Category Archives: A Day in the Life

Something New – Allodynia

Standard

I haven’t written a “Day in the life” entry for a long time. But I’ve been prompted to do so due to a new development, which I assume is due to HNPP.

One of my first persistent symptoms of HNPP was due to Ulnar nerve compression, usually when doing desk or table work. It first started to be a noticeable when I was in my late teens. It is a fairly regular occurrence and is so easy to trigger by such minor pressure that often I don’t notice that it is occurring until it is too late and my little finger and half third finger plus the outer aspect of my hand and sometimes into my forearm has gone completely numb. As long as I don’t aggravate it, sensation will gradually return over several days to a week.

Over recent years I’ve noticed that if I rest on my elbows I will get a sudden electric shock like pain shoot down the outer side of my arm, it’s a good warning, so pain which serves a purpose.

Several weeks ago I had a sudden inexplicable intense burning pain right in the bony groove of my left elbow, it lasted only 15 seconds or so, but was so intense that it really got my attention. It occured again several times that day, and seemed to be triggered by the merest touch and stretching or tensing my upper arm muscles.

Over several days this seemed to gradually move up the outer side of my arm toward my tricep muscles. I thought it must be a muscular pain, a strain or pulled muscle or tendon. For a few days it seemed to be moving toward the lower outer side of my arm and into my axilla, and chest, but thankfully it has retreated back to my arm only. However, what has developed is that that small area of my upper arm has become so sensitive to touch and movement, even the slightest touch results in sudden piercing burning pain. Stretching seems to bring on an almost cramp like aspect to it, but it is the burning sensations which really grab my attention.

I cannot understand what has caused it, could it be to do with the repeated ulnar nerve compressions, but then why would the pain move upwards. It doesn’t seem to be muscular, it is unlike any muscle strain that I have had before. And the sensitivity to touch seems to suggest that it is nerve related, though it might be too early to assume that.

Anyway, it’s there, it’s not making my life a misery, though it does give me a chance to yelp every now and then.

So what is Allodynia?

Here’s a wikipedia definition (pinch of salt and all that, so don’t rely on wiki to get it right)

Allodynia    ……             is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, which may feel like a burning sensation, and it often occurs after injury to a site. Allodynia is different from hyperalgesia, an extreme, exaggerated reaction to a stimulus which is normally painful.

And here’s the link to the rest of the wiki article,

Allodynia, a wikipedia definition

It will be interesting to see how it develops or improves, though at the moment I don’t feel too positive about it improving as my continuing problems with shoulder and upper arm palsies and ulnar nerve palsies, mean that it is bounded by two areas of nerve injury.  QI

HNPP UK Pages

Standard

Unfortunately, there is a slight problem with the HNPP.info website. It is currently hosted on two different servers, usually a redirect is in place which means HNPP.info is always reached in preference to hnppinfo.myby.co.uk

On Trying to update the website to remove old dead links and to put in a few more current links, I realised I have forgotten my login details for the HNPP.info website.

So I’ve updated hnppinfo.myby.co.uk but as yet hnpp.info is currently out of date. I’ve removed the redirect for the time being, so that the current version can be accessed. I’m hoping to get everything sorted soon. And mostly it’s not going to be a problem, but it would be good for both to be unified/sync’d .

 

Should I Stay or Should I Go

Standard

My posts last week were the first for nearly 10 months. I have been neglecting this blog and it has been bugging me for sometime that I’ve been doing that. Then last week I decided I needed a break from the facebook groups, I had a hissy fit about the DBEOH phrase being used, and on the spur of the moment left a message that I was taking a break.

I’ve realised that I cannot do both at the same time. Facebook demands quite a bit of attention, it’s like a noisy demanding child, and I don’t mean the people in the groups, but the whole facebook experience. So many reminders and notifications, and it’s all so ‘reactive’, it’s all, ‘now, now, now’. So I’ve come back here, and have a few ideas for regular blogging about HNPP, not a daily diary that I tried once before, just a careful approach to blogging about medical studies about HNPP, and the occasional post about my current state of health.

The Facebook groups are very good mind you, most people there are very thoughtful and caring, and provide a lot of support for one another, the groups are very well managed on the whole, with very few arguments and generally a laissez-faire approach to moderation. The facebook interface is quite good, but lacks a few structured features, like good topic/post headings which can make it quite repetitive when the same topics come up time and time again. It’s also very sequential and timeline driven, which means it gets harder and harder to see older posts. But it does have a large following and that makes it very dynamic and representative of how the condition (HNPP) affects most people.

I, however, can’t do both. So facebook groups will have to take a back seat. I’ll only be using it to keep in touch with family and friends through PMs. I’ll remain a member of the groups but I doubt whether I’ll visit them that often. As I’ve discovered before, it takes a while to get back into the swing of things after a break, and as I want to keep the momentum going here, I’ll not have time to get involved on the groups.

Sadly it seems that the Yahoo group for HNPP is naturally winding down. The Yahoo online interface just cannot compete with facebook, and it’s email system is so riddled with problems from spammers and advertisers that it has become too difficult for most people to use. However, if one can manage to cope with the online interface it is still a very valuable resource for information on life with HNPP, and although it has it’s difficulties of use, it is far easier to search than facebook groups, allowing users to pop in by year or month, and by following threads.

So, I’m neither staying or going, I’m floating free… (ho ho he he ha ha ha ha)

DBEOH

Standard

What on earth is DBEOH? Has he lost his mind?  (quite possibly)

DBEOH – “Don’t blame everything on HNPP”

or worse,

DBELTOH – “Don’t blame every little thing on HNPP”

I find these phrases rather insulting. Not to me, I might add, I don’t really give a groat what people think of me that much. No, it’s usually other people with questions about HNPP that this phrase is so thoughtlessly applied to, and that get my hackles up. I will defend the right for anyone to ask any question about HNPP. Questions deserve careful and thoughtful answers, DBEOH is neither careful nor thoughtful, and really adds nothing to a conversation.
Even more infuriating is when it spouts forth from the mouth of a Neurologist or other health professional.  What a great way to totally trash a doctor-patient relationship.

Oh well, it takes all sorts I suppose….

 

 

Air Quality – asthma, allergy, migraines and the kitchen sink

Standard

A Kitchen sink in this post?

Air quality has been really bad over the past few days, not so bad in South Wales as the rest of the country, but enough to give my lungs a clogging up, eyes a-stream and the wheezy sneezies. Pretty unpleasant when my lung capacity has taken a dive for the worst.

At first I didn’t realise just what was happening, tuesday morning started off pretty much as usual, a long wake up period for my body after a night in bed, but as the morning progressed I felt substantially worse, eyes began to water, sensation of rhinitis, then dizziness, headache with scotoma and other weirdy wonders of migraine, ie left sided weakness, ataxia, face disolving and rotting hallucinations (won’t go further into this, cause it’s too much to dwell on). Nausea, eurgh, realized too late, but hit the cinnarizine hard. What a wonderful drug, there are few I can honestly say that about but for me it pressses so many buttons.

Only later did I hear on the News that pollution levels had soared due to south-easterlies from the continent coupled with saharan dust in the upper atmosphere. All the warnings were out for those with lung conditions to stay indoors or at least to avoid exercise outside. My kitchen faces south-east, as everyone knows it’s the place to party, well I like to spend most of my time in them with talky radio or selected music… I digressfully ramble…

Not much about HNPP in this post, so I won’t spoil it. Oh allright then, perhaps I will. It’s my baseline, it’s part of how I’m ‘moulded’ or how I’m cast, I can’t escape it, it’s as much part of me as my greying black hair, brown eyes etc. So inevitably what happens to me often has a knock on effect on how HNPP affects me.

What has really intrigued me about the last few days is the relationship between, migraine, allergy, and even the symptoms of  Meniere’s (or should that be MAV or AIED or something else which affects the inner ear). As I’ve said many times before, I have atypical meniere’s disease, the wrong type of hearing loss, starting at a very young age. (AIED – AutoImmune Ear Disease  – perhaps, those allergies again??)

A few years ago I saw a post on the asthma UK forum from a medical researcher from Russia, who had been studying the relationship between asthma, migraine and the trigeminal nerve. This intrigued me but the researcher was reluctant to expand on his findings. Because of the events of the last few days, I’ve had a little persusal of several MD forums and finally this morning did a gooogle search for ‘Allergy migraine’, the first result being this following article from Medscape.

Are Allergies Connected to Migraines?

Here are a few selected quotes,

Evidence indicates that the trigeminal nerve that carries pain impulses from the periphery to the central nervous system may involve more than just the dura mater of the brain, and could encompass mast cells that play a key role in allergies, researchers speculate.

 

“The nose and sinuses could play a much bigger role in triggering migraine than previously recognized, as trigeminal afferents richly innervate the nose and paranasal sinuses,” said Dr. Martin. “We hypothesize that a hypersensitized trigeminal system in the nose as seen in migraine patients may be activated and sensitized by allergic and nonallergic rhinitis triggers.”

 

There’s plenty more in the article, but I don’t want to incur the wrath of the bods over at Medscape…

With the previous information about possible hearing loss in MAV (migraine associated vertigo) due to ischaemia of the inner ear during migraine, a pattern seems to be emerging, a pattern that seems to match so closely  my expereince of migraine, sinus-rhinitis, hearing loss, vertigo and tinnitus, over the past 43 years and more. But of course this could all be just coincidental and still be separate conditions just happening to all come together.

I haven’t even mentioned HNPP, which may well have no causal association with any of this, but it is there, and as the expert neurologist once said, ‘well all your peripheral nerves are affected by HMSN, but we rarely see it affecting proximal peripheral nerves’ (paraphrased), which doesn’t mean that it can’t just that they don’t see it often. He was primarily talking about CMT1a, which as we know is mostly a length dependent neuropathy, unlike HNPP which is multi-focal and dependent on minor nerve trauma. So as far as I’m concerned the question  about cranial nerve involvement and HNPP  is still open.

(NB The cranial nerves have a proximal peripheral portion, ie part of the PNS, those parts that innervate the muscles and senses, including special senses, of the head, face and throat. Once they pass through the Brain stem they are then considered Central nervous system tracts. There are 2 omissions from this, the optic nerve and olfactory nerves are thought to be purely CNS)

House Move

Standard
Dec_25_Oxwich Bay Gower

Dec_25_Oxwich Bay Gower

I’m no longer a resident of Bristol. After living in that area for approximately 53 of my 54 years, I’ve escaped! Now living in South Wales a few miles from Swansea and close to the most wonderful Gower Peninsula. Sea air and even the rain, and there’s plenty of that, tastes slightly salty.

 

Got a really big garden to potter around, probably 4-6 times the size of the old garden in Bristol. So I can get plenty of exercise at a pottering pace. Two ponds one very small, but bigger than the Bristol pond, and one 4 -5 times the size. Lots of frogs, newts, pond skaters and other creepy crawlies, plus a wealth of pond/marginal plants.

Health wise, I’m not too good, though I have my moments of relief. Funny reading the last post, as it is my shoulder and neck that is most troublesome, which was the case back last June. Much worse though, losing grip and arm strength on the left, and the pain can be pretty OTT. All the usual Hnpp crap going on, legs, feet, sciatica etc etc.

Waiting to see the respiratory consultant in Swansea, and get an update on opinions for surgery or other further treatment. Some very curious results from testing last summer, which to me look like further evidence of neuromuscular weakness being more pronounced, but maybe I’m just misinterpreting the results. Darn Neurologist in Bristol was a big let down, didn’t communicate with me at all, and seemed to spout the usual nonsense about HNPP being benign etc etc, whilst ignoring everything I said and asked. Pillocks, me included!

Right, that’s enough grouching about…

Exercise

Standard
IMG_1980

Our Small Garden, a place to potter and ponder.

Exercise has become a big topic for me this last few weeks. I was due to start Active Choices gym sessions a few weeks ago, but knowing my inability to cope with repetitive motion, I felt the types of exercise offered, treadmills, hand bicycles, cross trainers, were unsuitable. My shoulders are now at the point where I cannot raise my arms above my head, and any activity with repeated movements rapidly causes intense shoulder pain.

But I have to exercise. I have to look after my cardio-vascular health. I have been for more respiratory tests, and a consultation with a respiratory doctor. The prognosis isn’t good, stage 3/ cusp /4 COPD, surgery may be the only choice left, either lung-reduction surgery, or a new method of fitting pulmonary valves, or a lung transplant. The problem is rehabilitation after surgery, which would require exercise as part of the process, not to forget that prolonged surgery is likely to cause various levels of palsy. I have to go for further tests, 6 minute walking test, fitness to fly test (I want to visit my son in Belgium so flying is my best option), thoracic CT scan, and further tests to see if there is a contribution to my breathlessness from the neuropathy, ie MIP and MEP tests.

And that’s the problem, exercise and rehabilitation…

Despite not being able to perform on the gym equipment, I do try to exercise the best I can with the level of palsy present on each day. It may not seem like it, but my daily walk to the local shop, approx 100m in total, is quite a task. Because of the foot drop, hip and knee instability, and general core muscle weakness, it is quite an effort. Shoulder and arm restricted movement doesn’t help either. But it does give me a good workout. Because of the palsies I have to work much harder to walk, and I can be puffing and panting by 10-20 metres. My walking gets progressively worse, and the trip back is very difficult. 100 m can take 15 – 20 minutes, stopping several times to rest palsies and to get my breath back. It would be very easy for me to avoid doing this small trip, but it is a good daily exercise, allowing me to gauge my limits, and giving my cardio-vascular system and vestibular balance sense a good work out.

I also like to potter about my garden, I’m restricted to simple tasks, and sometimes not much more than to walk around looking at the plants, a bit of dead-heading, weeding a few pots, and perhaps potting up a few plants. My cacti collection is easy to look after, but again requires a little activity. It may not seem much but does require a bit of stretching, light lifting and some crouching and bending. I get quite puffed doing this, and it can and often does cause various palsies to temporarily worsen, which can make walking back to the house quite difficult. You might get the immpression that the garden is huge, but it is just 30 x 14 feet. It’s enough for me, and does provide an opportunity to get a bit of exercise. And I do like to be outside, fresh air and a bit of sunshine (when the english weather allows) feels good for my soul.

Exercise in the house is easy, I have to keep on the move to some degree or else my legs will go completely dead and my back will stiffen. So I’m often up and down in and out of chairs, and hobbling around the house. Once again the effort involved is quite high for such simple activity, and so my breathlessness comes on quickly. Tackling the stairs is quite a chore, and results in extreme breathlessness, but I have to get up those stairs many times (10 or so) a day. It’s hard work, it’s tiring, it’s sometimes depressing, but it is exercise.

I am not sure whether it will be possible to take up formalised exercise classes, there just seems to be too much repetition involved. i might be able to continue with some Tai Chi Shibashi exercises, but even those are quite difficult with poor balance, leg and shoulder weakness, although I can modify these movements to accomodate any palsies. I find them useful to help find my body’s limits.

What am I trying to say here?

Perhaps that for someone with ever changing and often worsening palsies, even simple tasks can become hard work. It’s very easy to get fatigued, and exercise can often be limited, but that doesn’t mean that exercise is being avoided.

HNPP is so interactive and responds so much to our activities and routines, it doesn’t always mix that well with other health problems. It is quite challenging, for ourselves, our families, and our Doctors.