flop

I would like to add my thanks to doctorguest too. There are many of us on here with different health experiences and varying levels of knowledge about dysautonomia and other medical conditions but to have the addition of a specialist to our forum is a gift to all of us. I am sure that we will all learn from doctorguest's contributions to discussions and hopefully doctorguest will gain a unique insight into living with POTS.

Flop

Angela,

I'm so glad to hear that you have a week since your faint without another one. I guess that some of us who do/did faint regularly forget how awful the first one feels. Hopefully that was a one-off episode and it won't happen again but just in case it does reccur, it never feels as bad as the firt time.

You said in earlier posts that the florinef seemed to get rid of your warning symptoms so maybe it was being on florinef that was the problem not the fact that you were reducing the dose. I'd follow your doctors advice about coming off florinef and see how you feel when it is properly out of your system - maybe its not the right med for you? We all seem to react so differently to meds that you just have to use trial (and error) to find the right combination for you.

Another friend of mine had taken florinef in the past and stopped it as it wasn't working - they tried it again later on and it helped. Unfortunately you have to accept that our POTS bodies are really odd and often not predictable.

There is a lot of good advice about aborting fainting episodes and how to help yourself recover in previous posts on this thread so I won't bore you with my experiences. If you prepare yourself mentally for another faint it probably won't happen but if it does you'll know how to deal with it - fingers crossed you never need to!

Keep standing (or sitting/lying down in a hurry),

Flop

Lisa,

you have a PM from me. All the best for tomorrow - I'll be thinking of you and praying for your quick recovery.

Best wishes,

Flop

Pain is a well recognised trigger for vasovagal syncope. The vagus nerve was named from the medieval Latin Vagus meaning "wandering" (like vagrant, vagabond and vague) as the nerve literally wanders through the body from the brain to the abdomen.

The vagal nerve has effects on the heart rate and blood presure and experiencing pain anywhere in the body can cause it to do very odd things to BP and HR causing syncope.

Personally I've found that the birth control pill helps to lessen the menstrual POTS flares that I had.

I hope your problems settle quickly,

Flop

Babysitting for your neighbours children is a good excuse - you might do it regularly for a bit of extra money so you could use the excuse more than once (so long as your co-workers don't live in the same street).

((((((Amby)))))) and ((((((Deucykub))))))

lots of hugs to you both at this difficult time,

Flop

Good luck with the MRI - if you haven't had one before be prepared for the scan to be quite noisy - lots of loud knocking noises round your head! I had earphones on so they could talk to me and they let me choose the radio channel to be played through the headphones to distract me a bit.

I hope it all goes well and you get some useful results, let us know how you're doing,

Flop

If you do a search for cortisol levels you will find that they have a circadian rhythm. Your levels are highest in the morning when you get up (this is why all adrenal blood tests and synacthen tests should be done at 9am, and also why steroid tablets should be taken in the mornings). Your cortisol levels naturally drop during the day. Any stress trigger can cause the adrenal glands to secrete additional cotisol - even being nervous about a tet can influence the results. You will probably see quite different results taken at different times but actually interpreting those results into medically useful information may be impossible. I have not heard of saliva tests for cortisol levels being used by doctors in the UK for diagnostic purposes - I don't know how well they compare to the standardised lab blood tests?

Let us know if you find any thing out,

Flop

Thanks Pat,

I am ok and lurking / posting short replies on the forum. As soon as I can think clearly I'll update properly (prepare for a long post).

Thank you to everyone for your messages of support - they mean a lot.

Flop

Happy Easter everyone

Flop

Congratulations Willow,

A midsummer nights dream should give you loads of scope for imagination and creativity - make sure you send us some pictures when the play has been done! Can you rope some of the pupils into helping out with the actual painting / making once you've come up with the designs? That might take some of the pressure off and let you enjoy the fun bits more.

Flop

What time of day are you taking your prednisolone? Pred is well known for causing insomnia - taking all the pills in one gofirst thing in the morning is least likely to cause insomnia. If your dr insists on the dose being split avoid taking them after 2pm and certainly not at bedtime (the same applies to forinef).

The swollen ankles will be due to fluid retention and will settle once you are off the prednisolone. I would advise against taking diuretics (water pills) as they may cause your BP to crash and make you really dizzy.

Some people do have an adverse reaction to prednisolone called steroid induced psychosis. I hope that your "bouncing off the walls" is figurative but if you or your fiends/family are concerned about any changes in your behaviour on pred then please see your dr asap.

Hope this is useful,

Flop

A lot of people get GI side-effects from iron - usually constipation but I get the opposite effect. Splitting the dose over the day makes it easier for your body to absorb the iron so fewer side-effects. Agree with the vitamin C supplements.

I've found that ferrous gluconate suits me better than ferrous sulphate. It comes as a coated tablet so it slips down easily and is about 0.5cm in diameter. When I need full dose iron I take 300mg x3/day, cutting back to just once a day for maintainance.

Flop

Hi, I used to use a TENS unit a lot for knee pain. It was before I had POTS but it was a huge help with the pain (I found that accupuncture was even better). The pain relief works for some and not others, sometimes I think you need an open mind as some of the effect is the distraction from the pain caused by the tingling sensations!

Since having POTS I haven't used one much but did borrow my Mum's for a few days when I pulled my back - didn't seem to affect the POTS but I am quite potsy at the moment so would be hard to tell.

If you decide to try TENS let us know how you get on,

Flop

Hi Tammy,

sound's like you're describing a short synachem test where they measure your serum cortisol levels before and after a dose of synacthen (synthetic ACTH). There was a recent thread about this started by Liz Britton - I've bumped it for you. (I hope bumping threads isn't against forum plicy and appologise if it is - my "brain fogged" brain can't remember and I don't have enough concentration powers to re-read the policy right now).

Flop

Thread bumped for Tammy

I'M HOME!!!

Good news, as Katie said they have let me home this morning and I have just arrived at my parent's house where I can recuperate with Mum fussing round me. (My Mum has been sick with worry about me and has lost weight over the last week - so please pray for her to regain her strength. I hate what this disease does to those close to you).

I'm really tired after my journey home so am going to rest now. I will post details when I can for those of you who have asked what happened to me.

Thank you all so much for your messages of support - Katie brought them in with her daily and it was so good to hear them.

Best wishes to anyone else who's in hospital,

Flop x

Deucykub,

thanks for posting the link - I must have missed it in the other thread. I hadn't seen that article before. From my quick look at the abstract it seems to be suggesting that hyperventilation causes decreased cerebral blood flow and therefore syncope (i.e. we are all hyperventilating ourselves into collapses - I think not!).

I know that hyperventilation can cause blackouts - there is an infamous video of some German medical students hyperventilating and suddenly standing up from a squatting position to induce syncope (some of them demonstrate a few seizure like movements due to hypoxia).

What I was reading was talking more about deep breaths rather than hyperventilating and was suggesting that the deep breaths were triggered by hypotension and actually helped to improve blood pressure. I think it was in Dr Grubb's book "syncope: mechanisms and management" but I haven't got the book here to look it up (am staying with my Mum before going into hospital tomorrow). I'll try to get my brain fogged memory to remember to look it up for you when I get a chance.

Flop

Thanks evryone, now that my job interview is out of the way I can prepare myself properly for tomorrow. Persephone - I cried like anything after my previous general anaesthetic, just bawled my eyes out for no apparent reason for 5 hours! That was daycase surgery on the friday before the christmas weekend and I nearly got kept in hospital over christmas as by the time I had stopped crying the physios had gone home. They were worried that there was no-one to check my walking - I managed to convince the nurses that as I had been non-weight bearing on crutches for 4 months pre-op that I could continue hopping about on my crutches at home and come back to out-patients to see a physio rather than spend an extra 5 days in hospital.

I had previously blamed the crying on the benzodiazepine that I had been given as a pre-med as the only time I took temazepam at home I had the same outburst of unexplained crying. I have always refused benzos/pre-meds since then. I had my reveal device implanted and my EP study without sedation.

Flop

Hi everyone,

you can relax your fingers now - I'm home again after my interview session. I think it went reasonably well but the competition is high for these training posts so I shall have to wait and see. The results were due to be out on the 19th April but problems nationally mean that they will be delayed so have a long wait in store. At least I have my op tomorrow to take my mind off the waiting.

Good luck to Rita and anyone else with interviews coming up, I'll keep my fingers crossed for you.

Flop

Never tried one myself but am considering getting one for this summer (and it's not that hot in the UK) to use at work as we don't have air-con.

If you find any information please share it.

Flop

Having a bit of a panic as I have just realised that there is a good reason that I don't often wear skirts - they look silly with knee length compression socks. I have only recently been prescribed compression stockings and the clinic are insisting that I wear knee-length ones to start with and work up gradually???

The suit I have is charcoal grey with a skirt that is just below my knees. The shop didn't have trousers in my size and the ones I ordered haven't arrived yet. I would look really silly with black compression socks and my knees showing when I sit down! I've bought some "firm support" tights but they are only factor 10 so will do nothing for my BP - argh!!

Oh well, fingers crossed I don't black-out!

Flop

I'm sure that I've read something recently about shortness of breath and POTS. It was something along the lines of taking deep breaths (not breathing faster) actually causes the blood pressure to rise slightly.

It may well be that we feel breathless when out BPs are low and we have automatically started taking deep breaths to try to raise out BP? The breathlessness is probably because we are breathing fast rather than from a lung problem.

I also wonder, if as a low BP means less blood to our brains (therefore less oxygen to our brains) that that could trigger the breathlessness.

Can't think clearly enough at the moment to postulate further. When I get my surgery over with I will try to find the info on deep breathing and BP changes.

Flop

Morgan,

I can only imagine how disheartened you must be feeling right now. Talking from experience, perhaps your doc didn't follow the protocols because they didn't read them? We know that the "normal" reference ranges only apply if you follow the protocols. Hopefully he can find someone who can interpret the results without having to repeat them?

Take heart in knowing that we here know and belive that you are genuinely sick (from physical not mental causes), I know we are not your docs but we are here for you.

I had problems at work because everyone thought I was faking my blackouts for attention (who would want to repeatedly injure themselves, loose their driving licence, get sacked and become totally dependant?).

My cardiologist understood. I had been diagnosed with a reactive depression years before I developed POTS but the "mental health" label sticks forever. What he told me (and I think possibly what your doc was trying to say) is that yes I have got psychological issues (like being afraid to go out alone) but they are all due to my physical illness.

My GP puts it as "having a normal reaction to an abnormal situation" (i.e. anybody going through what we do daily would feel like we do - fed up!).

((((((((((HUGS))))))))))

Flop

Oops, it took me so long to type that last post that Julie had "answered" before I posted it.