25 September 2009

russia with love

as i said before i like posting pictures. i will try to take some interesting ones on my limited journeys out.

today was spent in bed all day. not because I'm unwell, although i have been experiencing headaches for a few days, but because my mum had to drive to fulham to drop my dads passport off. he is heading off to Russia next week for work, i think he needed a visa. so my sis came round and stayed with me all day. i had her two dogs last night, which was lovely. i cant help but cuddle and kiss their fluffy heads. big eyes look up, i can imagine them talking, (no i haven't got cabin fever!).

got a letter from the neurologist today, it was the letter that he will sent to the doc, about the appointment i attended. there was a few pointers on the letter, he said that i had lax joints, hypermobility, p.o.t.s syndrome, and the autonomic test showed problems with the sympathetic system, well that would explain the anxiety. not sure what the other problems are just waiting for the appointment to come through for my consultant then i will find out.

i know that i should be grateful, grateful for feeling better. somehow i get a bit grumpy, a bit fed-up, or maybe that's the headaches. Ive taken paracetamol which never seems to work with these type of headache. and my neck is aching on top of everything. sorry for the whinge.


j said...

Hi I am new to your blog and just started my blog. I hope you don't mind me following your blog? If you do, visit my blog and let me know. My god, you are suffering from so many conditions, how do you deal with the pains you have to endure? Well, I want to read your past posts~
Hope your headache goes away

Rachael said...

we all need a whinge sometimes alice!

Im always getting fed up with things, then i start feeling better again, its hard to be positive all the time.

I have to ask and excuse my ignorance but what is p.o.t.s syndrome? Is it an anxiety disorder?
I've seem in mentioned in some other posts but i cant think of what it stands for.

take care

Nechtan said...

Hi Alice,

The headaches must be a pain. I don't suffer from many but when I do they are usually eminating from the neck which always makes me think it is down to tension and/or posture. Especially when we are not as active as most I think these elements are ripe for aches and pains.

I look forward to the photographs.

All the best


Achelois said...

Have you looked up rebound headaches at all related to paracetomol? Now you know more of whats going on perhaps seeing a pain management specialist would be a possible referral. The dogs are so cute. Hoping today is a headache free day.

alice said...

hi j

i suppose we just have to deal with what we are given at times thats so hard. of course i dont mind you following my blog.x

hi rachael

p.o.t.s stands for postural orthostatic tachycardia syndrome. its to do with the autonomic system, the system in your body that deal with everything that is automatic. it isnt to do with anxiety although the part of my system that is affected the sympathatic nervous is, it kicks in the flight or fight. so no wonder im anxious.

oh i do have a whinge sometimes though, you wouldnt want to be in earshot!!! thanks.x

hi nechtan

still have the headache, although it dips and peeks. my eyes are painful at the moment, i still take the tablets in case they are too work. pretty tired feeling at the moment. they sure do take it out of you. thanks.x

hi achelois

i havent heard of rebound headaches but will take a look. im glad i found your blog. i looked up hypermobility syndrome and if im correct its a type of ehlers danlos. i received the letter back from kings college which they are investigating right now. will be good to learn some tips. x

Achelois said...

Hi Alice,

You are correct hypermobility syndrome is considered by some to be one and the same as ehlers danlos hypermobility type (formerly k/a type III). The latter being on the more severe end of the spectrum & POTS being part & parcel of the package. On Specialists - Professor Rodney Grahame at University College London Hospitals is the specialist with World Renowned Knowledge of of the condition. Professor Bird also from /up north somewhere I can't remember now!

Tips for dealing POTS in an elementary way are keeping salt intake up to boost blood pressure plenty of water and if you can stand distributing the weight from each foot by gently moving them up and down in a mild stamping way to try and stop the blood pooling in the feet. I am sure you know all this and it sounds to me as though you could do with medication to help. If its hypermobility its really important to see a specialist with understanding and knowledge of the condition as it is often misunderstood and patients have often been described as hysterics or hypochondriacs - this is not the case!! Good luck Alice xx

alice said...

hi achelois

i know some of the things you kindly referred to. im on quite a few meds, midodrine,fludrocortisone,paroxitine,domperidone,beta blockers. i just had the visit to the neurologist a few weeks ago so the hypermobility was a new one on me. i have an appointment with my consultant with the next month so i shall ask him more.

thanks for the tips though, any new ones may help, and that can only be of help to me. thanks.xxx

Achelois said...

Crickey (sp)alice thats a hefty combination of meds. Hoping that headache just stops right now! You deserve a break quite frankly.

alice said...

hi achelois

sure am on a few meds. although in may when i was so poorly i would of grabbed any they would give me! the headache has eased a bit. thanks.x