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bleeding cavernomas/epilepsy
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supergrangran posted:
I have 2 bleeding cavernomas in my brain which are an abnormal collection of small veins that leak into the brain area, This makes me high risk for epilepsy and I just wondered if anyone has been down this road I am feeling a little overwhelmed with Doctor advice who want me to start taking anti seizure medication but due to a number of other health issues and associated meds I feel reluctant to start any more tablets.

I am told that if I start the tablets now it may mean that I can remain seizure free. I have read peoples stories of epilepsy diagnosis or in a lot of cases not diagnosed and it feels strange to have a reason/cause of seizure but not experienced one yet, I do have considerable pain in my muscles which is difficult to manage and I have strange smells and taste metalic and some times sour milk.

I also have dystonia in my neck and am about to start botox treatment for this, I also am 7 years in remission from breast cancer, heart condition (SVTs), thyroid problem and a genetic blood condition (heamochromotosis or iron overloard).

Nothing like being greedy!

Christine X
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dancer86442 responded:
Hi Christine,

We used to have a Lady from Australia w/ Cavernomas. And Yes, it caused seizures in her. But so can your thyroid & heart issues. I agree w/ your DR. But, I am Not a DR.

Strange smells/tastes are a form of seizures. Chek our Helpful Resources. Look for Epilepsy Faqs link. As for the Pain that is something totally different. That is unless you have a seizure. You experience quite a bit of Painful muscles after a Gran mal AKA Tonic-clonic.

W/ all your Issues, it would be a Good Idea to start a Daily Journal. More info under Tips.

Our previous member w/ cavernomas was named Jo. There may be posts in our Archives from her. Use the Search this Community Tool for Cavernoma conversations or Posts w/ the name Jo. If not, let me know & I will ask her if you can contact her by email.

Love Candi
 
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supergrangran replied to dancer86442's response:
Thank you candi I went to the GP today and apart from the fact that he looked about 16 yrs old and was a trainee GP! I am not sure it was any help. He said the pain is neuropath way pain from the dystonia and has said that I should take the diazapam every day to try and stabilize the muscle spasms.

Thing is I am not aware of the spasms in all my muscles unless I am having them in my sleep! it is like neuralgia pain in every muscle and joint in my body I swear my finger nails and hair even feels sore! In the morning I struggle to get down stairs and at night the only comfort is my duvet and strong painkillers I feel exhausted. I am not sleeping well either.

I am in a better place now but a few weeks ago when I got the news that the cavernomas are inoperative and then less than 24 hrs later was told I had dystonia I didnt know where to turn I took out my will and checked it. Also and I am sure this has not helped but I made a list of things needing to be done and have been working through this list as I feel that I wont be working for much longer - don't know if that's true but it is the way I feel! I have to say I am paying to have the things on my list done I am not able to do it myself

Anyway I am rambling now. 7th sept I go to the clinic for botox for the first time and on the 9th sept i am going on holiday up north of Scotland so I am thinking would like to put the botox off until my holiday is done just in case of side effects and the very young looking GP has said that the consultant will be more able to offer me some advice for the pain

would be nice to talk to Jo I will try and locate her on the forum

hugs to all soldiers of health issues

Christine x
 
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dancer86442 replied to supergrangran's response:
Christine,

Yes, I know about Young DRS/assistants. My Neuro is a PA. But, ya know what? She actually knew More than my neuro about certain EP Matters/Issues.

But, he is Rite! A Specialist will Know More about specifics to both your Issues. GP's are not trained for That.

BTW: I replied to your other post to Jo. She Quit our site. But, I Know Jo has had (Still Has!) a very Long & Happy Life w/ her Issues. Please Hang in There! I'm going back to Facebook to contact her. Are you on Facebook?

Love Candi
 
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supergrangran replied to dancer86442's response:
yes I am I have to confess a learner with facebook but I have a facebook account.

I have started taking the diazapam every day now and have had a full nights sleep for the first time in a few months. I forgot how good proper sleep feels like! so today is a good day but I do feel I need to learn more to be able to accommodate these new character building 'add ons' to my life.

I really appreciate the support, this week I am attending my first dystonia support group meeting and am looking forward to the company. It can be a bit daunting at times especially on days like today when we were asked to attend an 'absence monitoring' video at work. There was nothing in there which said don't worry if you have a chronic ailment you are dealing with. It was all about how they need fit and healthy people to be working there - not in the least threatening or patronising!

Having said that it has still been a good day

lovely to speak to you x
 
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dancer86442 replied to supergrangran's response:
Hi Christine.

I just visited Jo's page. She left today for Thailand. Not sure how long she will be gone. Hoping she took a Laptop w/ her. Maybe Not, cuz, she is taking her children, also. Adults now. And if I remember correctly at least 2 of them have the same problem. I am Glad you have a support Group near you. Have you cheked for EP support groups in your area?

That Video you watched sounded Daunting to Me! But, you have your Rights! It is Illegal for employers to fire you because of a Meidcal Issue. Unless your job is or could be dangerous to you or others'. More Info on EFA site. Epilepsy Rights!

I'm glad you are w/ us. I Wish I had More Info at this time. But, Do Your 'Homework" Search for more Info! And keep on Learning! It does Help to do your Own Research & Learn all you can! Knowledge is Power when it comes to dealing w/ Ep & other Disorders. Lots of Love. Keep talking to us. We wil be here for you!

Love Candi
 
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dancer86442 replied to dancer86442's response:
Friend Request: JoAnne Lord AKA (JoAnne Wiltshire) in Australia. If you see this Tonite, you mite still catch her. If not, She will be back Sept 26. HUGS!
 
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supergrangran replied to dancer86442's response:
Thank you if I don't catch Jo before she goes I will look forward to talking to her when she gets back. I have had a strange day! I am getting used to the sensation of feeling rested now the quality of sleep has improved but today i found it really difficult to manage my neck spasms and must confess for the first time I actually felt quite embarrassed with them. My head is a bit all over the place ( in more ways than one!) just now so I expect this is not helping. I have tomorrow off work and am looking forward to the support group, I will let you know how it goes.

Also I have received a letter from the GP and have to go and see him about a correspondence from the Hospital. I am sure that the anti seizure medication will be prescribed at this consultation. I am feeling nervous about the botox. How do you cope if it affects the swallow muscles I am so good at side effects it will be my early Christmas gift if it doesn't happen. Also I have been told that the anti seizure medication will put weight on and that is the last thing I need right now. I have struggled with weight issues my whole life.

Its all going on right now how lucky am I ? but not all doom and gloom I am booked to go away up north of Scotland 9th Sept and I am so looking forward to getting away from everything just for a while.

Nice to talk to you and thank you so much for the support

love and hugs
Christine x
 
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dancer86442 replied to supergrangran's response:
Hi Christine,

Hopefully the meds & Botox will help. The meds can take 4-6 weeks to reach a Therapeutic Level in your system. Please keep track of Everything w/ a Daily Journal. So, do you know the name of the med? Tell your DR about your weight issues & Hopefully, he will prescribe something else! There is More than 1 med to control seizure activity! Also ask about Diets as Treatment for Epilepsy. Modified Atkins, Atkins, Gluten-free, GERD & Others'. More Info on epilepsytalk.com. No need to join. Just type on her Search tool on the site 'Diets'. The Link for her site is in Tips Or Resources.


Christine, All meds/treatments can have side effects. What side effects depends on the persons Metabolism. I do Know A Healthy Diet can diminish & even eliminate side effects for Our meds. So, if you have been fighting weight issues, does that mean you Now eat Healthier? Or do you 'cheat'?

As for not all 'doom & gloom': North of Scotland? WOW! Take lots of Pics! And Friend Me on FB! I wanna see. Jeanne Phelps

Hope you write down whatever questions you have B4 you go to the Group Meeting. Take pen & paper, too. Write down any Interesting Info! ENJOY!

Love Candi
 
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supergrangran replied to dancer86442's response:
I have just returned from the doc re letter from hospital. I have a prescription for Sodium Valporate starting wk 1 at 200 mg, wk 2 400mg and wk 3 500mg.

And then here is the good bit! he asked me if I wanted to start taking the meds as Doctors don't always get it right when it comes to epilepsy OMG!

I have decided I am going on holiday and will deal with this when I come back 20th September. I CAN'T TAKE THE STRESS ANYMORE This debate have you or have you not has been going on for more than two years since the first brain scan and symptoms were reported, I stopped driving for 9 months because the hospital said they could not be sure that it was epilepsy. Think I need to deal with the botox issue first think trying to deal with both together is too much.

My head is 'mince', scrambled and overcooked right now. Am off to get ready for the support group will speak again later.

love
Christine xx
 
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dancer86442 replied to supergrangran's response:
Christine,

What your DR said is Absolutely Rite. They cannot Guarantee that any anti-epilepsy Drug/treatment will work for Any Specific Person. Sometimes, the First med tried does work. SOMETIMES! Most times it Don't. I call this the Med merrygoround! Cuz, that's exactly what it is. Same goes for Drs. merrygoround. If you don't like the 'animal' you chose, then ya gotta select another one to ride. Until you find one You Like. Up/down/all around. It is a Journey. BUT, the Sooner you find a med/Dr that Works for You the Better! Just be sure the DR & any other DR are Communicating not just w/ you, but, w/ each other, also.

You can Learn more about your med & Botox using WebMDs drug/supplement Tool.

If you can tolerate the symptoms you have been experiencing: Well, the decision to put off meds is your Choice. But, keep in mind, the longer you put it off: the Possibility of Worse seizures IS possible!

2 YRS? You should have been Treated for Epilepsy after second Episode. Dang friggin DRS!

How was your support group meeting? I Hope you learned a bit.

Love Candi
 
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supergrangran replied to dancer86442's response:
feel so much better for going to the group, met some amazing people but one in particular was very informative for me and made me realise big time that I am ignoring symptoms.


I have for the last 2 weeks or so had a weakness in my right side and when I walk any kind of distance at all I can feel the muscles in my right leg giving up on me and basically feel my whole right side start to feel a bit floppy. I had this some time ago and it got better I thought with exercise now I am not so sure. I learned today that I need to be paying attention to this. I also have a kind of writers cramp happens which is weird because its as if your hand freezes mid task. I am realising now that I am actually living with symptoms that I thought was just a nuisance or age or something!

Sooooooooooo I now totally get what you were talking about when you said keep a journal! I have been so focussed on staying at work that I have been neglecting myself and this will now change I will get the journal started and having met Justine who is taking the anti seizure meds I will go to the chemist tomorrow and have the prescription filled. Tomorrow is the first day of the rest of my life and it needs living!

I am so grateful to those who are willing to share their stories and help the rest of us on this journey and in my case it may not be epilepsy but there is definitely a neurological disorder going on that no longer is going to accept being ignored.

This group are supporting all neurological disorders because of the similarities in the symptoms and some times the disorders appear to cross over into each other eg dystonia with parkinism and dystonia with epilepsy.

Its been quite a day but a good one.

Love and hugs

Christine x
 
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dancer86442 replied to supergrangran's response:
Hi Christine,

WOW! I think you finally got it! Thank Goodness for your Support Group! Tell them I said "THANK YOU THANK YOU THANK YOU" for getting thru to you. What you explained now, well, you didn't say anything about that here. Yes, neurological problems Can imitate Epilepsy. They can, also, lead to Epilepsy. As you have Now Learned.

Good for You! Journal & Meds! Now, be sure to read the Info under Tips on Journals! Keep asking questions! Education is the Key! Know this! You are Not Alone!

BTW: You can Friend Jo. She has a room in Thailand w/ Internet Service. So, unless she is real tired from a Day of Fun, she will be available.

The symptoms you are experiencing. Hard to say. We all experience seizures in diferent yet same ways. Under Resources: Epilepsy Faqs link: does a good job of explaining Types of seizures Symptoms.

Love & Hugs to you. Hope you continue to Share w/ us. As you have Learned Sharing is the way WE Learn! And future members, looking for Similar Info, will want to read what you have to say.

Love Candi (((XXXXX))))
 
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supergrangran replied to dancer86442's response:
Wee update! and need to be truthful here as I hope others have felt the same way and I hope this helps!

Here goes I got the prescription filled for Epillum, then sat the tablets in my cupboard and looked at them every morning and evening for four days thinking OMG I can't do this! It felt some how that taking the tablets felt like giving in and I wasn't quite sure what I was giving in to.

On around day four I gave myself a severe talking to and took the first tablet in the evening. I slept the full night for the first time in months and through the day my muscle spasms were significantly reduced I thought I had died and gone to heaven. I cant remember what pain and spasm free feels like. The pain killers and diazapam has never worked this well.

I am now on day 5 of the tablets and feel very nauseous. I also had the most bizarre dream. I should say at this point the dream was in cartoon.

The journal is going well with a few embarrassing moments when I was in the swimming pool and was convinced that there was a strong smell of sausages frying. I was swimming at the time and asked some one if they could smell it too and they replied 'wishful thinking'

I have ongoing weakness in my right leg and arm which sometimes is very painful and tomorrow I go to the botox clinic to see if they think I need botox or can I manage on drugs for a while. So basically it is going well and I am feeling better about things.

Hope all is well with you
love christine xxx
 
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dancer86442 replied to supergrangran's response:
Hi Christine,

WHOOHOO! Thank You for being sooo honest & sharing. It does Help others' me understand what you are experiencing & how best to answer you. I may not be a DR, but, I know a bunch. And am always willing to learn more.

So, nausea & dream: Side effects of med. DUH!!!! Should diminish disappear w/ 4-6 weeks. If Not, Report to your DR.

Pool episode: Do you tell someone what to Expect? What to watch for? Buddy Up? Why? Cuz, hon, the 'smell' was actually a type of seizure. Odd smells, tastes, etc. are Known as a Simple partial. Or Aura. It Could, but not always, lead to other seizure Types. You experience this Again, Find a Safe spot. Plus note it in your Journal. Epilepsyfaqs.org. Listed in Resources.

Keep up the Positive attitude. You will have days when that is Hard. Don't let it get you Down. Always Remember: You Aren't Alone! Stay Strong! HUGS!

P.S. It's tomorrow. How was your appt?

Love Candi


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