Back After 4 Years--Recovery Story And A Question

[Dizzy Dame]

Hi all! It's been a long time since I posted here, and I'm sure most of you don't remember me, but I wanted to make a post because after several years of being essentially symptom-free from POTS and other autonomic problems, my symptoms have started to resurface.

First, I'd like to write a paragraph about my recovery, because maybe it'll help some of you in some way. I'm not a doctor, I'm just telling my own story, and what worked for me may not work for everyone.

I became sick with autonomic symptoms in 2005. I developed terrible orthostatic intolerance, and--like most people with POTS, would experience a drop in my BP and rise in my BPM when standing for any period of time. I also experienced other neurological symptoms ranging from severe headaches, to peripheral neuropathy in my hands and feet. Over time, these symptoms progressed into constant nausea, difficulty with bowel movements, and a rare form of migraine called hemipeligic migraine--which mimic strokes. When things were at their worst, I was completely bedridden, was in and out of the hospitals neurological ward 2-3 times a month due to seizures and comas that were migraine related, and I was also bleeding behind my corneal nerve and told I would go blind.

After many years of suffering, and seeing probably 50 or more "specialists", with no real improvement, I began to see a doctor at the cleveland clinic who specialized in complex migraines. She put me on a drug called depakote, and slowly, I began to improve.

We never figured out what was actually going on with me, but after developing a good relationship with a psychologist, it was unofficially suggested that I suffered from this condition due to PTSD caused from long-term abuse when I was a child. He (my therapist) said that he believed that our (meaning people) minds and bodies were much more connected than medical doctors like to believe, and that in his many years of working with PTSD cases, he noticed that his patients with high levels of past psychological trauma often had health problems as adults.

While most would probably bristle at such a suggestion, I was so desperate at the time for any cause that I embraced it, and we (my therapist and I) began working in earnest to treat my PTSD. I believe that in my case he was right because while I'd been improving slowly on the depakote, my improvement increased tremendously once the PTSD therapy got underway.

I'm in no way suggesting that everyone with POTS or my symptoms just needs therapy. I just know that in my case, this was what worked for me.

Anyway, I've been symptom free for awhile and have seen a complete turn-around since then. I'm now married, I'm the vice president of a successful business my husband and I started, and I'm in a master's program at a top school.

However (and I hate to say that word), lately things haven't been going so well. I've been under tremendous stress for the past few months, and last week, a problem client of our business attempted extortion against us in a desperate effort to get money they weren't entitled to. The stress of having to pay for our business attorney to get involved--which has put us in the hole financially--seems to have been too much, and now my POTS symptoms are back in a bad way.

Have any of you ever experienced a recession in POTS symptoms for long periods, only to get sick again? How did you deal with this? If you recovered from that resurgence, what things did you do to help with this? I'm terrified that I'll lose everything if this doesn't resolve quickly---the first time I got sick I lost literally everything I had, I don't know how I could survive that happening again.

Thanks in advance for your replies. Also, feel free to ask any questions if you have them

Cheers,

Dizzy Dame

[Angela]

hmm. a mayo clinic dr. (the only mayo dr. i have seen) that specializes in analyzing siezures and epilepsy suggested that I do not have seizures but brain slowing due to pots....note that I have a dva (has to do with vein abnormalty i.e. veins look like medusa in your head, only affects 1% of population and not considered dangerous unless they detect a carn mass where the blood is being dumped into) ironically it is in the same area of my brain as where the brain activity was abnormal (slowed) on my eeg which I believe has to do with everything or at least something. however, he believes I developed pots due to ptsd from my messed up childhood and eventually caused pots. I don't feel as if there was anything I havn't worked thru as far as the circumstances I have survived, I completely feel i am free from all past "demons" and very strong mentally, whatever, so I still am not sure I embrace his theory....i think there is more going on that is not quite understood. interesting tho that you kinda had the same dx for pots. I know for sure that when I am experiencing stress i have a flare but from whatever i understand stress affects all pots patients negatively. and nonpots people too.

however again, I experiance flares, not constant pots for the last 8 yrs I suspect as well as mcas. I am also hyperandrenergic not low bp except in the a.m.

hope u feel better soon.

[Relax86]

I had a flare in 2009 which I felt really bad for 2 weeks, then felt crappy and unsure why for about 6-8 months. I found DINET but recovered and talked myself out of the POTS diagnosis. I had another flare in 2012 - had a 4 day hospital stay where I had way too many blood draws causing low blood volume and that flare had me bedridden for weeks, and sick after that for months. It's been a little over a year and I did recover. I don't think this flare would have been so bad without all the bad bloodwork and poor or no care to follow. It delayed my recovery. Nonetheless I re-found DINET, finally admitted to myself what was going on and also this time my family Doc diagnosed me very early but had not clue how to help me. My long winded point is that staying ahead of the worry might just be your best defense; you've already recovered before and can do it again. I found reading peoples posts and stories here empowering and educating. "Meeting" people here like me was comforting. And yes there are many who get better. Good luck

[badhbt]

I had a flare 10 years ago. At the time I did not know what was going on. It happened after a bad illness and lasted about 5 weeks. I lived symptom free

for 10 years. In August 2012 I had another flare and have had symptoms since. I was diagnosed with POTS in November. I am not sure what triggered

POTS this time. The only thing I can think of is I was working out really hard. I was doing a boot camp, and I would work out twice a day. I was also on

a calorie restriction. I think this put stress on my body...physical stress. Ten years ago I was in the ER of the hospital that I worked at.

They drew blood work and tested me for drug abuse ( I am a Nurse) and sent me home telling me I had anxiety. I was so

humiliated that I didn't go to anymore Doctors after that. I am not sure why I got better. I didn't know about salt loading, meds, etc. I don't know how

this helps you at all. All I can say is take care of yourself and listen to your body. Try to lower your stress as much as possible. This is such a fear

based syndrome. On my good days I am looking around wondering when the other shoe will drop.

[Lemons2lemonade]

Dizzy Dame,

I think you can fight this relapse if you can find a way to distance yourself from the stress that is going on in your life. Do not give up that easy! And do not worry about what you can not control. It will do nothing for you.

[ramakentesh]

Dizzy its the story of my life! It goes away, you get on with life, start to relax and bam! My doc says 25% of his patients wax and wane.