Topamxi

The problem of Topamax/Topiramate side effects

Topamax has helped many people, the problem is that it is a powerful drug and can have side effects.  Some people have very little trouble with it, others find the cure to be worse than the condition.  So it really comes down to how Topiramate and your body get along, and how disabling and frequent your migraine attacks are.  

Topamax most common side effects

Topamax will slow you down, or make you feel like you’re in a fog.  This includes slower reflexes, trouble thinking or concentrating, trouble thinking of the right word (and other speech problems), tiredness, poor coordination, and dizziness.

 

Topiramate may also cause tingling in your hands or feet, shakiness, depression, nausea, memory problems, and visual problems (such as double vision).  It has also been known to bring on respiratory infections.

My son aged 11 was on this for 4 months as pediatrician did not know what else to prescribe, then was horrified when we saw her again that he was taking it!

If she had bothered to take his heart rate/blood pressure sitting/lying and standing she would have not prescribed this but referred him to a cardiologist.

 

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Listeria monocytogenes

https://www.independent.co.uk/news/business/news/aldi-lidl-iceland-sainsburys-tesco-waitrose-recall-frozen-vegetables-listeria-outbreak-a8434571.html

My son complains if I feed him anything a day past the best before date.

He also bans me from adding things to food I cook, such as tons of salt, which he needs for this condition PoTS. I also puree vegetables and add the puree to a bolognese. Hoping to achieve his 5 a day.

He also has Gastroparesis so his stomach is not functioning as it should.

He takes a steroid, Fludrocortisone which weakens the immune system and has been on this medication for 4 years now.

So imagine my horror today when an alert pops up on a Facebook Group I belong to.

9 dead, linked to frozen veg!

I scroll through the list, go to the freezer, check the BBE date.

I fed him some with his sausages and mash yesterday with sweetcorn, which has a BBE date of November 19 from Waitrose, 1kg.

His hands have been covered in red spots since yesterday, it could be heat related or because following his visual disturbances last week he has only just started taking all his meds again or down to a packet of sweetcorn. Did it start before or after the consumption of the sweetcorn? He cannot remember but his hands have come up like this in the past.

 

 

 

 

 

 

Anxious, fed up and low in mood

The Start of the CFS treatment November 2015

He told us that his current circumstance has made him quite fed up and low in mood. He also was able to tell me that being in school makes him feel very anxious. He has also withdrawn from spending time with his friends (other than online) and we felt that the low mood and anxiety should be part of our treatment package alongside the physiotherapy we are planning to offer.

I wonder if the CBT Therapist he is seeing at a new CFS Clinic, 2 and half years later will obtain these words from him.

The Educational Psychologist did not achieve this in her assessment a year ago, so no provision for his mental state in his EHCP.

Family History

This is something you are often asked, especially at the start of the journey for my son, it started with migraines and the disbelief by health professions that no one else in the family suffers from migraines.

The only family member who has anything similar to my son is my mother’s cousin Muriel who is 76.

This is her history

Had it all her life, earliest she can recall is 4 years old, she fainted and brought up congealed blood, which upset her, her Father took her to the Doctors. Thinks she was born with these “fainting turns” but no one living to ask about what happened before she was 4. This was 2 years before the birth of the NHS

Approx 20 years ago, her husband went into a GP appointment with her, he explained the fainting fits she had, and the fact it worried him as he could not get her round. This Doctor responded with, “That’s not normal, and not a faint, tilt table test for you!”

He thought she might have had epilepsy, but it’s not that. He prescribed salt tablets for her and she has had them ever since, and whenever she saw him his words were “you are taking those salt tablets aren’t you!” Unfortunately, she does not see him now as he took time off to look after his wife with cancer. 

This scan led her to a diagnosis, she was informed that the nerve in her neck was not taking blood from her heart to the brain. She was given a leaflet on Neurocardiogenic Syncope.

Her list of conditions in 2004:-

Duane’s Syndrome

Neurocardiogenic Syncope

Hyperthyroidism

Poor Balance

Longstanding constipation.

The only other family member is my Father-in-Law who died before my son was born awaiting a heart transplant.

Listed on his death certificate is

The paediatric cardiologist who diagnosed my son with PoTS was not concerned by the list the on the death certificate.

 

 

 

 

Illusory Palinopsia?

My local carers organisation organises courses for carers, most courses seem to be at their main office over 45 minutes drive away or by public transport between an hour and 21 minutes and hour and 51 minutes, with a combination of 1 train and 2 buses or 2 trains and 1 bus.

Those local I try to attend, such as the 1st Aid course led by The British Red Cross, a two-hour course of the basic need to know. I even have a book and certificate.

Another course was on Handling Medicines in Social Care Setting, although after 30 minutes the pharmacist had abandoned her powerpoint and we were learning what we needed to know, not what she had assumed we need to know!

By the end of the session, I have learned that the real expert in the medication my son takes is not the GP, cardiologist, neurologist, paediatrician, paediatric consultant but a pharmacist.

Thursday

When my son is seeing shadows of his moving arm at 1.50am and wakes you up because he is worried, you film his ramblings, arm waving, 3D images, windows coming towards you – although on further questioning the Windows he was talking about are on the computer.

Returning to your slumber as he has settled down to watch TV then starts texting you because he has googled his symptoms and starts sending me links with a request for a GP appointment.

On waking at 12.40pm he refuses to take any meds, concerned you ring the Arrhythmia Nurse,  he now has a migraine, clicking in his ears and less strange vision. Maybe I should have taken him to A&E last night, the thought had crossed my mind at the time.

The nurse advises to stop all meds today, he has already decided this and to have this eyes checked. Then add one medication a day to see if any more strange vision and ring back next week.

Having his eyes checked tomorrow and stopping all meds today with a plan to reintroduce them one a day to see if any are causing the visual disturbances, clicking in ears and chronic migraine.

Canceled his online lesson as in no state to concentrate for 90 minutes.

At 10pm went to bed as in his words, feeling tired but checking his Fitbit in the morning he did not fall asleep until 2am.

Friday

It occurs to me that I can to visit the local chemist, a 5-minute walk away and to ask the pharmacist which should be reintroduced first.

She checked his list of medication, Fludrocortisone is a steroid he cannot just stop that.

Good point I am pleased I went, she promises to ring after studying the side effects of all of his medication. Which she does and as he has not just started taking any of them or recently increased any, she cannot explain the visual disturbances.

An eye test follows with our local optician Tom at Specsavers, he checks the eyes and Peripheral vision on a ‘1970’s game’. Everything is fine.

  • Automated Perimetry: During this exam, you sit in front of a dome or cone and stare at an object in the middle. You press a button when you see small flashes of light in your peripheral vision.

Saturday

Just taking Fludrocortisone and Vitamin D.

Sunday

His whole body aches, his muscles are ‘killing’, can he take something?

Yes, the pros and cons of Amitrypline are considered. He was put on it in 2013 by GOSH, the CFS clinic wanted to increase the dosage in 2015 but after all the weight he piled on when GOSH increased it to 50mg a day, we declined the offer, keeping to the ‘maintenance’ dose of 10mg.

 

 

 

 

 

 

 

The Nosebleed

or otherwise could be entitled The Dream

Today’s interesting comment, I had a dream.

I dreamt that I had a nose bleed, I have had one before (not significant enough for me to remember) and it bled all day.

I interjected with I would have taken you to hospital.

Then it started spurting out and continues like that for the next day and the next day.

This is a teenager whose blood is always pooling downwards.

It’s a Dogs Life

Where would I be without Facebook?

When my son’s condition started 6 years ago I did not belong to any Facebook group for this condition and not until 2014 when he was finally correctly diagnosed did I even search for any on PoTS. I searched because the paediatric cardiologist told me to, ‘Your son has Postural Tachycardia Syndrome, but do not worry about that it is abbreviated to PoTS’, so basically go home and research it!

Initially, I joined an American group, which was frightening as the USA has huge insurance issues, are really into saline dips regularly. After a year a British parent group was set up and this is my go-to group, thank you to all those parents who have ‘listened’ and advised over the past few years.

In this very hot weather with an overheating son, struggling to maintain his body temperature I asked the question,  what others did, the answer came back with a visit to a pet store.

So I trundled off to Pets at Home, explained what I was looking for and why, so as non-dog owners we are proud owners of a large dog cooling mat, which lives in our fridge except at nights!

March 2017 and June 2018

March 2017

Dear MP,

Thank you for your email. Post 16 is a minefield, nothing is happening unless I personally carry on ring every school with a 6th form in a 10 mile radius. I expect you read the Youth Manager from the council’s email to me as she copied you in. It would appear to my reading of her email that if you do not have an EHCP then you are referred to the organisation commissioned by the council (provides four core services that enable young people to make a successful transition to adulthood; these include impartial careers information, advice and guidance, intensive support and mentoring and youth work) and they just advise but if your child achieves that magical gold dusted document then the council support them with SEN Personal Advisers from Youth Support, making it a two tiered system for post 16 support.

So having appealed to Tribunal over refusal to assess for an EHCP and the council changing their mind, we play a waiting game. How long it will take them to collect all the info required, make an appointment for ed psych and maybe medical assessment? You are more than welcome to add your two pennies worth into the equation.

Who wants a child with a chronic condition which varies daily, hourly and will affect the provider’s exam results and their position in league tables?

The good news is that son has been accepted by  KC Hospital for PoTS and numerous tests are lined up the first being a lung functioning test. It does involve a 2 hour journey each way to the hospital as there are so few PoTS specialist around the UK, something the health select committee could maybe look into. The National Hospital turned him down just before Christmas as they are no longer accepting 16-year-olds, it was just a brief trial last year and he would have to wait for his 18th birthday to be referred again. The great 16 to 18 chasm in the NHS.

June 2018

The organisation commissioned by the council is coming tomorrow at the request of the school to make suggestions for my son’s education options but my son has an EHCP.

So why is the SEN Personal Advisers from Youth Support, not coming?

Have they even been invited?

ME/CFS Discussion in Parliament June 18

  • I just want to pick up on the hon. Lady’s point about ME being classified as a psychological condition. Does she agree that that is a little curious, given that the World Health Organisation states in its “International Classification of Diseases” that ME is a neurological condition? My understanding is that the United Kingdom is legally obliged to follow that classification.

Does the right hon. Gentleman share my concern that, as I understand it, there are roughly two and a half times more people with ME than with multiple sclerosis, yet there is 20 times more research on multiple sclerosis than on ME and, of what little ME research there has been, the vast majority has been through psychological and behavioural studies rather than the biomedical approach?

So some interesting snippets from other MP’s

the average research spend per person living with ME is less than £1 a year and that much of that money is provided by charities rather than Government.

 I will conclude by mentioning the documentary “Unrest”, a screening of which I attended. Jennifer Brea, a 28-year-old ME sufferer, documented her condition with a camera when doctors told her that her illness was all in her head. Using Skype, she connected with others around the globe suffering with ME, and documented their plight. It is a powerful and moving documentary about the realities of life for many people with severe ME, and I would encourage anyone who is looking to gain a better understanding of the illness to watch it.

the stigma of laziness or of something “in the head”. We all know that the sort of people afflicted by ME are certainly not lazy. As to its being in the head, there may be some psychological causes of ME but it is none the less an illness, and to treat it as if it were not is to reinforce the stigma that has been so damaging with respect to mental health.

It is also why understanding how the condition changes day to day is important—as is the way the Government prepare and support individuals. The DWP assessments are a great example. The assessment system at the moment is built around a system that does not adequately recognise the day-to-day lived experiences of those with ME.

I mean a child who simply cannot get out of bed or off the sofa or couch, and to school. What happens to such a child? I will tell the House—often they are referred to social services. Child protection referrals are often made because a child misses school. Imagine the impact on that child, family and school. I have known you long enough, Mr Gapes, to know that you have the milk of human kindness flowing through your veins. Can you imagine what it must be like for a primary school-aged child who is suffering from something terrible that they cannot even put into words to be penalised for it—interrogated and asked to prove that they are ill when they can hardly bring themselves even to speak or raise the energy to make their case? How cruel.

“ESA and PIP assessments are designed in a way that discriminates against people with ME and other fluctuating and unseen conditions. This causes untold distress and harm to people with ME, who already feel very vulnerable and unheard.”

ME is a neurological disease, or a disease of the central nervous system, but that does not begin to explain how devastating it can be to have to live with it—or die from it

https://www.meaction.net/tag/millionsmissing/

 

My 17-year-old son starts CBT therapy on Monday at the local CFS Clinic!