Any success stories?

[kkirsten]

In need of a bit of optimism or hope here, as I personally can't carry on living with dysautonomia. No meds are actually helping a single symptom that I have. I am waiting to see Dr. Gall (UK specialist) privately, yet I am actually almost scared that this visit will make the diagnosis of autonomic issues permanent, and for me that feels like a death sentence as I am in university and feel all future hopes have been shattered.

I have tried to be very hopeful, trying extremely hard to carry on going out or studying, revising (I had 5 months of bed rest when first hit, and got up after that, trying to resume my life asap). Yet the flares I have feel like actual heart attacks, and I can't lie flat at night to sleep, everything is awful and I really hope I don't have to have this for years to come..

I wanted to know if anyone had any success, i.e. their dysautonomia went away/ got much better slowly/ any kind of success, as I am just really not someone who is optimistic enough to live with something awful like this. Everyday I think about the past when I was fine (13 months ago) and I spiral 😓..

[dancer65]

Hi

Sorry you are struggling I remember thinking I would never get any better.I hope my story will help. A member here friended me and gave me advice and hope , I am so grateful to her.

Five years ago I couldn't stand still at all I was too dizzy and I would faint , I was diagnosed by my GP by active stand test and put on florinef I was taking maximum dose . I improved slightly but BP always low still tachy and waited 20 months for TTT to confirm VVS and POTS it was a living h***. I finally was sent to Syncope unit at Royal Brompton London where I was changed to midodrine  and had very good support from the syncope nurses. 

Five years on I am back to full time work , running my home again and a very limited social l life but I am grateful for my improvement. I am so in tune with my body that I know my limits and I now listen instead of pushing through and ending up in bed for a week !  I am lucky to have a wonderful husband and son with some very kind friends and I enjoy time with them when I have the energy . 

I have just about changed everything in my life ! I believe midodrine help me start the improving process, it rose my BP which made some symptons more bearable . I decided to  only work to improve one sympton at a time and as that improved I tackled the next.I often found that it would have knock on effect of improving a different sympton that was a plus ! 

I kept notes on everything and over time could see what was working what wasn't. It has been a long hard journey and each day has it challenges but my attitude and approach to daily life has changed to alow me to be content . Pacing , diet, meditation, mindfulness, sleep hygiene and getting rid of as much stress as possible has all helped. 

I hope you feel beer soon 

[KnickKnack]

I'm so sorry you're having a tough time. My journey with POTS started seemingly out of nowhere, in January of 2015. It felt like a switch was flipped overnight and I went from a healthy person to a sick person.

I dealt with severe fatigue. So bad that I couldn't move from the couch for days and dreaded having to get up and walk anywhere. I was dizzy, had brain fog, racing heart, all the typical symptoms, and it was miserable. I even lost a good deal of weight because eating made me feel sick.

Sometimes, I also felt like my future was really uncertain. It was especially frustrating when I was going to different doctors trying to get answers. (I finally did, but it took me a few years.)

I've never been on meds, but tried upping my salt, water, and wearing compression socks, none of which made a difference. Through some trial and error I eventually discovered there was a really close connection between my sleep schedule and how bad my symptoms were. If I don't stay between my scheduled "window" of sleep, I can tumble right back into POTS-mode. When I'm well rested, I have very little symptoms, often none at all.

Don't lose hope, even though things are obviously really tough right now for you. If you don't already, I suggest keeping a journal where you can track your symptoms, sleep, diet, etc. It may help you to see if there are any connections between things. And listen to your body. From my own experience and reading posts on here, it seems that it's common for dysautonomia symptoms to fluctuate and cycle. So keep in mind that how you feel isnt necessarily how you'll feel forever. 

Hope you get some answers and relief soon. Thinking and praying for you. 

 

 

 

[Pistol]

Dear @kkirsten - I too have been in your situation. When POTS first hit me I had no idea how to deal with it. I kept pushing myself and tried to ignore the symptoms and that made things much, much worse. I ended up no longer able to work or function and went into a depression. I thought I could not live like that any more, every day was a struggle just to leave my bed! But once I realized that my attitude would worsen things again I took steps to improve - and ever-so-slowly I did. Exercise ( I know, it sounds impossible ), healthy diet and being kind to myself has helped to fight fatigue, OI, BP and depression, meds did the rest. Today I am in a much better place. -- You are so young, I know of many young people that suffer from POTS and had to skip one or two years of school due to severe symptoms but most of them are fine today and finished their school. You say meds are not helping - sometimes it takes a lot of trial-and-error to find the right one. Every time I tried a new med I was convinced that I was cured just to realize it did not work. Things do get better and you could be like me: looking back at this scary time and being thankful that it is over!!! It is possible that your life will be just as great as you are planning - it may just require you to limit yourself a bit and LISTEN to your body. Be well!

[bombsh3ll]

Hi kkirsten,

I'm so sorry you're dealing with this so young, my heart goes out to you. I can totally relate to the feelings you describe. I am also in the UK (Edinburgh) & know what a struggle getting help can be. 

I too have yet to find a helpful treatment, but remain hopeful that one day I'll find something that will improve my quality of life. In the beginning I tried Licorice root capsules from Swanson which can be bought online. I didn't expect much from a herbal product but the effect was phenomenal, something no drug has been able to do. This only lasted about a year, but it may be worth a try just to get you out of a slump/tide you over until you see Dr Gall. 

Exercise is also recommended - I am only really able to do recumbent cycling but if licorice gave you the chance to start some serious upright exercise, doing this may also help you pull out of it. I wish I had pursued upright exercise more when licorice root was working for me, instead of just being thrilled that I could sit comfortably and walk a bit & content with that thinking it would last forever. 

If you are still figuring out what to do about salt/fluids, I find drinking oral rehydration sachets better than either ruining my food with salt, mixing salt in water or taking salt pills.

I wear both knee high compression socks then compression tights over the top - your GP can prescribe these if you don't already have them. 

I would be really interested in hearing how you get on with Dr Gall, as I have thought about seeing him myself. How long is the wait privately?

Best wishes,

B xxx