Autonomics, Hypermobility, Ehler-Danlos, PoTS

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Autonomics, Hypermobility, Ehler-Danlos, PoTS

Postby sara_elizabeth » Thu Feb 27, 2014 4:34 pm

So over the last 20 months I have moved from the waiting list to testing to analysis of the Autonomics unit (lead by Professor Chris Matthias) at the Hospital for Neurology and Neurosurgery at Queens Square. I spent a year on the waiting list (thereabouts) and 4 long days of tests (including some incredibly painful ones where I had to do till table tests and remain at standing angles and perfectly still strapped to this table for 120min [I wanted to cry [[I have a back injury this was horrible for me]] ] and a meal test to see how your blood and BP worked when your body was digesting, even a hot/cold test to see if my autonomic systems were broken). The end results of my tests.....

Apparently when i stand up or eat food my blood pressure (that is already low) goes from 90/75 to 70/50 (which is basically dead or something) so my body is making all this extra blood and it is just pooling in different places like my hands or feet or stomach (when I am eating) and my heart is beating 100-120 times per second to try and push the pooled blood around my body and it is one of the reasons I get dizzy spells and blackout spells and have to prevent myself from fainting (it also contributes to my Raynauds symptoms...apparently it's not precisely Raynaud's it is blood pooling that is the cause of my temperature problems)! So the medication will literally force my blood pressure into a normal range (100+/85+) and I'm supposed to be eating over 10g of salt per DAY to increase my blood pressure also. Unfortunately the Autonomics dr was very anti-medication and suggested I find a way to prop up my bed 30degrees (he said I should put bricks under my bed which isn't very hardwood friendly in my rental...) I need to convince my GP to go the meds route, there are 2 options: the first is a mineral steroid that forces your body to retain water (I am really not keen on this) and over a few weeks your blood pressure raises slowly and the effects leave your body slowly. The other drug constricts your blood vessels so the blood can't pool in your body like it wants to and your heart can't be put under so much strain, it works almost immediately and leaves your system within a couple hours. The only side effect is possible headaches. I like the sound of this drug better because it works faster and there's no weight gain side effect (and I'm quite overweight already and desperately trying to lose weight)

So it was a long appointment but hopefully if I do all this stuff I will be in less pain, less fatigue and feel better overall. But both medications have side effects like taking away all the potassium in your body so I have to overdose on bananas but hopefully it helps in the long run?

I thought I would share my experience because I know a lot of people on here have hypermobility/EDS/postural-tachycardia and might not have been through the rigorous round of tests (not to mention uber long waiting period) I've gone through!
I have loved to the point of madness, that which is called madness, that which to me is the only sensible way to love
sara_elizabeth
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Re: Autonomics, Hypermobility, Ehler-Danlos, PoTS

Postby zappa20 » Fri Feb 28, 2014 2:44 am

I've pretty much the same because of long term type 1 diabetic damage to the autonomic nervous system and anemia. . Blood pressure drops when I stand up or change position , after a bath or shower, if I bend down and also drops after eating anything. Can appreciate the symptoms are really unpleasant.

The medications which are sometimes used can produce some serious side effects and cause damage in other areas.eg kidneys etc. My GP spent a long time explaining them to me. Because of other diabetic damage , existing heart and stage 3 kidney disease i couldn't take any of them, but to be honest when he'd expalined the side effects and possible damage I wouldn't have wanted to try any of them anyway.

My OH raised our bed which is a very heavy oak wood frame using bricks . To protect the wooden floor put a thin piece of hardwood eg teak on the floor and sit the bricks on that. Other things which help are caffeine especially after eating or taking a walk after a meal, also reducing portion size and eat less more frequently. I prefer the caffeine option as it's not always easy to do a brisk walk when your ehart is racing and you feel very dizzy and faint or convenient. A strong coffee helps or you can buy caffeine tablets from a reputable source. Obviously you'd need to speak to your GP and not take too many or you'll be up all night. Not ideal for soemone with fibro. lol

Horrible as they sound these elastic support stockings or tights can also help by stopping the blood from pooling in your legs. If wearing jeans or trousers no one will notice and they do help. When moving from a seated to standing pposition you need to do it slowly. Stand up slowly, stay in the aposition for a minute or two before moving , that will stop you from falling over. After a bath or shower jsut sit down for 10 minutes and that will help , and try not to learn not to turn your head too quickly .

It maybe sounds like a lot of bother but it isn't once you get in the way of it. And no single tablet cures all problems , without causing something else. It's worth considering, particularly if you're taking several other things for fibro.
zappa20
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Re: Autonomics, Hypermobility, Ehler-Danlos, PoTS

Postby sara_elizabeth » Sat Mar 01, 2014 5:28 pm

yeah I was interested in the bricks but my OH doesn't want anything messing with his half of the bed. I can't seem to find something to put under the mattress that would just raise my side, everything goes on top of the bed and I would sleep at a mostly upright position :(
I have loved to the point of madness, that which is called madness, that which to me is the only sensible way to love
sara_elizabeth
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Posts: 50
Joined: Fri Dec 06, 2013 11:01 am
Location: londres

Re: Autonomics, Hypermobility, Ehler-Danlos, PoTS

Postby zappa20 » Sun Mar 02, 2014 8:36 am

sara_elizabeth wrote:yeah I was interested in the bricks but my OH doesn't want anything messing with his half of the bed. :(


That's a shame. To be honest he won't even notice it and it won't affect his sleep. Before my OH put the bricks under , he was sort of wondering if it would feel a bit strange and being a typical male restless sleeper with legs kicking everywhere, if he'd end up sliding down the bed during the night and fall out the bottom,.. lol. But he said it's not noticeable .
zappa20
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