Tag Archives: Dysautonomia POTS

It’s not the anger, it’s the guilt.

DownloadSomeone I was in a short email correspondence with said that if it should happen that he became seriously ill, he would be very angry. I have to say, I doubt it. I don’t claim to know the inner emotional workings of the man who wrote this, but I do know how chronic illness works, and believe me, anger is a very tiring emotion and therefore not one that is tenable, for long periods of time. I’m not saying I’ve never felt angry or seen anger expressed by fellow Chronics – I have. Those of us who have rubbish or even abusive meetings with doctors will express justifiable anger; and sadly that happens far too often. But that’s just for those times.

The feeling or sense that bugs me much more of the time is guilt. I don’t know how ubiquitous this feeling is among us chronics, but it’s fairly constant with me, and as I think I’m pretty common, I am guessing there are others out there who struggle with it. I am not going to go into all the reasons I feel guilty, nor will I explain those awful moments when it comes to a head and I become a gibbering wreck. You don’t need to read about that.

This is not Catholic guilt. Wish it was – ‘cuz Confession cures that :lol:

No, this guilt is about all the things I used to do that I can’t do. Some of it isn’t just guilt it’s a kind of jealousy of others which in turn leads to guilt; not just about what they can do I can’t, but guilt over the jealousy as well as guilt over not being able to do stuff. Quite a complicated mess for a brain-fogger to handle. Tiring mess at times too, leaving little left for something like anger.

So, how to deal with it.

First – a reality check. Sometimes things are bloomin’orrid and that’s life. So, accept reality. Don’t paint it worse than it is, and don’t run and hide from it. Get down with Fr Fran Fortuna’s Everybody Gotta Suffer and accept. This is easy to write and difficult to do, but it is, honestly, worth the effort.

Second; don’t assume that other people are cross that you can’t do what you used to do. Projection is a bad coping mechanism and is more likely to make the picker-upperer (there’s a word that just needs to exist) of your lost ability more cross with you than the business of picking up where you left off.

I know that many people are not projecting – that their friends and even family do tell them they are lazy, need to try harder, pull themselves together. The most difficult thing here to to stick with reality and accept that they are the one with the bad attitude and it isn’t your fault.

Third: Don’t give up because of the silly guilt. There is some mechanism in false-guilt that leads to fear. So, the temptation is, to throw up your hands (or just one if the other one won’t coordinate) and cry “Forget it! I give up!”

Take the good days and enjoy them. I’ve had odd days when I can play the piano again and even cook a meal once in a while without burning something, leaving something raw, filling the kitchen with smoke or killing any of the kids.

Lastly but most importantly of all be grateful.

If you just threw something at the computer screen, take it back and think a minute. There are still good things in life, even with chronic illness. I’m not saying pretend things are better than they are – but just be glad for the things that are good.

If you have reached that awful point where you just can’t see anything good then look for something small – a flower in bloom, a slice of cake or even the smell of rain. Anything that holds something good in it.

Finally it’s worth remembering that for people with ME/cfs and some forms of Dysautonomia that emotions can get a bit weird. Mood is heavily influenced by things like how our adrenals work, serotonin uptake, how malnourished we have become because of a busted metabolism and the generally busted HPO axis. This, coupled with mood changing drugs such as steroids can have quite an effect on our coping skills.

All we can do is keep at it. One day at a time – and on bad days one hour at time.

PS. I think I mentioned in a post where I’d seen the Cardiologist that I had decided not to have the tests for hyperadrenergic POTS done because they are very complicated and need lots of time and very skilled people.  Jackie’s very informative post here gives you the info on the tests.

ENDNOTE: I may also have mentioned that I am now on 10 mg twice a day of Ivabradine and as the max dose is 7.5 mg twice a day I spent a long time in the hospital pharmacy with my son.  Well, first repeat prescription request has hit the wall as the pharmacist is having the heeby-jeebies over handing the stuff over. I had written clearly on the the request that this was the Consultant Cardio’s decision and had been okayed by the hospital pharmacy and I assume the letter is in my notes by now – but it looks like there’s still some sorting out to do. I only hope this isn’t going to be an issue every time I need a repeat.  No anger or guilt – just frustration!

Hospital Appt; interesting discussion on research and treatment.

There are times when having your nose into a fine piece of well controlled research can raise your hopes that answers are really out there. Reading something “famous” from the Lancet can soon remind us that much that gets published is so badly done, it beggars belief.

I’ve been reading and listening to lectures on the HPA axis for some time. It’s all very fascinating and the findings of people with dysautonomia and Fibromyalgia having problems with dopamine production, uptake and re-uptake all looks promising. But promising and having the promise fulfilled are two different things.

I saw the Prof today – a rare Cardiologist who can both dx and treat some of the heart related aspects of dysautonomia. The first very good thing I’ll say about him is he reads up what’s been happening so he knew what things were like before I went into the room. He knew I was on even more steroids and antibiotics (2 infections this time – lovely). He knew about the Respiratory Consultant and the tests I’ve just had. So, lots of time saved without me – in slurry, blurry mode having to try and explain things.

He looked at my BP/HR/Pulse pressure chart. I’m on the highest dose of Candasarten and Ivabradine already. But thanks to the complications that come with this, my HR is still over 100 a lot of the time and spiking up to 150 now and then. Not terrible and not as bad as it was, but still not right. So he’s decided to up the Ivabradine to 10mg BD. This is going well above the max and so we had a long wait in Pharmacy while they questioned him over it. I don’t think that’s a bad thing; having double checks especially for situations like this is a good safety measure.

We talked about the tests for dopamine because my tremor is really bad. But he agreed there was no treatment, and so the tests weren’t going to help me whatever they showed. I can live with this. If I know there’s no help for something, I can get my head around it and put up with it. The hyperadrenergic side of things is being indirectly treated anyway. He doesn’t mind that I read the research- which I appreciate.

I asked him about my weight as well. I eat twice a day (breakfast and dinner or lunch and dinner) and still my weight is creeping up. I’m also getting worse edema in my hands, feet, ankles and back of my legs. On bad days my knees swell up as well. He thinks a lot of the problem is the massive amount of steroids I’m having to take and until we can get around that, I’m in trouble.

So, I haven’t exactly come away with good news, but I do feel that I know where I stand with this shambles of a disease. I refused hospital admission last week because I knew there was nothing they could do extra in the hospital right now. My poor GP…but he agreed with me in the end.

The bottom line is this; I know what this disease is doing to me and I know that I have three good docs; my GP, Cardio and Respiratory docs and they are doing what can be done. After that I have to accept this. Sometimes it is overwhelming and I get a bit fed up – but having a doctor who accepts how bad it is and doesn’t try and play silly games can make all the difference.

It was lovely that Alex could take me as well. We could do some catching up. He’s a very happily married man :)

 

Back to the steroids, or not?

I was given a script for Prednisolone to keep by for those sudden onset emergencies. The idea was to help prevent my rather inconvenient (to me, the kids and the doc) sudden requirement to turn up at the GP for the nebuliser and   the inevitable script for yet more Prednisolone. The heat hasn’t helped my breathing. My lungs are having a hissy fit and while my dear ol heart and BP seem fairly stable (whoo-hoo) (for now – I am nothing if not a realist) my lungs are squeaking wheezing and waking me up at night demanding air. They are showing signs (again) of being too idle to bother to breathe unless I’m awake to help them. Honestly, you can’t get the organs these days!

The Big Pillow is back on the bed. This works a bit like calling in dad – the Big Gun- when teenage boys got a bit too big for their already over-sized boots and dad needs a word. So the Big Pillow keeps me more-or-less upright at night so I can breathe and then if I slip my lungs are quick enough to wake me up demanding better posture and more air.

Originally the pillow was a breastfeeding and baby nest thing so it’s big, and firmish. I recommend them for you fellow lung-lubbers.

Now, I hate taking steroids and up until recently I have also loved the little things. You see, while I am acutely aware of the nasty side effects and the long term nasties in particular thanks to a looooong history of taking steroids orally, intramuscular and IV I also am aware that they work like a minor miracle; not just on my breathing but on pain and that bone grinding feeling that goes with it.

As most of the side effects are part of my “normal” illness anyway I haven’t noticed much other than the weight gain and the moon face. I can spot a fellow steroidy by that face.

So, back to the question at hand. I have the Pred in my drug box. I am struggling to breathe and I have two reasons to take them. First – it might help avoid a doctors appt or an emergency doc appt. and second, we’re off on holidays soon and I don’t want to spend the hols doing a magical mystery tour of Scotland’s NHS provision. It won’t be good for the family.

My dh says everyone will take it in their stride if I need to sample the NHS up north. And I’m sure he’s right. But we are off with 5 of the children and a girlfriend. I would rather steer clear of stethoscopes and hissing masks.

Is that a good reason to take the Prednisolone? Because I’m a bit (ok, quite a bit) worried about wrecking the hols for everyone?

Who knew that taking drugs could be a moral or ethical question?

Having written all that my lungs have made the decision for me – back on the Pred.

On a side note, the Respiratory Doc has spotted that some of my breathing problems are not just asthma. He is a bit concerned that I’ve been on almost daily high doses of steroids for months and months and wants to separate out the asthma – that needs steroids and the other stuff that might need something else.

While there’s definitely the Lump in my throat around my voice box thing at the moment I am pretty sure it’s asthma.

Lung Specialist appt.

images (1)Off we went to the Three Toilet Seats on the Hill, otherwise, more properly known as the QE. I saw The Respiratory Consultant who is a Colonel in Her Majesty’s Forces. I must admit to giving myself the “talk” before we went. The “talk” consists of quiet practicing in being able to stand up for myself and cope with rude, ignorant doctors who give a very good impression of having either never been to med school or to have slept through it, while contracting a serious case of Narcissistic Personality Disorder. So, I was ready.

He was very nice, polite, sensible, knowledgeable and respectful! It’s not just the Prof who is good at his job!

The Colonel allowed me to explain what had been happening and because he was listening he was able to spot some of the things I thought might be happening. He accepted my claim that some of the breathing problems are orthostatic, in that I am more breathless when upright – but not wheezing. He wasn’t fazed by IST and Dysautonomia.

I tried to explain the difference between the “obviously it’s asthma” stuff and the “what is that?” stuff. He picked up on it straight away and talked about the sounds made when the voice box isn’t allowing air through! He described the sounds and problem and that was spot on.

I’m to go back for more tests. At the QE I’ll have tests to look at chest muscle function. That’s interesting as it would touch on ME. I still want to ditch the dx of ME because of the politics around it, but if it is shown that my muscles are part of my breathing problems that plays into the biomedical evidence for ME. We’ll see what happens. He also wants to see what my diaphragm is up to. If it isn’t working properly that too ticks a bloomin’ ME box.

Meanwhile I am to be referred to a voice and speech specialist at East.  Let’s see what she makes of my voice, swallowing and talking problems. The Colonel obviously thinks she’s a good’un so I think I might allow myself some hope there.

My previous tests showed asthma and something else, not yet definable. But today my SATS were 99! I’ve NEVER had them that good before! It’s interesting to see that when I feel better that the easily testable things like SATS, BP and HR also look reasonable or even good. It should mean I can measure fairly easily when it’s going badly and when it’s going better. Whether this will make life easier with doctors I don’t know – but, God in His mercy seems to be allowing me to see some real doctors at last.

So, more tests, awaiting voice and speech appt and I’m to see the Prof and Lupus Rheumi next month. I do hope all this is leading to some answers. I feel like I moved forward knowing I have a form of Dysautonomia. I want to remind the Prof about the hyperadrenergic tests and then we’ll see.

I know there’s no cure, but I can’t help a little hope that I could function better than this.

Ivabradine for Inappropriate Sinus Tachycardia 7.5mg BD: 1 month on.

procoralanI’ve been on Ivabradine (aka Porcolaran) for three months now, but only on the full dose of 7.5mg twice a day for a month. So, what’s happening?

Most of the time my standing heart rate is below 115. Sometimes I get spiky days when it’s up to 120 but I haven’t seen anything more than about 120/122 even on bad days.

Resting HR hasn’t been as good. It’s still often around 95-100 but I have had some lovely 75-80 days.

Unfotunately, for some reason, my OI symptoms are worse. I am blacking out more often and simply can’t stay upright for much more than ten minutes at a time without presyncope, severe breathlessness, blood pooling and other nasties. I have no idea why this is so when my HR is coming down to more sensible levels.

My tremor is much worse when I’m upright too making me wonder about those standing dopamine levels I wish they’d check on. Gravity and I don’t get on very well.

My mid-afternoon crash is getting worse too, where I have to half lie down on the sofa because it’s hard to keep my head up. Not every afternoon, but more often than I used to.

I don’t know whether this is the Dysautonomia side of things or the ME side. My BP is still generally high. It’s a bit annoying that the one side effect of Ivabradine  I could do with -lowers BP – I am not getting!

It’s still early days and there’s more the Prof is going to do with me. Although the OI is worse I still think that as my HR is lower this is a good thing. Perhaps if I get the BP sorted out some of the OI will be sorted too.

If getting the drug cocktail right can at least halt the downward slide, I’ll be happy. I can’t take beta blockers so Ivabradine is it for the IST. The only other thing I can think of for OI might be L-dopa, but we’ll see.

Overall I think, so far so goodish.

READING: NB although many people with POTS or IST can take Ivabradine, it is not safe for patients who also have NMH (Neurally mediated hypotension)

Ivabradine; A Ray of Hope for IST

Ivabradine; Clinical Efficacy in IST

Ivabrdine in the treatment of OI – oh the irony when my OI is worse!

Radiofrequency Cath. Mod Ablation for IST. So far the studies I’ve read on ablation or IST show mixed results with more not working or making things worse than working. In my case I don’t expect to be offered ablation as my lungs are shot. anaesthetics don’t suit me. If your doc offers ablation think and read long and hard before accepting or refusing.

The Drug Juggler (part 1)

The person who takes medicine must recover twice: once from the disease and once from the medicine.”

Dr William Osler

Drug smugglers might think life is hard on them, but drug jugglers are walking a high wire with no net.  When you have an illness that likes to open the door to all it’s friends and relations, you can soon find yourself on a shocking amount of medication. Chronic illness has a really nasty habit of inviting a whole sack load of pathogens to have a rave in your body. This means we need a ridiculous amount of medication as more co-morbidities set up residence and then the drugs we are given can have their own nasty side effects and open invitation to even more infection.  So drug juggling becomes a way of life.

P1020587Let’s take some of the symptoms that go with the Shambles dx of ME/Cfs + fibromyalgia + asthma + hypertension + dysautonomia IST. Which is what I have been stamped with so far. One of the major, and irritating symptoms is brain fog, and memory loss. That means juggling meds as to when and how to take them can be a bit challenging at times. Coupled with varying  vision there is a danger of accidents.

So organise the meds. Make sure you know what you are taking, how much and when.  You can buy those plastic boxes but they are sooo ugly and just scream “you’re a sickie!”  My oldest daughter bought my a glittery makeup bag some time ago but I’m on so much more stuff these days it wasn’t able to hold it all.

So I have bought a makeup box. Don’t laugh – this is something you can carry around without

P1020589

it being obvious you are taking a truck load of drugs. It holds everything including the arthritis gloves and bandages for bad pain days. It’s kind of “drugs in style”.

Knowing you can just take what you need even with the worst possible brain fog is good.

Something like this box is ideal. The bottom layer will hold boxes of drugs you aren’t using right now, and things like arthritis gloves and bandages. The middle layer will hold inhalers, and/or morning and afternoon meds  and the little top boxes will hold (in this case) six nights worth of meds.

The other thing I am going to do is have a list of meds on a sheet with a list of dx and you should add sensitivities and allergies too.  This will make things a lot easier if you get shipped off to hospital.  The last time I was in an ambulance I found it really difficult going through it all with the paramedic as I just wasn’t very with it at the time. If you have it all written down that will cover all eventualities.

Side Effects

Another quote from the redoubtable Dr. Osler

One of the first duties of the physician is to educate the masses not to take medicine.”

We live in a strange culture that sees any kind of suffering or illness as something to be medicated to death. Every winter, certain over the counter meds get advertised on TV in such a way that is laughably inaccurate (how it’s allowed I don’t know). Got flu? Take this magic snake oil and return to work the next day!  This patently false advertising gives the impression that if you feel ill, there’s an immediate cure out there. Well, folks, there isn’t.

Taking medication should be done only when you really have to. All meds have side effects. For those of us with a nice complicated set of chronic illness there seems to be a bent towards drug sensitivity. This means you need a patient doctor who will do some trial and error.

Take hypertension; there’s a number of drugs I’m on or have to take on a regular basis that actually increase BP. However I’m also on drugs that are supposed to lower it. The wild fluctuations I have in BP are more likely ANS related than drug related but there’s still some chance the drugs are up to no good. That’s one of the challenges; working out what is making the symptoms, the diseases or the drugs?

Steroids can cause hypertension and batter your immune system leaving you open to all sorts of opportunistic infection. The fact that so many of us who need steroids already have poorly functioning immune systems doesn’t help.

You really do need a good, trustworthy, sensible doctor to help you tiptoe through this minefield. Be aware of what your meds do and what they might do that you don’t want them to do. I am on antibiotics more often because I’m on steroids so often. I will discuss ways of coping without steroids for periods of time so I don’t have to have quite so many infections.

Oral steroids are the worst offenders (Prednisolone is my poison) but I am on inhaled steroids too. Don’t forget that they too have side effects. I frequently loose my voice for example. Some of that is the disease and some of it is inhaled steroids. If you inhale Seretide or one of the other steroids make sure you gargle and rinse afterwards. It might to help, but it might avoid some voice problems.

Recent research suggests that Vit D could help even steroid resistant asthmatics. However, the media is always grossly simplistic in it’s reporting. First of all Vit D supplements vary humungously. Also you need Vit A to process Vit D and you need exactly the right amount of Vit A to process Vit D. What isn’t clear as yet, is whether we are lacking Vit D or unable to properly process it. Vit D deficiency is found in ME patients too; still lots of unanswered questions, but interesting progress.

That’ll do for now.

ME/Cfs, Fibromyalgia, Multiple Chemical Sensitivies, Gulf War Syndrome AWARENESS DAY

62608_351128568321966_500473882_nMay is the month for raising awareness of all sorts of so-called “invisible illnesses.” I’ve said before what I think of people who can’t see another persons’s cross. Not seeing it, doesn’t make it invisible.  The fact that these awareness campaigns are needed irritates me. But hey ce la vie. It’s what Douglas Adams referred to as “Somebody Else’s Problem” the SEP field that made someone invisable.

The one disease that I’ve been thinking about recently is Gulf War Syndrome. The name is a silly label covering the diseases presented, originally, by solders coming back from the Gulf War. I don’t know as much about this illness as I would like to. Like ME it is riddled with controvesy and obvious vested interests. The needs of the sick veterons got kicked way down the priority list.

But one of the good things about injustice, is that it always bites the handler in the end. Meanwhile people with a mixture of serious illnessnes are getting together, supporting one another and pooling resources so that even if there isn’t much research, what there is, can be worth while. These days there is quite a bit of research and a good deal of it is of high quality. (There’s still an astonishing amount of shoddy work being published but the good stuff shines).

Today an International effort is being made by the sick who are well enough and by carers and even some researchers to get some answers. Protests are being organised from Australia and around the world demanding better funding. I’ll never forget reading that in the UK more money is spent researching hayfever than ME.

But groups are getting together and thanks to the massive number of comoribidies that we all seem to have; dysautonomic disorders, gut disorders, bizarre cancers, heart failure… and so on, the more research can be pooled to help us the better.

A number of different paths are being trodden in research and they are proving interesting and hopeful. Anti viral meds are still being tested but for a subset of ME patients in particular they are showing great promise. Sadly, gettingt the FDA to move quickly on this has been impossible. More people are dying while paper is being pushed around with unforgivable slowness.

Cardiomyopathy and cardiac insufficiency theories are looking good for another subset of patients who (if they can get tested) often show mitochondrial dysfunction. When the heart at mito level can’t contain oxygen properly this affects the whole body. It’s a form of heart failure that’s difficult to diagnose (unfortunately) but as heart failure is the leading cause of death in ME, it’s a side of the disease that needs urgent attention.

Research from many chronic diseases including Multiple sclerosis has overlapped with some ME and fibro research showing the ubiquitous Epstein Barr Virus may be the door opener for the diseases. Patients are tested positive for reactivation antibodies and so many of us have a history of more than one serious case of Glandular Fever that this virus is looking good for the root of a lot of our problems. It’s also implicated in Lupus.

Theres good research into methylation and some into endrochronological aspects of our disease.

A lot of time and money has been lost (stolen even) but we can work together  and make up for all of that.  It is my personal opinion that the reason diseases such as HIV/Aids have received the funding and research needed was that those who became HIV+ in the ’80s were actually well enough to fight the astonishingly bad reaction from the CDC. It also helped – sadly- that some famous people died of AIDS.

People with ME and other similar diseases are very sick right from the start. Even those on the less severe end of the scale suffer serious brain fog, confusion and of course the hideous PEM (post exceptional malaise). The people who die of ME tend to be “ordinary” and therefore not high profile enough to galvanise those in power.

Perhaps there won’t be answers in my life time. But I pray to God, they will be answers. Join me in that prayer.