lauralulu

Summer- I have been taking it since April 9th. I had wondered about possibility of taking florinef too, as I know it helps with retention of fluid and thus blood pressure. I'm just waiting on some blood tests because I'd asked about DDAVP, due to my constant feeling of dehydration, thirst and urinary frequency. I think they are testing me for diabetes insipidus, but can't be sure, the nurse had never ran those tests before. If I can take the DDAVP I believe it will have a similar effect as florinef in helping with retention of fluid and thus raising bp, so just waiting. If I can't take that then I'll email my pots dr and ask about florinef.

As an aside, does anyone else get really nervous about actually SUGGESTING meds to your dr? It's like you're saying 'hey, I know better than you, I want medication x, write me a script!' lol.

Dizzy me- wow those are very low dosages, I'm going to ask if I can try a smaller dose like that as half of a 25mg pill is too much for me at the moment. It's good to know they can come that small! :-)

So, I finally got diagnosed with pots on 9th April and was given a 25mg dose of atenolol to try.

I've been feeling incredibly wiped out and fatigued, and upon measuring my bp, realised it's gotten lower than is usual for me (around 80 something over 50 something).

I tried halving the dosage and then even went to taking the half dose every other day. On the days when I DIDN'T take it (in the evening btw, prior to going to bed), I had a lot more energy.

What I like about the bb is on it, I feel more comfortable when standing. I don't get that weird sort of 'hyped up/can't relax' feeling and the symptom that I really hated, the muscle jerks and feeling of needing to constantly fidget when trying to relax, was gone. But the cost is feeling constantly tired and dopey, which I don't like.

My pots dr wrote to me and my Dr saying if I don't tolerate the bb, the next med to try is a calcium channel blocker, extended release.

I'm just wondering, why these tablets first when both lower BP? And aren't calcium channel blockers usually poorly tolerated in people with pots?? I have my reservations about changing medation if it's only going to make me feel bad in a different way. Maybe I should be more optimistic and think, it could be the one to make me feel better! I just seem to be sensitive to meds and often the side effects seem to outweigh the benefits. I think overall, despite many unwanted symptoms, I was doing better without medication... BUT I'm kind of reluctant to have back all those other symptoms I've been enjoying doing without.

I don't really know what I'm asking here, as no one can tell me what's going to help and I suppose if I want to have some symptoms controlled/masked or whatever, I've got to be willing to go through the trial and error... I just feel very wary as I hadn't expected a calcium channel blocker to be one of the things for me to try. I'm not really sure how that's suppose to help, so if anyone more clued up can enlighten me...?

Yup, I've always fidgeted and wriggled, without even really realising it. I noticed since I started on a BB I can stay much more still now.

I was telling my college tutor about how I need to fidget/shift around when standing and that it's a subconscious mechanism and that I can never stand still. She said to me 'You never SIT still either!' I hadn't even realised I was that bad, but there you go.

Amazing what we do without realising it to help ourselves!

Here it is:

http://www.casttv.com/shows/house/the-choice/o90e0x

That's awesome! I'm so happy for you!

Wow, I am so sorry you have both been through such awful and frustrating appointments! What a nightmare, it's bad enough as it is waiting for these appointments and needing the treatment without being told rubbish like what you guys have been told. I'm so annoyed for you!

Ahhh Julie- that is SUCH a darn shame!!!!

I hope you find something else equally as effective with twitchy eyes and burny shoulders!!! xx

So- how are people doing now with their turmeric? I only just started taking it and already I seem to have more energy! I try coq10 at first but found that affected my insomnia too much. So far so good with the turmeric!

Well, so far I love the salt! It is tasty and HEALTHY plus the big crystals I ordered came in a lovely attractive grinder- so it looks good too! hehe.

Good question, I'd like to know too!

Wow- extremely interesting! I've got little red marks on me in places, maybe one or two- one that's come up recently on my hand that hasn't always been there- not sure if it's the same kind of red dot you're referring to. But the whole theory is very interesting- love to read about things like this- thanks Sue for sharing!

Good luck to you Cat Lady and Sunburnt Land!! I think that's great you feel in a position to at least give it a try! Don't see it as a failure if you can't, just as you finding out what you are and are not capable of. You never know, you might surprise yourself! And if not, well there's no shame in that, at least you gave it your best shot!

I've never worked full time myself so have no idea if I'd be able to, but when I am done with night school (getting a childcare qualification) I'd like to get a part time job for 3 days a week, and work from home at something else the other two.

Keep us posted how you get on- I'll be keeping my fingers crossed for you and praying for a positive result for you both (and anyone else in the same boat!) xx

This has always happened to me off and on..but more often recently. I can be sitting or laying completely still and I'll just feel a weird kind of jolt like feeling go through me. Sometimes I get really dizzy for a few seconds when it happens, but then it goes away. I literally jump when it happens. (Like when you're watching a movie and something scares you that you're not expecting? A 'jump' like that). It's really strange and hard to explain..I'm just wondering if this happens to anyone, or if anyone knows what I'm talking about. If so, does anyone know why this happens?

YES, I get this a lot! I get it over and over again too. My legs will jolt or my upper body. It's a really horrible feeling and I have NO idea what causes it.

I too have seen and found great value in the video you made Jeff. So very sorry for your loss. I know so many people now who are doing what they can to get the word out about dysautonomia and raise awareness. I feel that your lovely sister's light will be watching over us all. Thank you for writing here, for making the video, and once again so sorry about Brittany, she truly was a bright, shining light but like you say, she will continue to be that, just in a different way now.

Ooohh nooooo! Both wrists in plaster, not fun! Hope things start going your way SOON! Your story sort of reminded me of the time when I sprained my ankle while my wrist was still in plaster. I had to try and get about using just one crutch!

All these breaks, sprains and discolations though- poor you- I hope you feel much better very soon! xx

Congratulations xx

How are you doing on your search? Have you been to see the (was it Sheffield?) cardiologist? xx

Aww, sorry it's made you feel so bad. The cardiologist I saw was infuriating! He diagnosed me with IST and basically told me to put weight on and forget about it. I've got an appointment with Julia Newton in April now. It's a day before I am flying abroad though so I'm hoping whatever tests they run won't make me feel too bad afterwards as I'll have to get up early in the morning to get the train to Newcastle on the Friday, then on the Saturday will have to be up in the early hours to fly at 7am. ARGH!

Hope you recover soon! xx

Hey Janey! Silly me didn't even realise you were getting your tests last month or I'd have wished you luck!! I hope you get some answers from them and more importantly, some helpful treatment! xx

I'm sorry that you're going through such a scary time! Just wanted to send good wishes xx

I had trouble remembering everything too so this time I've written it all down, from when I first got ill, including ALL the symptoms I've ever had, even ones I thought in the past weren't 'significant'. I've also written down which symptoms trouble me the most, when I get them, and what medications and herbal supplements I've taken or am taking. All written down then scanned into my notes. Then I just update it when anything new happens. It's much easier than trying to remember everything, and you couldn't get it all across verbally anyway even if you COULD remember.

Good luck!

((((((HUGS))))))) and prayers

Kelli

From me as well xx

Hi Deb-

Is there any way you can find a NEW Doctor? I ask this because back in 2002, I was experiencing symptoms I couldn't understand and my Doctor didn't believe me either- he put it down to 'stress' or anxiety. Getting a new one was SO much better for me EMOTIONALLY- the Doctor didn't actually help me to discover about dysautonomia but once I HAD discovered it, knowing I had SUPPORTIVE Doctor gave me the confidence to ask for a referral to someone who could run the right tests for me.

I think it is SO important that when you have something mysteriously wrong (whatever it may be) that you have a Doctor who is supportive and understanding, NOT one who just calls you depressed because you (quite rightly) burst into tears out of frustration!

Passing out when feeling calm and relaxed doesn't sound like something anxiety would cause. If your Doctor has 'written you off' as there's nothing more they can do, maybe it's time to find someone else who's prepared to look deeper. NO Doctor should call a worried patient who is only trying to find a reason for abnormal symptoms a hypochondriac!

Yup! It really made my day!

Here's the story behind the emails: I ordered some himalayan crystal salt from http://www.himalayancrystalsalt.co.uk/home.asp. I'd bookmarked the product so when I bought it, I went straight to the product, bypassing the homepage. AFTER ordering the product I was re-directed to the homepage and saw ANOTHER product that sounded useful (sole rocks- you plop them into your water and hey presto- a cleansing crystal salt drink!) which I decided to buy. I ended up having to pay two lots of postage and thought it might be worth a try getting out of the overpayment. As I'd already payed it, I couldn't think how to receive a refund so I looked for a product that was close to the price of the overpayment (some bath salts!) and asked if the company would mind sending me these too.

As I asked in a humourous way, they actually agreed to send me the bath salts, even though I'd only overpayed by ?2.99 due to the weight of the parcel- meaning that I've got the bath salts for ?1.99 when they are in fact ?3.99!

Here's the email I sent them:

Hello,

My name is Laura and I suffer with a condition known as "being dozy" which translates sometimes into making unfortunate mistakes. When I make mistakes that cost money, it might seem insignificant but when you add up the cost of these mistakes over the course of a year, I pay a high price for my "being dozy".

I have recently (within this past half an hour) placed TWO orders with you when I could have just placed one, thanks to this "being dozy". I was wondering (hopefully) whether you might be kind enough as to place these two orders into one for me. If this is possible it will mean that I've payed an extra ?4.99 for the postage if they were coming to me separately, so I'd like to be cheeky enough (my dear Mum would call it 'assertive) to ask whether you'd mind sending me some delightful bath salts also (product code HCS030 priced at ?3.99) so then my misfortune at "being dozy" will only amount to ?1 of overpayment and that I can live with and am happy to pay towards your company in the light of your kindness.

The order details of my second order are as follows: 258802378-92-25-113-19. Unfortunately due to this "being dozy" malarky I do not have the first order details.

If this is altogether too presumptuous and cheeky of me to ask, I will take my "being dozy" on the chin and hope that next time I will be more on the ball. And if anyone tells you to take this email with a large pinch of salt, please just ignore them, I'm sure they are only trying to be funny.

Thanks and good wishes,

Laura

and the reply:

Hi Laura

Thank you for your email which we thoroughly enjoyed. We noticed what you had done (ie. placing 2 orders). With the addition of the jar of sole rocks (your 2nd order) this took the postage from ?4.99 to ?6.99 due to the weight of the parcel, meaning you overpaid by ?2.99. However we have enclosed in your parcel the bath salts you requested so that you are not out of pocket. Hope you enjoy your products.

Kind regards

Natalie Gray

So Natural

www.sonatural.org.uk

HOW NICE IT IS, TO FIND PEOPLE WHO ARE NOT STICKLERS TO RULES, REGULATIONS AND BUREAUCRACY! :-)

Brilliant post Stace!!! <3