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).
Hi everyone I havent spoken for a while and thought I would check in....Update...I have had another brain scan which has shown another bleed/leakage of blood from the cavernomas...also the right hand business looks like it is here to stay and I am just trying to get along with it like it is a friend with BO...its here and I have to try and play nice!!!...further update...my leg and feet are now joining in...... have muscle spasms in my feet and on a bad day my right foot turns in making walking painful. I am now taking the meds prescribed by the neuro doc who warned me that these tabs will give me an appetite the size of an elephant and I will put on weight...wrong...I am constantly nauseous and thought at first that I would wait until I got down a couple of dress sizes and then complain but it is getting too much...my staple diet is tea and toast, or milk shake or soup and I think I am now not getting enough calories to work in my job...The GP has told me to reduce the tabs until I feel better and then to try and increase them again, So my choice is....take the tabs, spasms controlled but horrendous nausea or reduce the tabs nausea and severe spasms.
So it looks like back to the neurologist for me... there is still an uncertainty about epilepsy....next appt 4 weeks
Hope all are well and a wee add on!!!!!.... to cheer myself up OMG I cant believe I even did this but a friend talked me into going on a date line site....it lasted 5 days...it was so full on you needed a note book and pen beside you and then men just behaved like they were in a sweet shop and if you didnt reply they just kept sending you pics of kisses/roses etc like how could you not be interested if you are on here...needless to say I have now withdrawn and all I have to say in my defence is...the things you do when life gets you down and you dont want to be a moaning minnie!!!
It did cheer me up for a couple of days it even made me feel good about myself because the men on these sites dont really know about your life's difficulties. I do appear to have aquired a pen friend from it and I will let you know how that goes
well guys I hang my head in embarrassment! I bottled it could not do the botox thing I was too scared of the side effects.
Tablets have reduced my appetite so I am quite happy with this and I have had another brain scan last week - dont know the results yet!
Overall been feeling a bit sorry for myself, wee bit like a lost soul, scare to go out and meet people. I am also struggling with a family who seem a bit bored with all things medical except my son who presently is my rock.
Journal is going well a real picture emerging of the symptoms had a tough week as my right hand has stopped working and I am right handed. My Doc has changed appointments procedures and I got confused and dont think the girl was too impressed whoops! who cares!
went holiday with my ex husband - biggest mistake of my life! and things can only get better!
Also am worried that if the hand business does not right itself what is going to happen to my job.
Apart from that life is great and I am just working on the right direction my chin should be pointing!
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 xxxView Thread
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.
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.
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
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!
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