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I'm sorry this happened to you xhale. Would it be a possibility for you to exercise while being supervised bye a Physical Therapist? I think that might be a safer option? Not sure what happened but it seems it may have to do with blood flow. I'd check with my doctor if I were you, he will be able to explain and give you some guidance

Hi everyone, welcome to DINET!

Welcome newbies, hope you will feel comforted knowing you are not alone! Please feel free to ask everything you need to know, there are so many compassionate and caring members here to help you find answers!

My blood sugars when having a hypo are measured at 2.4 (I think lowest was 2.1) I wasn't on the floor yet but shaking and sweating, it's an awful feeling. I have been having blood sugar problems for over 20 years now and am afraid that the octreotide I'm on re POTS doesn't help (can cause both highs or lows). The fact that I'm having both highs and lows doesn't help much. It does make my doc think though that for me it's a dys problem (unnecessary insulin dumps). Though hypos cause dizziness and other dys symptoms I can def feel the difference between my "normal" POTS and hypos

Thanks Mike! Wishing everything good on you too! And enjoy life as well as you can, you only have one!

Due to blood sugar fluctuations (both lows (hypo's) and highs) I had to start a low carb diet last year. It leveled out the fluctuations and made me loose about 13 kilo's (which is too much for me). Though I'm doing better re blood sugars I had to adjust my exercize program. I can no longer swim nor do any core exercizes as they set off hypo's. Unfortunately I can't feel them coming so there's nothing I can do to avert them which makes it quite scary (I've had hypo's in the gym, while driving etc) so I'd rather make sure not to get them at all. I'll be seeing an endocrinologist to try figure out if there's something that can be done as I'm still loosing wait. Sorry you all are struggling with this too!

Hi mwjc, welcome to DINET! It shouldn't be a problem, I'm in the Netherlands. One of my Dutch POTSpals received the protocol via his PT (e-mail). Have you checked the e-mail address?

Sending good thoughts Kris!

Welcome everyone!

Hi sideofsalt, congrats on your pregnancy! Glad to hear you are doing (reasonably) well! I hope someone will be able to answer your questions.

I'm not really sure whether I understood what you mean but for me, I don't really tolerate a hot and humid environment. Warm and dry works well for me.

Happy New Year everyone, so glad you are all here to listen and help eachother. It's such a great comfort!

Good luck dancer! Hope you will get some answers!

Goodd luck Faye, hope you'll get the answers you need!

Usually when I'm extra tired it is caused by low heart rate. Not sure why, it just happens.

Merry Christmas everyone, and thank you for participating in our forums! It so helps to know we're not alone!

Hi everyone, just a few lines to let you know that I have removed the links to the Vanderbilt study as they are still recruiting. It is against our forum rules to add links to open studies. Here's the specific part of the rules re that:

Soliciting

DINET does not allow advertisement. This includes, but is not limited to, medical studies, other organizations, fundraisers, products, businesses, websites, forums and Facebook groups. If you are a researcher who would like to advertise your medical study, please contact DINET. Use of our forum signifies that you agree not to use any services provided on DINET's website or forum to solicit others.

Soliciting: "1. To seek to obtain by persuasion, entreaty, or formal application. 2. To petition persistently; importune. 3. To entice or incite to evil or illegal action. 4. To approach or accost (a person) with an offer of sexual services."

Further clarifications regarding soliciting: It is okay for you to share your experiences with medical studies as long as you follow forum guidelines. However,no it is not okay to suggest members participate in medical studies, or to post information on how members can participate in medical studies.

It is okay to say you are a member of another organization, website or forum. It is okay to say you use a particular business or product. It is okay to say that you participated in a particular fundraiser. However, it is not okay to use DINET's forum to recruit members for other organizations, websites or forums. It is not okay to use DINET's forum to promote businesses, products, or fundraisers.

I realize it wasn't your intention to advertize this study!

Hi everyone!

Syncope does not mean POTS. POTS is "just" a raise in hr while standing (at least 30 beats per minute for I think at least 10minutes if I remember well or

a heartrate of 120 or higher). Would it be helpful to take this report to you doctor and talk it over with him/her? Or telephone the clinic where the tilt was done and ask them how to interprete the report?

I'm so sorry this happened to you. When it just happens like you mentioned while sitting and/or standing you might want to ask the specialist for the details of your test and look at the results. They may have missed something? I mention this as I have heard of that before. Just a thought to try help you!

Welcome everyone! Hope you will find the answers you need. For me, when I joined DINET lots of years ago I felt comforted knowing that I wasn't alone with my weird symptoms! Though of course I am very sorry you all have to deal with it as well. Feel free to ask anything you need to know!

I def do not want to make this a hot topic but do feel the urge to share the following: though I am very sorry people may react so badly to statins, please keep in mind that we are not a homogenerous group. We often share the same dysautonomia symptioms and problems but we are all very different, what goes for one does not necessarily have to go for others. Always check with your doctor(s) before deciding on (adding) meds, they are the ones who can help figure out what could work best in your personal situation! Also, in our "what helps" section (here's a link: http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps) the following can be found: Vasoconstrictors such as ergotamine, midodrine, octreotide, ephedrine, pseudoephedrine, yohimbine, theophylline and ritalin improve venous tone which decreases pooling blood.

Octreotide is a statin as well. Studies have proven it can be quite helpful for some dysautonomia patients. Again, it all depends on your personal situation.

I think that would work best Jade!

That's fine, don't worry Jade! The other poster is only alerted if s/he "follows" the topic as well!

Hi Jade! Just a fyi, you can't tag hear, we don't have that feature, sorry! What members can do is scroll up and click the "follow this topic" button (Top right). When you've done that you will be alerted when new posts are added. Hope this helps!