Help

[robynfairlie]

My 16 year old daughter was diagnosed with POTS about a year ago when we saw Professor Matthias who put her on midodrine, which has helped enormously as she now gets a warning before fainting(usually). We have been put into the care of our local health authority who are unwilling to prescribe midodrine. Does anyone know of a consultant that would be willing to help us get some more midodrine? She will run out of the drug in a couple of weeks and we don't want her collapsing and hurting herself again. She faints at least once a day, it was three times yesterday, and we are desperate.

[Helenamber]

Hi Robyn,

I'm so sorry to hear that your daughter is so unwell.

I don't know where you live, so I don't know if this will be too far away from you, but I know that Papworth heart hospital will prescribe Midodrine. I was prescribed it there, but then tried to get repeat prescriptions from my local GP, who wouldn't prescribe it. I called my consultant at Papworth, and they discussed it directly with my GP, who then prescribed it. It might be an idea to contact Prof Mathias and explain the situation to him, who may be able to sort it for you.

If that doesn't work, you can contact ICAS who can act as an intermediary for you. They may be provided by POHWER. These are easy organisations to find on google.

The bottom line is, Professor Mathias has prescribed the Midodrine for your daughter and it is of great benefit to her. Hopefully he will be able to help you to get access to the medication closer to home, but if not, then ICAS should be able to help as an intermediary as your daughter is being prevented access to helpful medication.

I hope this helps, and I really hope that your daughter receives her Midodrine and improves very soon.

Kind Regards, Helen

[robynfairlie in reply to Helenamber]

Hi Helen,

Thank you so much for all your advice. My husband and I will get onto ICAS tomorrow. I just can't believe the lack of understanding we have had from our two local hospitals and also our GP. It is so good to hear from someone who knows what this is like and we are not on our own out there. Thank you once again,

Best wishes,

Robyn

[SyncopeTrust-STARS]

Hello Robyn

As you have discovered, GPs will decline to prescribe midodrine unless they feel experienced in its use. However, if a consultant (in your case Prof Mathias ) could provide a 'Shared care agreement' which is a document which gives advice to the GP about how to prescribe, side effects, monitoring and how to contact the hospital team if there are problems, then GPs are often willing to issue a prescription. This may be a way round the problem. It can take up to two weeks for a pharmacy to obtain stocks of this drug, so do not leave anything to the last minute if you are able to obtain access locally to Midodrine.

I can imagine how concerned you are and do not hesitate to email [e-mail] if you need more specific information. Jenni

[robynfairlie in reply to SyncopeTrust-STARS]

Thank you for your response, Jenni. Unfortunately Professor Matthias has retired and we don't seem to be able to get hold of him. My husband emailed a few weeks ago to see if he could recommend another consultant but we haven't heard back from him yet. Unfortunately Tilly collapsed at the top of the school stairs and fell down the whole flight onto a tiled floor and managed to knock herself out giving herself severe concussion and total amnesia. She now knows who her family are and her name but that's about it. After that our GP said he would write her a private prescription for 2 months but that would be it. It's going to cost £500 but hey, what price can you put on your children's well-being. We actually saw our MP last week and he is going to write to NICE to see how far they are going with licensing the drug. I just feel so frustrated and helpless. Thanks again Jenni, it's comforting to know we are not alone. Robyn

[cags2606]

Hi Robyn, not sure where you are located. My 17 year old daugther developed POTS after the HPV vaccination 4 years ago - she was officially diagnosed about 2 years ago, but we had to wait until she turned 16 to be able to attend the POTS clinic at Sheffield Hallamshire. The Sheffield POTS clinic is run by Melloney Ferrar, a specialist nurse, under the care of Dr West. If you are already diagnosed, as was my daughter, there shouldn't be a problem getting treatment pretty quickly. If you're near enough to Sheffield, I would recommend contacting Melloney direct and speaking to her about it - she started my daughter on Fludrocortisone, but switched to Midodrine three months ago due to side effects with Fludrocortisone. We had the fludro on prescription from our GP, but Midodrine has to be prescribed by the POTS clinic as it's used 'off label'. If you want to look at Sheffield as an option for your daughter, STARS should have Melloney's email address or tel number - if not give me a shout and I'll get them to you. Good luck with it x

[robynfairlie in reply to cags2606]

Thank you so much. If you could give me an email address we could try that. Unfortunately we live in the South but would happily travel to see someone or maybe they could recommend someone nearer. Robyn

[SealMcNab in reply to robynfairlie]

Hi Robyn

I have POTs/EDS and when my cardiologist contacted Prof Matthais he referred us to (off my letter) Dr V Iodice, Clinic IV1C3 (Autonomic), Neurology, The Royal London Hospital for Integrated Medicine, London. They have been great and I believe they do prescribe Midodrine, although I find Ivabradine works for me.

Best of Luck

Cathy

[SyncopeTrust-STARS]

If you would like to call me or email me, [e-mail], I will try to help regarding this problem.

[Trottie]

Hi my daughter is 17 and also diagnosed with Syncope and Pots. We are under a Dr Hall at Liverpool Heart and Chest hospital and he has prescribed Midodrine which helps tremendously. Not sure what area you live in hope this helps

[ja21ne]

For anyone else in the south there is a Dr Diane Bruce based in Poole bournemouth. Difficult to get an NHS a appointment but I have a friend who got one privately.

Dr Bruce understands POTS related to EDS very well.