Rachel Cox

Hi. I'm new here ...Glad to find this site.

Welcome Lynnie! I'm glad to have this site too. I have had so many questions answered and feeling validated here. I hope you will rally and find the right doctor to help you. You are incredible just to keep going in the face of your daily struggles. Stay strong mentally and always, always hope.

We think my Mum may have had this. She used to have weird 'turns' and struggled with some of the same issues as me. She passed away before my diagnosis, so we didn't get to find out. I know she had really low blood pressure.

I wonder/worry about my children, my daughter is seven and recently fainted.

I use it as a salad dressing too. equal parts ACV and a good oil (avocado or olive), then a few drops of flax seed oil. If you want a 'creamy' dressing you can add a teaspoon of tahini to the dressing. It's made from sesame and gives a nutty flavour and a creamy texture to the dressing. mmm-mmm!

I am grateful for the most heavenly mattress ever created. For my gorgeous family. For the sweetness of a 'gentle cuddle' from my five year old boy when I am feeling terrible ...and the laughter we find as a family, in spite of all the challenges. For my lovely husband. So grateful for him.

I'm grateful for this forum and for my laptop.

Grateful too that I wasn't born in the middle ages, the middle east or middle earth.

Oh, scratch that. I was born in Middle Earth!

I would love to do reiki. Apparently they won't do it if you have a pacemaker. I had it before mine was inserted and it was a beautiful thing. Feel sad about not being able to have it again. I am afraid to have acupuncture because it feels like so much is at stake and I don't have the physical resilience to cope with something/someone that might not be exactly right. How can you ever know if they know their stuff?

yes to all for me. I also notice that when i am having my worst dysautonomia symptoms I have terribly bad sebhorroic(sp?) dermatitis on my head and behind my ears. Unfortunately, ketoconazole (only thing that helps it) is contraindicated with mestinon. bummer. so i am a flake in more ways than one! tee hee!

...it started long ago in the garden of eden.... (in terms of us all being related in some fashion!)

Isn't that a lyric from a song?

Yes, happens to me. I don't know why but i do wonder if it is somehow connected to autoimmune stuff. they are going to check me for a thymoma and i think this throat stuff can be related to myasthenia gravis and lambert eaton myasthenia... maybe even srojens?

Don't give up. Let your fingers do the talking and start emailing any doctors within the radius you can get to. Call to get their email addresses. Just don't give up, be clear and concise with all your data, you've got lots to go with. It's so disheartening. You need help and you owe it to yourself to make a big noise, even when it is soul destroying. Keep at it Robert. You are worth it.

Sounds reasonable. I can see patterns across my life looking back (am a lot older than you) and some definite flare-ups and fine periods. I actually found it a huge relief when they gave me my POTS diagnosis, because it made so many things make sense. It helped me to be much kinder to myself.

Postsyturvy, that would be seriously worrisome. Would create a 'poo pocket'. That would make me pacicky!

...I secretly think these experiences lead us to planes of greater clarity and, in turn, we become superior humans....yes? Ha! :-)

bahahaha! we are the master race!

I don't have the luxury of rehab cardio training (that would be the best pathway)... so I had a personal trainer devise for me a program that was not posturally challenging and he monitored my heart rate as I went. Progress was slow but encouraging and that was when I was feeling well. Right now I don't think I could do any. I wonder if there is anything out there that explains rehab exercises that could be done from home, even while lying down? Resistance would be key I imagine. Good luck with it POTS Dad. What a lucky girl to have a Daddy like you who cares!

Oh, sorry to hear that Sheila. My two cents worth:

It is so important to try see the drama for what it is and not attach emotion to it. If you were looking at it from an outside-the-friendship pespective, how would you describe the problem? Probably something like 'x feels like y doesn't care about her anymore, but y does. Y has limitations that make it hard to meet x's needs at the moment'. Then reframe it for your friend. She just needs to know you care, you are not mad, but you are struggling. I suggest all you need to do is communicate that to her. If she doesn't respond, just wait a while and when you next think of her/ can manage it, try again. Sweetness is a good thing in conflict. You clearly care about the friendship, so don't give up on it. Just don't let it upset you when it is temporarily de-railed. You two will find a way through... the pathway is usually built with kindness. All the best! Keep us posted.

Was just going to ask the same. I got taken off Midodrine because my bp became really high (among other things). some people respond to steroids with high blood pressure too.

Oh Katy! I hear you! Awful awful times. I always remember vividly the reaction when one of my high school teachers crapped his pants. You can imagine how compassionate a bunch of seventeen year olds were. Poor man. Maybe my experiences are karma. It is so incredibly cringe-making!

Email them all! it's my new best approach. Appeal to their intelligence and ask them for help... see who will take you on. i hope you find someone soon who will be good to you. It makes all the difference in the world.

I am truly sorry that you are having such a sucky time. That doctor doesn't understand the most important things about his practice. All the best in your search for better.

Hugs.

I just want to share my joy at finding a truly lovely doctor. When I first met him, he was unsure about POTS but courteous and thoughtful. I see him through our public health system and so it was some time before I saw him again (you can't just book in an appointment). In between visits I had been back in hospital and had developed worsening symptoms. I was feeling so incredibly despondent. It so often seems like your life is disappearing an no one cares.

I got onto the forum and did some other research, some wonderful messages of hope flew back and forth from various people (thank you if you were one of them!) and I felt very welcome and included back here. The information I found was burning my brain and I was desperate for some help/action/movement from someone who could do something about my situation.

So I emailed my doctor. I was just honest and laid out what I had found out and what I hoped. I told him I didn't want to be an annoying patient, in fact I didn't want to be a patient at all. I pressed send and thought 'now I've done it. He will think I am a crazy lady and pass me over to someone else!'. He rang me at home that afternoon. He explained that I currently knew more about my condition than he did, but that he had access to even more information and would educate himself before our next meeting. Bless that doctor... he is so busy, but he has continued to call me and remind me that he is 'on the case'. Hand on heart, there is nothing more I could hope for in a doctor. Simply to know that he has remembered and is thinking about my problems is something extraordinary.

So, I live in New Zealand. We don't have an autonomic testing facility here. It has been a long time since my original diagnosis without definitive evidence of why my body is doing these strange things. At my last visit with my doctor, he gave me a beautiful synopsis of autonomic dysfunction (nice brain he's got) and told me that he was sending my bloods all the way over to the Mayo clinic. He has been in touch with other doctors, including an immunologist. I am also to have a CT scan to look for thymomas. He has put me on Mestinon.

I think it must be hard being a doctor, listening all day to problems. Some of which you can solve and others which require an awful lot of tenacity and tolerance. I think bad doctors are doctors who don't care anymore. Good doctors, who care, still exist and I am happy to say, I found one!

My husband and I were so thrilled, we thanked our lovely doctor and he was very cautious "no, don't thank me, we haven't found an answer yet"... and yet, we have. We have found someone who cares about looking for an answer. In my book, that is about as good as it gets. And that is enough for me!

@Giraffe: I thank you for sharing your tale of the Rogue Poo! Bonding through horror! Yes!

Glad Rogue Poo could help ease the sting of the pooper-pus-problem. How is this for murphy's law.... my son is finally out of nappies, right when I need to get back into them! bahahahaha! Any other horror stories out there? Sharing is caring!

R ;-)

Ah. Brave and lovely people, it is a tonic to read what you have written. You all inspire me and make me feel like this road is no lonely path, even if it feels that way sometimes. Just sharing the road with you guys is really helpful to me.

i can trace my symptoms back to 11 years old... so there has been weirdness now for twenty seven years. I have had periods of 'normality' but right now it's not so 'normal'. I feel very sad for my family sometimes, and very scared for me sometimes too. However, my recent success with Mestinon is giving me real hope. I need this to work on every level!!!

Here's to us. We are pretty amazing really! Shame the world doesn't always see that, but just quietly, we rock.

Au contraire! I think PACICKY is a new word, for that feeling you get when you know something is wrong with your arse! Poor you and poor your patootie! Hope you are feeling relieved.

I know it won't take away the sting of that awful discovery, but I had a very embarassing situation recently that might make you feel in good company.

Went to a cafe to meet a friend I hadn't seen in ten years. I had recently developed significant issues with intermittent urinary retention/ incontinence. I was horrified by these things and as we talked, my synopsis of my current situation degenerated into a discussion about my bladder

She delicately enquired whether it was just my bladder and I replied, "yes, thank goodness!".

Then, I noticed this horrific sewerage smell.

"Ugh, this place has some serious plumbing issues" I said. Rolling my eyes, suspecting (stupidly) nothing. Not a thing. Eventually the smell became unbearable and I suggested we find another cafe. We did. The smell did too.

"Wow, the sewerage lines must be causing problems around here, big time!". We gave up, said farewell. She beat a hasty retreat. Still, clueless, I got in my car. The smell in there was even worse. And then, slowly and painfully, the truth seeped into my brain.

Crap.

Mine.

I haven't seen my old friend since.

From now on, I will know that any pakicky feelings are a sign to beat a hasty retreat!

At least anal abscesses are more discreet! tee hee

Yes, I can relate to the motion sensations. I call it elevator head. Also when I lie down at night I have a sensation like I am in open space turning in giant somersaults. Like I am a whale swimming in the ocean. Never told anyone that one, so no laughing at my 'unicorn' speech okay! it calms down if I put one foot out onto the floor, but I can't do that for long or the foot goes numb.

My doctor calls it a 'try it and see' drug, as it is different for everyone. I know it has helped my dry eyes and mouth immensely. Still early days but I like life much better with mestinon. I have a new prescription for an anti-nausea which should help. Has anyone tried domperigon? (Sounds like champagne! if only...!)

I was always fine with painkillers. I had pethidine with no problems whatsoever. But three years ago when I was in hospital for my pacemaker insertion, they administered morphine for the pain. As she was pushing it through the syringe, I felt mildly itchy- then within seconds insanely itchy (I know this sounds weird)... right on the inside of my skull. I felt like tearing my eyes out so I could get to it. Horrible horrible feeling. They hit the alarms and people came running, my mouth swole up and then.. I felt very very far away. Like i could see everyone from the bottom of a swimming pool. I could hear them but couldn't talk. They put something else into my iv line and I was fine. Felt like I had been hit by a bus, but i was fine. Now I won't go near morphine. My husband says that more than any other event in my health history, that was the one when he thought I must just pop my clogs. He was very frightened. What I don't understand is why I tolerated morphine related drugs before and then suddenly reacted. I think that is odd.

Thanks Corina, today is not so great but I am still positive. I guess there will always be variation as much as I want mestinon to be my magic bullet! Do any of you take an anti-nausea with mestinon? which have been effective for you?