Posts Tagged ‘epilepsy’

For four years now I have been on Keppra and Lamictal both slowly increased to… Keppra 1250mg morning and evening, Lamictal 250 morning and evening. My belief is that the side effects of these have contributed to the end of my marriage, many reasons were given for the failure without telling I was changing (shame as married couples should talk), so here are some of the reasons…

  • Agitation or restless
  • Problems sleeping
  • Panic attacks
  • Aggression, anger or violence
  • Depression
  • Anxiety
  • Personality change
  • suicidal thoughts

Looking back now I see I had experienced all of them which was hurting her however, it should have been talked about so I could get help, change tablets, seek counselling or something.

So some advice for all of you out there, if you think you may be experiencing these side effects speak to your partner and see if they have noticed a change in you before it’s too late like my failure to notice, speak to your doctor or specialist nurse. After speaking to numerous people about this drug they say it’s evil and shouldn’t be used and I now agree. No doubt surgery has some blame too.

I would point out that I never physically hurt anyone but I guess emotions are stronger than physical pain.

 

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Still here kicking around and plodding on with life, nothing really to report other than I have my scan results on the 20th. Finally my mind will be at rest since 15th Dec, thats right, I had my scan on 15th Dec and finally get my results next week!! Unfortunately this is the state the NHS has got in to.

Forgot to post happy valentines and a post a saw today reminded me, it said…

” To my wife, I love as much today as I did yesterday but it is a lot cheaper lol”

So I hope everyone who was able had a happy valentines day, to all those who have lost loved ones or currently battling this horrible fight, I wish you the best for the future.

All the best,

Derran

There are different types of Astrocytoma but I have not exactly been told what mine is.

What is it?

Astrocytomas are tumours that arise from astrocytes, astrocytes are star shaped cells that make up the “glue-like” or supportive tissue of the brain and spinal cord. While they are described as star shaped that is a basic description, if you look at images of them they basically have a central point followed by star shaped legs and then roots. It appears as though the tumours sit in the center of the astrocyte but I’m sure your consultant will be able to tell you more.

So, what types are there?

Below are descriptions of the various grades of these tumors:

  • Pilocytic Astrocytoma (also called Juvenile Pilocytic Astrocytoma)—These are grade I astrocytomas typically stay in the area where they started and do not spread. They are considered the “most benign” (noncancerous) of all the astrocytomas. Two other, less well known grade I astrocytomas are cerebellar astrocytoma and desmoplastic infantile astrocytoma. Pilocytic Astrocytomas generally form sacs of fluid (cysts), or may be enclosed within a cyst. Although they are usually slow-growing, these tumours can become very large.
  • Diffuse Astrocytoma (also called Low-Grade or Astrocytoma Grade II) Types: Fibrillary, Gemistocytic, Protoplasmic Astrocytoma—These grade II astrocytomas tend to invade surrounding tissue and grow at a relatively slow pace. Diffuse Astrocytomas tend to contain microcysts and mucous-like fluid. They are grouped by the appearance and behavior of the cells for which they are named.
  • Anaplastic Astrocytoma—An anaplastic astrocytoma is a grade III tumour. These rare tumours require more aggressive treatment than benign pilocytic astrocytoma. Anaplastic Astrocytomas tend to have tentacle-like projections that grow into surrounding tissue, making them difficult to completely remove during surgery.
  • Astrocytoma Grade IV (also called Glioblastoma, previously named “Glioblastoma Multiforme,” “Grade IV Glioblastoma,” and “GBM”)— There are two types of astrocytoma grade IV—primary, or de novo, and secondary. Primary tumours are very aggressive and the most common form of astrocytoma grade IV. The secondary tumours are those which originate as a lower-grade tumour and evolve into a grade IV tumour. Astrocytoma Grade IV (glioblastoma) may contain cystic material, calcium deposits, blood vessels, and/or a mixed grade of cells.
  • Subependymal Giant Cell Astrocytoma—Subependymal giant cell astrocytomas are ventricular tumours associated with tuberous sclerosis.

Location 

Astrocytomas can appear in various parts of the brain and nervous system, including the cerebellum, the cerebrum, the central areas of the brain, the brainstem, and the spinal cord.

Symptoms

Headaches, seizures, memory loss, and changes in behavior are the most common early symptoms of astrocytoma. Other symptoms may occur depending on the size and location of the tumour. With my Astromcytoma being grade 2 I guess this is why I had plenty of headaches, mine was only found after having a major seizure that came on all of a sudden with no other seizures previously. My memory has always been bad so I can’t comment on that but maybe I’ve had it all my life as I’ve never had brain scans.

Cause

Like many tumour types, the exact cause of astrocytoma is not known.

Treatment

Treatment options depend on the type, size, and location of the tumour, if and how far it has spread, previous treatment received, and the patient’s overall health. Treatment methods for the various types of astrocytomas are briefly explained below.

  • Pilocytic Astrocytoma: These tumours are often removed by surgery alone. In adults and older children, radiation may follow surgery if the tumour cannot be completely removed. Or, the patient may be watched carefully for signs that the tumour has returned.
  • Diffuse Astrocytoma: If the tumour is accessible and can be completely removed, the only additional care required is follow-up scans. In adults and older children, radiation may be suggested in addition to surgery. Radiation may also be used to treat an unremovable low-grade astrocytoma. The role of chemotherapy in treating these tumours is being investigated. I my consultations I was told that chemotherapy and radiotherapy are unlikely to work.
  • Anaplastic Astrocytoma: The first step in treatment of anaplastic astrocytoma is surgery. Radiation is then used to treat the remaining tumour. Chemotherapy may be recommended immediately after radiation or when and if the tumour recurs.
  • Astrocytoma Grade IV: The first treatment step is surgery to remove as much tumor as possible. Surgery is almost always followed by radiation. Chemotherapy is often given at the same time as radiation and may be used to delay radiation in young children.

Tumour re-growth can be treated with additional surgery, another form of radiation, a different chemotherapy drug (or combination of drugs), or any number of new approaches to treatment currently in development.

With my Astrocytoma it is a wait and watch with MRI scans, 99% has been removed (debulking they call it) but it has not been followed up with radiotherapy or chemotherapy. Like all tumours whether they are benign or cancerous, you never know if it’s “cured” but from my understanding in any of the cases you are just buying time, we all have to die I guess but some of us sooner than we’d like. If you are physically and mentally fit like me, we just carry on in the rat race with most of us doing jobs we don’t like to make our bosses happy and richer than us. Personally I would like to pack my job in and spend what time I have with my family but thats not financially viable.

I have been told I could have 5, 10, 15, or even 20 years left on this planet and I would like to hear stories of people living longer than 20 years after diagnosis. Those of you with grade 3 or 4 maybe reading this and thinking how lucky I am, I have told I am lucky, Really! none of us are lucky but some have more time than others.

It is now 26th November 2017 and I have an MRI scan on the 15th december while I won’t be updating this post, the result will be found blogs menu or in treatment section if I have bad news.

All of you who read this, I wish you all the best.

Well, just a quick update. Not posted for a while as you might see but I am still here and well. My Lamotrigine has been increased from 150mg twice a day to 175 twice a day to see if they will help my seizures. Give that a month and if no change to increase that to 200mg twice a day, failing that, they will be reduced and another tablet introduced.

The only news I got at present is that on Sunday 9th April 2017 I had two seizures, both were light but one at 4pm and one at 9pm. Seemed to be no link but may have missed a dose of tablets as I get confused some days or busy and forget. This shouldn’t be a problem because the oncology specialist nurse say that the change won’t affect you that quick. It would be interesting to know how many have this issue.

Luckily I get free tablets but that must be costing the NHS a fortune!

I’m on yearly MRI scans now so nothing to report on that front, hope you all are doing well and bye for now.

 

Friday 18th Sept 2015, had a consultation regarding medication. Nothing exciting or too interesting.  Still having seizures on average of every two weeks is too much apparently, the meds are obviously not working as desired regardless.  1000mg a day is a small dose so my Keppra has now been increased to 750mg in evening and 500mg in the morning for two weeks and then 750mg both morning and evening to see if that settles them. This has to be done slowly because it takes about a week for any changes to settle in your system.  Either way I am starting to rattle as I walk now 😉

So the myth of missing a dose causes seizures can be settled now 🙂

Wednesday 25th November 2015, Keppra incresed last month to 750mg morning and 500 evening and then 2 weeks later 750mg both morning and evening. Seems to be no change and getting minor seizures around every 10 days. Will be seeing the nurse at the local GP, don’t know why as I am under consultants for reviews.

On the 21/8/16 my Keppra was increased to 2,000mg a day and as this hadn’t helped much it was increased to 2500mg per day. I’m getting no side effects but feel this had no real effect on me.

It was decided that I should increase my Lamotrigine to 450mg a day and on 02/07/17 this was completed (as you know it has to be increased slowly). This has had a slight effect of reducing the length of the seizure and a minor changed in strength of the seizure. It was discussed that I may have to be put on another tablet.