Three Years ago today.. June 2020

6th June 2017 Vs 6th June 2020

I have a few topics to discuss on this article. Some great like the 3 year anniversary and some not so great.

Website

Let’s start with the easy one. The website http://www.hlai.blog commenced in May 2017 (some of the articles were backdate). I wanted to show people the real side of advanced Lymphoma treatment and in reality, create awareness. In the sites first few months we had a couple of hundred visitors’ and it grew. By the end of 2017 we had 4,448 visitors Checking the stats today we have 27,170 visitors. The big part for me is that we have never actually promoted the site, apart from Facebook & LinkedIn which are personal social media sites. We have no sponsorship at all and the funds generated to help run the site are through contributions to the GoFundMe which pays for about a month with the remainder coming from me. The site has really produced its own audience Worldwide

I just love the fact that this site has done so well over the space of 3 years. And it continues to grow every day.

But lets get up to date as I have not really updated my medical side for month. The last number of articles have been about Anita who has made a fantastic recovery from her battle with VIN Cancer. She can drive again from tomorrow.

CoronaVirus

That word that was feared fought and now appears to be fatigued – actually there are more than 3 F’s I could name. I had been isolated initially 25th of March but I had decided as I was shown little symptoms to continue working. That change dramatically on the 9th of April when I was instructed by my GP to medically isolate immediately, at that point I had all the symptoms with the exception of a fever. Two antibiotics and a course of steroids over 5 weeks and finally on the 7th of May I was over the first day of no symptoms. But the GP instructed that I was not to break isolation, due to my “chronic medical history” she would not consider allowing me back to work in the office as I fell into the high risk category. 8 weeks working from home and no clear view of when this will end. I will return to the isolation issue a little later in this article

I’m working from home for my safety and the safety of others. But the 26th of May was a bad day. At about 3:30 in the afternoon I got hit by a hemiplegic migraine- these are the extreme end of migraines . The last one or the first one was in late October 2019. We know the trigger but I’d prefer not to publish that. I really should have seen it coming but I didn’t. This one didn’t hit as hard as the one in October but I had managed to get sitting as it hit. It lasted about 20 minutes. I couldn’t speak, I couldn’t move, my right arm and leg went dead & painful and then the headache started- unreal to say the least. I went to bed early but when I woke up on Wednesday the vision out of my right eye was badly clouded. I felt I had a hangover from hell, without the pleasure of having a drink. So I called my GP. Her first reaction was to get me to detail exactly what happened. She concluded a few things for me

 Hemiplegic Migraine

The doctor confirmed that I had suffered a full hemiplegic attack which most likely caused an eye stroke but the stroke needed to be confirmed by a specialist.

Preventing Hemiplegic Migraines means stopping the trigger or taking extreme levels of aspirin, nurofen and an anti-seizure drug all together they would total 7,500mg a day plus doubling my anti-depressants. There may be alternatives that a neurologist will need to discuss but that is on hold for a month or so

But as this was the first attacks since Oct 2019 and we know the trigger she decided to place me on a drug called ParaMax but you only take these when the SHM strikes (SHM Sporadic hemiplegic migraine affects people who don’t have any family history of the condition. Anyway the trigger is known). There are 6 tablets of 3,000mg taken in pairs over 8 hours.

I have been as I said above signed off travelling to work (but can work from home) From a driving point of view this is actually a good thing, I’d be concerned about vision and any further attacks.

Eye Stroke

The Hemiplegic Migraine May have caused an Eye Stroke

During an eye stroke, the retina’s veins or arteries stop working as they should. They become blocked by a clot or a narrowing of the blood vessel. Much like a cerebral stroke, where blood to the brain is reduced or cut off, the retinas in the eye lose their blood supply. Blood and fluid may spill out into the retina and cause swelling. Both the retinas and a person’s eyesight can rapidly become damaged.

Meeting with Ophthalmologist 5th June 2020

Where my Ophthalmologist has been trying to establish what was causing the eye stokes which generally were blamed on causing headaches the reality is that I was actually getting bad migraine attacks that were causing eye strokes. Difficult one for them to really prove as both conditions are quite rare. But reality is that the historic evidence points towards this. My eye had not given any trouble from 2015 till May 2019 – then I had a couple of bad eye strokes over 3 months – the main description was that my right eye got blurred along with a bad headache. In Oct when the hemiplegic first hit the team started looking at why I was getting both at the same time. But this current one proved it to the team that the eye strokes were coming from the hemiplegic attacks.

So the Ophthalmologist is now looking for ways to prevent the Hemiplegic Migraine attacks and by doing so reduce the chances of eye strokes. Removing the trigger is not as easy as one would consider and again, I can’t go too deep into this. But the initial plan is to increase the anti-depressants and use a light form of medication to prevent attacks until we can settle the trigger.

The big problems facing the team is that if I get a higher-level eye stroke then it could result in permanent blindness to my right eye.

The meeting with the eye specialist was in the Bon Secours- I had been warned that the possibility of having a procedure to my right eye was very possible (that means multiple injections into the eye) But good news as the specialist decided not to do it, he wants me back in 2 weeks. If the eye is no better, he will inject it (oh no, please not again). Need to wait and see, there are no prescriptions to prevent this and none to improve it, it’s either going to get better or in two weeks he will do the procedure/operation. He has prescribed a Valium to take on the morning of the procedure. This operation is a simple but precise procedure but it’s also a last resort. If anything goes wrong it can lead to blood clots and permanent blindness. So the hope is that it clears itself naturally over the next two weeks. But ultimately the focus is on preventing the hemiplegic attacks

So little is known about Hemiplegic Migraines but the way the medical professionals look at these is that they are between migraines and epileptic fits. Quick look at these 3 items

Migraine is a primary headache disorder characterized by recurrent headaches that are moderate to severe. Typically, the headaches affect one half of the head, are pulsating in nature, and last from a few hours to 3 days. Associated symptoms may include nausea, vomiting, and sensitivity to light, sound, or smell

Hemiplegic migraine is a rare form of migraine where people experience weakness on one side of their body (hemiplegia) in addition to the migraine headache attack. The weakness is a form of migraine aura and occurs with other forms of typical migraine aura like changes in vision, speech or sensation

Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness

The way the specialist has explained this is that we can suffer from electrical brain storms. The electrical storm can trigger migraines or motor neuron mobility loss such as paralysis (hemiplegic) or epileptic.

During the electric storm in my brain “The Hemiplegic” type – part of the storm can hit the sensitive nerves behind the eye and the result can be mixed. This is exactly what happened to me, that storm disrupted one of the veins in the back of my eye making it leak. Just a tiny drop of blood like that can damage your vision, my right eye was weak from the Lymphoma attack in 2014 and storms tend to damage weakened areas faster and easier.     

Now I need to discuss everything with my GP. And an expensive visit as soon as possible to the Neurologist.

As I was leaving the hospital I bumped into my Oncologist.. We get on well and always nice to meet the gentleman. He asked how I was and briefly discussed my visit. He asked if I was still isolating and I said I was. He said “Good cause if you were not I would be instructing you to return to isolation” He explained that Oncologist worldwide have been told to insure that anyone that underwent a stem cell transplant within the past 3 years are classed as extremely high risk from our friend COVID 19 and anyone that has had a stem cell transplant within 5 year is high risk AND they must isolate. There is no getting away from this one..  I now have my GP, Ophthalmologist and Oncologist instructing medical isolation, but the GP and Oncologist are happy enough for me to work from home.

COVID 19

Just to conclude on the GP discussion last week (I did mention earlier that she had gone through a lot with me). The symptoms and the poor health in April may mean that I had a mild version of Coronavirus but at this time there are no test to show who has or has not had this virus. With a compromised immune system I should consider the if I did get a mild version then I should consider myself especially lucky. But she made it absolutely clear that I should not consider myself immune from COVID 19 as medically professionals don’t know enough about this virus, added to that I may have just had a bad flu. Ultimately I am still in the high risk group and as a stem cell transplant survivor I’m in an even greater risk group.

On a final note because I did say at the start I was not finished talking about The CoronaVirus and the Pandemic caused by COVID 19. I got stuck in traffic on the way to the hospital yesterday, during a Pandemic. The roads were very busy. It actually felt like a normal day like any other day before the Pandemic. I have been doing everything possible to do exactly what not only my medical team tell me but the Irish government tell us all to do, STAY AT HOME, till your told not to. But for some reason a lot of people think its over.  1,670 people have lost their lives to this Virus in Ireland, have some respect for them and the thousands still fighting this virus. The message from the government yesterday needs clarification particularly about dates.

I meant to add this photo into this article , only just realised I forgot

The file on the desk is mine…. the page sticking out is the report from the eye scan. It looks like an Encyclopaedia and it’s only 6 years old…