Results 1 to 9 of 9

Thread: Support System Advice?

  1. #1

    Default Support System Advice?

    Hey there!

    I'm brand new here, and I tried searching through the archives but couldn't find quite what I was looking for. My boyfriend has complex partial seizures. Usually he gets an aura, vision changes, dizziness, and a whole slew of other symptoms. He's currently trying to figure out what meds work best for him. A lot of times, in the middle of a seizure, he just goes quiet and curls up, and I'm struggling to find a way to support him without overwhelming his senses. He's not sure what will necessarily help him in those times, and has a hard time communicating in those moments what he needs/feels.

    When you're going through a seizure, what do you wish others would do for you? I read a bit here about "just let them ride it out," but I was wondering if there was more variation on that? Do you want comfort? Somebody speaking to you? Somebody to just not make it a big deal? What are your thoughts when you're going through a seizure (those of you that don't "black out,")? What are your thoughts/feelings/needs after you come to?

  2. The following user says "thanks"


  3. #2
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    I don't know anything about seizures hardly, but a woman I was working with said when she has a partial seizure she is aware and can hear people around her. Then after the seizure she just wants to sleep. I'm sorry he has dizziness. I know somebody who has dizzy spells from another different condition that is not a seizure, and the sensation is not at all pleasant for him. When the dizziness hits he appreciates that I show concern when he goes into that state but prefers I let him deal with it on his own because he has his own way of calming his nervous system to regain control over his body. It's really,really hard watch but he does well on his own.
    Last edited by funnylegs4; 02-08-2017 at 11:31 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. The following 2 users say "thanks"


  5. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default

    Hi WhiskeyDune,

    Welcome to the forum! I've had complex partial and absence seizure for over 40 yrs. and just like your boyfriend I often get an aura seizure before the complex partial seizure. Tell your boyfriend to try and tighten up all the muscles in his body the moment the aura seizure starts and make his hands into tight fist by doing this it will often stop the seizure. My neuro I had back in the 1970's taught me this and it has worked great.
    I also have absence seizures and I have found over the yrs. that whenever I have a seizure I just like to continue on and not let anyone be over protective of me and don't worry about anything. I just want to live my every day normal life. You may want to tell your boyfriend to try taking vimpat if he hasn't yet that has greatly reduced my complex partial seizures and my Dr. also put me on the medical marijuana (CBD oil) and I can't get over how great that has worked, I went from over 100 seizures a yr. to only 65 seizures last yr. which is the lowest amount of seizures I've had.
    I wish you and your boyfriend only the best of luck and May God Bless the both of you!

    Sue

  6. The following 2 users say "thanks"


  7. #4

    Default

    Quote Originally Posted by funnylegs4 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I don't know anything about seizures hardly, but a woman I was working with said when she has a partial seizure she is aware and can hear people around her. Then after the seizure she just wants to sleep. I'm sorry he has dizziness. I know somebody who has dizzy spells from another different condition that is not a seizure, and the sensation is not at all pleasant for him. When the dizziness hits he appreciates that I show concern when he goes into that state but prefers I let him deal with it on his own because he has his own way of calming his nervous system to regain control over his body. It's really,really hard watch but he does well on his own.
    That's definitely something I'm struggling with. I sometimes go into the "what's wrong? Let me help? Talk to me." mode, and that's just overwhelming for him. And he has said a lot of times it's easier for him to just deal with it than to try and answer questions AND deal with it. On the other hand, if there's something I can do without needing his help/input at the time, something that might help, I want to try for that. Thanks for your input! :)

  8. The following 2 users say "thanks"


  9. #5

    Default

    Quote Originally Posted by Porkette View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi WhiskeyDune,

    Welcome to the forum! I've had complex partial and absence seizure for over 40 yrs. and just like your boyfriend I often get an aura seizure before the complex partial seizure. Tell your boyfriend to try and tighten up all the muscles in his body the moment the aura seizure starts and make his hands into tight fist by doing this it will often stop the seizure. My neuro I had back in the 1970's taught me this and it has worked great.
    I also have absence seizures and I have found over the yrs. that whenever I have a seizure I just like to continue on and not let anyone be over protective of me and don't worry about anything. I just want to live my every day normal life. You may want to tell your boyfriend to try taking vimpat if he hasn't yet that has greatly reduced my complex partial seizures and my Dr. also put me on the medical marijuana (CBD oil) and I can't get over how great that has worked, I went from over 100 seizures a yr. to only 65 seizures last yr. which is the lowest amount of seizures I've had.
    I wish you and your boyfriend only the best of luck and May God Bless the both of you!

    Sue
    Hey Sue! Thanks for the advice! I'll definitely pass that idea on to him, he very often doesn't like me getting over-protective or coddling him, as it makes it into a bigger deal. I'll mention Vimpat to him, is that a prescription med or over the counter? He's on carbamazepine right now, but it's been hard to tell what are side effects and what are symptoms from seizures- he was just diagnosed last fall so it's all very very new. He tried pot ages ago but it worsened his anxiety quite a bit. Thank you for the advice though! You guys have both been very helpful!

  10. The following user says "thanks"


  11. #6
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    NY
    Posts
    518

    Default

    Hi WhiskeyDune,

    Vimpat is a prescription drug that he will have to get from his Dr. another thing I take that works really good is vitamin B12 1000 mcg. once a day the B12 helps calm the nerves down. If your boyfriend wants to find the best drug to control his seizures tell him to get a DNA test done by his Dr. They will just draw a few tubes of blood and wipe the inside of his mouth with a Q-tip. All of this is sent to the lab where they can see the amount of enzymes in a persons liver along with their body chemistry and then the Dr. can match that up to the best seizure med with the least side effect. My Dr. did this to me after trying over 10 different meds and then I had the DNA test done and found out I was drug resistant to all seizure meds out on the market right now. I will tell you that often Drs. will say "We don't do DNA tests" but they are full of it. They just tell the person this because the more drugs they prescribe the more money they are making from the drug co. If this should happen tell your boyfriend to tell the Dr. that he will report the Dr. to the medical conduct board and take my word the Dr. will do the test. Wishing you and your boyfriend the best of luck and May God Bless the Both of You!

    Sue

  12. The following 2 users say "thanks"


  13. #7
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Quote Originally Posted by WhiskeyDune View Post
    This quote is hidden because you are ignoring this member. Show Quote
    That's definitely something I'm struggling with. I sometimes go into the "what's wrong? Let me help? Talk to me." mode, and that's just overwhelming for him. And he has said a lot of times it's easier for him to just deal with it than to try and answer questions AND deal with it. On the other hand, if there's something I can do without needing his help/input at the time, something that might help, I want to try for that. Thanks for your input! :)
    You're welcome! I completely get what you are going through! The person I mentioned who has the dizzy spells is a friend and teacher of mine who had a stroke and when I first saw him get dizzy really I wanted to panic because I was TERRIFIED and be like "ARE YOU SURE YOU'RE OKAY?!" but I’m glad I didn’t because I know that would have made it worse physically and psychologically for him. Here’s some posts I wrote in other threads below about his dizzy spells quoted in italics, to give you an idea of how we dealt with it and how we felt about it.

    “He's still doing well but he appears to have had a rough day today. He had a bit of trouble with the window when he wanted to close it so another student had to do it. His finger strength wasn't good. He moved slower than yesterday. Then he had to keep sitting to rest. He was rather quiet and I kept hearing him make a sighing type of noise as if he was trying to use deep breathing to control his symptoms as I was taught to do with my CP. At the end he looked really uncomfortable and it was hard to watch him struggle. At the very end the symptoms seem to hit him hard. He looked up at the ceiling and I could tell by watching his eyes something was really bothering him. Then he closed his eyes as he tried to chit chat with me. Perhaps he had seen me checking on him out of the corner of my eye. Once the other students were out of earshot he said "I'm dizzy". I asked him if he wanted help but he said he just wanted to go back to his office and rest. I was worried but I just followed his lead so he wouldn't get more stressed. Perhaps he was embarrassed by the dizzy spell?? It seemed like he only wanted me to know.”

    “I never saw my teacher's stroke but one of his first dizzy spells was bad and I still have the image of it burned into my brain. I can't get the image of him struggling out of my mind no matter what I do! He looked up at the ceiling with his mouth half open and then his eyes shifted back and forth super fast. I thought it looked like a sezuire or the beginning of one. I honestly didn’t know anything about what a seziure looked like so I was very afraid because I was completely alone with him and feared I might have to move him to protect him from injury. I have lifted someone of his size with Cerebral Palsy but wasn’t sure if I’d be able to help my teacher if it got worse. I was ready to call 911. He got very pale like he was on the verge of passing out. I thank god I was there in case he had passed out. I don’t know if anybody would have found him in time if he had passed out. Luckily he has never passed out. It was AWFUL to stand there helplessly as he struggled. He was still speaking clearly and was lucid during all of this which almost made it even more disturbing. He smiled and refused my help and the next day he looked totally fine. When I asked him what happened he told me he had gotten dizzy from exhaustion from the stroke. I was like WHAT THE HECK??!! WHAT WAS THAT?! to myself silently. My teacher handled his spells so calmly. I am utterly amazed he did not panic. It gave me so much respect for him! I want to be level headed and patient like him when I'm older.I think my teacher was relieved I was with him just in case he got overwhelmed, but I think he was also a bit embarrassed that a student had seen him in that highly weakened state. It's hard for him to be vulnerable.”


    Now when this happens to him(it’s rare now) he will usually speak to me only right at the beginning to tell me what’s happening and when it ends. Other than that he just wants someone in the room with him, and seems to need quiet to focus on his breathing to help it to stop. I just stay with him in case he does end up needing help. I do fear one day he may get to a point of distress that leaves him unable to communicate but so far this has never happened. If I have to speak to him I keep my voice calm so he doesn’t get alarmed. It could be that your boyfriend is a bit embarrassed or annoyed by the seizures and wants to forget about them after they happen. My teacher didn’t want me to coddle or fuss over him either because he still wanted to feel needed,capable and strong. It is harder for a guy to go through this kind of stuff because so much of what society tells them has to do with being strong. The funny thing is though, that I see more strength in him when he has those spells than I ever had before because he always seems to know exactly what to do. My teacher and I both now take a health supplement we get over the counter at a health food store called “Phosphatidylserine” which calms the damaged nerves in our brains. For him it seems to help with the dizziness. His symptoms are NOT seizures but perhaps if the nerves need to calm to prevent seizures it can maybe help your boyfriend if the docs say it is safe for him to take it.
    Last edited by funnylegs4; 02-11-2017 at 10:46 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  14. The following user says "thanks"


  15. #8
    Distinguished Community Member howdydave's Avatar
    Join Date
    Oct 2006
    Location
    Rochester, New York, USA
    Posts
    167

    Default

    Howdy Whiskey Dune!

    I don't know about your BF, but actions of others have very little effect on me when I have a CP.
    Seizures are much worse ​to witness than they are to experience.

    When I have a SIMPLE PARTIAL I am aware of my surroundings, but with a COMPLEX PARTIAL, I lose a chunk of time and am not even aware of the fact that it has happened unless somebody tells me about it after the fact or I hurt myself.

    To be of assistance, gently remove any dangerous objects from his hands and try to remove him from dangerous situations. I stuck my hand into a boiling pot on the stove (and left it there) on two different occasions.

    "Auras" and "simple partials" are the same thing.
    Last edited by howdydave; 07-22-2017 at 12:09 PM.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  16. The following user says "thanks"


  17. #9
    Distinguished Community Member howdydave's Avatar
    Join Date
    Oct 2006
    Location
    Rochester, New York, USA
    Posts
    167

    Default

    Howdy Whiskey Dune!

    The support system required by you is not the same as the support system required by your BF.

    For you, other people who have to stand by and watch while a friend or family member has a seizure gives you people to talk to who have similar experiences.

    For those of us who actually have epilepsy, the best support is obtained from others who also have epilepsy.
    In my experience, the best that other people can give you is sympathy, often what we get is pity.
    I feel that what we really need is empathy -- somebody to talk to who has had similar experiences and can relate -- especially to the reactions that we get from others.

    Hope this gives you a bit of insight.
    Last edited by howdydave; 09-16-2017 at 11:57 AM.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  18. The following user says "thanks"


Similar Threads

  1. Weakened immune system
    By BBS1951 in forum Multiple Sclerosis
    Replies: 10
    Last Post: 11-18-2015, 06:48 PM
  2. Ever feel like your nervous system is nuts??
    By funnylegs4 in forum Cerebral Palsy
    Replies: 6
    Last Post: 10-01-2012, 07:34 PM
  3. Thwarting the system!
    By andromeda31 in forum Child Neurology
    Replies: 4
    Last Post: 08-18-2012, 07:40 AM
  4. Wow! I need some help, advice. support
    By tigerchef1969 in forum Epilepsy
    Replies: 12
    Last Post: 11-23-2011, 01:00 PM
  5. When The System Works
    By Earth Mother 2 Angels in forum Child Neurology
    Replies: 4
    Last Post: 10-13-2011, 05:12 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.