Have been very ill – migraine and hyponatraemia

To save time I am copying here a summary that I have written for my doctor, with a few tweaks. The thing I had feared has happened – I became very ill whilst aphasic (apparently the more-common UK term is dysphasic), so could not explain what was wrong. I had extreme difficulty making phone calls, and even struggled with the computer, and have messed up the display somewhat. I am now living in fear of recurrence.

HISTORY OF HYPONATRAEMIA AND APHASIA/DYSPHASIA

Lifelong salt-craving.

April 2000 – started desmopressin for polyuria. No problems.

9.7.2007 – started perindopril 2 mg. 4 mg from 23.7.07. 8 mg from 17.9.07.

27.9.07 – 1st episode of severe hyponatraemia. Dismissed on phone by Dr as panic attack; consequently dismissed by ambulance crew.

2.5.08 Wrist fracture (the only fracture I have ever had, minor fall).

Substantial dental damage also occurred while taking perindopril. (Loss of fillings and pieces of tooth) Hyponatraemia can increase the risk of fractures (and dental damage perhaps?):

See Hoorn EJ, Rivadeneira F, van Meurs JB, Ziere G, Stricker BH, Hofman A, Pols HA, Zietse R, Uitterlinden AG, Zillikens MC. Mild hyponatremia as a risk factor for fractures: the Rotterdam Study. J Bone Miner Res. 2011 Aug;26(8):1822-8, available online at Mild hyponatremia as a risk factor for fractures: the Rotterdam Study

26.6.10 2nd episode of severe hyponatraemia. Hospitalised after initial dismissal by A&E doctor of my suggestion of hyponatraemia. Hyponatraemia blamed on desmopressin by doctors (endocrinologist/s). This theory requires overhydration. My own perception is of dehydration, and this was also noted by the weekend doctor on this occasion, who arranged placement of cannula for drip, which was never provided as weekday doctor overruled dehydration opinion. Cannula was not noticed, and became itchy (infected?). Messy when removed.

These 2 episodes featured slurred speech, but not aphasia as far as I recall.

30.7.10 Serum sodium 132 mmol per litre (ref range 135-145)
30.7.10 Urine sodium 147 mmol/l (had probably taken desmopressin)

18.8.10 Serum sodium 133 mmol per litre (ref range 135-145)
18.8.10 Urine sodium 14 mmol/l

23.9.14 Aphasia/dysphasia (1st episode). Mild head-and-neckache, nausea, feeling very cold, then very hot, then cold again. Hypertension, urinary burning, mild proctalgia.

24.9.14 Aphasia. Oral temperature 37.6C. Quite bad headache; 2 paracetamol helped; hypertension. Some confusion.

25.9.14 Still quite confused. Strongly-coloured urine (unusual)

2.10.14 Brain MRI and Doppler ultrasound. Diagnosis (probable) migraine. Fits well with symptoms.

7.11.14 Stopped perindopril.

9.11.14 Started nebivolol 2.5 mg.

14.3.15 (after friend had stayed, so had over-exerted) Aphasia, headache and neckache.

2.8.15 Aphasia with ‘migraine’, scotoma, high bp, feeling very cold, numbness in arm, face and briefly part of chest.

6-7.8.15 Partial aphasia with ‘migraine’. Feeling very cold, near-cramp in right foot.

27.8.15 Aphasia, no numbness

Few days to 24.11.15 Numbness, no aphasia. Numbness moved from hand to arm to face to other arm; feet feeling like inanimate lumps. High bp. Had been eating probably-out-of-date hazelnuts in nut roast bought 15.4.14, from Azerbaijan. Don’t know if I had been eating these before other episodes.

30.11.15 Aphasia during night, no other symptoms. Had had nut roast again (same batch of nuts)

5th and 6th December: Ate more of same batch of nut roast.

7.12.15 Arms numb, spreading to legs, head feeling ‘clamped’; slightly dizzy. Numbness wore off.

8.12.15 Numbness returned; hiccups and belching, nausea, aphasia, apparent solute diuresis (which could explain hyponatraemia), urinary burning, I think, headache and neckache. Great difficulty thinking.

9.12.15 Severe numbness, aphasia, intermittent nausea, confusion. Admitted to hospital. Found to be hyponatraemic. Put on drip. Staff appeared to have great difficulty accessing my veins, which is unusual. Inconsistent with overhydration?

Bruising from attempts to access a vein, 4-5 days later, having spread to opposite side of wrist.

Liquid, dark diarrhoea and apparent respiratory infection after leaving hospital 10.12.15, former presumably due to acyclovir and/or ceftriaxone.

Discharge summaries: doctors are again theorising that this (new) illness is due to desmopressin (although this time they have also cited a ‘viral illness’). Again – this (desmopressin) theory requires overhydration, whereas I perceive dehydration. I am testing the theory by reducing dosage to 50 mcg 2-3 times a day, but am getting very thirsty. NB the term ‘desmopressic’ attributed to me is of course non-existent, and was due to my dysphasia. I was still having considerable difficulty finding words. I probably meant ‘dehydrated’ or ‘polyuric’.

It seems unlikely to me that this acute occurrence of hyponatraemia would be due to desmopressin, as I have been taking this drug for 15 years – without incident for the first 7, until starting perindopril, which was probably the cause of the episodes in 2007 and 2010. The new illness featuring dysphasia, which began in September 2014, was diagnosed after MRI and ultrasound as (probable?) migraine.

I do not believe that the main symptoms of this new illness are common symptoms of hyponatraemia. They are quite different from my episodes in 2007 and 2010. However, they are highly typical of migraine. Furthermore, migraine has been found to cause changes in vasopressin secretion and lead to natriuresis, which could produce incidental hyponatraemia.

See C J Poole and S L Lightman (1988) Inhibition of vasopressin secretion during migraine, J Neurol Neurosurg Psychiatry. 1988 Nov; 51(11): 1441–1444. available online at Inhibition of vasopressin secretion during migraine).

The resurrection of the desmopressin/overhydration theory creates a quandary. Good hydration is recommended to prevent/reduce migraines, but the desmopressin/overhydration theory implies the need to restrict fluids.

As migraine is getting frequent and increasingly debilitating, I am going to try feverfew for prevention. If unsuccessful, I will consider other treatments/preventions.

I am now having to build my gut microbiome back up after it was damaged by the antiviral and antibiotic. My sleep has worsened, and I am understandably anxious.

Waiting for the feverfew to arrive…

Day 8 on nebivolol 2.5 mg (15th November)

Sleep last night was sub-optimal (as sometimes happens).

I had palpitations when lying on my left side, lasting about 5 minutes on at least one occasion. My pulse felt as though it was medium-speed; maybe 65-70, at the time. It’s usually in the low 60s now, sometimes lower.

My nose was slightly stuffy, clearing after I rose (as is common). The stuffiness was replaced by a slight recurrence of the unpleasant halitosis-like smell that I sometimes get.

My legs and/or feet were slightly crampy at times during the night and/or early morning. My neck glands/lymph nodes were moderately swollen.

I had some difficulty emptying my bowels again, at least the first time. In the past I have commonly had to do this several times a day, but now it is just once or twice. It initially improved with the leaky-gut diet, but motility has decreased further since starting nebivolol. (Constipation is a known side-effect, although so is diarrhoea.)

I started taking 500 i.u. of methycobalamin (a form of Vitamin B12) per day today. I have previously taken the more commonly-used cyanocobalamin, which some consider to be inferior and some even deem harmful.

Following a spell of slight dizziness while seated I got a very unexpected blood pressure reading – 96/64! Although the pulse reading (60) was more credible, I suspected that the monitor had malfunctioned, and two further readings a few minutes later were more like my ‘current normal’: 154/71 and 161/78, with heart rates 60 and 58. When I stood up about half an hour later I was a little light-headed, and my legs felt slightly numb – an unfamiliar feeling. When I sat down again I had a sense of circulation returning to my legs.

I had no significant desmopressin-resistant polyuria today.

From now on I will not provide so much detail in blogposts relating to nebivolol, blood pressure and side-effects, and may not post every day about them, but just post about significant occurrences.

I’m generally happy with the way things are going with the nebivolol. Systolic blood pressure still needs to come down, but perindopril wasn’t doing much for that anyway.

Day 4 on nebivolol 2.5 mg (November 11th)

OK – I have now corrected all the incorrect incidences of ‘October’ instead of ‘November’ in my other recent posts – unless I missed some – please tell me if so!

I had palpitations again last night, when lying on either side, but they were tolerable, as my heart rate felt slow on most or all occasions – guesstimate about 60 beats per minute.

My legs felt quite strong and light when I let the cats out early a.m., but when I got up properly they were weak and unsteady (the legs, not the cats!).

I may have had slight light-headedness about 2.5 hours after taking nebivolol. I don’t think it lasted long.

The tip of my tongue was slightly sore today – perhaps another indication of altered immune activity. This seems more likely to be due to my gut-healing diet and supplements than to nebivolol.

I had a brief earache (left ear), which is unusual. I was feeling cold again on one or more occasions, and took my oral temperature on one occasion – 35.7 degrees C (quite normal for me with M.E.).

My diastolic blood pressure was quite good on most occasions (lowest reading 82) but systolic pressure varied from good to high, with a lowest reading of 121 and highest 168. Pulse was always in the low 60s, lowest reading 60.

I had intractable (desmopressin-resistant) polyuria again this afternoon. It can be extremely annoying, and I sometimes wonder whether I will ever be rid of it.

I had a brief, mild lower-back pain at about waist level. I often get these when needing to empty my bowels, but it felt different from usual, and I wondered whether it could have been kidney-related.

Although acute renal failure has been reported post-marketing for both perindopril and nebivolol by drugs.com, there was no indication of the prevalence of this. It could well be unconnected with the drug, and may well just have been bowel-related, although I also had some urinary tract discomfort this evening.

At some point today I developed an indefinable feeling – mostly seeming to be in my head, neck and throat and perhaps around my eyes – that was redolent of when I took propranolol in 1996 (for anxiety?). The propranolol dosage was clearly too high, as I developed dizziness and almost fainted once or twice, which was enough to put me off beta blockers for a long time. I had to overcome these concerns to decide to try nebivolol. I’d guess that my problems with propranolol were due to drug-induced hypotension.

However, as I am still hypertensive and sometimes normotensive since starting nebivolol, the odd, ‘drugged’ feeling can’t be due to that. It’s possible that it started after I took diphenhydramine in the evening to help me sleep. Nebivolol does not appear to be contraindicated for use with sedating (anticholinergic) antihistamines like diphenhydramine.

I had occasional bouts of dry cough today, which I have had on and off for some time, both while taking perindopril and while taking nebivolol. Cough is listed as a common side-effect for perindopril by my sources, but not for nebivolol. Could it be that perindopril has not stopped having all its effects yet? Or maybe it’s not drug-related. It’s just a slightly-annoying, sometimes tickly, cough that tends not to last long. Perhaps most-likely sinus-related.

Just reporting symptoms for the record.

Day 2 on nebivolol 2.5 mg (9th November)

Yesterday (9th November) I had intractable polyuria (resistant to desmopressin) for much of the day, presumably involving mineral loss. This is the type of polyuria for which I have been trying to find the cause(s), and which is more common as part of post-exertional malaise (PEM) than when feeling better. It also seems to contribute to malaise, presumably through mineral (electrolyte) deficiency. And it is the type of polyuria that I have now also come to associate with perindopril, presumably through natriuresis (sodium loss in urine).

But I’m not entirely surprised to get it even after stopping perindopril, as I am still getting PEM. It would be very nice to lose it though!

I don’t know whether there is anything in the inflammatory-cytokine theory of sodium-losing polyuria that I referred to in this post.

https://illanddesperate.wordpress.com/2014/06/21/latest-good-bad-and-hopeful-news/

Maybe I’ll try the turmeric supplement again when I have settled in to using nebivolol (which I hope I can!).

A more-promising development was that when I tried lying on my left side in bed last night, there were no palpitations for about 5 minutes. The perceived strength of my heartbeat increased very slowly until it was eventually at palpitation level, albeit perhaps less strong than has been usual recently. But I was lying in a way that might compress my heart to the maximum degree, as an experiment. I usually avoid that nowadays, and try instead try to position myself so as not to put pressure on the heart region, for example by extending my arm. I did have a previous absence of palpitations maybe a year or so ago, but they had come back.

I had a smelly nose again! I think it was stuffy again too.

I had very slight light-headedness about 2.5 hours after taking nebivolol, which was less persistent than the day before, I think.

I had slight itching on the thumb side of my left index finger all day, where there was barely-perceptible swelling – the place where I have sometimes had small warts (or was that the right index finger?). I associate the appearance and disappearance of these with changes in my immune system, but may be wrong.

I lost my balance a few times today, but it seemed to be due to leg weakness rather than dizziness.

I had stronger-than-usual hot flushes at one point in the early evening, along with very mild nausea. My left arm was aching in a flu-like way, and my lower abdomen was bloated and quivering, although the perceived activity could have been peristalsis (movement of material in the bowel/gut). Maybe the vagus nerve had something to do with the flushes, although some papers posit a reverse causation here (hot flushes causing changes in vagal activity).

Later I felt colder than was merited by the ambient temperature, and my oral temperature was just 35 degrees C. It is commonly between 35 and 36 for me and many other people with ME, but 35 is low even for me, although I don’t think it’s unprecedented.

Systolic blood pressure was high every time I checked it (160-176) but diastolic pressure varied from good (as low as 71) to appalling (up to 101)! Heart rate was fine (64 to 72).

Day one on nebivolol 2.5 mg

First a few details about the 7th – my last day without either perindopril or nebivolol. The details I am recording now are partly for my own benefit – a blog is easier to search than a written diary – and partly for other people’s interest, especially those considering making a similar change, although of course people will vary in how they are affected.

It also needs to be taken into account that some symptoms (or lack of them) may be due to the variability of my ME, including post-exertional malaise (PEM), rather than medications. I had quite a strenuous week, including walking up the steep hill into town twice, and also some gardening and dealing with leaks in the conservatory roof.

My appetite was lower than usual, but there was no nausea. This is unusual – usually reduced appetite is accompanied by hunger with me. So perhaps perindopril has some effect on appetite?

I managed my weekly shopping without much difficulty, including walking up the long, steep hill into town, and without my bladder filling up despite taking desmopressin before going out.

Recently I have tended to become polyuric when out, so maybe that has been largely due to the natriuretic (salt-losing with fluid) property of perindopril.

I had nasal congestion on both the 6th and 7th. Again, this isn’t unusual.

…………………………………………………………….
MY NEW ADVENTURE – NEBIVOLOL!

I took 2.5mg nebivolol for the first time yesterday, (8th November) before breakfast.

About 90 minutes later I became a little light-headed, which lasted about an hour, maybe a little longer. I had to be careful while walking around, as it made me rather unsteady. I had a similar experience when taking perindopril for the first time, and when increasing the dosage. This is a common initial side-effect for both.

My nose was still congested.

My breakfast tasted much less salty than usual. I may have added slightly less salt than usual, but not much less. I added some more for taste.

My nasal congestion developed into production of slightly bloody secretions (yes – snot, folks!). Lately I have often produced snot that smells vile (which I think I had previously mistaken for, and recorded as, halitosis), and have had to start using breath-freshening sweets (sugar-free, of course) to try to mask it. It is smelly again, but has been so on and off for weeks at least. Possibly a recurrent sinus infection?

Blood pressure was very high most times I tested it, but I had some unusual ones, with systolic pressure 131-133 (which is good for me) but diastolic pressure at the same times was 101-106 (very high). So the pulse pressure (the difference between systole and diastole) was low, whereas it has more typically been high for me since I became hypertensive.

But it was all over the place as usual, including one quite good reading (for me) of 136/73 in the late evening.

The blood-pressure-lowering effects of the drug can take 1-4 weeks to appear or develop fully.

You can find information on nebivolol here:

http://www.medicines.org.uk/emc/medicine/29166

(If the site gives you an annoyingly-small window for viewing and scrolling, try removing the page style in your browser, e.g. in Firefox click ‘View’, scroll to ‘Page Style’ and choose ‘No Style’. You can change it back when you’ve finished viewing the site.)

So – I survived the first day with no significant problems! I think I have read somewhere else that adverse effects can occur in the first week, but can’t find that site or document now. So I will stay on the alert.

Goodbye, perindopril – is this the end of the search?

This is a long post. It is a big deal, and marks a new chapter in my health.

A recent radio programme and comments on a forum have made me decide that I have to stop taking my ACE inhibitor perindopril.

The BBC Radio 4 programme Inside Health last broadcast on 22nd October, which can be accessed – probably for a limited time – here:

http://www.bbc.co.uk/programmes/b04lq2yl

had an item on stopping certain drugs temporarily when ill. These include ACE inhibitors. The programme included reference to dehydration impairing the excretion of these drugs, posing a risk of kidney damage. NHS Highland have produced a card for doctors to give patients to advise them on this. That can be downloaded here:

http://healthyhighlanders.co.uk/HPAC/ClickCounter?action=d&resourceId=1844&url=%27uploads/hphighland/pdf/L1PAT031L1.pdf%27

But I learned from the aforementioned forum comments that ACE inhibitors can themselves cause dehydration – through natriuresis (loss of sodium in urine, which may be accompanied by increased urine flow, hence the dehydration).

This has been known since at least the 1990s. This paper

http://circ.ahajournals.org/content/97/14/1411.full

states:

“ACE inhibitors decrease systemic vascular resistance without increasing heart rate and promote natriuresis.”

Were doctors never warned of this?

Some of those reading this blog will have read my posts about my episodes of severe hyponatraemia (low blood sodium) and the misdiagnoses of the cause of this, and indeed one doctor even attributing the symptoms of the first episode to psychological causes!

After trawling through my medical records and correlating events with my own health diaries (how glad I am that I keep them!) has shown me that my first severe episode of hyponatraemia – diagnosed as a panic attack on the phone – came just 10 days after my dosage of perindopril was increased to the maximum, and less than 3 months after starting the drug – but 7 years after starting desmopressin – the drug that has caused me no problems but has been blamed by numerous doctors for my hyponatraemia.

Why did my GP and other doctors not make the obvious connection? Why did they all insist on desmopressin being the culprit in 2010?

Having gone through and summarised all this information, plus some on a newish beta blocker that I want to try instead of perindopril, I saw my current GP yesterday. I had typed up a lot of info to support my request to switch blood pressure drugs, but decided to limit myself to a few crucial points and definitely not mention any connections with ME, as I don’t yet know whether he ‘believes’ in it.

The doctor remembered me and apologised for not remembering everything from my previous visit or whether he had the results of my recent visit to hospital for brain and neck scans. This is refreshingly different from previous doctors, who have often appeared not to have a clue about my health issues when I arrive at the surgery. So much for GPs knowing their patients!

My blood pressure was very high – about 180/96 – despite my having taken perindopril that morning. It had ranged from about 150/90 to 173/103 at home on previous days, also despite perindopril, so clearly the drug was not even working well for some of the time.

When I outlined the reason for my visit, referring to perindopril causing natriuresis, and asking if I could try nebivolol, the doctor said “You’ve been researching.” He knew that I did this, and hopefully remembered that I was a scientist, and seemed fine with this. I think he said it with a knowing – but not disapproving – grin, but he has a face that is very hard to read. He tends to look grumpy, and to sound gruff, but I think we have developed a bit of an understanding. Some patients can’t cope with his manner, but I am OK with it, having started to get the measure of the guy.

He had the test results from my hospital visit on 2nd October, including blood sodium 132 mmol per litre. It should be at least 135. Hyponatraemic again, despite consuming large amounts of salt. It’s been like trying to fill a bath with no plug.

I was anxious while waiting to see if would prescribe nebivolol, although I had found that I could buy it cheaply online. I preferred to be above-board with what I take, so that appropriate monitoring can be done and correct conclusions and decisions reached. So I was very relieved when he agreed to it, and also to my requests for a lower dose than he had planned, and to my increasing or decreasing after about a week if I felt it necessary. He said “I give you permission to increase or lower the dose,” again in that apparently joking manner. I suspect that he had guessed that I would do what I wanted anyway. He writes humorous books about his experiences, and some reviewers have commented that he is very observant and good at reading people.

A memorable moment came after I opined that I didn’t think that my hyponatraemia could have been due to desmopressin.

The doctor said “I don’t think so either” or something very similar.

Just a few little words, but they meant so much to me. He is the first doctor to actually agree that I had not caused my own hyponatraemia through overconsumption of fluid and overuse of desmopressin. One had actually accused me of this aggressively over the phone. I had been arguing over this for years, and no previous doctor would take it on board.

I left the surgery with that precious prescription in my bag, and a smile on my face.

As there is no seat at the bus stop, I struggled up a short hill to a nearby roadside bench, where I sat reading a magazine. The views are stunning in that village, and the peace and quiet makes a very pleasant change from the bustle of my local town, even though it is small. It was somewhat marred on this occasion by military aircraft overhead, but they weren’t deafeningly close.

Sitting there, and later standing at the bus stop, watching the relaxed-looking locals, exchanging smiles and greetings with complete strangers, smelling the woodsmoke from the chimneys, I was reminded of why I moved down here from London, and was very glad that I had done so.

I was also very glad to have chosen to wear a winter coat and warm trousers as dusk started to fall and a significant chill filled the air. A few midges started circling above my head, so I walked down to the bus stop to avoid becoming their dinner.

As I stood there, a huge, near-full moon rose above the horizon in front of me.

Back in town, I stopped off at the pharmacy to get my precious new medicine. Although I had to wait ten minutes, and could have collected it two days later when I came into town again, I wanted it in my hand so that I knew I was finally free from having to take an ACE inhibitor.

By the time I was walking home from the town centre, the moon was full, and brilliantly bluish-white in a cloudless sky.

As I walked down the steep lane, I saw two other bright bluish-white lights coming slowly towards me in the darkness broken only by well-separated street lights. I tried to guess what this could be, and thought that it could only be an adult and child wearing head-torches, but it turned out to be a cyclist, who greeted me. Wow – he must have been mega-fit – that hill is hard enough to walk up, let alone cycle up – and he was able to speak too! Most impressive.

All-in-all it was a momentous and memorable day.

I have suffered 7 years of hyponatraemia (sometimes severe), a fracture and dental damage. I have now found that hyponatraemia increases the risk of fractures. It probably also accounts for my dental damage. I had thought that these had been due to loss of other minerals as well as sodium, hence taking additional bone minerals for at least 4 years.

I have been rendered unable to work at times, leading to loss of income. I was unable to complete a research project for the first client I had had in years – a project that was exactly the kind of thing that I had studied to do. I have so far been unable to develop my planned nature video business due to severe, persistent tinnitus making it impossible to edit the sound properly. I have been trying since 2010. Perindopril can cause tinnitus. I was unable to care for a dying cat as well as I wanted to.

I have spent years fighting the medical profession, spending extra money trying to top up mineral levels, and searching endlessly for answers. Was the answer right in front of me all the time?

And more to the point – right in front of doctors, who wanted to stop (and in one case did stop) my desmopressin prescription – a drug that was essential for a bearable life, whilst continuing to prescribe one that was causing the hyponatraemia?

This medical blunder has cost the NHS a considerable amount of money too – ambulances, fixing my fracture, and a hospital stay. It has caused expense, inconvenience and distress to a friend, who had to witness one of my hyponatraemic episodes when taking me home after I had been discharged prematurely from A&E.

There have been several red herrings along the way, some having been raised by myself in the absence of a correct diagnosis, and some having been raised by medical professionals, who should perhaps have known better. Why did they jump on desmopressin as the likely cause, rather than perindopril? I guess one needs to ask them, but that’s not a priority for me, at least at present. But lessons do really need to be learned, and other patients have probably suffered similar problems, and may still be suffering them.

I did not take perindopril today. I think I had natriuresis again last night. I may continue to have some degree of this ‘salt wasting’, as I suspect that I have had it since childhood. I have always used a lot of salt, and my grandmother used to say that I would “dry my blood up”! So the last thing I need is a drug that makes it worse.

I am going to start nebivolol on Saturday, as I need to go shopping on Friday (tomorrow) and don’t want to risk suffering debilitating settling-in problems before then, or I may not be able to get up the hill.

I am looking forward to it with mixture of excitement and trepidation. It’s a new and rather scary adventure. Will it bring improvement in blood pressure and/or other symptoms? I must stress that I’m not expecting my ME to improve dramatically, but maybe some symptoms that I had come to believe were ME-related may in fact have been due to perindopril.

Will I be able to reduce supplements and/or salt intake? Will I experience an increase in ability to work, etc? (This ability definitely decreased in 2010 after my second severe episode of hyponatraemia.) Or will it bring new problems, such as side-effects that impair me as much as perindopril did, and will I have to try other drugs and never find one that I can tolerate which also reduces my blood pressure? (I have tried natural treatments, with little or no success, hence resorting to a drug.)

Is this a breakthrough or a false dawn?

I am cautiously optimistic. But I’ll be glad when Saturday comes, as my blood pressure is sky-high. Not that it was much better a couple of days ago when I was still taking the perindopril.

I intend to keep this blog updated as I proceed with the new drug. If you have any spare digits to cross, please cross them for me!

Acetyl-l-carnitine, alpha-lipoic acid and DHA

Since 1st December I have been taking a supplement produced by Healthspan called Lipo-Carn, and 100 mg a day of a vegan, algal source of the long-chain omega-3 fatty acid DHA (one of the two omega-3 fatty acids for which fish oil is taken). 200 mg a day of the DHA supplement is recommended, but I have to watch my spending, at least until those pensions kick in next year.

Lipo-Carn contains 200 mg alpha-lipoic acid and 250 mg acetyl-l-carnitine. This is quite a low dose of acetyl-l-carnitine and a fairly-standard dose of alpha-lipoic acid. They are said to work well together, and I think I found statements on one or more reputable sites that one may be harmful without the other in some respects and/or circumstances. L-carnitine is also hypothesised to be a good partner for omega-3 fatty acids. See:

http://www.ncbi.nlm.nih.gov/pubmed/21205027

These two sites are also good sources of info:

http://lpi.oregonstate.edu/infocenter/othernuts.html

http://www.umm.edu/medref/

It’s worth clicking on some of the links inside the pages on the relevant nutrients. That may be how I found the warnings about using one of the two supplements alone, about how they work well together, etc.

This paper is also interesting re acetyl-l-carnitine:

http://www.ncbi.nlm.nih.gov/pubmed/8148455

notably this phrase “…carnitine has an important role in energy production and modulation of the intramitochondrial coenzyme A (CoA)/acyl-CoA ratio in the skeletal muscle…”

(NB acyl includes acetyl.)

On the first day I experienced a brief, dramatic disappearance of leg ache and fatigue plus a lightening of mood.

I had a mild, non-troublesome headache for parts of a few days, and sometimes also a tight and slightly-painful neck. Who knows what was happening here? I wondered whether it was the brain/spinal cord/blood-brain barrier healing. If this were a scientific study I could have lab tests and scans to correlate with the changes perceived. But I can imagine my GP’s response if I asked for such tests…!

No head or neck pain for 2 days now.

My blood pressure was worryingly high on the 4th, and again at times since, although it has been fine at other times. The highest readings have been in the late evenings – a time when my BP was previously lowest. This is all despite taking the ACE inhibitor perindopril. But it varies considerably, both before and starting the new supplements. For example, it was 162/93 at 1341 while typing this, and 139/81 at 1345! My wrist monitor calibrates well with the upper-arm ones used by GPs. Although I use the term ‘worryingly high’ I am not worrying much about the increases. Other cardiovascular parameters – cholesterol and triglycerides – have previously been found to be good. Maybe it’s a temporary thing while the body is reorganising itself.

Within a couple of days of starting the new supplements there was obvious progressive reduction of rectal burning on defecation. I am taking this and the reduction in blood glucose (see below) as signs that one or more of the supplements is reducing lactate production. Carnitine may well do this – see:

http://www.ncbi.nlm.nih.gov/pubmed/15591010

which also refers to regulation of the immune system.

On 7th December (yesterday) my legs felt unusually light, strong and energetic and my balance better than usual, I was more alert than usual and my mood was very good. I felt, for the first time possibly in years, that at that time I could probably ride a bicycle on flat ground. It has been a great hope of mine to be able to do this again, or ride a small motorbike again as I used to. To be able to get around and see the scenery again, and escape from human noise to capture pure natural sound for my nature DVDs, would be (will be…?) so liberating and empowering.

I have had this illness for long enough to have developed the self-discipline not to respond to brief feelings of wellness by going into hyperactive mode and using all the energy plus more. I carried on pacing carefully. But I did start Googling small motorbikes and electric bikes, and had pangs of nostalgia on seeing photos of the type of motorbike I used to have. I also recalled the exertion of trying to kick-start the stubborn thing though! I am currently thinking that a pedal-tricycle might be the best option – lets you rest sitting down when too tired to pedal, overcomes the balance problems, and a fold-up one is easily transportable. No fuel costs, road tax or insurance either! There are some nice ones online, and owners report very positive experiences, finding them liberating.

This morning my legs were aching and tired, as they usually are after walking up the steep hill into town as I did yesterday. It’s a necessary weekly exertion to buy groceries and check out the charity shop(s). But I was expecting that. The aching and tiredness almost disappeared, then the legs became a bit wobbly after some necessary exertion today. That’s ‘normal for ME’. If this regime works, it won’t be quick – not after being ill for so long. I have learned to be patient. The trend is still positive.

This morning I was also slightly dizzy while cooking breakfast. My blood glucose was 4.5 mmol/l – the low end of the normal range. The dizziness was mild enough not to be a problem. I actually saw it as a probable positive. Those who can’t yet bring themselves to kick their sugar and grain habits could perhaps use Lipo-Carn to control blood glucose and reduce lactate production. Personally I have had enough of half-measures. Long-term, permanent health improvement matters more to me than short-term pleasure from eating unhealthy foods! In any case, I can get as much pleasure from healthy ones. No need to stint on fats, for example, especially when using Lipo-Carn (see below).

Another positive – can’t remember if I mentioned this in a previous post – is that I can move my hips again! I think that the loss of hip mobility may contribute to what I call the ‘ME trudge’ – a way of walking that I had used for years after developing the illness, and which I recognised in a video showing someone else with the illness. It is characterised by dragging the feet, which minimises strain on the legs but also increases the risk of tripping over. I think I must have accumulated a lot of visceral fat which had partially immobilised my hips. Now that I have lost 8 kg or so of excess weight, I am using more of my body when walking, turning my pelvis as well as moving my legs, and I’m sure it is reducing the burden placed on my legs. It feels good when one’s body starts to work properly again. I perceived a further increase in pelvic mobility after starting the 2 new supplements. It seems very soon, and I can’t be sure that there is a connection, but there does appear to be evidence that alpha-lipoic acid can reduce fat and increase muscle.

I hope that this is part of a virtuous cycle – health improvement leading to greater ability to use all bones and joints, which should in turn strengthen them and facilitate yet greater use of them, which should contribute to general metabolic improvement, lung function, heart function…maybe bring that pesky blood pressure back down!

Co-enzyme Q10 and hypoglycaemia

Well, that was a short-lived experiment. I stopped taking the Co-Q10 because of substantial adverse effects. The worst was dizziness, but I was also excessively hungry, thirsty and polyuric. My eyes felt strange and were wet-looking with constricted pupils (miosis).  I had some visual disturbances – more than usual, I think.  The skin on my torso felt very hot to the touch. All-in-all I felt quite debilitated.

When I stood up I became dizzy and my pulse started pounding fast. I thought that perhaps I had become hypotensive, so sat down and took my blood pressure with a wrist monitor that agrees well with the bp monitors the doctors use. To my surprise I found that my systolic pressure was actually very high (over 170) whilst my diastolic pressure was normal. They were both normal again within about a minute of sitting down. I take the ACE inhibitor perindopril for high blood pressure of unknown cause, and it usually controls it pretty well.

The other unpleasant experience I had on the first day, which I am not sure is connected with the Co-Q10, was difficulty controlling my bowels when out shopping. I managed to hold on (thank goodness!). It turned out to be mostly gas – and a lot of it!

I wasn’t sure whether the dizziness, etc., were due to the Co-Q10 or to overdoing things, which I didn’t think I’d done, but after 2 days of dizziness I had had enough and stopped yesterday. I feel much better today, so am fairly sure it was the Co-Q10.

I did some searching and think the dizziness was due to hypoglycaemia. It appears that adverse effects are rare, and reputable sources report people – including children – taking much higher doses without problems, but others view 100 mg as a high dose.

See here for example:

http://lpi.oregonstate.edu/infocenter/othernuts/coq10/

in particular the section on Mitochondrial encephalomyopathies.

I tried to test my blood glucose but the battery on my meter was flat! I’ve ordered fresh batteries. I think I have a history of hypoglycaemia, although it has never been diagnosed as I have never visited a doctor during an episode. In my young adulthood I had several nasty attacks of dizziness and numbness which were relieved by sugar consumption.

I’m not sure if I want to try Co-Q10 again even at a lower dose, but maybe I will when I get my new blood glucose monitor batteries, then I can verify whether it makes me hypoglycaemic. I won’t be taking more than 50 mg though!