Autonomic Dysfunction/NNH/Prof Matthias/POTS

[sheppeyescapee]

I've been feeling really dreadful now that the days are getting hotter to the point where I'm pretty non-functional after midday when the heat gets worse. I'm doing everything that I've been told but it doesn't seem to help. I'm needing at least 2 naps a day at the moment otherwise I'm on the verge of fainting. My fatigue is so bad in the summer, seems like my body is hardly ever happy no matter what the weather is doing it is always impacting on something or other. My follow up isn't until October and I have resits to do! No way I'm going to pass my resits when I can barely stay awake and feel like I've ran a marathon just getting to the bathroom and back

[Fiona-Jane]

maybe you need to invest in a vest like mine (oooh- just noticed: in"vest" in a vest! Ha! ), the one that is full of those special ice packs that reduce my core body temp? if i wear it all day in the summer, even when i'm indoors, it helps my fatigue a fair amount. theres some extra fatigue from the effort in carrying the vest around but the benefit from it are currently outweighing it (unless i spend too much time outside, then i just get knackered again).

i posted about it on another thread so i'll go and hunt for it and post a link, just in case you're interested.

the vest really has made my life soooo much better , and i can guarantee other vest users would all say the same. especially at this time of the year! it was a lot of money and i technically couldnt afford it but i'm so glad i bought it and the extra ice packs, this time last year i was really very ill from constantly having heat stroke and heat exhaustion without any time to recover. this year i;ve only had full heat stroke once (although i came very close yesterday...), just had heat exhaustion a few times but thats easier to recover from and only takes a few days of proper rest in a cool environment and gallons of fluids.. unlike the heat stroke that makes me sick for weeks.


will go hunt for the link now. hope you have a better than usual day tomorrow

fi xx

[Fiona-Jane]

that was easier than i thought! here is the link: http://www.hypermobility.org/forum/viewtopic.php?f=6&t=2469&hilit=+vest&start=15 mine is a few posts up from the bottom, and nemonie posted a link to a seller in the uk who does them, but i've not checked to see comparable prices etc yet.


fi x

[bendyneck]

I've been feeling really bad with the migraine pain I get at certain times in my cycle. When I get this bad I have to just lie down in bed, I sometimes become aware of my heart rate despite lying in bed all day, so today I took it very inexpertly and it came up as 96, it also seemed very unsteady, sometimes faster sometimes slower, Is this POTS?

[hayles]

hi

i was wondering if someone could help me. I have been looking into pots recently, i am seeing my GP wednesday to discuss it. She said she would look into the condition for this appointment as she has never heard of it before. I am just a little confused as the symptoms cross over and could be pots or my ehlers danlos, so i thought i would ask what you think.

I am getting terribly dizzy, to the point standing up sets it off and i cant really do anything. If i stand too quick i go dizzy, if i move too quick etc. I get heart palphitations...mostly in bed. I get a lot of headaches, nausea, sickness....pretty much daily. At the moment i have these symptoms everty day, mixed in with my pain and fatigue its making things difficult for me to do anything or leave my bed.

I hope someone can help, many thanks

hayley

[RiffRaff]

Hi Hayles,

There are other people on this forum who know a lot more about this than me. Your symptoms do sound pretty PoTSy to me, and if you already know that you have ehlers danlos hypermobility type (HEDS) then this increases the likelyhood of this diagnosis. In my case, I got my GP to refer me to Professor Mathias' neurovascular clinic at St Mary's Hospital in London, as they're pretty expert at diagnosing and treating PoTS. I don't know if that clinic is anywhere vaguely near you. My GP didn't know what I was talking about with regards to POTS either but I'm lucky that he's happy to refer me elsewhere if I think it might be useful.

Here's some information on PoTS from STARS, which is a site I've seen others recommend: http://www.stars.org.uk/patient-info/conditions/pots.

I'm sorry you're having such a tough time with your symptoms. I really hope you can come up with some useful answers and your symptoms improve soon.

All the best x

[RiffRaff]

Something I've been meaning to write about is that I bought one of those pedal exercisers that some of us were talking about a while ago. It didn't go very well. I tried to use it lying down and on the sofa so as to exercise as horizontally as possible, but the machine kept moving away from me. It worked ok when I sat on an office chair, though obviously I was less horizontal this way. The resistance was pretty low but better than I expected. I didn't get too long to work out if it was worth having though, as the resistance band broke really quickly, so I sent it back for a refund. Now I'm vaguely considering getting a recumbent exercise bike...

Hope everyone's having a good day, all the best.

[RiffRaff]

Here's a link to the DWP's new entry on PoTS: http://www.dwp.gov.uk/publications/spec ... rome.shtml. It seems pretty good to me, I'm relieved to say. Hope everyone's as well as possible.

[louloutinks]

Hi all. I am feeling so bad right now. For the past few weeks things are getting worse. My BP is all over the place and it is hard to be upright for long. My BP is going really high, really low and with both high and narrow pulse pressures. I wake up and my HR is over 150. My BP rises to 166/121 and then down to 89/88 still with high HR and I have to get my self laid down. I walked the dog the other day and I was crouching down all the time but as soon as I stood up I had to crouch down either straight away or a minute later and the poor dog has not had a walk since then as I feel so bad. I went shopping for sons school it's but couldn't manage much and waited 45 mins on the shop window sill until the queue was down to two people. This is the worst I have felt ever. I feel like I haven't eaten for a week (which I have) and am so weak and nauseous and cold with an inner tremor. I have water by my bed for morning. Salt doesn't help an ounce. I am feeling like this 90% of the day rather than mostly mornings Getting better as day goes by like I did do. What can I do to feel better.

Excuse typos as on phone.

[sheppeyescapee]

Thanks for the links. I have forwarded these to my cousin who has once again ended up in A&E, ambulance and everything with chest pains, breathlessness, palpitations etc. They took her blood work and it definitely isn't a heart attack. She is waiting to see a cardiologist but is suffering quite badly at the moment. They have mentioned possible problems with the valves, possibly MVP.

[sheppeyescapee]

I've been really struggling with my POTS symptoms since I had a virus. Today I have been feeling absolutely dreadful. Would a virus exacerbate POTS symptoms? Been having a lot of blackouts and near faints lately

[loosebones]

simple answer as shattered but yes a virus can exacerbate POTS

[sheppeyescapee]

To expand on that last post, I have been experiencing the following: Dizziness, Excessive Sweating, Fatigue, Breathlessness, Palpitations (resting HR of 130 going up to 160 when I move), Chest Pain. I really hope it calms down before the residential. I'm making sure I drink plenty and am adding nuun tablets to it to put salts in. October really couldn't come soon enough.

[sheppeyescapee]

Poor cousin has had her 5th visit to A&E last night and that was just within a couple of months. They said it is arrhythmia and she is waiting to see a cardiologist. I've passed on all the links from here. Poor woman is suffering really bad at the moment.

[sheppeyescapee]

I'm not sure how to word this. Basically sometimes when I feel like I'm about to faint but don't actually faint I tend to lose my peripheral vision, it goes black like I'm looking at things through a tunnel. Is this common in pots or is this something else?