Hi,

I know I've been quiet lately. Some of you may remember that I had a pretty major fit 6/7 weeks ago? (from the RSD/ Dystonia). Well, it turns out that my blood pressure is now uncontrolled (I already had POTS - postural orthostatic hypotension, tachycardia etc) but it's all come together to make me spend several times a day passing out - whether it's for seconds or for minutes. My pulse is well over 150bpm most of the time and my blood sugar appears to be uncontrolled. So this all goes well with the increased frequency of Dystonic fitting I'm getting now, increased pain, increased migraines, auroras, grey wavy vision, distorted vision, dizziness, major nausea, colour vision problems etc..... It appears to be worst in the afternoons so I spend every afternoon flat in bed waiting for it to pass where sitting up at even 20 degrees will have me passed out. So life is mad! especially with trying to do a full time degree course at the same time! Concentration is not really happening at the moment so I'm, well, struggling, with the workload - it's taken me 40 hours to do a lab report!! and I can't be in most of my lectures at the moment due to the great embarrasment every time I pass out - some of my friends have worked out when it's going to happen now but they can tell by looking at me and seeing that my skin's gone grey, my lips have gone blue and my eyes have apparently gone yellow (attractive! ). I passed out in a lecture the other day and it was horrible! The lecturer didn't know whether to notice or whether to ignore it! very embarrasing... I think I've spent about 19 hours a day on average in bed for the last month and I'm SO fed up with it - all my friends are going out and I bloody pass out if we go out and have fun somewhere. Grrrrr! This is not fair! even with my wheelchair tilted fully back I'm still not flat enough. GRRRRR!!! and as the stupid english weather is really dumb my pain is insane. Apparently it looks like the start of ANS failure (or just a very bad flare affecting more than normal).

However a friend of mine had emergency DBS after going into status dystonica and is now cured so... I'm going to see her neurosurgeon but trying not to get excited - I got evaluated for it in the summer and they decided it would be too risky to do it in my case and they won't do it until I've had the pump implant anyway. But, it's hopeful...

Any advice? Any advice on improving the work/ illness/ life balance? I HAVE to be back in lectures and doing stuff soon. 19 hours a day in bed is sending me insane, as is not being able to move and mega pain!!

Love ya

Frogga xxxxxxx

Hi Frogga, I am so sory you are feeling so badly hon.. I have done some research into POTS and Dysautonomia because I feel my simptoms are similar but come and go, I have no idea what to sugest but I will research this more now, I wish there was more I can do to help.. you are such an incredible role model do you know that Frogga? you have all this horible nasty stuff happening to you that nobody should have to deal with even a fraction of, and you are concerned with your school work and cources.. I fully understand it but I think I would not have the strength and dedication you have, and I want you to know that I admire you greatly bud, you give me strength to go on when I think I can't.

Whats DBS?
hugz bud

I am so sorry about what you are going through ((hugs))
I really hope that you start feeling better soon.
Are you on any blood pressure tablets?? they are supposed to help control your blood pressure. My dad is on them (well he is when he remembers to take them)
It must be really hard for you having to stay in bed 19 hours a day - I don't know how I would cope! I must admit I spend a lot of time in bed due to the pain levels, nausea, headaches etc. Nausea is really bad but apparently it is another horrible side effect of RSD!
The pain in my leg is MUCH worse due to the weather, yes English weather is horrible! I don't know how I will cope when it starts snowing and getting even colder.
You are such a nice person, you ALWAYS put others first, I really admire you for that.
Are you able to take your degree at a later date, when you will hopefully be feeling better??
Scribes can be helpful but it takes longer to do your work when using one. Do you use the DRAGON software in all of your lessons??
I too find it really hard to concentrate due to pain levels etc. I ALWAYS seem to be day dreaming lol.
I am suprised that you can go to uni, it must be really hard for you. Your friends/carers etc sound really helpful, it's times like this when you find out who your true friends are. I am unable to go to school due to the horrible pain I am experiencing and also the mobilty issues, my school doesn't have that many ramps etc, so it is hard to get my wheelchair in.
I am hoping to start home tuition or online schooling soon. I feel like I am missing out on so much of my education. I have only been to school 22 days since March!
I wish I could help you more, Frogga
Take care and let us know how you are
Thanks for everything
Love Alison

Hey sweet Frogga,

You know I understand why you don't want to do the hospital bit, but please think about it but ONLY go somewhere where there is an extensive knowlege about RSD/CRPS amongst the staff.
I truly, truly think you need a massive overhaul of all your meds but it must be done under supervision.
Anyway Rosie, I don't want to tell you what to do but please know it is just because I care and the medical part of me is screaming out that you need help!
Love Tayla

Frogga I hope you remember me...I wrote to you several times about the DBS. My son has generalized dystonia= full body dystonia since he was 10 years old, now 22. He, Jeffrey had his DBS implanted well it will be 3 years this Dec. 20th. Jeffrey still takes minimal medication and continues with botox for his legs only. The botox has gone from every 3 months to every 5 months. Jeffrey is doing great with the DBS!!! He no longer needs assistance with walking, upper body spasms are gone and he is standing TALL!!!

I remember you wrote about your Doc questioning the DBS with your case but it would not hurt to get that second opinion from your friends doctor at all. Heck I would be going for not only a second but a third opinion if you can.

I understand how hard it must be going to school. I watched my son struggle through school and his case is not quite as bad as yours...he doesn't have RSD or the spasms you explain but he struggled.

It was very hard for me as a parent to see my son wake up one morning and not be able to walk. Jeffrey and I fought this monster called dystonia, sought out several doctors, different hospitals and treatments. Then came the news of the DBS. We followed the cases of the DBS with the dystonia patients and finally after 7 years Jeffrey decided to take the chance on it. Yes I was scared that December morning when he went in for the surgery but the DBS is amazing! The other factor that helped Jeffrey in deciding if he should try the DBS or not was the fact that his liver enzymes since he was 10 years old have been on the dangerous high level. His Doctor informed us by the time Jeffrey got to be in his late 20's early 30's he might have to be on a liver transplant list because of all the medications he required to keep his spasms at a tolerated level.

I hope when you go to see your friends Doctor you get some good news! Yep it is kinda scary to think about someone going into your brain with wires but the end results if it works is awesome!!!

Good luck with you decision Frogga and if you need any other info or have any other questions I'm sure my son would be more then happy to answer them. Hugs, Jewells

oh by the way here is a link for you to go to www.dystonia-foundation.org they have info on the DBS and also can answer questions for you if you write to them.

Frogga,
The information that Jewells gave you is really good. If you feel like you need to see another doctor then please ask for a referal.
DBS is supposed to be really good at treating Dystonia, but I must admit it sounds really scary.
Please let us know how you are and what you have decided to do.
If you need anything I am here
Take care
Love
Alison

Thanks everyone - Sandel you always come up with amazing information - thanks so much! It makes me feel so much less alone knowing that someone else is dealing with similar issues. I find the only way to cope is to try and keep going - it's really my degree that does keep me going. I love being at uni, even though I've spent most of this semester bed bound all my friends are in and out of my room all day so I see people every day and I think that has made a huge difference. I've been bed bound at home before and that's much harder because you never see anybody and all you have to think about is pain, pain, pain, pain, pain.... well, you know!!! xxxxxxxxxx PS DBS = deep brain stimulation

Ali - Thanks babe, well, I use dragon and I have scribes. You aren't using dragon anymore are you? I find it pretty useful. It's hard not being able to be in school - I was out for a while when I was younger. It's also difficult not being able to see your friends and stuff - that's why I love living at uni. It's great. I hope that home tuition is sorted out for you soon - I have lots of information on it so I will send it to you at some point. I have been working as an education advocate for a while so if you need any help getting the HT then just ask. xxxxxxxxxx

Jewells - Thankyou!!, yes I do remember you and I am so glad the DBS worked for Jeffrey. My dr wouldn't do the surgery as with the ANS problems I already had etc he felt it would be too dangerous to me but I'm going to ask again anyway - there's no harm in asking and if it means that it would improve my quality of life then it is worth it. I am going to have a baclofen pump put in in January which might hopefully control the dystonia abit more. xxxxxxxxx

Tayla - as ever babes, you are amazing xxxxxxxxxxx I just have rubbish doctors and am in a rubbish medical system - grrr..

So... well, all the same issues continue, as the weather gets worse the pain gets worse. However, I was able to spend 10 minutes at 105 degrees on Friday which was the first time in months! and was able to do it without passing out (though I did try and do too much by going to a lecture I wasn't well enough to be in and nearly passing out, ended up leaving 20 minutes in - oops). The ANS stuff doesn't appear to be as bad at the moment which is great - but I think it's because I'm learning to deal with it better. I've been working at getting my blood sugar more under control and I think that's helping things! It's just hard as I have so many problems eating to try and normalise it. Having to get used to lots of cups of tea with tons of cinnamon and sugar! Been invited out on a date next week and am abit scared about it.. but the guy is really, really lovely! He's called James, he's a 2nd year Chemical engineering student, 6 foot 3, broad, dark hair, rugby player etc... (I know.. they're my type of guy..) I think the date may end up being eating food in my room, but hey, will still be fun - not sure that I can cope with going out with a guy that I barely know with hime having to control my wheelchair, feed me etc and deal with me passing out if he does anything wrong or if my RSD is just being difficult. At least my friends are used to it and are now almost blase about catching me if I'm passing out! lol...

Well thanks very much guys

Much love

Frogga xxxxxxxxxxxxxxxxxxxxxx

PS anyone know whether there are any safe drugs (for RSD) which can be used to stop periods - I have to have very personal care done and my GP is concerned about the risk of DVT so won't put me on anything at the moment because he's scared of causing damage.

Hi Frogga,
Many thanks for all your help. I only use the Dragon software now when my arm hurts a lot.
I would be more than grateful if you could sound me the information on Home tuition. I am missing school alot, I even miss some of my tutors lol. My friends come and see me every so often but its not the same as been at school with them.
Take care, honey
Love
Alison

Hi again Rosie,
Forgot to say, Good luck with the date. I hope everything goes Ok and that you get the man of your dreams.
Love
Alison

Hi Ali,

I will try and find the stuff on HT and send it to you....

Date - well he came over tonight to see me and it was great - he seems really cool. He's planning on trying to take me sailing! He also bought me brownies - shame I could only eat a tiny bite as they have too much dairy in for me but after he'd gone to all that effort... well... you know! (and I hadn't told him - wasn't exactly my plan to go "Hi, I'm Rosie.. this is my list of medical conditions which means..... and so no dairy!" oh well. Don't know if he's the man of my dreams - but he's definetly interesting... so we'll see.

Hope you are feeling better!!

Love

Frogga xxxxxx