High Blood Pressure And Associated Problems

[andreak]

I was diagnosed with POTS around three years ago and also have Ehlers Danlos and Complex Regional Pain Syndrome

Im an 18 year old female with autonomic problems for the last 6/7 years

Three years ago I went to my family planning clinic as I was finding monthly periods were making the CRPS and POTS symptoms worse and they prescribed Microgynon 30, the combined pill

I was allowed to take this three months straight with a week break after that, thus cutting down on the monthly downturns in my health

Back in April 2010 my bp at clinic was 114/80. Over the past three years this has risen steadily and my last reading was 144/121

I am having blinding migraines, feeling sick and dizzy all of the time and generally unwell. My family planning think this is because of the pill but my cardiologist has given them a letter saying I can stay on the combined pill as my BP fluctuates

The problem is FP do not understand POTS and my cardios do not understand complex regional pain

I was placed on a single hormone pill for a period of six months but my symptoms worsened

I have a couple of questions:

1. How do other people find their blood pressure behaves. To my mind FP are taking the reading after I have stood and walked into the clinic room. At that point my BP will fall and then suddenly increase to try and catch up (or thats the way I see how POTS works). Do you think a high reading in the surgery will necessarily indicate a health problem that needs medicating as I worry that if the GP places me on medication it will exacerbate the times when the BP falls low

2. I was placed on sertraline but I am finding atm that this is making all of the symptoms worse, especially the nausea. Will this settle if I persist

3. With reagrd to contraception does anyone know of something I can take to minimise bleeding but does not have weight gain or mood problems... it seems I am very intolerant to most medications but I really do need something to keep pain at a low level. I cant risk weight gain as the CRPS and POTS often get in the ay of walking or daily exercise

I am about to start a COPE pain management programme next month and really want things to stabilise

Would it be worth asking my GP to do a 24hr BP monitor as I am still waiting to hear back from my cardios about the problems

I live in the UK and have been placed on the waiting list to see Professor Mathias but this may be towards the end of this year before I have an appointment

Any help or advice would be welcome

Thanks

Alison

[ramakentesh]

There are a small (actually very small) percentage of patients with outrageous norepinephrine levels, strange baroreflex reactions and blood pressure spikes as high as 220/100 etc. These guys are probably in danger from some of the effects of hypertension.

However, despite some orthostatic hypertension in POTS, elevated blood pressure causes nearly all of its effects via sustained elevations. In essential hypertension there is an increase in volume whereas in pots there is thoratic and cerebral hypoperfusion - meaning your heart and brain are nearly always reacting as if you have hypotension even if your hands and feet are constricted.

POTS is a situation where blood perfusion varies considerably in different areas of the body orthostatically.

[ramakentesh]

for many the overshoot in BP is compensatory is what i was trying to say.

[issie]

I do agree with what Rama said. But, I've recently had issues with my kidneys and my kidney doctor told me that the kidneys are affected by both low and high blood pressures. The constant swinging is not good for them. He said both extremes affect them in different manners. I have the extreme swings and high NE levels. But, I do think my high NE levels are a compensatory thing. It causes vasoconstriction - but, I think at times I'm overly vasoconstricted. That will cause an increase in blood pressure.

I also worry about what this could be doing long term ---over many years to the circulatory system. Since there is a malfunction in its mechanisms - how much of an issue will that cause in the long run. I, like you, have had these issues since being really young. I was about 8 years old when I started having orthostatic issues and I'm now 53. I'm okay - but, not great and things are starting to show up now with problems.

It sounds like you may have endometriosis. I had this too and there is a connection to mast cell problems with this. (Treatment for MCAS has been one of my better POTS treatments.) I had a complete hysterectomy at a young age. It was one of the best things I did ---but, it did not stop the POTS problems. I too did the birth control route to stop my periods - but, long term could not keep this up. We do seem to be super sensitive to meds. I had a problem with trying to find the best med to do this with. My docs were so afraid for me to have a complete hysterectomy because of my sensitivity to meds and things not working properly with me. But, a compounded estriol cream along with Red Clover and Vit E helped me through the worst of the menopause symptoms --after the fact.

I feel for you. It's so hard being young and having these issues. Just remember - you can do this. There are others that have survived and we are still fighting for improvements.

Issie

Issie

[roxie]

Thanks for explaining that, Rama. I never understood what cerebral hypoperfusion. What's really interesting is that on a ttt with Dr Stewart he hooked me up & the first thing he said was "your thoracic empties rapidly". And recently I started craniosacral therapy (for eds pain) but therapist was saying I have hardly any cerebral spinal fluid from my thoracic on up. A person usually goes in with flow of be 6-8 on a scale of 10. Mine was 1.

Amdrea, I have pots/eds too & my bp jumps all around. So it makes sense what Rama explained may happen to me. Since my bp is always high at the dr's he's put me on 24hr monitor a few times. We always have found that it wasnt sustained high so he says not to worry. You could ask your dr for 24 hr bp. With eds I got a lot bruising from it.