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gillyann

Postural orthostatic tachycardia syndrome (POTS)

23 posts in this topic

We are 2 daughters of a 58 year old woman with POTS. She has been bed bound for 4 years and we have had to help her more than any doctor so far, by researching the condition and finding out that a cause can be low blood volume. We found the test needed to diagnose her and we found the hospital with the facility to perform the test and a haemotologist .We also have found a POTS specialist who has knowledge of low blood volume in POTS patients and has decided to treat her with Erythropoietin injections and fludrocortisone .We have had no help from her general practitioner or her original POTS consultant and now would like to hear from anyone who has POTS and particularly low blood volume and if anyone has had these treatments.Thankfully now we have a good POTS specialist who is very sympathetic and best of all knowledgeable.If anyone out there has POTS and has not had a blood volume check they need to get one done as doing so may help get to the root cause of their symptoms.

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Hi qillyann ,

 

Welcome to the group. I never heard of POTS and searched it on line. What I read is quite interesting since my own son has suffered from Orthostatic Hypotension for 5 years now (he's only 20 years old). Even today in the doctor's office his BP was 96/42. The nurse looked at me and asked "is it always THAT low?" I will have to keep tabs on his heart beat when he gets dizzy.....which is usually on a daily basis. He does see a cardiologist yearly and was once told that he would outgrow it. I am still waiting for that day!!!

 

Take care, Everyone.

Margaret

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Hi Margaret this is Marion Gillyann's daughter, thank you for the post to mum we know how you feel its a day to day struggle! We wish you and your son all the best

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Hi Marion,

 

My hat's off to you and your sister for being such wonderful advocates...for your mum.

 

It is so great that you have done what you have to help your mum, especially with such a rare illness, as POTS must be.

 

As the others have posted, I had not heard of POTS...until your thread.

 

Your mum must feel so fortunate to have you and your sister...I wish your family all the best, with your mum's health.

 

Very Special Hugs to you.

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Magaret my 22 year old daughter has suffered with Very Low Blood Pressure for the past 6 years! It has been a long & hard road to get any treatment for her. She saw a cardiologist who has also special interest in 'fainting' & began treating her with fludrocortisone which helped a little ( she had been fainting up to 8 - 9 times a day ) which took her faints down to 4 - 5 a week he then began treating her with a drug called Midodrine (Gutron) and I'm pleased to say that she is almost faint free now. She is aware now not to get up too suddenly etc & is able too manage it much better. She was told at first that she would grow out of it but that seems too be very unlikely now.

Hope you get some answers for your son, it can be so worrying for the family.

 

Jensue

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<<She saw a cardiologist who has also special interest in 'fainting' & began treating her with fludrocortisone which helped a little ( she had been fainting up to 8 - 9 times a day ) which took her faints down to 4 - 5 a week he then began treating her with a drug called Midodrine (Gutron)>>

 

Hi Jensue ,

 

That is interesting that she was put on meds. Gareth was told to take OTC salt tablets....which help some. He has never fainted, though. He just gets super dizzy and his knees buckle on him or he shakes while holding on to the door or anything he can grab. He's on so many different meds, now, I doubt the doctors will add another just for OH. We have been having a hard time getting these seizures under control that started in January. They, too, can cause his legs to go out from under him.

 

Take care, Everyone.

Margaret

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Margaret

 

My daughter had been given salt tablets at the beginning but they made no difference to her. The specialist told us this was because she does not retain her body salts (which help to push up your blood pressure), all we know is that it is related to her autonomic system not functioning correctly. It all had a big impact on her daily life and she couldn't go anywhere without having someone with her, we were just thankful that she had some excellent friends who looked after her while at school and made sure she got from A to B safely.

 

I got information from a charity set up in the UK. If you want to know more send me a pm.

 

Jensue

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Hi Jensue or anyone able to help,

 

Concerning POTS

 

My son is 21 years old and has been unwell since August last year. Doctors are struggling to diagnose his condition. Only through web research did he find that his symptoms closely match some of those for POTS. He has lost >30lb in weight and suffers from increased pulse and severe dizzy spells on standing (lots more symptoms). His general practitioner and consultant are now taking notice of POTS but we are struggling to find any experts in the UK.

 

A concerned father

 

Gerry

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Hi Gerry ,

 

I can't offer any help but wanted to welcome you to the forum. I am a Mom to a 20 years old son who was diagnosed 2 years ago with sine Sclero first, and then, changed to UCTD. It is so hard watching your child be so sick and not having answers. My son also has Orthostatic Hypotension, but not diagnosed with POTS since his heart rate doesn't go up that much.

 

Take care, Everyone.

Margaret

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Hi Gerry

 

Welcome to the site.

 

I can fully appreciate your feelings with regards to your son but don't give up, keep researching and asking questions because thats what I had to do.

 

My daughters biggest issue was very low blood pressure and she has only just had a tilt table test done! But her consultant I think is only really confirming the diagnosis, she does go for the results of that test tomorrow. She certainly has dizzy spells and faints very quickly after standing for even a short time but she has not lost weight. Her consultant won't allow her to do any hard physical exercise because she always ends up fainting so can only ever do very gentle exercise and really needs someone with her just in case she does faint.

 

If you want to send me a PM I could give you the charity who we sort help from to find an appropriate consultant and you can also read up more on their site.

 

Hope you can find some answers soon.

 

Jensue

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Hi Margaret,

 

Thanks for taking the time to respond, I am warmed by the immediate welcome from this forum. I hope all goes well for your son.

 

Kind regards

 

Gerry

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Hi Jensue,

 

Thank you sincerely for replying so quickly. My son also suffers from very low blood pressure. It is frightening to see the debilitating affect his condition is having on his life. Six months ago he was a strapping energetic young man, an active gym member. Now he struggles to walk, is constantly exhausted and his weight loss is worrying. All tests to date have focused on digestive system and adrenal gland function (all negative), it is only recently that we became aware of POTS (web research) and noticed his dramatic change in pulse on standing. His consultant is trying to arrange a tilt table test.

 

I would be very grateful for the contact details of the charity you mentioned, please excuse my ignorance but.......what is a PM?

 

Many thanks

 

Gerry

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Hi Gerry

 

A PM is a Private Message. Don't worry I will send you one about the details.

 

Jensue

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TILT TABLE TEST question

 

First thankyou to Jensue for supplying the charity contact details.

 

The question:

My son is scheduled to have a tilt table test tomorrow (Wednesday) and I have been reading about the importance of the drug isoprotenol to enhance sensitivity to the test. Has anyone any experience of the tilt table test and/ or the use of isopotenol for the test to share please?

 

Thanks in advance

 

Gerry

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Gerry I hope you manage to get some answers for your son. I don't know if the charity was of any use but they helped us sort out my daughters problems.

 

All I can tell you about is that her Tilt Table test was positive and that she found it unpleasant because of course they where trying to see if she would faint and how quickly. She did feel quite rough for the rest of the day.

 

Do let me know Gerry how he gets on.

 

Jensue

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Jensue,

 

Thanks for replying again, looks like the tilt table test will be done without isoprotenol, my son is concerned because if the result is negative we will not believe it. I agree with him. I will let you know how he gets on.

I have not contacted the charity yet, I am going to wait until after the tilt table test, until then I am not sure what questions I need answered!

 

Thanks again

 

Gerry

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Hi Gerry,

 

I had the tilt table test done years ago, but without any medication. For me it was one of the easiest tests I've ever had -- nothing invasive, and no worse than standing up. In fact, not as bad as just standing up as they do it so gradually.

 

I couldn't discern any reaction myself, nothing more than mild dizziness. However, the test showed that I had orthostatic intolerance, much to my amazement, as I'd never heard of such a thing.

 

They tried to also do ambulatory monitoring on me, but every time I stood up, the alarms went off. They went through quite a few machines before they realized it was my blood pressure going down to zero every time I stood up, not machine malfunction. So they had to do quiet room bp testing instead, which showed I have labile hypertension, too. I suspect the labile hypertension and the orthostatic intolerance are probably related, as a general failure of blood pressure to properly adjust.

 

That said, I really don't quite understand why they have to run such tests. It would seem to me, silly goose that I am, that being dizzy or having that "sinking sensation" whenever you stand up, or stand too long, would be a pretty sure giveaway to orthostatic intolerance. But, I'm not a doctor, I have no medical training at all, and far too much common sense for my own good.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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<<But, I'm not a doctor, I have no medical training at all, and far too much common sense for my own good.>>

 

Oh, Shelley......thanks for the laughs. I think that definition could explain many of us!!!

 

Take care, Everyone.

Margaret

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Gerry,

 

I am so sorry to read of the trouble your son...and you as his father...are having in regard to this health problem.

I so wish there was an easy answer for you both, as I know how disconcerting this has got to be...the not knowing.

 

I will be keeping and sending positive vibes your way, as you wait to find resolve.

My hope for you both, is an expeditious treatment with the best possible results.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jensue, Shelley, Susie and all,

 

Many thanks for your help and kind thoughts. My son had his tilt table test and I was shocked to see the affect, simply standing for a while, his heart rate jumped to ~150bpm and stayed there for the duration of the test (25mins) he was exhausted. The very nice and kind doctor had no knowledge of POTS though and put the result down to "being unfit". I started to explain the background and how my son was very fit before he became unwell and that his orthostatic tachycardia (increased heart rate on standing) was an initial symptom and not a result of being unwell, but I was droning on and lost his attention.

 

Thanks for the specialist contact Jensue, I am persuing that now.

 

Kind regards

 

Gerry

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Hi Gerry,

 

Oh dear, doctors, what can you say? Your son is lucky he has you for a father! Will you put up a new posting once in a while to let us know how he is doing? Any idea how long it will be before you get him in to see the specialist?

 

Best Wishes and Warm Hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Jeannie,

 

I will post an update when I have some news, I don't want to bore everyone!

I just found out our main consultant is on annual leave so next appointment is 2 weeks away, I think I can't wait!!! I have names of POTS specialists, one in particular appears to be a world authority and I am told there is a long waiting list to see him. I am trying to weigh up the pros and cons of waiting for our consultant to return (I think I will need a referral anyway and he will have more clout than I do) or jumping in and trying to arrange something myself now with possibility of alienating our guy.

 

Kind regards

 

Gerry

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