Looking for Input about Drug Options

[purrsian]

Hey guys, just looking for some feedback about people's experiences with different drugs. My POTS is currently my worst symptoms, along with some head symptoms (which are possibly related anyway). My doctor put me on sodium chloride tablets, but even when starting with lower dose and ensuring I eat when I take it and drink LOTS of water, I still got terribly constipated and also hypotensive (not usually an issue for me, perfect BP even when standing).

After having such a bad response to that, she wanted to put me on fludrocortisone. I haven't started it, as I had some reservations after my terrible salt tablet experience which took months to start to recover from.

I've been reading up about it and have read most of http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps to get an idea about other drugs available. There are so many options that it boggles my mind a bit!

So some questions about fludrocortisone...
1. Do you need to take salt tablets with it, or is it ok just to add a bit of extra salt to meals? Are there any electrolyte drinks that you recommend that include enough salt without being over the top like the tablets?

2. What blood tests should I have before starting? I've read about people having potassium problems and saying you should get it checked before and during taking florinef. Is there anything else to check? I also just read that it also depletes magnesium. I'm always low on magnesium - is this just another thing to keep an eye on and supplement, or should I not use florinef because of this?

3. I'm currently on an SSRI (since roughly 2004) purely because I'm so sensitive to drugs that I can't reduce my dose without insane withdrawl symptoms. I know that florinef required you to ramp up and down when you stop and start. Has anyone had issues with coming off them? Doctor said it would be fine and they are well tolerated, but she said that about salt tablets too lol

4. Is there anything else that needs to be increased/supplemented, other than salt, potassium and water?

5. Are there any other issues you have had or think I need to be aware of if I start this drug?


While I have a tilt table diagnosis of POTS, I don't think I've really been tested for too much stuff. My cortisol is slightly high, but do you need to be tested for any other adrenal hormones to see what's going on? Do most POTS patients just see their GP about their condition, or is there a specialist that might know more? I actually mentioned that I thought I had POTS to a doctor and she'd never heard of it (she was young and had probably just finished studies in recent years, so it shows they aren't taught about it at all).

Sorry for the long post and many questions. I've been kind of ignoring seeing doctors or trying drugs for a few months now as it's just so overwhelming, but my symptoms are pretty bad. I don't trust that GPs actually know enough to tell you all the right things to do while taking a drug, but I know plenty of people on here know all the things you should do and get tested for etc. Thanks for any assistance

 

[Sushi]

So some questions about fludrocortisone...
1. Do you need to take salt tablets with it, or is it ok just to add a bit of extra salt to meals? Are there any electrolyte drinks that you recommend that include enough salt without being over the top like the tablets?

I never could tolerate salt tablets either but find that extra Celtic or Himalayan sea salt to be good. I couldn't tolerate Florinef at all but there are other drugs if that one doesn't work for you. Many take midodrine or a beta blocker or both. Electromix is a good electrolyte powder but it doesn't have much salt. I just add salt to food.

I've read about people having potassium problems and saying you should get it checked before and during taking florinef.

Yes, it is good to get a baseline reading on potassium and then to test it as you go as many do find that it depletes potassium. Many of us also supplement magnesium as potassium and magnesium work together.

Doctor said it would be fine and they are well tolerated, but she said that about salt tablets too lol

From what I've read on forums Florinef is tolerated by about half of those who try it.

Do most POTS patients just see their GP about their condition, or is there a specialist that might know more?

Few GPs will know enough to manage POTS. I saw an autonomic specialist but they are rare. Otherwise, you can do your own research and show it to your GP to try to educate him/her. The drug that finally worked for me was strattera--prescribed off-label. Most GPs wouldn't know about that....but it only fits a certain autonomic profile--low norepinephrine.

 

[purrsian]

Thanks for your advice @Sushi . I've found some info from another forum on a few doctors in my city that work with dysautonomia, so I'm going to try and get a referral to one of them. I'm considering trying florinef after this semester is finished. I made the mistake of trying salt tablets before my exams had finished (thinking they would be fine) and I had to defer an exam. It would be good to speak to a doctor knowledgeable in my conditions though. I currently have head symptoms problems of fuzziness, pressure, dizziness etc (not sinusitis, but similar types of sensations, just very internal) which are worsened when I stand (but always present). I've read that florinef causes increase intracranial pressure and I definitely don't want to make my current head symptoms worse.

Wouldn't it be nice if we could all deal with just one illness at a time

 

[Sushi]

I've found some info from another forum on a few doctors in my city that work with dysautonomia, so I'm going to try and get a referral to one of them.

Try to get patient feedback on them too as just because a doctor "works with dysautonomia" doesn't necessarily mean they know what they are doing!

 

[purrsian]

Good advice. There was one that two people mentioned was very knowledgeable and good with it, so she'll probably be my first choice. I'm going to google their names further to see if I can find some other info.