Newly Diagnosed

[minnie17]

Hi Everyone,

I am newly diagnosed after having had a TTT about 4 weeks ago. Luckily for me my symptoms only started about 4.5 months ago so to get a diagnosis in 4.5 months I think is actually pretty good compared to what I have read for some other people. And also I only had about 4 wrong diagnosis in that time (they told me I had benign proximal vertigo, a neck problem !!!, a virus, anaemia). It was only when I went to my GP telling her I thought I needed a TTT that she actually even thought it could be a blood pressure disorder and sent me for the test. Lucky I did my own research or I would still be undiagnosed!

I have a couple of questions that I was hoping people could help me out with

* Prior to actually feeling unwell (VERY light-headed, exercise intolerance, migraines, bad brain fog) I had been getting swelling in my ankles for about 1 year. I had just ignored it because although I am only 27 I have had varicous veins for about 10 years and thought that it was just my bad circulation. Does anyone else have this and what do they do about it?

* Because I already had swollen ankles my cardiologist did not put me on Florinef. I have gone straight onto Dothep (Dothiepin Hydrochloride) which is a tricyclic antidepressant. He said he can get me Midodrine but it is not registered in Australia so your have apply for special access through the government. The Dothep has been OK but I do feel like I am not very alert on it and I am still getting headaches. Has anyone else been on this?

* I was also wondering if there is anyone else out there that lives in Melbourne Australia and was wondering who they see for their condition? I have been seeing Dr Hamer at the Epworth in Richmond and Box Hill.

* I also have polycystic ovarian syndrome (PCOS) that I see a naturopath for. She put me on herbs for my PCOS and I now essentially have no symptoms? Has any been to a naturopath for their POTS/NMH? And if yes what did they give you? I also have also thought about trying liquorice has anyone tried this?

Thank you so much for reading all my questions I was so relieved when I found this website! Also I read a post about people being very active before they got sick. Just for the record I used to run about 4 miles a day and do 25mins of pilates stretching. I am trying to keep up the exercise, I still go out every morning but can't run as far and do more walking then running, but I have kep up with the pilates.

Thanks

[Ernie]

Hi,

Welcome to our family,

My brother has varicose veins and his doctor prescribed compression hose (even for a man!).

[mattsmum]

Hello,

Also from Melbourne Australia here. Took me along time to find anyone who could diagnose me properly. I see a Dr Chris O'Callaghan at the Austin hospital. I am on midodrine you can get it easily enough its just a phone call by the dr to authorise it and a couple of forms signed. I have heard tho that only the Austin dispensary supplies it cheaper than anywhere else. To contact where they are ring the Austin and ask for the clinical pharmacology unit. The swelling in your ankles is there to stay for as long as you have POTS. Its the pooling in your legs I get it so my whole bottom calves are swollen. You are lucky you found someone who would follow up your research I live at Mornington and its a LONG way to the Austin but its worth it for proper treatment. Good for you that you got diagnosed so early.

[flop]

Hi Minnie, welcome to DINET.

Swollen legs / varicose veins - wearing medical compression stockings can help with these symptoms and can also help to raise the blood pressure by limiting the amount of blood that can pool in your lower legs. I don't have much swelling (mine is caused by fludrocortisone) but I do feel better / less brain fog when wearing compression (40mmHg knee-highs are what my dr prescribed).

With you reporting varicose veins in your teens, have you been assessed for Ehlers-Danlos syndrome (EDS) / Joint Hypermobility Syndrome? I was recently diagnosed with Hypermobile EDS and my doctors feel that there is a causative link between the two conditions. Varicose veins are common in people with EDS.

Dothiepin - I have taken this in the past (before I developed POTS) but my cardiologist advised agains using it now as it can cause an increased heart rate / rhythm problems (I have arrhythmias as well as POTS). Antidepressants are routinely used to treat POTS (and not because we are depressed!) but the usual sort to be prescribed are selective serotonin reuptake inhibitors (SSRIs). SSRIs are helpful the mechanism is not known but it may be because serotonin as a neurotransmitter and raising levels may improve signals in the nervous system.

Liquorice contains a natural steroid that is pretty much the same as fludrocortisone (florinef) - it causes the kidneys to retain salt and water which raises blood volume, the main side-effect would be the same as fludrocortisone ie ankle swelling. It would be best to discuss with your doctor before trying liquorice so that they can monitor you (also need an occasional blood test to check potassium levels when on either fludrocortisone or liquorice).

best wishes in finding the right combination of treatments that suit you,

Flop

[deucykub]

Hi, Minnie. Welcome to the forums!

I'm sorry to hear that you have POTS, but getting a diagnosis can be freeing in that you can now start treating the problem instead of spending all that energy simply trying to put a name to why you don't feel well. That is truly fantastic that your doctors were able to diagnose you so quickly.

Two questions:

1. Did your doctor prescribe salt and fluid loading? If high blood pressure is not a problem, adding a lot of salt (between 4 - 10 mg daily) and 2 liters of fluid minimum each day can be very helpful. I think this does more to help my POTS than any of the medications I have been on or am still on.

2. Has your doctor pursued cardiac testing (echocardiogram and electrocardiogram) to check your heart for any additional problems? Swelling in the ankles can definitely be caused by POTS (although I don't have this symptom, my legs just turn purple), but it can be a serious medical sign as well, such as edema from congestive heart failure. Since you have POTS, it is mostly likely NOT the latter, but it would probably be wise to rule out other causes before attributing the swelling to POTS if you haven't already.

Take care and best wishes!

[amy54]

Hi Minnie,

I'm in a rush this morning, so can't give you a proper welcome.

But I saw your question about Melbourne doctors and knew I could help with info, so...

There's a place called the Baker Institute in Melbourne. They actually do research on POTS and are really knowledgeable about it.

They have heaps of POTS patients. Professor Esler, or one of the others involved in the study, are the ones to look for.

Just ring the Baker Institute, and ask for Professor Esler or one of his cohorts.

Amy

[minnie17]

Thank you all so much for your replies! I read them at the beginning of the weekend and had a much better weekend for it. I may even goes as far as to say that I enjoyed my weekend!

To answer some of your questions I have had a stress test done on my heart which showed everything to be normal but it was that test that really was the trigger for my diagnosis as on the report it said that my resting heart rate was 90 beats per minute and being very athletic my resting BP had always been around 40 beats per minute. When I saw that I started to investigate the symtoms I was having including tachycardia in the search.

About the salt and water loading. My cardio did recommend this. I find the water bit OK but I find when I have the salt as well I get really bad pressure behind my eyes. I don't know if this is high blood pressure or not..??? Has anyone had experience with this..?? The hard bit is that my symptoms feel better when I have the salt but then I get this pressure and pain behind my eyes, I don't know which one is worse?

Also I am going to my GP this week so I am going to ask for a referral to the Baker Institute so I can get a second opinion.

Thanks again for your support

M

[ramakentesh]

There is also Professor Murray Esler at the Baker Institute at the Alfred Hospital in Melbourne who is regarded as a world leader on research into dysautonomia (POTS, NCS, etc).