Posts Tagged ‘medication’
Sleeping Pills Linked with Early Death
I was once offered sleeping pills by a GP but they didn’t make any difference to my sleep pattern at all so I stopped taking them. I know it sounds nuts to give sleeping pills to someone with narcolepsy but if I remember correctly it was to help control my sleep pattern whilst traveling. Perhaps you have been offered them too?
BBC News – Narcolepsy link to swine flu vaccine investigated
BBC News – Narcolepsy link to swine flu vaccine investigated.
Queen of Sleep literally got a bit fed up sleeping, reading about sleeping, writing about sleeping, thinking about sleeping and yeah…sleeping so she took a break from it all but is returning with inspired energy in 2012
Sleep Safe out there!
Meet the nodding-off dog: Teenage girl who falls asleep at any time woken by her face-licking friend | Mail Online
Click the image to go to MDD's website
Queen of Sleep is back from no net reception!
How many sheep can you count?
I have been on a writing course and a holiday in areas of England with no internet access at all. Who knew they existed in 2011?
It’s been lovely, restful and absolutely amazing and that is just an understatement. I have pushed my energy levels to the max but been with people I trust so I have felt absolutely safe. I wonder why it seems so difficult for some people to understand what living with narcolepsy is really like and so easy for some others. It is probably a combination of life experience and empathy skills that makes all the difference. Imagination and the ability to put yourself in another person’s shoes/situation and really feel what it could be like to have/be “……….” The ability to feel empathy is only the beginning. Some need processing time or will try to help straight away. For example, I can cure you with XYZ. Maturity in facing difference can only come from knowing that 1. Never give advice without having been asked. 2. Listen (properly) 3. realise and accept that you and your history (point of view) is one of many and that your advice might not be right and yet that at the same there could be one of many right answers. People are quick to judge and quick to categorise in order to feel more secure. I have pushed many potential friends away by being too upfront and in your face with explaining EVERYTHING about narcolepsy. Perhaps it’s a stage you have to go through when dealing with and accepting a condition. I feel that I have now left it behind and my personality has started to come forward more.
There are stages in life that could affect the quality of sleep for women, for example pregnancy, here is a summary of these:
20’s and 30’s: Check your thyroid. My neurologist checked my thyroid as part of the Narcolepsy diagnosis. New moms can get postpartum thyroiditis, which 5 to 10 percent of women develop in the year following delivery. If you’re too jumpy to sleep or have extreme fatigue postpartum, see your doctor.
20’s and 30’s: Depression – feeling blue can cause sleep difficulties some antidepressants may also have sleep related side effects. Ask your doctor about your antidepressants!
40’s: Check when/how often you go to the toilet at night! It could be a urinary tract infection because .”Decreasing estrogen levels in the mid-40s leads to a thinning of the lining of the vagina and bladder, which makes perimenopausal women more prone to infection,” says Dr. Corio, author of The Change Before The Change. Talk to your doc if you notice a change in your bathroom habits.
40’s: Deep sleep decreases in your late 40’s making night-time awakenings more frequent. Improve your restorative sleep (called delta or slow-wave sleep) by exercise more. Aim for 30 minutes of moderate aerobic activity on most days, suggests Wilfred R. Pigeon, PhD, director of the Sleep and Neurophysiology Research Lab at the University of Rochester Medical Center.
Your 50s+: Check the prescription drugs you may be taking for high blood pressure and cholesterol. They could affect your sleep. Check with your GP and if it is a potential problem ask if it might improve your sleep to take the pills in the morning instead of the evening.
Your 50s+: Check the prescription drugs: statins for cholesterol-control can deplete your body’s muscles of co-enzyme Q10, a natural protein required for normal functioning of muscle cells; the resulting muscle aches might make falling asleep a challenge. Ask your GP/Neurologist/Sleep Doctor if you might benefit from taking a co-Q10 supplement.
Your 50s+: Snoring and Sleep Apnea (OSA). There is a greater possibility to develop sleep apnea after the menopause when progesterone levels drop and it’s common to gain some weight.
38 Degrees | Tell your MP to protect the NHS
All of who live in the UK and care about the NHS follow the link below and tell your MP that you are NOT happy about the proposed changes to our National Health Service. All you need to do is watch Michael Moore’s Sicko to understand how lucky we are to have access to such amazing health care!
Sodium Oxybate Update
I went to see my specialist mid-February and he told me that my application for Sodium Oxybate had been declined. My local Primary Care Trust gave 2 reasons: 1. The most recent health update/check was from August and they wanted a newer one. 2. Sodium Oxybate contains high levels of salt which they thought would be bad for my health.
Apparently, it is common to be turned down at the first instance so now my specialist has resubmitted my application with an up to date screening and a reassurance that the levels of salt in Sodium Oxybate would not cause me any danger.
I will keep you updated with any further progress. I can’t believe it has now taken minimum 1, 5 years almost 2 years for the PCT to respond. 2 years ago I thought I was going to move so there was no point applying, and then when I found out that I had to stay my neurologist submitted the application. I called them up after 5 months to check if they had received it, and when they prescribing committee had scheduled a time for it to be considered in a meeting. The assistant who logs and deals with all applications said she didn’t remember my name but she would have a look just in case. She did and it had never arrived so last year in October when I had my appointment with my neurologist I said that it never had been received by my PCT. It had been sent to the wrong PCT by mistake. Oops! Eventually, he submitted an application to the right instance, it got rejected and now he has resubmitted it on my behalf.
My pharmacy drives me to cataplexy again!
The last week and a half has been a real challenge for me. Firstly, my landlady decides to fix the mould problem in my flat which involves rebuilding part of a wall and repainting it. I have been informed that whole process will approximately take a week, minimum. In order to facilitate the renovation I decided to move out and stay with a friend because I cannot cope with living and sleeping in the same area as 3-4 builders for X amount of time. If I needed to nap, I would have to sleep in my bed and they would have to work around me. I have already tried that twice and it completely stressed me out.
During this time I also managed to mismanage my prescriptions so they got completely out of sync with each other which in turn lead to 1 day without clomipramine. My pharmacy always have to especially order it because apparently it is a quite old medication and my mg is unusual. It always adds another day to the process. All in all with synced medication it takes me 5 days to renew my meds. It is totally crazy but I pray it will stop soon so I can regulate the arrangement. This time when I went into pick up the clomipramine I was shaky and stressed out – did I mention I had gastric flu too? well I was on the last couple of days of the lurgy (not recommended:)). I asked the attendant if he knew of any mild painkillers for my stomach as it was still hurting. He looked surprised! He didn’t know what gastric flu was!
My mind went racing 100km/hour in a second and I became flabbergasted. How could he not know what it was! There and then I drop. It takes 2 seconds and I find myself clinging on to the counter for dear life. The upper half my body is straight on top of the glass counter and the electrical currents are surging around and around in my brain. I try to catch my breath, try to calm myself down. At that moment they ask if they should call and ambulance. And then they ask again and again. After a couple of minutes I manage to scream in a falsetto voice I have never come across before: NO!
How many times I have I not been in this pharmacy and had an attack? They already know that this happens and they have seen it numerous times before….but always the same reaction! Fortunately, the dispensing pharmacist says: Just let her be for a moment. As poor customer service is a trigger for me, I am running out of patience with this pharmacy. Next time I will try another one and explain in advance that this might happen when I am particularly vulnerable.
I am the only normal person in this situation (lol), obviously, and the assistants are just unprofessional with the memory of a teflon pan. Perhaps I should tattoo my forehead next week? Cataplexy! Be on your best behaviour!
I crack myself up! Have great weekend! and for goodness sake be safe and don’t get any ridiculous tattoos!
New Beginnings – Daily Management of Narcolepsy
Perovskia atriplicifolia
Last September, I started a course in Horticulture, which runs over a period of a year. 1 day, a week from 9-4pm.
I was/am trying to find a job that will suit me in the future and I have also enjoyed gardening and plants. I like the practical element of gardening as you use your body and mind whilst working. I also like the fact that there is always the option to work outside, in general, it has the potential to be a very varied job. Obviously, there are repetitive element or job roles too but you find them in every job.
I thought, studying 1 day a week would be gentle beginning of a path back to work. Although, I have made several adjustments to my lifestyle, increased my medication, I still cannot keep awake during the day. I know that most narcoleptics plan in naps but I would really like to be able to stay awake. When I loose attention and zone out – it’s during those important moments during classes when we are taught/shown passively and then I miraculously wake up during a practical or if we are going out botanising At the moment, I fall asleep, about 5 times during the day. It’s only for short periods so I should be able to eliminate them. I know now that If got a regular job 9-4pm, I would not be able to keep it. I have to improve my health even further. Or, I could work 6 hour shifts? Or perhaps increase the medication further? I have learnt over the past 6 months that the timing of my medication intake is crucial. I have an appointment with my specialist in February so I will discuss these issues with him.
Cameron’s NHS reform ‘Arrogant’!
On my way to therapy today I picked up the Metro and read on page nine that Cameron will be pushing through the health reforms proposed y the government which will include scrapping all 151 health care trusts and ten strategic health authorities, with an initial loss of 24,500 jobs. This move will according to Cameron bring “a patient centred NHS a step closer to reality. Instead of trusts, GP’s will be given 80% of the 100billion pound annual NHS budget to commission services. The article quotes Ed Milliband (Labour Leader) as saying “Why are you so arrogant to think you are right and all of the people who say you are wrong are wrong?” Apparently Cameron replied that the NHS would be “the best in Europe”. What an answer?
It sounds to be like Cameron is trying to sell-out the NHS through the back door, bringing it one step closer to privatisation. How well did that work for the “once” national railway system, the tube, the bus service and all of the other buildings the conservatives sold off only to be profiteering themselves in the late 80’s? The NHS has problems here and there but from my point of view being originally from Sweden and suffering from a rare disorder. The quality of care I have received in the UK beats Sweden’s supposed brilliant health service by miles. It wouldn’t surprise me if the NHS is already the best in Europe in providing care as most countries in europe have financially suffered in the 90’s and 10’s. I also want to add the experience of an acquaintance of mine in Norway – who appears to be such a prosperous country it took him 8 years and time in court before the equivalent of the NHS gave him the support he was entitled to according to law.
Do we really want the NHS to slip down to such standards? I would really like to know what the benefits would be to scrap the primary care trusts? Will the decision-making process be farmed out to private companies, such as Athos Medical Services who are really a disgrace to the medical profession. It will save money in the long run but users will pay on quality of services. There must be better ways to save money than on national health which in the long run will cost the country more in increased sick days, unemployment, social services etc. You can’t take preventative service without having to pay for it elsewhere further down the road. It sounds as if at the core of this decision is some serious lobbying by multinational companies to cash in on UK’s financially vulnerable state and the conservatives have always been in bed with privatisation.
Read More on 38 degrees website
Lots of 38 Degrees members are worried about the government’s plans for the NHS.
What do you think we should do? Go to 38 degrees and get your voice heard
38 Degrees is the angle at which an avalanche happens. In the UK, 38 Degrees will enable people to act together, to create an avalanche for change.
Queen of Sleep 