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Hi, The last time i took Midodrine i had what i think was a svt and have not taken it again. However I now know this happens anyway and probably was caused by being more active and activity triggers the sudden hr jumps. Does the midodrine help with adrenal surges? Is it generally good for hyper pots?

Hi, I have the same experience and have wondered if it is the body's response to the tachycardia - it's as thought the heart needs a rest. Wonder if anyone else on the forum has had an explanation from a doctor. I will definitely be mentioning it at my next appointment as it has started to happen daily for me. I have been taking fludrocortisone for a few weeks and i am now more active so like you it has happened following doing active stuff around the house. My son was recently tested for POTs and his hr at the time was averaging 44 resting and i was amazed that nothing more than a monitor was given to him. i thought a hr consistently at this pace would have warranted some immediate action. I would definitely mention it next time you see a doctor. How long do the episodes go on for? Let me know whats said.

I have been a free lance artist all my working career - in tv, theatre and even had a three year residency in 3 hospitals. Then did a post grad in Fine Art and a few years ago set up a company with a younger male sculptor designing natural play areas and landscapes. Thank goodness i did this as my earlier work was very hands on and i could never do this now. I would be active all day, on my feet, and then running another business with my husband outside of this. My episodes of illness crept up on me slowly i think for years but mostly over the last 2 years. I used to work on site and i am physically very strong and would barrow stuff around, mix concrete and lay turf. Since this hit me full on Nov 2010 i have moved more and more to the designing and running the business as it has expanded and we have taken on 3 more people. I used to be able to do all the meetings but i hit a flare 6 weeks ago and have not been able to leave the office- which is still in my house. We have a workshop which has an office but i am too ill to set it up there. My daughter in law works with me and i know she would like to be with the others at the workshops but i have often needed someone with me especially when i get prolonged surges and tachycardia. I fel really lucky we started this as my partner is brilliant and wants me in even if i can only work erratically. He knows I am a workaholic and that if i say i am too ill to do something then there really is something wrong. I really, really do not want to let go of what is the culmination of so much work and passion. Still struggling to believe that i won't be better tomorrow. Often when i am working i can just forget i am ill and sometimes when i just ignore my symptoms they do pass. I just can't imagine why i would stop as has been suggested and just do nothing so for now i am going to keep on going. I agree with a previous post - i use my status as a successful post grad business woman with medical family and friends to counter suggestions that i am over anxious and over reacting. it is ridiculous but true.

Lieze, Sorry to hear you are very tired. I get awful chest pain if i stand for long. The florinef has helped. Wondered if it was down to pooling in abdomen ( i do not pool very much in legs). But i think i have hyperpots and i am not sure if you stomach pool with this. Any mild infection i get will set of something more like ME where i lose interest and have no energy. I took anti biotics and did feel lots better when this happened. Hope you are feeling better now.

Hi, That's really disappointing to wait for an appointment and to not find any answers. Propranolol is a short acting BB which is why you take it maybe a few times a day. As far as i understand some BB work on just your heart (eg bisoperamil) and others have an impact on other organs as well. I have also noticed that people often try different BB and can find one that works. Good luck

I have read it and found it really helpful. I thought at first there was too much about psychological support but realised this was helpful in the context of the book. it has a really clear section on the different causes/types of pots. The best i have seen.

Having a real struggle with surges that go on for hours and doctors who don't get how unbearable it is and fob me off. Managed to get an emergency appointment before christmas and am now taking Fludrocortisone which has had an amazing impact. I had already started the tablets before the appointment and the TTest on the tablets was fine and did not show pots this time, in fact a number of the TT's were negative over the last year. Of course i was on bb for one and had tights on for another and was in remission during another but the next day was so ill i vomited if i stood up. So, this doc was slightly questioning my diagnosis. I have posted before that my HR is ok when i stand maybe doesn't go over 100 unless i exert like the stairs. Even if my HR stays lowish, i still get the normal pots symptoms - chest pain sob. But some days it does always go and i have no doubt about the diagnosis. But while the postural bit is a bit better the surges have become so bad i have been house bound for weeks. I have never experienced anything more agonising in my life and i had 2 natural births. The adrenaline made me feel so ill. This has been a gradual build up over lots of years and the pots diagnosis was a relief. I went for a mile and a half walk one day -HR never over 100 - then was ill for 4 days? So, Does anyone else have surges that last this long whilst not having postural symptoms too badly generally? Does anyone else have intermittent symptoms? Does anyone else often have good TT results? Thanks and Happy Christmas.

Hi, Does anyone get these during the day that go on for hours? I have been really desperate with this happening daily and no doctor seems to understand. Have just started fludrocortisone and it seems to have controlled it -hugely relieved. Anyone else?

Is florinef and midodrine similar. it seems to have a similar action on me and brings my blood pressure up too high. But it really helped the adrenaline surges. Has anyone else been told only to take it in the morning?

Took 1/4 tablet in pm yesterday and was told later i should not have taken it pm. Nobody had told me. it gave me awful surges for hours and my bp was unreadable on the monitor for hours - i felt so ill. have insisted i se someone before Christmas and now have an appointment in the morning. I was prescibed these meds over the phone with little advise - shocking. Last night was **** - i had to crunch up beta blockers and valium and it still took hours to bring my symptoms down. I missed our Christmas meal with everyone. So still interested in others experiences with this. Thanks for the help so far.

I have just started Florinef - what a difference. But could only tale a 1/4 of a 1 mg tablet any more increase blood pressure to much. I knew within am hour that i felt better. Do you still need to salt load with it? I was not given much advise as prescription came through GP. Does anyone know what other meds you can mix with this?

How high is super high?

There's nothing like a bad spell to try and get to grips with this. i am in England and it has been quite difficult to get to see anyone who knows very much. I went for a second opinion in London but there is a year long waiting list. And it seems to have upset the Prof i was seeing here. The problem i have is that beta blockers knock my HR down into 40-50's This can feel very uncomfortable when it is chemically induced. Have just started Florinef - 1/4 of 1mg tab has had an amazing effect but is raising my bp at times too much. But it is the first time i have walked out of the house for a month. I do not think this is a med that is normally of for hyper pots. So you do have to find what suits you individually. it has taken time for me to understand the complexities of this but am getting there. Tzipora look at the post sent to me from Mighty mouse asking for info to take to the doctor - it has a link to NDFR site about dysautonomia and that has helped me identify what my problem is and then you can start working out what will work.

Does anyone else feel ill with these surges. I am fairly certain my blood pressure goes up at the same time and i feel so ill. i can feel my adrenaline trying to kick off alot of the time but mostly can control it. The major surges are usually preceeded by a heat rush or flush. Just had really bad few weeks where this would go on for hours feeling ill.

Sorry to hear this - as you have been well so there is no reason to think it won't pass quickly. Maybe you have picked up a virus and you are reacting to that. I always find you such a strength on this forum. Get better soon.

Thats really helpful, thank you.

Had first quarter tablet florinef today and it made a massive difference after a month of daily surges and terrible chest pain. So relieved. Only took 10mg of propranalol and hr drops frequently into 40's and still got surges and chest pressure. Keeping fingers crossed for the florinef to work - but did not think it was supposed to work for hyper pots. Just goes to show how individual it is.

Sorry R- see you already answered post about Fludrocortisone. Been really ill for about a month and Having problems remembering thinks.

Thanks, took a look but am trying to find a symptoms list as last cardio i saw said my chest pain was not cardio and was not pots. At this point he had not even asked me to describe the chest pain which i reminded him of. I know it is pots and may be exacerbated by something cardi - i have what i think are svts that trigger an adrenaline rushes. I just want to be armed with something in print from a reputable sorce. Have you seen Pots book - Pots -Riding the wave of dysautonomia. It has a very good concise explanation of hyper, net, mast, eds, autoimmune, etc Simple but the really well set out. Harps on a bit to much about psychological aspects - trying to get away from this. R - while i am on, have you ever tried fludrocortisone?

Hi, When i first took diltizem i dont think it made the pots better but it helped with the chest pain. Then i had a few funny episode with it stopped for a while Tried it last week when i had tachy from it but i was in a bad phrase and really felt unwell but it did seem to make it worse. Of all the drugs it is probably one of the safer. It's all trial and error - good luck.

Anyone suggest a good concise explanation of hyperpots i can take to cardio and add to my file. None of the doctors seem to know much about it and i think it might help. Seen lots by pots sufferers but something a bit official would be good. Thanks

Yes. The first treatment made me feel like i could walk again for the first time but the feeling fades. After that was not sure for a while. then i was too ill for a while but have been back over the last month every week and i really feel it helps increase my energy and functioning level. I dont think it's a cure but it has helped and i will continue to go. Hope this helps - good luck

Hi, I am looking for advise. As i had such a bad reaction to diltizam last week I am looking for others with experience of fludrocortisone before i take it. It has been suggested along with beta blockers. It took 25 phone calls and a threat to make an official complaint, following two weeks of terrible surges - some that went on for hours, before my GP was contacted and this medication was suggested. He knows nothing about the condition or the medication for it so if anyone can give me any info that would be great. This is the only place i trust now. Also propranalol - bblocker was suggested - is this a good one for hyper pots? i notice a lot of people swear by Metropolol. I have managed to remain fairly drug free and still would prefer to take medication as needed but it has got so bad. And the bad reaction last week has made me really cautious. My bp can be a bit elevated during surges - don't know if this makes any difference. Thanks

Thanks Jackie/Todd/Lotus etc Had another episode on friday which went on for 5 hours. lay in recovery position for 2 hours. Can you tell me is it this bad for you? I can't speak, don't want any noise and this time it was intense pressure in my chest - no arm pain this time. Like someone standing on my chest. At the same time my heart keeps peeking upwards then coming down. I crunched half a bb and half a valium and this stopped surges going so high but it still went on. I could still feel the adrenaline in my body - it just was not having such an impact on my heart.After 4 hours repeated the dose and it started to come down. Still cannot get the pots doctor to see me - says the referral from gp does not say urgent and wants to wait till after i have seen cardiologist. Just feel i need some rescue treatment for these episodes.

Thanks for all those replies. it is really reassuring. Had another episode last night with adrenaline surges which lasted 5 hours, spent 2 hours on the floor in the recovery position despite valium, bblocker and paracetemol. its the worse i have been. But it is like a very heavy person standing on my chest and i can feel the adrenaline. i think my bp is up too. Does it affect your blood pressure or it actually the result of raised blood pressure and have you found anything to help with the pain. Houswoea i think you have mentioned the gabapentin before i will mention this next time.