Newly Diagnosed

[s-pot]

Hi All I was just diagnosed about 3 weeks ago with all the usual symptoms and some not so usual of POTS and a positive TTT. I was started on Midodrine 2.5 three times a day which has been increased to 5mg this week as i felt little improvement. But im quite confused about some of the stuff going on since i got diagnosed and know now whats causing all the symptoms! Id really appreciate it if some of ye could take a look at the queries below and help me out with anything you can!!

My questions are

1. Does Midodrine usually increase occurance and severity of the headaches? they seem to have gotten an awful lot worse since i started on Midodrine!

2. Hypotension is a big problem with me...however it seems at the moment when im up and moving around the low BP isnt as much of a problem but once i lie down i think its dipping. I do get regular dips during the day where i end up dizzy, nausea vomiting etc and feeling very unwell. When i was monitored in hospital my BP during the night while asleep and early in the morning dipped down to 70/40...80/50 and gradually increased as the day went on when i was more mobile. Also lying and standing BP's, my BP increases when i stand as opposed to dipping.

3. The difficulty with the above is that when im up and around, and my BP seems to be more stable my HR has been tachy, up to 150+, which is exhausting and i need to lie down and rest often as this drains my energy.

4. I presented this to my GP this week and the Midodrine was increased to the 5mg which has definately had an effect on the BP, ive had alot more energy and fewer dips over the last couple of days BUT my HR is now averaging 45-55??? Is this too low and does anyone know why/how this change in HR is occuring when BP is stabilising?

Im Confused!!!

Also to wreck peoples heads a little more!

Before my diagnosis I had tests on my immune system which showed low T helper cells and low C4 count...has anyone experienced test results like this or know of any links with POTS?

I have experienced constant recurrent infections for years, tonsils, chest, lungs and over the last year as i got sicker and sicker with undiagnosed POTS my kidneys have caused alot of trouble. Im on long term antibiotics to keep kidney infections at bay althou i suspect that the pain and symptoms ive experienced with kidneys hasnt all been infections and possibly more inflammation. Can POTS affect the Kidneys too?

Sorry about all the questions! if anyone can give me advice on any of the above i would really appreciate it....its rough trying to figure all of this out!!!

[potsgirl]

I couldn't tolerate Midodrine, either. Too many nasty headaches, which made me nauseous. Have you tried Florinef?

A heart rate of 45-55 is low. Are you seeing a cardiologist? You may want to ask them to let you do a test with a Halter monitor, which you can wear for a prescribed period of time (24 hrs, or longer) that will track your heart rate to see how low it actually gets. My HR dipped into the low to mid 30s, which meant I have bradycardia, so I ended up with a pacemaker. You should be okay as long as your HR doesn't go below 45-55.

My BP drops when I go from laying to standing. A lot. Then my heart rate doubles or more. This usually means orthostatic intolerance, which it doesn't sound like you have since your BP increases when you stand up. With POTS, normally your BP will stay about the same, with no dramatic drop or increase. The definition of POTS is when your HR increases 30 points or more when you stand up.

I hope some of this helped, and a lot of us end of going to a specialist, like at Cleveland Clinic or Mayo to get more definitive answers. I don't know where you did your testing, and I hope the doctor you're seeing really understands the nature of this beast!

Take care,

Jana

[sisblostg]

I have taken antibodics proactively for 10 years for my kidney(I have only one) after a bad infection causing a 3 week hospital stay. I have never another bad infection and no side effects from the antibodics (that I know of).

I also have some weird immune system results. After looking over my blood work I always hear stuff like your immune system is running on empty or they ask me if I have had an HIV test because of the low T-cells and constant CMV infections (I have had too many negative HIV tests and since POTS has made my sex life non exsistant right now there is no possiblity of me being at any risk). I have had constant weird infections and swollen glands on and off for 15 years and constant for the last year. I know with the tonsils I had some recurrent infections, that caused scaring and then I got tonsil stones which has be debated if they are a cause of or cause immune system issues. I make sure to take good care of my tonsils now and gargle twice a day.

The type of POTS I have causes my blood pressure to be normal or high not low so I am on different meds. My pulse is usually in the 150's. I think 55 is okay (my kids always call pulse in the 50's Obama pulse, his was reported to be 56) Mine has never been lower then in the high 60's which is at night sleeping. Whenever I change meds it takes awhile to get used to the changes in BP and pulse. I have a pulse oximeter I use but after a few days on a new med I can pretty much guess my pulse by how I feel. It would be nice if they had a one size fits all pills for POTS but for now I relaize I need to be patient and adjust meds/excerise/life very slowly.

[s-pot]

I couldn't tolerate Midodrine, either. Too many nasty headaches, which made me nauseous. Have you tried Florinef?

A heart rate of 45-55 is low. Are you seeing a cardiologist? You may want to ask them to let you do a test with a Halter monitor, which you can wear for a prescribed period of time (24 hrs, or longer) that will track your heart rate to see how low it actually gets. My HR dipped into the low to mid 30s, which meant I have bradycardia, so I ended up with a pacemaker. You should be okay as long as your HR doesn't go below 45-55.

My BP drops when I go from laying to standing. A lot. Then my heart rate doubles or more. This usually means orthostatic intolerance, which it doesn't sound like you have since your BP increases when you stand up. With POTS, normally your BP will stay about the same, with no dramatic drop or increase. The definition of POTS is when your HR increases 30 points or more when you stand up.

I hope some of this helped, and a lot of us end of going to a specialist, like at Cleveland Clinic or Mayo to get more definitive answers. I don't know where you did your testing, and I hope the doctor you're seeing really understands the nature of this beast!

Take care,

Jana

Thanks for response Jana.

I had a holter monitor on for 3 days when in the hospital and got diagnosed. At that point my HR was doin the usual 70bpm when lying and increasing 150-160 on standing and moving around, they said i had sinus tachy ryhthm and also arrythmias based on holter monitor over that time.

The low HR at 45-55 has only started in the last week since increasing Midodrine to 5mg...its not usual for me at all.

The BP problem is, it seems its dipping even lower mainly when im sitting/lying for a length of time. I probably didnt explain that too well...its low all of the time i.e the best being 105/60-65 when on the go but I just start to feel awful when im sitting/lying for any length of time..it seems my bp drops lower when i stop..is this usual with POTS?

I have always been inquisitive that when lying/standing bps are done on me my usual lying BP 80/50 does not dip but stays the same or increases slightly when standing....this was my question above. I have always been told that usually its normal for BP to dip slightly when one stands up and have been confused then when suffering from low BP all the time it does not do this when I stand. Is it possible to be getting delayed dips not immediately after standing?

I expect im not explaining that very well as im only trying to figure out the pattern and what is going on with this...its really confusing and unfortunately im in Ireland where this is not heard of really and hard to access anyone who knows a whole lot of info, however ive been told this week that the MEDICAL consultant in the hospital that diagnosed this has a particular interest in it and is probably my best bet. I havto say thou specialist treatment for this here is many years behind the USA and knowledge is sparse but ill truck on!

[Yolaclover]

My pressure gets lower when I am sitting and lying down too! I was on midodrine, 10mg 3x per day and then cardio added .2 florinef once a day, for months I was 90/60 with both of these medications until one day I got very high bp and had to go off midodrine. Then I stayed on florinef and felt very good.