corina

Welcome everyone!!!

So sorry you're having such a hrad time Rachel. I hope that being part of this forum will be helpful to you. Knowing you're not alone can be a great comfort! Sending warm wishes

Hi missy! Sorry I don't have any answers, just wanted to say hi and welcome! Hope others will be able to help answer your questions!

Hi Lucy, welcome! Feel free to ask anything you need to know!

I'm so sorry gertie, I feel for you. Hope things will work out for you as well as possible!

Hi im4god, I don't have gastro issues, I'm on octreotide for POTS, for me it's an amazing med. It isn't for the faint hearted though, I got sick the first few days I was on it (though felt it working on POTS almost instantly) with liverproblems so had to have tests immediately but it solved itself actually which was quite a relief. Unfortunately I will be having surgery within one or two months to take out my gallbladder. The octreotide causes them, it's something I knew upfront and I have been checked half yearly but things are getting so bad now that it has to be taken out. As surgery and my dys body don't blend at all (esp general anesthesia) I'm quite scared to have it but I don't have a choice (my doctors told me haha). 

Hope this helps!

That's great news!

Welcome everyone! Do feel free to ask questions, so many members willing to help and share their experiences!

Hi Krystal, I think you are right re the eye doctor!

Hi Astraboy welcome to DINET, glad you found us!

Welcome to DINET everyone! 

I read in bed and try to not let it define me. There are lots of nights I don't get enough sleep but I'm trying to keep to my schedule to get up in time and get to sleep in time. When I'd sleep in I'd get very confused and mixed up which lasts all day, I find that more annoying than being awake through the night. I don't leave my bed (unless to use the bath room of course  ) but other than that I read!

Hi Amyschi, welcome to DINET! It struck me that you mentioned knowing one is not alone as that's how it was for me when I joined this forum. It made everything so much more bearable. If you'd want the title of this topic to be changed please let me know (here or via pm) so I can change it for you (moderators and admins can do that for you).

Could the dizziness be caused by low blood pressure? Menieres could also cause dizziness of course. Have you been tested to figure things out? I feel that with dysautonomia there are so many things involved that it's difficult and exhausting (as in a daily task) to find out what is going on and what is causing what. Hope you will find the answers you need!

So sorry Noonoo! I agree with Katherine and Angelloz that extrs fluids may be helpful. Also consulting your doctor might help, exp re the stomach issues! I hope it's just a virus that affects your dys and hope things will calm down soon for you! Hang in there!

Hi Mechamoss, this is what can be found in our pinned forum:

Dear DINET Forum Members:

DINET encourages members to become educated consumers of health care. In addition, DINET endorses medical diagnosis and evidence based treatments from certified and licensed medical practitioners only.

Dysautonomia is still a poorly understood class of disorders, yet can be disabling. This can make patients targets for providers/vendors who unfortunately don't have the best interest of the patient in mind, or may simply not have the training and knowledge necessary to provide safe or effective care.

We want all members to share their experiences freely and safely on our forum, but it is each member's responsibility to do his or her own research and investigations. DINET cautions all members to fully investigate any treatments, medical professionals and organizations referenced by other forum members prior to seeking and obtaining treatment.

DINET's Executive Director and Moderating Team

Hi Rainy, welcome to DINET! My tests have never been normal but I know from others that symptoms may wax and wane so I think it's possible that you could have had a good day when tested. If you see your doctor to discuss the results you may want to point out your bp measurements as they certainly aren't normal and do indicate there's something going on whether it's POTS or not!

That's great news, I'm really happy for you! Hope others will benefit from this information also!

Hi NYhope. welcome to DINET! Have you tried seeing a a POTS doctor? I think trying to get a referral to a dysautonomia specialist may help answer your question. Here's a link to our physician's list in case you need it:

http://www.dinet.org/index.php/physician-list

Sorry, that's what I meant, resting hr in the 70's sounds normal to me. Of course it's up to your doctor and you to figure out what suits best!

Welcome new members! Glad you found us!

I would wear something underneath like a tank or t-shirt. Also a wet towel in your neck can be helpful too!

I feel that wouldn't be a problem at all, esp when you feel good, but that's just my two cents of course!

Don't worry, lots of POTSies don't faint!

Glad you got some answers Nijn! This is what I found on the "POTS-What Helps" page re Ivabradine:

Ivabradine, a sinus node blocker, has reportedly helped some POTS patients experience less symptoms. Ivabradine is sometimes used as an alternative to beta-blockers because it results in heart rate reduction without vasodilation, sexual disturbances, ornegative inotropic effects.

In bold is why it shouldn't lower heart rate. It seems to me this could be a fit for you!

I had no idea that could be done subcutaneously, good luck!