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gillyann

Postural orthostatic tachycardia syndrome (POTS)

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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 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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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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