3 Things You Wished You Had Known/known About Upon Being Diagnosed

[Chlay]

Hello

My name is Chlay Esmae and I have "a variety of dysautonomia 's " as my dr put it, I've kinda known I've had it for a while but got confirmed last week and I was just hoping to make some friends on here ( I'm sure you can find me online as not many others have my name)

I was hoping you could also give me some advice , maybe 3 tips that you wish you had known about, books, websites, what not to do , awesome charities, ways to make new friends with dysautonomia, fb groupsn etc etc

I think it could help lots of people and also new members (:

Thank you for reading, sending lots of sparkles x

[AussieOI]

Hi Chlay,

My name is Kirsten and I live in Australia (Melbourne) - I am quite new to the forum as well. I have NMH (diagnosed last year) but am doing pretty good at the moment.

I would say that it is great you have joined this site there is so much information. In terms of tips :

1) Definately get a good doctor - there are a few in London (listed on this website) - I know Devon is a bit far but it is quite important to have a doctor that knows about POTS/NMH etc

2) If you need it then it is important to get some good medication - talk to your doctor but some people find that Florinef, Midodribe, Beta Blockers, SSRIs etc are helpful.

3) I have not found many books on the condition but the internet has a lot of stuff - there is a Facebook site called Pots Recovery which you might find good

http://www.facebook.com/?sk=welcome#!/groups/potsrecovery/

4) There are also lots of natural supplements that people think are good like licorice root tea, capsules etc for vasoconstriction

5) For me - Excercise has helped quite a bit. I don't say it is a cure all but getting some basic excercise is good - even if it is recumbent.

6) Another thing I would say is try not to stress out about the condition (I am not saying you are at all) however for myself I did get quite stressed at first as I was always wondering how I would feel when I went out etc. I have tried to calm down a bit which has helped me.

7) Some people swear by diet changes eg Paleo diet or as least low carb/sugar - I have not tried these yet !!

Anyway there are a few ideas !!

Kirsten.

[AussieOI]

Actually I did find this book : Jodi Epstein Rhum, author of : Pots: Together We Stand

No idea if it is any good

[Libby]

Hi Chlay! Sorry you have reason to be here, but glad you found us!

Let's see. Things I wish I had known...

- Compression stockings work to keep your blood from pooling, but they are UNCOMFORTABLE. I have 3 pairs sitting in my drawer, rarely used, because they make my legs/feet cramp pretty badly. Some people love them, but I wish I had just gotten one to try.

- Ginger is just as effective as over the counter nausea meds. And ginger beer is much more delicious.

- If you haven't already, I'd recommend getting your vitamin D and thyroid hormone levels checked. A nearly non-existant level of vitamin D was the cause of a bunch of annoying symptoms that I had just thought were part of POTS. Same with thyroid - the main symptom is fatigue.

I hope that at least contains something you can use, haha. But either way, welcome!

[looneymom]

Welcome Aboard,

Besides your D levels, you might want to get iron level checked. Drink 2-3 liters of water or gatoraide. My son is in the bathroom constantly if he drinks more than this. He also seems to do better if we alternate it. Thermotabs are great for sensitive stomachs and I always have an extra bottle in my purse for emergency situations. Try to do some exercise, even if you have to sit down to do it. Using a physical therapist is a great way to get started. Hope this helps.

[Orthohypo]

Sea bands for nausea - acupressure bands for wrists.

Compression stockings at 20-30 mmHg are manageable for me. Doc says higher levels are too hard to get on and create banding that actually cuts off circulation. I can't get through a day without mine!

The video documentary by DINET on POTS on YouTube and the video of the Webinar by Dr Rowe also on YouTube.

Yoga classes and yoga Nidra healing meditation (available online by Amrit Desai. He has a very soothing voice as opposed to another one I downloaded in an app.) once you do this meditation a few times it makes you feel like you have a perfect body! It's lying down, so if you can relax it's super easy to do.

[SpinnyC]

Sorry you have to be here- but welcome!

Let's see- three things I wish I'd known when I was first diagnosed:

1) Always tell a doctor/nurse/emt/dentist the full name of what you have not just the acronym. Give a short description of what the condition is and how it specifically effects you. So for Pots don't just say "I have Pots" say- I have Postural Orthostatic Tachycardia Syndrome, which is s form of dysautonomia. My autonomic system doesn't function like it should and then tell them your personal symptoms. Because when a medical professional nods knowingly after you tell them you have Pots, there's a good chance they don't actually know what you are talking about. And even if they have heard of it they might make wrong assumptions about what Pots is- like if you have Pots you must have low blood pressure and faint- which isn't always the case.

2) The app that turns the iphone's flash into a heart rate monitor is awesome and very handy.

3) Trying to find a root cause is important. Even though you might not find it.

[Chlay]

Wow I wasn't expecting even 2 replies this is amazing, I will get my PA to read them out to me(:

Thankyou so much for taking the time to comment(:

Sending you all tons of positive vibes and I may be back to ask questions!

Healing vibes and thankyous for you all x

[misstraci]

1. Just breathe!! because sometimes I forget to. deep, relaxed breathing is so beneficial for so many things. focusing on breathe helps calm our nervous systems. slow heartrate/blood pressure, etc.

2. ER doctors are rude, unknowledgable, and uncaring!!!

3. It's ok to ask others for help.

[Aimes]

1. I wish I wouldn't have just stopped with the POTS diagnosis. It never occured to me that there was probably more going on. I was so happy to have the POTS diagnosis and learned to manage my symptoms well, but then I suffered a major crash with all new symptoms. I now realize I was always dealing with something more than just POTS, I just wasn't connecting the dots. I've always had unexplainable illnesses, infections, stomach issues, etc. but didn't think it was connected until now. My POTSie brain is kind of slow! :-)

2. I still wish I could find a way to get adequate follow-up care. I live in a very rural area and it's nearly impossible to find doctors willing to learn about my illness. Mayo Clinic has been amazing during my crashes (this will be my fourth trip), but I would love to have a doctor close to home to help me manage day-to-day. I still haven't figured this one out!

3. It's important to be completey honest with family and friends about how you're really feeling. Don't try to sugar-coat it. Friends used to invite me out, I'd say yes (knowing I probably wouldn't actually be able to), end up cancling at the last minute because I didn't feel well, and they would get upset. This happened countless times and I lost some friends because of it. I think they would have been more understanding if I would have just been honest. I think I was probably still in denial about the whole thing myself. It's a process.

[khaarina]

1. When you feel too bad to go out, but you really want to, or feel obligated to...don't. If you refuse to listen to your body and exasperate your symptoms, one or more of the following will happen: 1. You will pay for it by feeling terrible for up to two days. 2. You will ruin the outing for anyone who is with you. 3. You will pass out or end up in the hospital.

2. Read about your condition, but don't get carried away. When we understand why we are feeling the way we do, it is easier to accept it, get treated, and get past it. However, it is so easy to obsess over it. When we obsess over our illness, we stress ourselves out, and stress can trigger our symptoms. Also, if it becomes aparent to our doctors that we are obsessing, they will start to dismiss our concerns and we won't get the care we need. Same goes for friends and family. There is a thin line between being sick and being sick and obnoxious.

3. Adjust your life to suit your needs. I was attending a big college campus when I got sick. I tried to keep going, but I eventually had to quit. It was just too much walking, standing, sitting, driving, and stress. All these things are triggers for me. I intend to go back once I find the right combination of meds to make that possible, but I realize that I may have to finish school online.

4. Find things that make you happy every day. Having a chonic illness is an emotional roller coaster. Some days you feel hopeful, other days you feel like your life is over. You need something to look forward to every single day. It should have nothing to do with your illness and it should not trigger symptoms.

[CarrieJessica]

Everyone covered my first thoughts.

I wish I had started taking potassium as soon as I started Florinef, or discussed having it monitored.

I wish I had asked for all records (labs, follow up as well as tests) as I went instead of having a heap of papers at one time to organize a year later.

I wish I had found the awesome bloggers right away (yes I am plugging my own too)

http://justmildlymedicated.blogspot.com/

http://bobisdysautonomia.blogspot.com/

http://dysautonomiac.com/

I am sure there are more out there.

[CarrieJessica]

This site obviously as well as http://www.dysautonomiasos.com/ too

[Monstrosity]

1. POTS is just a collection of symptoms. "Something" is causing them... I wish I would have pushed a few of my doctors the first year to finding the root cause rather than treating the symptoms. I'm now pushing them and being very direct about what I want. If they cant help me/want to run tests no hard feelings I'm off to see someone else.

2. This illness is very individualized. Be careful reading too many negative examples of people with POTS/Dysautonomia. Its very easy to get trapped in a black hole and not be able to find a way out...

3. Dont forget to continue living. Push to stay working, going to school and being somewhat normal. I feel like I put about 2 years of life on hold. I stopped/gave up so many things I enjoyed. If my finances are in order I'm going to buy another motorcycle towards the end of summer. I know its risky to ride and will be even more risky with dysautonomia however I don't care its something I enjoy.

[Angela]

******* good for you and your finances. sorry so many people made you feel like you dont still have a life.

[Angela]

- Ginger is just as effective as over the counter nausea meds. And ginger beer is much more delicious.

drinking ginger "ale" right now! just sounded good and then I read this post. So where do you get ginger beer? never heard of it but worth a try!

[Libby]

I'm drinking a bottle of ginger beer right now, actually. Yum.

The main difference is that ginger beer is fermented, where as ale is usually just carbonated water with ginger flavoring. There's a tiny, tiny bit of alcohol in it from the process, but no where near enough to have it be labeled as an alcoholic drink (though it does get a head on it, like a glass of beer!). I also think that the beer has got a lot more ginger in it than the ale, so it's a bit spicier - and does a better job of calming the nausea, imo.

My favorite is Reed's. I live in the northeast, so I usually get mine at Wegman's. But I'm pretty sure they sell it at Trader Joe's.

I also like chimes ginger chews for nausea (and just for a candy snack). They come in much more reasonable size packages than what I linked to at the grocery store, haha, but I got tired of always having to pick them up. Much less mess than a bag of crystalized ginger, and they work basically as well. Win win.

[Angela]

weli i guess. i believe in ginger tho. check out trader joes or sprouts. there both close by.

[Libby]

Oh, the chimes chews have real ginger in them. Quite a bit of it, judging by how well they deal with the nausea and the kick they have to them. And I'm not spilling sugar into my purse, like with the crystalized ginger, which is nice.

[ramakentesh]

1. Sometimes things that are the opposite of what you think will help actually help.

2. everyone has their theories but they cant all be right

3. patience is a virtue - try and live as best you can now because if there is a cure in five years time you'll be wondering why you wasted all your time worrying about it instead of living.

[Relax86]

3. patience is a virtue - try and live as best you can now because if there is a cure in five years time you'll be wondering why you wasted all your time worrying about it instead of living.

#3 is my battle. I'm in a small flare right now and handling much, much better. Usually January is my "flare season" but the last week has been a little bit funky. Less fear this time, feel more in control and can ride the wave a little better as a consequence. Very true that my main symptoms have been different - annoying none-the-less but will muddle thru. Beating the worry seems to be my biggest game these days.

[yogini]

-Don't try to do too many things at once (see specialists, try meds, etc). One thing at a time

-Take time off as much time from work as you can to get better

-Be open minded to any treatment that could work for you. (It took me 4 yrs to find Paxil, which controls my symptoms)

And a fourth thing:

-Most drs don't know about POTS. If you come across one of those, move on right away!