Newbie with aiws and random brain

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Trippywillow

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Hi everyone :hello:

Just joined today as I realised I could do with some support from people who truly understand my crazy brain.
I've been told by my neurologist that I have migraine with aura, aura without headache, and alice in wonderland syndrome. Initially I was being tested for TLE. They've thrown a bunch of meds at me - ranging from epilepsy meds to anti-depressants to anxiety meds. Not a big fan of any meds they've got to be honest and I've taken none of them.
I've had AIWS since I was a child, but for some reason its flared up at the moment so I'm having a random time seeing things move closer and further away, or like this morning watching my cardigan turn into a swirling shrinking vortex for 10 minutes or more. I only got diagnosed afew years ago as I'd kept quiet for years thinking they'd lock me up in a loony bin, i had no idea these symptoms were a normal part of my differently wired brain.
As a single parent I do find the future quite scary at times, one of the reason I wont take the meds offered is because Im scared itll make my symptoms worse and will start affecting my childs life as well as my own. I've managed my symptoms fine but a sudden recent increase has me signed off work and struggling to keep up at college.. its so frustrating!!!
I'm already very greatful for this forum, just reading the posts you've all shared has made me feel less alone in it all, Im looking forward to getting to know you all :hugs:
 
Trippywillow

Welcome to C.W,E. a place with a lot of great people who will try to help and answer your questions but also listen. Sounds like you are having a bad time of it right now, none of this is easy but you will get through it.
 
Hi Trippywillow, welcome to CWE!

Not a big fan of any meds they've got to be honest and I've taken none of them.
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I completely understand where you're coming from; I'm not a fan of meds either and I never took anything until I started having seizures. In my cases the epilepsy meds do the trick -- they control my seizures with virtually no side effects.

Everyone has a different experience, so I'm not suggesting that you start popping pills -- just that you don't rule the option out entirely. If your symptoms get worse, it might be worth at least trying an anti-seizure or migraine med to see if you can get relief.

In the meantime, it can help to keep a symptom diary to gauge if/when/how your episodes are changing, and get a sense if there are any particular triggers involved. More info on being proactive can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

You may also be interested in looking at alternative treatment approaches such as diets. More info about those here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova
 
Hi! I just joined also and posted in the kitchen about my AIWS. I have also had it since I was a child, it seemed to dissappear for most of my twenties, and now is back and each episode is worse, the last one was about 6 hours and really freaked me out.
I'm trying to find the cause of it to figure out how I can make it stop (I hope). I am a single parent also, and AIWS is starting to interfere with work and home life.
 
Thankyou everyone for the support! And to Fedup for the kind messages.
Nakamova I'll definitely check those links out thankyou! Im always interested in alternative treatments :)
Khartley I completely understand what you're going through hun! Sounds like we're in the same position here, please feel free to get intouch anytime you need to talk about it! x
 
:) Thank you, and honestly reading your post and relating with nearly everything you said was a huge relief to me.

I think my AIWS returning has at least something to do with my stress level increasing. I bought a house in April, my dad had a heart attack in June just as I was getting settled in to the new house and new job and I had to make a lot of trips to parents house 120 miles away, hospital 50 miles away, etc. (he is fine now, thinking he is superman again!) and now in December I started taking the steps to opening my own business, which is very stressful, even more so now that I fear the symptoms happening while I am with a client.

I get headaches very frequently, but I do not believe I get migraines. I will occasionally get a headache that is on both sides of my head and will be dull but occasionally start to pulse, feeling like my brain itself is actually pulsing and pushing against my skull, like it has a heartbeat. I had that headache the day before this last AIWS episode.

But usually my headache is on the right side only, more of a burning than an ache, and always just sits behind my right eye. They are horrible, and the only thing that has EVER made them go away other than sleep, was marajuana. I do not like pot, I tried it a few times in college and just hated how it made me feel. But one time I was having a really bad headache that had been with me all day, this was probably 2 months ago. I was offered half a cookie, and I ate it because at the time, I would have done anything if I thought it would offer relief. I don't know if it got rid of the headache itself, but it made me sleep.
One thing I want to mention about my headaches is that I believe they are occipital neuralgia headaches. At the base of your skull are these tiny occipital muscles that help balance your head on your neck. The occipital nerve runs thru one before it travels up and over the back of your skull. If that particular muscle gets tight, it will pinch the nerve, causing the headache. I was born with a crooked neck, my head just rested on my shoulder. My mom adopted me when I was 3 months old and I was that way. She would do an exercise with me every day to strengthen my neck muscles and I eventually carried it on my own. What we didn't know at the time was the muscles straightened, but my vertebrae continued to grow crooked. I have had various problems from this for years and finally tried seeing a chiropractor. He did an xray and nerve scan. Xray showed S curve in my spine, and my neck is straight, and actually makes a little bit of a reverse C curve. It also showed that I have arthritis and degenerative discs in my neck from it also. The nerve test showed that I have nerve impingements around my neck area that were off the charts. He cracked my neck (I HATED IT) I didn't have a headache for a week, not sure if it was due to that or not, probably... but he also cracked my mid back at the same time and I couldn't do my job for 2 weeks, because I was not able to do any twisting motion at all. So I haven't been back.
Get to the point already, huh? Lol. I was just sharing that because I'm wondering if it isn't possible that nerves being pinched or damaged couldn't have something to do with it. I've heard of people taking anti-depressants for nerve issues, and getting botox injections in the occipital muscle to force it to relax. I may try the botox, because it lasts for 3 months, and if I can get that little muscle to just be out of commission for 3 months, I think it would force the other muscles to work a little harder and start playing a greater role in supporting my noggin, and then the problem muscle won't have to work so hard, and stop pinching that nerve. Also, if I do the botox shot, it will give me a chance to experiment and see if the headaches go away, if it makes AIWS go away too.
I just wanted to share this because I think the more information we have, the better we can understand. Maybe someday some of us could advocate this disorder and create some awareness. I bet alot of people would step out of the shadows because it is the type of disorder that makes you question your own sanity, so you keep it to yourself because you feel like other people are gonna think your nuts.
 
Oh, the whole reason I replied, was to let you know that I do alot with aromatherapy and herbalism. I'm messing around with alot of different herbs and essential oils trying to find something to help. So far no luck with AIWS, but I have found a few herbs that I take as a supplement that help with the brain fog.
 
khartley,
Since your stress level has increased, then of course your AIWS symptoms (if that is really what you are suffering from) are going to increase. And so are your headaches. I get headaches and I know mine are migraine headaches. I also know I have TLE and added stress and lack of sleep only will increase the seizure(s)/headaches. I do NOT fool around with herbs because I've had too many bad seizures and herbs don't do a damn thing for my seizures. For some, herbs make seizures worse.

Since you've had these neck problems, I strongly suggest you go to a neurologist. They are trained for this, too. And you are right, the more info we have, the more we can understand our bodies. So check out this website:
http://www.ncbi.nlm.nih.gov/pubmed/24290480
 
I'm messing around with alot of different herbs and essential oils trying to find something to help. So far no luck with AIWS, but I have found a few herbs that I take as a supplement that help with the brain fog.
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Be careful with supplements -- some that are marketed as brain boosters can also have stimulant aspects that can be bad for people with seizure disorders. See http://www.learnaboutepilepsy.com/pdfs/herbal_chart.pdf

And some supplements don't contain any active ingredient or may contain hidden allergens. See http://www.coping-with-epilepsy.com/forums/f23/herbal-supplements-you-may-getting-ripped-off-24799/
 
I don't buy store pills for the reason in the link, you don't know where it's coming from. I buy herbs from mountain rose herbs. Not an herb, but the only one I take daily is hemp oil. I can't swallow pills very well, and this gives me d3, omegas, etc, and all I have to do is dribble it on a saltine crackers.
And aiws isn't something that you think you may or may not have. If you have had it happen, then you just know.
 
Some pills are made that you can have them dissolve in your mouth so you don't have to swallow them. I don't know if any of the ones that you take are made that way but you could ask your doctor about it.
 
khartley said:
I don't buy store pills for the reason in the link, you don't know where it's coming from. I buy herbs from mountain rose herbs. Not an herb, but the only one I take daily is hemp oil. I can't swallow pills very well, and this gives me d3, omegas, etc, and all I have to do is dribble it on a saltine crackers.
And aiws isn't something that you think you may or may not have. If you have had it happen, then you just know.
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Mountain Rose Herbs! Great site. We sound extremely similar lol :) I use herbs and essential oils alot too, currently in training to become holistic therapist! I've used cannabis for over a decade to help my symptoms, its amazing stuff and I dont care what anyone says.. Its helped me get through the past ten years of stress, pain, migraines, seizures, and I've not suffered any adverse effects so why mess with a good thing I say. Im very happy to see the medicinal uses of cannabis and cannabis oil being legalized all over the US, hope the UK catches up quickly but highly doubt it.
I'm all for finding a way to heal the body with nutrition, relaxation and herbal medicine, heres hoping we crack it hun :)
 
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