labas_2u@shaw.ca

Hi Ernie....

I have cateplexy and it is really scary.....I get it only when I'm sleeping. It comes on when I am sleeping and I am trying to wake up only I can't move. I am totally paralyzed for a brief period of time...just enough time to scare myself to death.....

there is some debate over whether excessive orthostatic hypotension and POTS are the same disorder - many doctors suggest that a sharp drop in blood pressure on standing is caused by mechanisms different from those that cause POTS.

That being said the only disorder that can causes hypertension on standing as in an increase in blood pressure is POTS according to Professor Murray Esler

Thank you for your reply....

Prior to starting the Altace, my blood pressure jumped on standing up along with the tachycardia. I also have pooling in my legs if I stand still for longer than 5 minutes.

After starting on the Altace, it seems my blood pressure drops now sometimes on standing. It never did this before.

Hi Maggs,

I am currently seeing a doctor (cardiologist) who specializes in Neurocardiogenic syncope, but has some knowledge of POTS. I have been trialing different medications to try to see if anything would work and have not had any luck. This week he has told me that we are out of options and there is nothing more we can try. I wish I could help in that way for you!

I understand why they are working with a diuretic for you, the increased fluid in your case would likely elevate your BP further and is probably not such a good option. Maybe you could print off some of the info given in the main site area and bring that to your doctor to ask if they think this could apply to your situation? I certainly know how difficult it can be to get a good diagnosis and appropriate treatment when you are in a very small town. Sometimes, if you have an open minded doctor, the best thing you can do is research and bring information to them to ask about.

The fatigue is one of the worst things for me to try and cope with. I haven't found a good solution yet, but I'm still looking! I haven't been able to work since I developed POTs two years ago. If there is anything you think I might be able to help you with, or if you have any questions, feel free to send me a PM and I will do my best! Ask lots of questions......I know how hard it is to get information sometimes! Laura

Thank you Laura....

This forum is wonderful.....I thought I was the only person who had these problems......

I too went for years trying every medication out there for hypertension and tachycardia but NOTHING worked at all. I stopped taking meds for about 8 years and didn't feel any worse but then had some really bad attacks that I just had to do something. My hypertension was swinging out of control and my tachycardia changed. I have a cardiologist here but he wants me to go to Toronto for the Ablation procedure because no medication works for me. I started to read up on the internet about my symptoms and discovered on this web-site that that is not a good idea. I am glad I researched it!

I also saw on the web-site that there are two POTS specialists in Montreal. I am thinking of making the trip there (12 hours from here) but, I think that it might be worth it.

I first have to check to see if it the service is also in English as my French is not the best but manageable.

Laura... do you know if our health coverage is good in the States for this condition? I know that some procedures are from where I live.. if the service cannot be provided within a certain distance, OHIP will pay the cost.

Hi Maggs,

Welcome. I have a concern with what you posted. Are you seeing a doctor that know anything about POTS. I am not giving medical advice but sharing what I know. the HTCZ that you are taking along with your altace is a diruetic. You do not want to lose fluid if you have POTS. The norm treatment for Htn is a beta blocker or calcium chanel blocker along with a diuretic because having too much fluid in your system is a common cause of htn.

A lot of us take a beta blocker to help with the tachycardia. I take it to keep my bp from spiking even tho I get very low blood pressure also. Most of us are on a high salt high sodium diet to retain fluid.

Please print the info on the DINET page and give it to your doctor. If your doctor is not willing to learn about POTS and its treatment it is important you find a doctor who knows about POTS.

In the years before my diagnosis I was on so many medications for so many symptoms, made me sick and poorer. POTS and its symptoms present quite differently in everyone and so does medication tolorance.

If you have POTS... It is not a common disorder and the best thing you can do is educate yourself and your medical team.

Your in the right place for info. I hope you not have POTS or any dysautonomia. Its a long road.

If you have questions ask!!!! Nothing can be a stupid question here.

Peace

Janine

Thank you for responding Janine....

I have not been diagnosed with POTS.... I found the website by running through the medical problems I have been experiencing. I live in a small community up North and I doubt if anyone here has even heard of it. I was told about 15 years ago that I had Lupus but after seeing a specialist in Toronto, was told that I didn't .....

I have about 90% of the symptoms on the POTS Place website....

I realize about the diuretic but nothing seems to control my BP.....I drink a lot of fluids to try to counteract their effect....

POTS would not be any longer than the road I have been on Janine.......

Thank you for your concern :0)

Hi Maggs, Welcome to the site! I'm having similar problems but can't offer much help as I haven't found anything that works for me as yet. Do you have heartrate issues as well? Laura

Laura...I see that you are from Canada too..... Are you seeing a specialist for POTS or just a family practitioner? There doesn't seem to be too much here to go for help....If you work....how do you cope with the fatigue??

Hi Rita....

I am so glad you replied.....

I take 10mg of Alace and 1/2 tablet of 25 mg of hydrochlorzide(spelling?)

I started taking it about a month ago because my blood pressure was all over the map. It was as high as 215/134.

I havent' benn diagnosed with hypotension....but now that I take my BP at home.....it can go sky high OR drop by 18 (diastolic) when I stand up..... I was told to cut down on my salt intake....

Hi Maggs,

I get both of these as well. Are you taking any medications? POTS can screw up your blood pressure, and meds can help and/or make things worse. I take atenolol, which helps to regulate my blood pressure. I also try to take my BP every few days and adjust my salt intake if it is creeping up or coming down.

-Rita

Hi Maggs, Welcome to the site! I'm having similar problems but can't offer much help as I haven't found anything that works for me as yet. Do you have heartrate issues as well? Laura

Hi Laura...thank you for your reply...

yes I have tachycardia and a recent ECG came back 'abnormal' but corrected itself shortly after...

Hi...

I am having a problem with both hypertension and hypotension when standing...

Any ideas?