mariancollins

hi mary,

i'm so sorry to hear about all this fear and stress. i once heard "expect the worst, hope for the best" ... sometimes it helps me to think of that phrase. wishing you all the best.

regards, marian

dear persephone,

this is great! save it in your memory bank to revisit. i am seeing some specialists in the coming month, will let you know if i get anywhere.

regards marian

hello persephone,

sending you lots of supportive thoughts over the ether. it sounds, from your post, like you had expectations of your break. i once heard something that helped me: " expect the worst, hope for the best ". i sometimes think of it when anticipating an event or an outcome. then i feel prepared for whatever wil happen. this is perhaps no more than cod-psychology! but my good wishes for you are real.

regards, marian

ps which betablockers have you tried? i need help here.

Hello Persephone. You are not alone and I really sympathise. Give it a little time and you will come back up again, because you have been up before. I know how hard the work pressure is, but health comes first, because without health everything else unravels. Sending you lots of support.

Kind Regards, Marian

Hello Suzanne, and lots of support.

It sounds like you are experiencing anxiety about your condition (so natural). I understand that it may also be made worse by the condition itself! Cognitive Behaviour Therapy is very effective for this kind of thing - I find that my symptoms are not belittled and I now have a better tool kit for dealing with everything. There are even online courses you can do if you don't find a good therapist, and it's worth shopping around. This has been a real lifeline to me, because I used to over-monitor myself, just raising the stress and anxiety levels. It's a question of balance between management and level-headedness, and that balance point can be found. Best of luck.

Regards, Marian.

hello Persephone! yes, i know this experience! marvellous! i sent you a personal message a while ago. did you get it? regards, marian.

hello there, although I cannot give you any particular advice, please accept my heartfelt support and good wishes to get you through this latest challenge. regards marian

Thank you everyone, your advice prompts me to take it seriously - as it happens I am seeing a doctor on Monday and get I will discuss it with him. Regards.

Hello everyone. Last night I woke up gasping. What is it? Is there anything I can do to help? I am on BBs and SSRIs.

hello, and my answers are " yes" and "yes". wishing you all the best.

Hello Persephone, I am up in the night having woken, as usual in the last few months, with tachycardia. I have always been somewhat prone to this, partly due to anxiety disorder which is now well under control. (I'm generally a very calm person). My GP is at a loss as the beta blocker doesn't seem to be working, and I am waiting for a 24/48 hour heart monitor test before I try some other BBs. I find the best thing is to get up for about an hour and just take some pleasant distraction, otherwise I just keep going through that whole roller coaster tachy thing. Taking valerian and hops seems to help a bit, but DON'T because you are obviously hyper-sensitive.

Please excuse me the liberty of sending you a personal message too, telling you a little bit about myself as you were asking, and asking you for a bit of advice. Regards, Marian

Congratulations, Persephone. You are tough stuff! I graduated from Cambridge in 1990, having had ME during my first year. It was very hard-going, and in retrospect I realise that deferring and restarting a year later could have been an option! In the end, however, I made it.

Cambridge was a much cherished dream for me, and I was a very highly driven woman on an intensive fast course. I feel for you and wish you every success.

Take very good care of yourself, be kind to your needs, and when you are in a bit of conflict (party/sensible bedtime etc.) just remember: what is the most loving thing I can do for myself right now? and above all listen to your inner voice.

You are doing so well. Regards Marian

Is there anybody out there with POTS in the UK? And where? A few contacts in my home country would be tremendously supportive.

To Evie and Gena, both your experiences seem familiar to me, and it's very helpful to find I'm not alone in this. I particularly suspect that my BP and possible HR drop, then I zoom up tachy to compensate, jolt awake and am still dizzy from the Low BP. A couple of days ago I reduced my BBs at night because I suspected the BP was a problem, now the symptoms are not so severe. I still wake up, however, and find it's best to stay awake for an hour to let everything normalise. That way, if I can get back to sleep, it's more likely to be restful. But in no way guaranteed.(Am typing this at 1 am, as usual!). Many thanks for your info.

Is there anyone else out there who has the strange experience of waking up not just tachy, but also really dizzy? Last night it was so bad the room was spinning. What is going on?

I am on labetalol (Beta Blocker, which also lowers BP), awaiting 48 hour heart monitor, SSRI for anxiety

hello there, i am so sorry to see how unwell you are. i am currently suffering from night time tachycardia, so i really sympathise. i live in the uk. at the moment i am waiting for a 48 hour heart monitor test so my doctor can get a clearer picture of what happens before she tries me on a different beta blocker, as they work in different ways. i hope your symptoms have been similarly analysed. keep going if you can, because there are many different BBs to try.

on a daily (nightly) management note, i find it helpful to get up as soon as i manage to fully wake myself, otherwise i keep sliding up and down the whole tachy rollercoaster thing. i then stay up reading, or doing whatever i find pleasantly distracting, for an hour or two in order to break the pattern. this often helps me get a few more hours decent sleep without a sleeping pill. i was starting to feel a psychological dependence on them, so now the moment i feel that way i decide not to take one that night, but to simply manage on less sleep. it is very difficult, but overall remaining calm and emotionally in control even during a tachy episode seems more useful to me than popping a pill in a panic. with this approach, i am able to keep myself down to 3-4 sleeping pills a week, sometimes just a very low dose one. in fact, i am online now as part of tonight's strategy (it's 1am here!).

also, different sleeping pills can give you different effects on waking - i've had some that have made me panicky and tachy, so it's worth asking your doctor about this, or investigating yourself. wishing you all the best, please do reply if this is helpful, or you would like a bit of supportive chat.

I am on my 3rd beta blocker. Toprol made my heart rate 40 all the time and I could not get out of bed. With Atenolol my blood pressure dropped and heart increased by 30 everytime I stood. I also believe after stopping it that it had worsened my anxiety and depression. Now I am on Nadolol first 10mg now 20mg.

On the upside it seems like I have less anxiety, my heart rate doesnt seem to get quite so high as it did on the atenolol. The downside since I have been on this I have diarrhea nearly everyday for hours. My insomnia is worse than ever. My sleep cycle is further out of whack...get to bed later...only with the help of other medications. Keep waking up. So I end up sleeping later. I am in bed several hours but still failing to get enough sleep or quality sleep. The medication initially made me so groggy, I felt I could barely move. Some of that is not as extreme now, but my level of functioning is half of what it was before I started this medication. I am nauseated all day. Also, since I have asthma and I am on advair and albuterol, my asthma has worsened. I am short of breath. Advair is working less, needing albuterol more. I see the cardiologist in 2 days. I don't know if I want to be on a beta blocker at all. Is there anyone else with input about side effects they had from beta blockers. Does anyone else manage to control NCS and POTS without a beta blocker. I am at my wit's end. I feel like my doctors don't listen. I feel like a guinea pig in a bad experience. I feel like all the medications have done is worsen the quality of my life with the side effects. I am scared and depressed about this. Any input would truly be appreciated beyond...beyond! Thanks!  I am in Wisconsin.  Does anyone have a doctor in my state that they would recommend?

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Thank you so much for all of your replies - you know who you are! I have never used a forum before so I feel really encouraged. I do hope you receive this ok, and I will be sending some of you individual replies in a day or two when I have had a chance to absorb all the information you have given me. After reading your posts, I realise that you may find it helpful to know the following: I am on beta blockers at night, a moderate dose SSRI for anxiety (very successful), have multiple food intolerances and have had tachy on and off for many years, mostly untreated until the last three years. I am just starting to sleep with my head elevated. I am able to work and exercise reasonably normally, and use relaxation techniques when necessary. In the meantime many thanks again for your support and wishing you good luck.

I am new to the forum and very grateful to find I am not alone! Can you help me? I have been efficiently treated for a range of autonomic nervous system disorders over the years. My main problem now is tachycardia starting during sleep, which seems to stop me getting to any deep level of rest at all . I would appreciate hearing from you if you have the same problem, even if you are yourself still searching for a solution.