gave him HELL when I found out! My internist had to tell me this! It was impossible to loose weight on Prozac!

Sincerely,
Bonnie

I had the same reaction to the "drugs that don't cause weight gain". Talk about adding to the depression. I was a size 4, now I'm a 16. I'm 5'6" so it could be worse!!!!!!