lauralulu

This is all so interesting, I only wish I could add something useful! Thanks to Issie and to those who have given input.

Hi!

I too used the forum when I was pre-diagnosis and found people to be extremely helpful. I'm in Derbyshire, UK. There's a facebook group called POTSUK started by a girl in Sheffield that's also helpful and friendly too.

It was DEFINITELY the magnesium then, as my systolic wasn't too bad but the diastolic was diabolical! lol.

Incidentally, I've started trying motherwort (herbal remedy) as it's reputed to be good for palpitations and tachycardia! I noticed since taking this my tremors have stopped, at least for now- which is pretty amazing to me as the only thing that stopped them before was a beta blocker.

This is reassuring to me too, as my symptoms have gotten markedly worse since having a mono type illness AND flu AND bronchitis all in the same year, within a few months of each other. I was starting to panic somewhat that it was going to get progressively worse and worse, but maybe not, perhaps it's 'just' the viral things that have given me a hard knock and I'll see improvements little by little.

Thanks for sharing.

Thanks for the warning issie- I've had to stop taking it as I noticed every time I did, I felt terrible and my DIA bp was terrible. I had heard it can lower bp so I figured (rightly) it was the magnesium causing me to feel so bad, once I stopped, I felt better. I'll try the yoga stretches instead!

Thanks jump, so happy to hear it's been that good for you, that's wonderful.

Thanks for the replies -- I am going to try a magnesium, calcium and vitD combined vitamin and see how I am with that. I agree that the feeling of not being able to breathe enough along with the tremor feeling is the worst! I also feel like my heart is racing when it isn't so perhaps the muscles in my chest are twitching, how odd. I get the tremors in my legs and chest/torso most too.

Thank you for the info and reassurance, I feel much more positive about trying it now!

So I was given my prescription without any inernal info (the leaflet thingy you usually get) so I looked it up online and found some stuff that's scared me half to death!

So I guess I must have a drug phobia because this keeps happening! But god, long term use can cause glaucoma and cataracts?!! That is super scary and makes me feel very nervous to even start taking it, in case I become dependent and end up on it for a long time. I'd rather be dizzy, tired and tremulous than lose my sight!!!!!

Is this just a case of them having to report the worst case scenarios when it's not generally very likely?

Feels like it could be restless leg but I also get restless arms and torso syndrome with it too!!! And yes, I've also noticed tiredness or stress worsens it. I wonder what causes it... so puzzling. My guess is sympathetic overactivation...

Hi LuLu...

I get the same problem, but only in my legs. Have you ever had a sleep study?

No, I haven't had any sort of investigation for it, I just have my POTS diagnosis.

TXPOTS glad you found something that helped with yours, they really are a rotten thing!

I get these troublesome shivery jerks/jumps and trembly spasms that run through my body at times when I am very tired and trying to relax. It feels like although I am exhausted, my body won't relax and if I try to lay or sit still, these jerks run through it- often in my legs and my shoulders/torso (when it's my torso it turns into more of a shudder, when it's legs and arms, they will jump up). I also get like a full body shudder when I'm laying in bed trying to sleep.

I hate these! Not only are they irritating they are also accompanied by an unpleasant 'restless' feeling, like I feel as though I NEED to keep moving (like jiggle my legs up and down) even though I'm exhausted and want to rest. Also get a feeling ilike there is excess energy running through my body and although I am breathing just fine, it often feels as though I can't get enough air. It's really weird.

Does anyone else get those symptoms? Do you get the strange feeling of not being able to get enough oxygen along with the feeling of overactivity and spasms?

Does anyone know what causes this? And does anyone know anything that helps to settle/get rid of it? There are times when I just cannot sleep because of this!

How bizarre and very interesting, sandalwood is my FAVOURITE aromatherapy oil above all- maybe my body was trying to tell me something! Thanks for posting!

Thanks for the positive input from those of you who've found taking CCB a help. I've decided to try it after the bank holiday weekend, as I'm not working much so if I have any 'bad' effects, it won't matter so much or 'spoil' anything.

That's good to know Emma!

Yeah, my hr can be high a lot of the time as I also have inappropriate sinus tachycardia. I am currently taking liquorice root in the hopes of boosting my bp and so far it seems to be working reasonably well and I've only been taking it two days. It's meant to work in the same sort of way as florinef. I got my diltiazem from the Dr but haven't taken one yet, but I've got them ready so I can start taking them if I feel my hr is staying problematic, although there have been times since taking the liquorice that it's gone normal, which I'm amazed at. (Like 60 resting and 80 standing!!!! I could have fainted from the shock at that, LOL!).

It would be nice if I didn't end up needing it, but it is there if I do. :-)

Carinara- that's why I am extra worried. My BP is low so I worry it'll just make me feel worse, plus most people with POTS need vasoconstrictors, not dilators...

HopefulLady, I too fear the long term effects. I manage okay without medication which is why I get more reluctant to take them- if I was really struggling or my quality of life was severely impaired like many people's is with POTS then I wouldn't hesitate.

I'm booked in at the doctors in just over half an hour to get this script and I still don't really know if I want it!

Thanks for adding in a positive, that could sway the decision for me as I'm wanting to get back into studying soon so can be doing without brain fog!

Thanks Lieze for showing understanding, I'm sorry you feel as thought everything is off, it makes the adding in drugs even more scary when you are worried your body will react badly. xx

Well, I guess SCARED isn't the right word. More like reluctant. For these reasons:

Don't like the idea of something working directly on my heart. Worried about the long term effects of changing what my heart is doing 'naturally' to compensate for whatever is wrong in my body due to dysautonomia. Feel uneasy about the fact that so little is known about long term prognosis for POTS and these drugs to treat the symptoms, worried that taking them when it's not strictly necessary (since I can and have done for many years, manage without) could end up worsening my symptoms somehow (e.g. masking them when they aren't that bad, then if they got worse, I'd need more drugs to have the same effect and would just end up worse off).

I suppose I feel like as I don't strictly NEED them to go about my daily life, maybe I should just keep going as I am and 'save' them in case I do end up NEEDING them...

Though I suppose equal to those concerns could be that it might help improve my quality of life and the long term effects be good because it's giving my heart a break from working so hard and decreasing the hearts oxygen consumption.

Really can't decide.

LOVED the newspaper article! It sounds like a wonderful hospital you were treated at. Thank god for caring and determined Doctors eh!

You need help. This is the person who is supposed to help you. You may be a nuisance but you don't have a big choice if you want to feel better.

That's a good point!

She wants me to try the CCB next so I'll go along with that but if I feel bad from that, I'm going to ask about Ivabradine.

Oh and thanks Persephone too, going to read your article and I will keep Octreotide in mind as another possibility to request! And hey, who wouldn't be banging on about a medicine if it's given you your quality of life back like that! :-) So thrilled for you! xx

Being new to this whole diagnosis thing, I'm really wondering how best to go about being treated. My Dr is lovely- Julia Newton (Newcastle) and I don't want to seem like a difficult, bossy patient...

I've tried my beta blocker (atenolol) and it just worsened my fatigue considerably, even though it did make me feel better in other ways (not feeling so physiologically 'stressed'). Her next suggestion to my GP for me to try is Diltiazem, a calcium channel blocker. I'm feeling rather reluctant to take it though as I know these too can lower BP and mine has been low even without meds. I was wondering if it would be okay to go to my GP and suggest she write to Julia asking if I could try Ivabradine, as I believe this lowers heart rate but NOT blood pressure.

But then that makes me feel as if I am being a 'difficult patient' by not trying what I've been told to! aaaghhh! Any advice??

It is because of the inter-relationship between heart rate and stroke volume that these meds can have such different effects on different conditions. Many doctors don't realise how meds will have different effects on people with POTS. That is not to say that a BB or CCB won't cause low BP in people with POTs but many of us find them very helpful medications.

I've got to dash now but will try to remember to come back and write more later....

Flop

Thank you flop, that is most interesting and helpful! I like to understand how these things work. Unfortunately the bb was making me feel terrible, so tired, dizzy and nauseous. My bp was down in the 80s/50s, so I think perhaps I'll have to try the CCB next.

I tried Metoprolol and Fludrocortisone and didn't tolerate them very well. My doctor and I finally settled on (for now) a calcium channel blocker - Verapamil. According to my doctor, although it's often used to lower blood pressure (bad for me) it's also good at lessening the quick heartrate spikes.

To combat the blood pressure dropping effects of Verapamil, he also put me on Midodrine - a vasoconstrictor, Desmopressin (DDAVP) to retain fluid, and Mestinon, which also boosts blood pressure but turns me into a nauseous zombie.

Although I've gotten worse, overall I think the meds are helping. Without them I doubt I'd have the energy (or will) to even type this on my phone.

I want to be able to take DDAVP to retain fluid as I believe that's my biggest problem, with my overactive bladder I just pee it straight out. Unfortunately though my Dr wasn't sure about the licensing laws over here, I might only be able to take it if I actually have diabetes insipidus. I've just had some blood tests and am waiting to see what they say, if anything.

I'm also reluctant to take beta blockers now after reading about how they can increase the risk of diabetes. I've already got one complicated health issue, I do not want to risk getting another!

Thanks for the responses. It's good to have the diagnosis now and know the CCB is available to try, but as long as I'm doing okay without, I'll just keep it as a possible option. I'm afraid of taking meds when I'm not doing that badly and then if things were to get worse, the meds wouldn't work. I'd rather save them for if I really, really need them! Right now I am lucky that I can cope with my symptoms.

I do hope I can have DDAVP though because I really think this would help, I'm thirsty and feel dehydrated all the time, so I drink anything from 2 to 4 litres every day and still never feel like my thirst is quenched!

Thanks Angelika.

I might just stick with being unmedicated and managing that way. I did it for 9 years and have been okay. I'm overall just not entirely comfortable with taking medication that could have negative long term effects when I don't strictly NEED to. I CAN manage without. Am disappointed though, the first couple of weeks I felt a lot better, until the fatiguey doped up feeling kicked in. As for the CCB, well I just don't like the sound of what it does, and how it can affect the liver. Just puts me right off even trying it.

Can anyone give any symptom markers for low-flow vs. high-flow or normal-flow POTS? I really don't think I understand all the mechanisms very well.

Wondering because dizziness, fainting and brain fog are not symptoms for me. Walking is a help to my symptoms. I also think Vit D is a help for me, but still testing that out.

That's interesting, as I've discovered walking helps me too, in a way I think anyway, as I feel better (for a while) whilst I'm walking. For instance this Sunday I got up feeling terrible, really fatigued and exhausted- went out walking, walked about 6 miles, by the end I felt shattered and had a headache, but once I'd eaten I felt much, much better overall.

I've also discovered sitting around/resting if anything make me feel worse, whereas when I am 'on the go' I feel better. Not normal, not 100% or well or anything, but better than when I'm just being inactive.

I guess this high flow/low flow stuff is off the original topic of the thread though, but I just found your remark about walking helping your symptoms interesting and wanted to respond!