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Fed up today

Mon, 07/11/2016 - 09:50
Hi everyone I'm Debbie I am 40 years old and have been having seizures for around 15 years but they were undiagnosed for a while. I was having nocturnal seizures , the first few times my husband called an ambulance but was told it was probably a reaction to having a hypo (been type 1 diabetic since I was 14) it was finally diagnosed after a few months , they did stop as soon as I started on medication (lamotrigine) Then the partial seizures started , I was told by a neurologist it was just vertigo (???) he sent me to the epilepsy nurse though and I kept a diary while waiting for the appointment , she was modified when she read it and called a different neurologist who diagnosed partial seizures . To be 100% sure they put me forward for mobile EEG , I called the hospital when a batch started and they wired me up for 24 hours and while I was home I had to press a button when I had one , go back the next morning and have a new battery , this went on for 3 days and the results were as we all suspected ... partial seizures . It took a while to get the medication right and I was fine for years then I had another batch and meds went up . They happen on and off so I have given up getting my driving licence back . The neurologist is pretty sure they are stress related so I try to stay as stress free as possible but things do throw a spanner in the works sometimes . I get a few seconds warning so I can normally get myself sat down , the batches last between 3 to 5 days and sometimes 25 (ish) a day which is very tiring . It's been a long time since I have had the partial seizures , last time they were happening the Dr said it was due to the pharmacist giving me different makes of the right medication so even though I was getting the right drug it was mixed with other bits . I would get used to one make then it would be changed I would seizure get used to it , it would change next prescription , I now get the same make every time and it had worked until this morning . The GP did say if they keep happening I will have to go back to the neurologist which I'm not really concerned about . I got very little warning , have had 5 seizures so far today , I work from home and only have until Thursday to finish what I'm doing , it normally wouldn't be a problem but I'm felling dreadful so I'm hoping I can still get it finished . I'm stuck with a horrible taste in my mouth now and im absolutely shattered . It feels worse this time because I was so sure it was all under control so it was a shock , there has been a lot of stress recently so I'm putting it down to that but I'm still really annoyed , I know it won't last for long and it will be forgotten about soon . So I thought having a quick moan to people who understand might help :) I have the most amazing supportive husband who would rush home from work if I called him but I see it as a few minutes here and there so we don't need both our days mucked up especially as I'm going to go and have a quick sleep . Thank you for listening to me moan , I always feel awful when I have a "it's not fair , why me" day as I know things could be a lot worse . Take care everyone .

Comments

Debbi welcomeStress is a

Submitted by just_joe on Mon, 2016-07-11 - 15:10
Debbi welcomeStress is a trigger for som people.If th medication was fine for awhile then did you ask why it isn't working like it did? Or did you wait for your next appointment to bring ti up? If it is your GP as I saw posted he knows some things about seizures. He knows some things about the medications. But he may not know that several seizures in a day could be considered cluster seizures and that therre are medicatins to kep that from happening. If I have a seizure I take one in order to keep from having anothr one seconds or minutes after that one. You posted you are not concerned about going to your neurologist. That is the doctor you should have been talking to and asking your questions. "I am having more seizures Do we need to raise th dosage" Why am I having more seizures now then I was a few months ago" What can we do to stop these seizures'? As for the GP telling you it is is the pharmicist___ It needs to b put on th backs of the government since written into regulations that if there is a generic the pharmicists must offer it first. All doctors have to write name brand only on their prescriptions. I thought I had gotten a batch of medications because I started having a couple more seizures. I went and checked at Sams and we went back 5 years I had used 6 different makers of the generic and the one I had goten the batch from I had gotten meds from 4 years before.Also understand that as you grow older  other things can affect your meds. One bein weight and another is hormones. Have either of those changes in the last few years?I would suggest you talk to your neurologist because if yall gt together you might get your drivers license back.Joe

Yeah so not fair.alcohol free

Submitted by 9liv3cat on Tue, 2016-07-12 - 19:48
Yeah so not fair.alcohol free mouthwash for the icky taste

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