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Life has not changed much except last year was a roller coaster. We spent 2 weeks touring north India in March, 2020 and got back out on the last flight before they locked down there back to the UK.
Nobody wore a mask in Birmingham Airpot on our arrival and there was no wheel chair waiting so I had to walk before finally finding one. However, all the others who needed assistance also walked, it was bizzarre.
I was in a wheelchair due to walking off a ledge and severely spraining my ankle in Agra at the beginning of the holiday but I did see the Tahs Mahal in a wheel chair. We travelled from Agra south to four other places of interest having completed the Golden Triangle section of the holiday.
We travelled by train to Gwalior for one night then moved to Khajuro, then to Varenasi by plane. From Varansie we caught the train to Lucknow and flew from there to Delhi for one night then flew home via Dubai, which was deserted due to the virus. So glad about that as not many people wore maske but the were doing so in India and taking temperatures wherever we went on our journey.
When we arrived home we had no idea what the year ahead held. First of all the new bthroom was unfinished due to the Virus stopping access to products and servises, the Gas Man not coming was the biggest hold up and he only came in June. It contained a toilet that was not flushing and that was it until work progressed tothe point of there being a shower tray down and unit in to actually shower in, though we had been showering in the old bath rigged up with shower curtains to stop the floor and the walls getting wet. The tiling could not be finished until the shower basin went in after the gas man had moved a pipe under the floorboards.
The plaster supply arrived in July and the bathroom was finished at the end of July and we then had new windows fitted after which I was finally able to clean up the dust and building debris.
Through this stress I had no seizures until Autust 2020 when our neighbour came back to visit again after lockdown eased. There were one or two more in 2020 and one in March 2021.
I have been taking Omega 3 and Krill oil which is supposed to be good for seizure control and it seems to have worked but I have also been taking Triphala tablets since September 2018 after it was recommended by a Sri Lankan pharmacist for the digestive system and general well being.
The lockdown hardly affected us. Life goes on and we start to pray that we can go out in the evenings again taking the dog with us.
Tootsie has been with us for two years now but that is another story and so is her recent illness which has cost a fortune with vet bills and medication but at least she has survived the trauma and come through the other side with a clean bill of health thank goodnes.
So glad to see the back of 2018 as it has been stressful especially since August when we acquired our neighbour's dog. He went into hospital due to a heart attack after he had been home and recovering from his Stroke in May.
In January we lost Hector or Tibetan Terrier. He had heart failure and it was kinder to have him put to sleep rather than let him suffer major surgery that might not have been effective. RIP sweet Hector, gone and never forgotten. We went to India a few days later and that absence helped the sudden loss. The workmen continued work on the back patio whilst we were away and it was completed in February when we returned.
They started the work on the front patio when we were away in March druing the Beast from the East freezing weather which they worked in whilst we boiled in 90 degrees temperatures. Sadly, we had to come back to the cold
Seizures at night continued through out not surprising with the trauma of the front garden being completed whilst we were here to see the mess. The rain was abysmal and it was still cold so the work dragged on until May when the work was completed and the clean up began. Not only was there mud but also concrete and stone dust
For a break we went to Greece for two weeks in June and got back to the hottest summer in decades. I had a seizure during the night in Greece due to being constipated. The seizures came and went in no particular frequency but I noticed that too much carbohydrate before bed seemed to trigger it as well as eating onions. Not everyone understands the expression "No Onions please" so take away meals can be tricky. Alcohol late at night is packed with Carbohydrates.
We currently have our neighbour's dog and have had her since the end of August 2018 when she arrived following her owner's heart attack. He had a stroke in May and was recovering. We had walked Rosie for him since June and her son dropped her off as mentioned in August.
We went to Sri Lanka in September and had to farm Rosie out to friends who looked after Hector in the past when we were away.. Luckily their dog got on with Rosie so that was a worry gone.
It was during this holiday, to celebrate our 30th Wedding Anniversary, we met people who gave advice on what to take for constipation. This was a decoction of Tamarind. A pharmacist further suggested TRIPHALA tablets which can be taken as a laxative at night in a high dose and then taken daily as a lower maintenAnce dose. TRIPHALA is a herbal remedy comprising three herbs.
I have had no seizures since October and take two x 250mg TRIPHALA before breakfast and three x 250mg at bed time. I am hoping this dose is sufficient to keep the seizures away. If not there is always CBD Oil which is now available legally in the UK for medicinal purposes. That would need a proper prescription from a doctor though. I know nothing about CBD Oil to self medicate.
Rosie is set to go home some time this month as her owner is recovered enough to walk her and hoover up after her because she moults. Hector never shed and I will be happy to cease the morning clean up session once she has gone home.
Time flies and another year still with night time seizures but not habitual ones so I have increased meds but no further than 200mg Lamactil in 100mg doses.
The cause of the seizures as always was stress, lack of sleep and constipation. A further thing that has been removed from my diet is Onions. They do something to my body's PH levels and it is a horrible sensation akin to an Aura that does not end.
Avoiding Onion is not as easy as it sounds because it is not high on the allergy list and people still don't worry about such things, especially in Indian Restaurants.
I have just discovered Noni Juice which is keeping my system or Drain as the French call it, pretty clear. It was discovered at a beauty spa in Mauritius last week. As Noni has so many other good properties it needs monitoring to see what happens after a month of use.
My last seizure was actually a Day Time one and thanks to being near a friend at the time I was able to carry on what I was doing prior to the incident. Walking the dog in the late afternoon, I walked by a friend’s house to see how he had got on with some drawings he was going to do of our porch. He came out of his front garden to greet me and the next thing I remember is being made to sit on his neighbour’s wall to rest. John, the man in question, asked if I was all right and he was given the explanation of the strange happening when I was aware of the situation. We talked for five minutes or more and he let me carry on walking Hector and John went to our house with the plans he had drawn up for the porch.
Hector took me elsewhere to the walk I had told John we would be doing and at the far end of the village John caught me up in his 4x4 with David in the passenger seat. He was so worried that he made David come and look for me with him. Such a caring person.
John repeated what form the absence took and apparently I spoke to him then stood and stared at him. I did not fall and he thought I was having a heart attack or stroke, the symptoms did not match either so he sat me on the wall as mentioned and did not call an ambulance.
This occurred following a stressful few weeks of building work and tidying up at home, lack of sleep and all other triggers that cause absences. I don't remember the last time I had one during the day as they have been nightly when they occurred just recently. I would have to check but it was a few years ago because on my last visit to the Neurologist in June he said that I could drive if I wanted, which implies it was over five years ago when the last day time absence occurred.
The absence was on 9th September 2016. Two days earlier we had just finished the clearing up after the new tap was fitted in the kitchen and muted the idea with John of fitting a porch at the back of the utility room. All this work came after the chimney was repaired in July, the utility room was re-plumbed to move two appliances and a sink was fitted in there in August.
Stress enough especially as I had severely sprained and bruised my back in May and had ongoing accupuncture for the pain from June. Movement was limited so bending over was impossible which made any tidying up take longer and the painting that was required for any of these tasks to be completed more arduous.
On Monday 20th October 2014 I awoke to find David standing beside me and realisded the dream I was having, which was strange to say the least, was real and I had just had a seizure. He tells me I was shaking and talking rubbish saying that I wa sorry etc. I felt drained and did so for a day but that passed and there has been nothing since.David also mentioned that I had suffered a seizure whilst we were in Sri Lanka in September which I kow nothing about. It was quite a stressful holiday and trying to avoid certain people on the beach got to be a little tiring. What did not help was being unable to sleep well either. The usual problem of snoring keeping me awake has not gone away and the previous afternoon a beach masseur tried to interfere with me which was most unwanted. The person concerned is a friend or rather was as it really did upset me and unsettle me. I really did not want him to massage me but his wife insisted as she wanted to massage David. Well, that was playing on my mind and I was having some really strange dreams whilst we were away which also led to lack of sleep. Another factor was that I was consitpated which has always been unhelpful. I have not increased medication but maybe should increase back to 100mg daily again as I am currently on 75mg. The other thing I remember is that I had missed the evening tablet not on purpose though.
As from 1st July I shall reduce meds to 75 mg daily Lamictal.
I have been on a reduced dose of 75mg/100mg on alternate days for four months.
The only gliche I have found is when I eat large amounts of onions which has happened before too. As soon as I cut the onion out of the diet and take Apple Cider vinegar to normalise the body's pH levels, all goes back to normal.
As I enjoy Indian, Chinese & most other foreign foods it is not easy to avoid onions but with care it has been possible to chose dishes that if they do contain onions they are visible and easily removed. Food like coleslaw can have a lot in too so I have stopped eating that altogether from eating it daily.
It will soon be time to visit Dr. Reuber, my Neurologist, so will be nice to advise him of the reduction.
It is a horrible feeling to sense that a seizure could occur unless something radical is done so action is taken quickly to normalise the imbalance that causes the sensations to arise again. Obviously pH values are important to the functioning of the brain.
Following six months of no seizures I feel it time to decrease meds again so from 1st February I have begun the long slow reduction process to know out 25mg lamictal. Will see how that goes then for a few months and consider maybe in six months from March another reduction. ++++++It has been a really stressful December and January which I have survived and have a new garage, a new freezer, still sitting in the conservatory until the garage has dried out fully, plus we are in the process of having a new carport constructed. The old one was dismantled at the beginning of January and it has been wet ever since so the water has been flooding all around. ++++++ I am just happy to note that all this stress of destruction, builders, construction, furniture removals etc has not induced a seizure.
The good news is that we are fit free to date and the news from the results of the EEG are good as no epileptical activity was noted. However there were some abnormal peaks. +++ The letter says, "However, there was an isolated burst of sharpened and irregular activity in the left temporal region. This means that we can only see nonspecific changes in the EEG now. These are not closely associated with a risk of recurrent epileptic seizures should you decide to stop your anti-epileptic medication completely. That said, an EEG not capturing epileptic activity does not rule out the possibility of an epileptic seizure recurrence." He has copied the letter and posted it to my GP and the Epileptic Nurse who I am told to contact regarding continuing the medication prior to seeing him again next August. ++++ This means that I have had a letter from the Nurse too, For now I will continue on the current dose level of 50mg Lamictal twice daily. I have not been on this dose for long enough to think it time to further reduce. The nurse tells me that I am in the discharged patients filing system unless I contact her. That is fine. ++++ My only side effects from surgery is the headaches from changes in Air Pressure and being unable to tolerate anything that blocks my forward field of vision, for instance walking behind someone in a crowd.
The letter came from the neurologist to say that the EEG appointment would be sent within a month. After that we can decide whether it will be feasable to further reduce medication or not. He has told me to stay on the current dose of 100mg Lamictal daily until after he has seen the results. I feel that he would be happier if I remained on a low dose in order that fits do not return, even if it is just over the point of being homeopathic. Still seizure free to date and it would be nice to be completely free of medication to give me complete freedom.
As of today this will have to be my uptodate record.Current medication levels are set to reducing down to 100mg Lamactil daily (50mgx2daily)At present I am half way through reaching this goal taking 100mg every other day and 125mg. In two weeks I will decrease to 100mg daily in total. It has to be said that with my neurologist pointing out that completly ceasing medication is risky due to the fact that if seizures return then medication will not control the seizures again so it is better to have a low maintenance dose.My current status is Seizure free since May 2008.
Today I am doing something that has never been done - for me that is.
We are just off to look at a dog with the view to bringing it home. I am just trying to think what questions need asking and quite frankly cannot. It does not bother me which is maybe a little fool hardy if, say, he is not house trained. We will see.
This all began with a housewarming party in Liverpool where we met a Tibetan terrier called Diesal who was adorable. As our friends were going on holiday they were looking at kennels but were devastated to see how little space Diesal would have - about a dining room table sized cage. During a conversation about logistics, we live half way across the country, they live on the coast but we were told that they could transport Diesal to us. I said it would be no problem and we had him for three weeks. This may not seem strange but I have never owned a dog before and not handled them much either.
So this was another learning curve but we coped and I would never have offered prior to surgery. Somehow it just did not matter that the carpet was getting slightly dirty and the house was getting cluttered with toys. It was enjoyable albeit stressful but we calmed a young and boisterous dog down much to the joy of our friends.
We missed him and have decided to get one ourselves. All this is by the by but it shows just how surgery has changed me. The other thing is that I have not had a seizure in two years and I am again decreasing my medication. I have not had any glitches either and those that did occur were stopped by means of making my brain use another neural pathway for the impulse to travel down, namely the one that takes me into the state of meditation. The grass is growing over the old pathway that the impulses travelled which causes the seizures and now I hope the gate can be closed on that chapter of my life - if you can call 43 years a chapter.
There seems little that bothers me anymore and my concentration is intermittent. I can still write a paragraph without losing track of what I first said in the paragraph. However, forgetting why i have gone from A to B can be a nuisance at times. It has to be said that age related memory loss could be the cause of this.
My mother died in December, the funeral was in January when the snow was thick and travelling was hit and miss. It was the first time I had met relatives in 20 years and that worried me but when the meetings happened it was OK. At least I held my own so what I thought was stressful it turned out was not.
On occasions I forget my evening medication without ill-effect which is lucky due to this happening when we travel long haul. Possibly this does not mean much but to go 24 hours without medication has not as yet cause problems. Reduction though is being done at 50 mg over a period of one month by missing one dose every other day. Eventually I hope after another month to omit that and dosage will then be 200mg AM and 200mg PM. It is at present 200/250mg am/pm. My neurologist is not aware of this but after our visit in July I am hoping he will write a prescription for 100mg tablets so I can further reduce the doses with the view of completely withdrawing them from my life. This will give me freedom to do things at short notice without having to worry about having the medication on hand.
