Rachel Cox

Short cycle, high dose. Thanks for responding LMG and Lumpchp.

I've always had this problem too, but I don't know if I have mast cell problems(?)... I have always put it down to my body's difficulty in regulating temperature. If I am in the shower and I shave my legs it has to be at the end of the shower, like Katie. I think this is so that my skin has time to calm down from being goosey. I also make sure there is zero draft in the bathroom because even an extractor fan generates draft which makes my legs go goosebumpy. When my skin is goosey I can shave the top off every follicle and only realise after the fact. I guess this is why lotions and potions aren't happy either. I find leg-shaving and other shower tasks so difficult in general and showers are exhausting. Wouldn't it be fairer if one of our symptoms was an absence of HAIR!!!! I would like the universe to be kinder on this front! In leg-burny empathy....

Sorry everyone... I seem to have postd this twice and I have no idea how to delete it!

Hi, has anyone here taken prednisone for their symptoms before? I have had fludrocortisone before but not tolerated it well. I am a little anxious about side-effects, but willing to try anything the doctor suggests. Any comments?

Hi, has anyone here taken prednisone for their symptoms before? I have had fludrocortisone before but not tolerated it well. I am a little anxious about side-effects, but willing to try anything the doctor suggests. Any comments?

Hi, I have been trying to find out about it too, after a neurologist told me I have it. He said it was progressive and there was nothing they could do to fix it, just management of my symptoms. I would love love love it if someone could point me in the direction of information which says it is self-limiting or can resolve itself!!!

Subsequently my doc has told me that IVIG therapy is only helpful for people who have a sudden onset. I have been having symptoms (which I was told in my original diagnosis were POTS)... since I was 11, so he said it won't help me. Sad about that. Just recently he has suggested maybe going on corticosteroids? Anyone else tried that?

Hey, Leydengs, thanks for your response. I am going to see my nutritionist next week. She has given me digestive enzymes to take with my food too. I am hopeful that she will be able to offer more help. Last time I saw her she said she needed time to do some more research, so that is a positive step! She follows the Dr.Libby method. http://www.drlibby.com/ which is all about balancing the hormones to support health naturally. I am hopeful! I wish you all the best for your quest to find a good nutritionist too. I just reached a point where I thought, 'may as well see how I can help myself through what I put into my body'.... it's about all I can do! Nice to have positive action though.

Learning how diet and nutrients affect our health and reading doozly's info on mast cells changed my life. Learning all the different types of dysautonomia / pots, all of the chemical interaction "theories" or all the medications isn't necessary for me.

....

Ps. Sorry for the book. Lol

Hiya! I have been seeing a nutritionist who seems to know more than most people I have seen about the ANS and all that stuff. She said my cortisol is frighteningly low so I am waiting for my next appointment with her to see what that means(?) and what is next from her. She's got me GF and DF and I am hoping to see some results. So far I have been GF and DF for six weeks but I am still suffering terribly in my tummy. How long should it take before I see a positive change, if there is going to be one?

Please never apologise for the 'book'... I LOVE BOOKS! Every word you guys write is helpful and gives me more hope, I appreciate them all!

Some of your symptoms sound exactly like what I have been through.

So nice to hear that. Also nice to hear that you have a treatment plan that sounds logical! Thanks for explaining it to me in normal words. ;-)

I am trying to keep working. It's only part time but it means a lot to me to maintain a presence, and I love the work. On a work day, I have to not eat anything from when I get up until I get home because the post-prandial bloating is so very difficult to deal with if I have to move around. I just drink lots of water and hope for the best. It is exhausting though and I am often tempted to give up.

Hi there, I'm kind of new to all of this talk also.

Nice to meet you! How did it all happen for you?

To summarize, there are some fundamental theories as to what causes POTS.

Dr. Stewart advanced the idea of high levels of angiotensin ii on the assumption that an overactive sympathetic nervous system tends to produce high levels of angiotensin ii. However, the flaw with this theory is that only a few of his POTS patients exhibited measurably high levels of angiotensin ii, and losartan (which is an angiotensin ii blocker) does not seem to be a gold standard for treating POTS.

Dr. Levine advanced the idea that a small heart size is responsible for producing POTS. The flaw with this theory is that POTS seems to strike later in life, and is not typically seen present at birth or earliest childhood years. Additionally many people with POTS have a normal stroke volume and heart size as measured by other studies.

Dr. Bayles advanced the idea that reduced levels of norepinephrine transporter protein is responsible for POTS. This has the most evidence as studies have shown that blocking NET (norepinephrine transporter) in healthy controls produces POTS in them (That is, they get the rise in heart rate upon standing.) But he did not advance an idea as to what causes this reduced NET. He did rule out mutations as well as methylation. He suggested perhaps a cytokine/inflammatory role.

A recent study out of the Mayo Clinic identified autoantibodies to the heart in POTS patients. This might be the underlying cause of the disease.

POTS seems to follow a lot of the same traits of other autoimmune illnesses. It has a higher incidence in women (who are more predisposed to autoimmune illness). It has a flare up/remission cycle in some patients (similar to other autoimmune illnesses) and it's triggered often by febrile illness or pregnancy (similar to other autoimmune illnesses).

Oh YES! Thank you, new hero! That is very helpful I so appreciate you taking the time to respond. I have always felt there must be a reason for all these things to be going wonky. There must be a CAUSE. It's nice to see that the medical community is looking into it.

I had one doctor say to me "see now, if you had something more common, like MS or Parkinsons, more people would be interested in helping, more research would be getting done because more pharmaceutical companies would see big profits in finding a treatment. I think you shouldn't get your hopes up" ...thing is, if I don't get my hopes up it all seems rather bleak. That's not a nice way to live when there are already lots of things keeping you down.

Thanks for sharing about you!

As they say down here in our little bit of the world: Kia Kaha (stand strong)

There are blood tests that isolate the types of antibodies you have in your bloodstream - these blood tests will indicate whether or not you have an abnormal immune response that is causing the dysautonomia. I encourage you to explore this option. I read a lot of posts and often wonder if some of our members actually have an autoimmune dysfunction instead of other syndromes.

Oh, thank you for responding! Yes, I think my general physician thinks that the above is the most likely scenario. I've had some tests (AVA and ANKA...? but I am working off a fuzzy memory for the names of those tests). Both were fine but he thinks there is more to explore. Nice to find someone else with some hardware! It always wondered why more POTS people don't have them?

Hello dear Dinet people,

I am deeply impressed with your collective intelligence!

When I was first diagnosed with POTS three years ago, I made a little tentative toe-dip into the world of dinet. I didn't stay long back then. I was more than a little overwhelmed by the easy way everyone seemed to toss tricky medical terminology around. You all know so much about so many complex things! I didn't want to have POTS and I figured I mustn't ...simply because I couldn't understand it, so I thought if I ignored it and left the forum it might go away. Ha.

I am back. Things have progressed with my delightful body but this delightful brain is still not progressing into an easy understand of all things dysautonomia.

Since I was last here there seems to be more chat about auto immune stuff and something called mast cells. Some people are into vitamin D and lots of you have Sjrogen's. These things are all new concepts to me. And I still don't understand how it works together.

I have learned a couple of new (and useful) terms for the joys my tummy brings me every time I eat. Gastroparesis and intestinal dysmotility. And the lovely urinary retention. So I have my head around these things...

but OH MY! You all know so MUCH about different tests and what they mean, all the jargon. Blows my little foggy brain off into the wild blue yonder!

Please can you help me, medico-moguls of the potsy/dysautomic planet we call home?

I need a kind of a 'cheat sheet' explanation of the new things above. Preferably in normal English.

And I want to know if there is anyone like me? Pretty please?

I am in New Zealand. It's beautiful here(!) but very isolated from any expertise in autonomic problems.

I had asystole on the TTT and they put in a rate-drop pacemaker to stop my heart from stopping and prevent me from fainting. No one else here seems to have this...?

Apart from the dizzy/ foggy/ headachey/ exhausted stuff, I have autonomic dysfunction of the stomach, bowel and bladder (not pretty stuff and I won't give you the ugly details!). I have problems with my eyes (focal spasm and a permanent flickery disturbance in the vision on the right). My throat hurts every night and feels dry as a bone, even though I am drinking water like a fish. After a recent stay in hospital for the tummy stupidities, I saw a neurologist who said I don't have POTS but 'pandysautonomia'. I have a lovely general physician who is trying to find some things out for me...

So although I would like to run away again, I think you guys might be just the sort of people who can help me to understand what is going on with me! Are any of you like this? Can any of you volunteer to be a guide?

From the impatient patient,

Rachel

Hmmm.... I am a bit brain foggy tonight but this might be useful (?).... My nutritionist suggested that these night terror/sweating episodes might be explained by the idea that the liver is de-fragging (sorry, my term, not hers) around that time of the early hours of the morning. She said it happens at while we sleep because the process is so exhausting we wouldn't cope with it if we were awake. Something about toxins (or was it hormones?) being released into the blood stream at that time.

I have also heard that if you have excess oestrogen that can cause night sweats.

But best to google it if these ideas ring bells for you. Just thought I would share in case it is useful.

Yes. It's true, it takes away so many of the best bits of life. I feel like my career has stalled when it should be flying. I want to experience life fully, not through a fatigue of fog and dizzy craziness. I want to have some energy for my kids and my husband. To get things done around here and to be able to start a job and finish it all in one go.

About a year before I was diagnosed my cousin's husband had an accident on the rugby field, it broke his neck and now he is a quadriplegic. I have some very crap days and when I do, I try to think of him and how lucky I am to be able to hug my children still. To feel the warmth of my husband in bed beside me and be able to feed myself, toilet myself and dress myself. Even if it is slow, painful or totally frustrating. I have lost much, but not as much as could be lost. I don't think we have to be grateful for losing what we have lost, that kind of 'graciousness' is beyond me! But I am grateful for all the things I have still. I hope that you find some things to bring sunshine back into your world.

Hi, yes I do! I am in my thirties and I have this problem. I had a urodynamics test done (they catheterise the front and the rectum and then as they fill your bladder, the machine you are hooked up to measures the pressures etc... then you void on a flowmeter pan and they measure again; testing pressures when you cough and strain as well as normal). The urologist said that my detrusor muscle doesn't work properly which is consistent with autonomic dysfunction. I often have to strain for a long time to go, sometimes I can open my urethra to pee but not always. Recently I have been taught how to self-catheterise and it is a huge relief. I am able to empty any residual before bed and again in the morning. This means less UTIs and so it is worth the effort (and initial emotional distress). At first I didn't want to accept it, but ultimately it is one of the things that I actually CAN DO to improve things. I can do it for myself and that is more than for many of the other issues. It's a fix, you just gotta look at it in that light. Self intermittent catheterisation is an easy and inexpensive thing to do. Is there a local nursing service that could teach you how to do it if you doc thinks you should? Sorry, I don't know much about how your medical system works. I am on the other side of the world!

All the best with your bladder, I know how very distressing it can be to struggle with these symptoms every day. Thinking of you.

R

Thanks Sue, I will look into those and see if that info can help. So good to have this forum!

oooh yes, I can relate to the constant nausea in pregnancy. i have managed to have two babies :-) both born early due to increasing difficulties during the last trimester. But both of my babies are healthy and happy children now. I am so thankful to have them in my life, they give me a reason to push myself when I feel like stopping... ultimately that is the most helpful thing in the world. My mummy-motivation keeps me going. All the best with the conception/pregnancy/early years. Never give up. Motherhood is the most valuable experience I have ever had.

HI, I am 37. I have just been diagnosed with pandysautonomia after being told for the last three years it was POTS. I am unclear about the distinctions between both and finding any research I do really confusing.

The doctor tells me I don't have evidence of autoimmune problems, so I don't think I can try IVIG.

I have vision problems, dry mouth, othostatic intolerance (and a rate-drop pacemaker after asystole on the TTT) a barely functioning detrusor muscle, neurogenic bladder and recently more episodes of gastro involvement (pseudo obstructions and painful distension) and numb/ tingly hands and feet. He said it is progressive but i can't find any information about what that really means for me... he also said he has nothing to offer in terms of treatment. What will happen to me next? Will I become entirely incontinent? What about breathing? I have so many questions! Do any of you have any ideas for me? I feel like I have been set adrift in a sea in a foreign land. What is the prognosis for this? All I could find on the net was prognosis information for auto-immune pandysautonomia... I don't know where to look next.

Hopeful Rachel

Every day, a little better. Got started on midodrine at the hospital on Friday and hooray, the doc says I can come off fludrocortisone. I am SO happy. The midodrine seems to be helping too. though my BPs have been quite high. I am borrowing sunshine from the 'happy house sale news' and spreading it all over everything else!

i hope you are all getting some sunshine too. thanks for your replies!

I have a friend who makes the world's best brownies. I pay her to make me a batch and wrap them up in gift wrap. They are always so well received. Doctors are so busy, they can buy food any time but rarely get to eat home made baking. It's a little thing but budget-sensible.

Hi Sue,

grief is a terrible thing. Western cultures do little to help grieving people, it's not a clear state to be in, no one knows unless we say it and no one seems to care, until we do. And you did. What a beautiful way to honour your brother, to remember him on the forum. Now I feel like I have met him too, i'd love to hear more about him.

I lost my Mum couple of years ago. I felt like she was the only one who was ever in my corner, loving me unconditionally, interested in me no matter how much I went on!

I miss her so much. I found some of her Christmas tree decorations the other day and wham. I was hit by a "SUG" (sudden upsurge of grief). When those sugs hit, it's as though I lost her yesterday, not three years ago. I am reduced to a sobbing little girl who wants her Mummy. I understand about the terrible losses you are suffering. it is so unfair and so scary. There are just so many times you need to say something to the person you have lost. I hope your brother and my mum can hear it anyway, I just talk out loud and hope that she can. Sometimes I write to her.

Christmas time is a good chance to let ourselves cry. I think those ads are doing me a service. I am certain that the more tears i cry, the closer I get to happy.

I am thinking of you Sue. You are not alone, we are all here.

Rachel

No insights (sorry) ...but I share your frustration. I too find that if I really push myself to be more 'up and about' that it is better in the long run. I get about an hour of feeling 'better' at 11pm after a day of making myself do more than I thought my will could cope with. On the days I just can't, I feel worse.

I have seen a few people post about vitamins on here. What is the rationale behind taking supplements? I saw a documentary which said that taking any supplements that aren't present in foods or in their own natural form is almost useless to the body. Anyone else got some info on this?

Wishing you some answers!!

Rachel

I have just come off fludrocortisone. It was hard to tell if the headaches were the same as before or not. But did I have headaches when I was on it? yes! I have also gained weight and my skin has really deteriorated, I don't know if these things are related to the drug therapy or the POTS itself.

The most alarming side effect of the fludro for me was that my eye pressure increased significantly when on it. Such that my optometrist was really worried I would have permanent damage to the optic nerve. When I told my cardiologist that he told me to come off it right away. Today is my third day without fludro and I am now on midodrine. the optometrist also said taking steroids puts you at greater risk of developing cataracts. Anyone else heard this?

I just have to share!

We had some good news today.

I haven't been able to work for the last six months, which has been financially tough. Just before my POTS laid me out sideways we bought a new house. Our budget was based on income from me, two homestay students and my husbands work. Without me working it has been really tough. We put our house on the market and it was passed in at auction... then, tonight, out of the blue, an offer! I am SO RELIEVED!

I just wanted to share 'cos I know that so many of you on here really understand when things don't go right for me... and it's nice to be able to report something that HAS gone right for me.

I am new to the forum but I have been so grateful in the short time I've been here, for all the amazing advice and heart you have shared with me.

Just wanted to share my ray of sunshine from today with you all!

Rachel