Altruism

Thanks for the warm welcome, ladies. I am sorry we are all in the same boat...

Honestly, I felt Really unwell for 2 days but today I managed to use my bike, went for a walk, spent the day outside and went shopping twice. And showered lol I tend to try to squeeze in as many activities as I possibly can while I can which might be bad idea but I'm so scared of being stuck in bed again..

MomtoGuilliana, happy to hear you are doing well. I do see a naturopath and a POTS doctor in my county. I am seeing her next week. 

Bladerunner, first time I recovered with Zoloft, Klonopin, tons of rest, live in nanny, water physical therapy, EMDR, compression stocking, Powerade and lots of aggressive standing. I never stopped my meds but dropped everything else through the years. Just bought 25 Powerade and new Sigvaris socks and I am starting all over...

i don't think I ever recovered actually. What do you all mean when you say it?  I mean I am symptomatic but feel ok enough to function. My pulse keeps being all over the place, but if it goes from 85 to 115 I am functional.  Initially it was 160 when I stood up and 140 sitting....

Hi folks.

Some of you might remember me as the severely  ill mom of a newborn fro 2012. I had an extreme case of delivery-induced POTS. I have slowly become functional, found an awesome job, traveled a lot, went to conferences, bought a home and led a normal life with occasional bad days once a month or less. 

Something changed. I have been having more and more bad days and I thought I can push through, but last night  crashed completely. I am INDESCRIBABLY exhausted, crawled up the stairs last night and had my husband undress me. I lot my ability to speak from fatigue. Today is slightly better, but still VERY unwell.

I remember some awesome folks from here like SeattleRain, MomtoJullianna, many more and while I truly hope you are long gone from here and recovered, I do also hope to see familiar faces to give me hope. Just got my recumbent bike out again. I think I will lose the job I love so much. Worst of all - I have lost hope this will ever go away.. 

I need a dictionary to answer these LOL

I get admitted from ER to Cardiology every time, all I have to do is stand up. My hr goes immediately above 140-150 and they panic. Try that. Overlake ER in Bellevue it is. No one helped me there, however..

See dr Thyerlei, she is awesome and so worth the long ride.

Sorry, I did not mean to sound judgemental. I completely understand how you feel... I'm on 75mg Zoloft and I really want it to finally kick in...

I'd take my Zoloft for life if it gives me my life back, honestly. Even if I put on 200lbs.

I'm so sorry, Ryan!! Get better, rest, call you doctor and lmk if I can help!! Hugs!

Got it I think it's both, but Klonopin is my life-saver! It helps all my symptoms and I'm now partially functional as opposed to being bedridden.I hope the Zoloft can replace it at some point...

How long have you been on benzo, Angela? What dose? Are your surges gone? Mine are 70-80% better...

Nope, no meds.

But it makes sense... if benzos, herbs or SSRIs can calm our ANS down, then we won't have an exaggerated response to normal stimuli...

Right?

I saw my cardiologist after doing MILLIONS of tests, MRIs, CT scans, cathecholamines, 24 hour sodium urines, standing/supine NE, TTT, autonomic testing, etc... All but the TTT came back normal. So, my new doctor has this very simple theory - why bother finding the cause and keep testing? I have POTS, my results are ok. It's trauma-induced. My body is super sensitive to the otherwise normal levels of catecholamines that I have. Could this be the answer? If calming down our ANS helps it adjust to the cathecolamine levels, then POTS should get better... Right?

This is an awesomely informative thread! Thanks a lot!

Still trying to figure out if I have MCAS..

No way, mine hurt too and I'm going thru the same!! I'm terrified of the removal, of the anesthetic, of my reaction and of my POTS getting worse. Ugh!

I started at 6mg LOL I cut a 50 mg pill into 8 pieces and veeery slowly added up. It took me 30 days to reach 50 mg. I'm taking now 75mg and the goal is 100 mg as my brain fog and dizziness are gone and I want to see what else can be improved with it. I was off the Zoloft, but my doctor asked me to give it a second try.

Other side effects that are minor for me and that started after I hit the 50mg were dry mouth, occasional headaches and teeth grinding at night, but I'd take these any day compared to the horrible adrenaline surges I had.

Well, you know me and you know my story. I'm on 75 mg of Zoloft now and 0.5 Klonopin twice daily. I am partially functional now and the severe surges are (almost) gone. The first week was a nightmare, I was crying in my grandmother's lap. knowing I'm dying. Glad I survived it, I feel better now.

Thanks, looking forward to it!!

My childbirth gave me severe PSTD and POTS, so I'd agree. To a certain degree. I'm doing EMDR to cope with both and it helps.

Katybug, this is exactly what I have!!! Looks the same!!!

Now... what's the cause... Ugh... Could it be autoimmune.. my ANA was normal...

Thanks. The confusing part is that I did not get a rash on my face or upper body where I was wearing a T-shirt, but on my thighs that were covered (wearing jeans). That makes me wonder why my allergy would be so localized?

How does MCAS rash/hives look like?

I'll be part of the 2013 conference as Peter Byers invited me, so I'll try to post the newest one. Thanks for the links.

Bump!

Today I spent about 1 hour in the sun and ate strawberries. All of a sudden I noticed huge hives on my thighs that look very scary! Could it be a POTS sun allergy or is it the strawberries?! I used to be fine with both sun and strawberries before POTS hit me. Seattle sun is a rare thing LOL so today it was my first sun exposure since I got POTS in November... Do you get these? No pimples, no itchiness, just plain big red spots on my thighs.

Scared.

Could it be MCAS?

I crash daily, so I spend 80% of my time in bed. However, I walk during the other 20% and I feel like death during that time. While in bed, I play with my newborn, watch Netflix, read a lot, research, chat with friends, play around with Photoshop Lightroom, etc.

There are many people on SSRIs on this forum, so ... bump. Need more opinions. Thanks.

Thanks for your opinions, however, there are too many success stories with SSRIs helping anxiety and POTS to ignore. I like this forum, but I also believe the majority of the opinions are biased. We need something to believe in, be it SSRI, benzo, doctors, etc. At least I do..

I'll give Zoloft another chance, I'm upping my dose now. It SHOULD work, my therapist today said it's not uncommon to feel better for a while, then the body adjusts to the dose and needs more, so all you need to do is reach your own therapeutic dose. If mine is 75mg or 100mg, it's ok. I'm still taking about 60mg and feel awful, but I'll try to survive. I have no choice, I can't live on klonopin forever. I WANT to believe it will work.

Anoj, how does an SSRI improve your dysautonomia? Lower HR? More ability to stand up? Fewer symptoms? Thank you.

Anyone ever experienced it? I started very low at 12.5 mg Sertraline (Zoloft) and upped to 50mg in 17 days. Initially it made my severe anxiety attacks completely unbearable, but about 10 days later I felt some improvement. I was feeling less nervous. Now, a month later, the anxiety is creeping back up. Does it mean I need a higher dose or simply it's not working? I'm taking Clonazepam 0.5 twice daily to help me survive the day. I can't live without it at this point.

Thanks.

I'm desperate. This is the worst gift for my 30th bday I need this to work...

A random question - what do you mean by 90% better?

You can do 90% of the things a normal person can do?

Or you feel 90% better every day?

Or your bad days are 10% of your life?

How functional are you? Do you work, do you go out with friends, do you travel? Are you non-symptomatic 90% of that time?

Thanks! And keep up the good work!!