New to forum Happy new Year advise please

[hopeful]

Hi there everone.
Just a little background on myself I was diagnosed in mid twenties due to status. Then having 90 seizures a month both tonic clonic's and Cplx seizures hope acronyms correct. Moved home changed GP . After her help and referrals and addition of Keppra that cut number of seizures in halve straight away best of all decreased tonic clonic's and that made life so much easier for others as well as myself as I am a carer for my husband after brain haemorrhage and stoke. My meds now 3500 Keppra, 800 Carbamazepine, 400Lamictal (and 30mg Frisium when cplx seizures get stuck) memory not so good so just checked dosage package usual side effects very tired and memory not so good. Best of all about fifteen months ago went down to just one yes one tonic clonic in twelve months and about 2-3cplx sezures a month thought it was my Birthday little uncomforable kept waiting for them to happen yet absolutely wonderful and preferrable and felt so much more confident. Then had D&V for couple of days afterwards seizures up to 10-20 cplx week yet still only tonic clonic’s 3-4 month so Consultant increased Keppra no difference . Flight home from Cuba (end of November) seizures went on over seven hour period some quite long nearly diverted to Canada but very fortunate to have A&E sister and med link on board so given me lots of meds etc. and med link (then hospital)I felt very lucky they were there but sorry for them. Decided to stick to short haul flights over large expanses of land in future not fair to divert a plane load of passengers and my lovely Gp with humour insists that Cornwall is lovely. She decided to increase tegretol as still felt unwell but put cause down to D&V, sezure earlier in day ,delayed night flight and start of cold recipe for disaster. Lost a few brain cells which you definitely I need at 50+ as unable to remember hols for about two weeks.. At present about 4 tonic clonic’s a month and little ones keep getting stuck so taking Clobazam to stop these so not sure of the number of Cplx more than 10 a week and GP thinks I am having sub clinical ones as well. This is like a book sorry folks. Wondered if anyone can help me usually feel upbeat and confident since being so well about twelve months ago now know that I not like others and confidence is much lower than before definitely used to cope with them much with tonic clonic’s that happen outside my memory and tireness is a problem and as my husband more disabled than I am he also has memory, sight, walking, orientation and unable to look after himself it can be a little bit of a struggle but he is a lovely man and I want to repay the kindness over the years. I have lots of things to be really grateful for but am tired very tearful and unconfident about going out not like the usual me at all. Not used to talking to others about problems so BIG APOLOGY but wondered if anyone had any practical advise as this would be really helpful. Thank you for reading this.

[speber]

Don't apologize!....you are among friends. You are very upbeat yourself for someone who has been through so much and has your 'cross to bear'.

I try to keep the stress as low as possible...the humor as HIGH as possible...the smiling as frequent as possible...it's really the best approach for me.

For stress, there are TONS of things to try (yoga, walking, music, etc...) but ALL raise your seizure threshold from what I've seen---thereby reducing the seizure frequency (in theory).

This forum is FULL (and growing!) of good, knowledgeable people who are willing to share their experiences with efforts to have a better quality of life......you have come to the right place!

Peace

[hopeful]

Hi Speber glad to meet you. Great advise just reminded me of how I am normally thanks. I smile that often that our dog greets me with a smile in the morning.The things to try are a good idea especially for me at home. Thanks.

[spinnymommy]

Hello! You don't need to apologize at all. In your post you already shared some of your experiences with epilepsy. Sharing our experiences and learning from one another is what this place is all about. And along the way we get to build relationships and friendships.

So, welcome welcome welcome!

Kerin

[hopeful]

So friendly wish I had found this site sooner you are all so kind. Thankyou spinnymommy.

[RobinN]

I am also glad that you found us here at CWE. You are among friends.
I do not suffer from the disorder, but my 16 yr old daughter does. At the moment she does not take any medication, because it was my feeling they were causeing some of her seizures. We are working with nutritional changes, with supplementation where necessary, natural hormones, and hopefully neurofeedback this year. Keeping stress down in a teen is difficult, however that is a goal as well.

There is a lot of great reading material here. So I hope that you make yourself comfortable and join in the discussion.

[hopeful]

Glad to meet you cannot get over how anyone is so helpful and friendly. Sorry to hear your daughter has epilepsy good to see how hard both of you are working to get control . Have already found some good reading material and other hobbies to do.

[skillefer]

Hi Hopeful! Welcome Welcome Welcome!!! Glad you found us.

[Birdbomb]

Welcome hopeful

Make yourself at home. We all get a bit teary and overwhelmed from time to time. This is the place to be!

[hopeful]

good night's sleep back to usual cheery soul glad I popped into the forum so very friendly thank you.

[Bernard]

Hi hopeful, Stacy went through a period where seizures were uncontrolled, frequent and severe. It was awful.

We must have tried 3-4 different approaches before she responded to Dilantin and finally got them under control.

If what you are doing isn't working, try something else IMO.

Are you keeping a seizure diary to track your seizure activity, diet, sleep patterns, etc.? Sometimes they help in identifying seizure triggers that can be eliminated.

[hopeful]

Slight hiccup in politics GP stamping her feet at them to get it sorted out so I can see someone soon. I am very lucky she is so understanding and so good. She adjusted my meds when I got home from Cuba. In the meantime hoping this is just a cluster of seizures. Funny you mentioned seizure diary I have put them on the kitchen calendar and just sent off for a seizure diary as would not have a clue of how many having or when happened, memory bad either due to tegretol or seizures and getting old (did I say old). Think I lost a few brain cells on flight home. Really important to me to be as well as possible as I want to care for my lovely husband who is disabled (massive brain haemorrhage followed by stroke). Appreciate the advise, everyone so helpful and friendly here definitely pulling up a chair to say a little.