Dizzy Dame

I used to have this symptom when my POTS was at its worst. Despite trying dozens of different medications over time, that symptom was always around. I could never account for it, but it did go away once my symptoms began to improve. It's been years since I've experienced it, but I remember it being terrifying. I even asked about it while I was a patient at the Vanderbelt studies and they had no idea what I was talking about.

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

Symptoms started as free floating anxiety, no drug could get it under control, then came shortness of breath sometime with and without anxiety, the attacks would last anywhere from 1-3 hours and sometimes occurred while just sitting in a chair. Next came the tachycardia, and then all 3 together. Thats how I got my POTS.

Mine started the exact same way. I'm convinced I developed POTS because of a very abusive/neglectful childhood. I see a therapist who I believe has helped me get physically better just by processing my trauma. While I don't beleive trauma makes people sick, I believe it lower our bodies defenses and makes us more prone to illness. I feel like some people process their emotions physically, and illness can be more common in them, but that's just my 2 cents.

For me, I can't feel my PVCs and PACs (my irregular heartbeats) unless my BP is high. Normally my BP is very low despite meds (usually at 90/70) but it goes up to "normal" frequently and then I'll feel my heart-beat and irregular heart-beats. I talked to my doc about it a long time ago and he said it was not dangerous, just a bit unnerving. Now I just ignore them. Hope that helps you.

I saw a neuro at JH when I was tested for Myesthenia Gravis. He had a horrible bedside manner but in the end he helped me, however, you'd probably be in a different department anyway. Overall the hospital has a very good reputation, I had no complaints.

Hope that helped a bit,

D

I'm not a single guy with POTS but I am single. I've been through 2 relationships while having POTS and dated many men as well between those relationships. They key is just owning your illness and being honest about it from the very start. You'd be surprised how for many people, POTS is NOT a dealbreaker. I almost like having POTS while on "the market" because I tend to attract nicer, more caring people since the selfish ones don't want to date a sick girl. Feel free to PM me if you want any advice.

Hey all,

I know this is totally last min, but does anyone in Cleveland want to meet up for lunch or something? I'm in Cleveland for a(nother) neuro workup and rememberd that many on the forum also live in this city. If it won't work, that's fine. I'll be here around this time next month if anyone wants to set up something then. It's always great to meet my fellow POTS suffers when it's possible.

-Lauren

When I first joined these forums a member wrote a post that has affected my whole mentality on my illness:

Imagine that everyone on earth has a certain amount of energy that can be thought of as a "budget". Let's pretend that the average person has $1,000 in a day to spend and the average cost of energy per activity is $5, big activities are $40 and little activities are $1. It would take that person ALOT of strain to spend their whole budget so they never have to worry about it.

Now let's say I only have a budget of $10 because of my POTS. This means I can do a few small things in a day, but if I overdo it I have to borrow into tomorrow's funds, meaning if I spend $15 bucks, I only have $5 the next day. Or let's say I spend $20...then I have NO energy the next day and have to rest. If I spend $25 then I suffer the next 2 days with bad POTS symptoms.

If I budget my energy then I can have enough energy per day to do things I want, but if I have to do something major (let's pretend I go to a wedding) then I suffer the next day to pay off my energy debt. Even if I have a really good day, I still remember that there is a budget that I have to stick to.

By using this mentality I've been able to avoid many many crashes, as well as predict crashes. I have the choice to go into energy debt or to save energy for a big event. I just listen to my body, and when I feel tired, I rest. I'm not sure if I explained that well at all, but learning to budget has been my best survival tool so far. Hopefully the philosophy will help others as it's helped me.

Hi you, tried to send pm, your box is full girlfriend! No other way to contact you. I will pm when you let me know it will go through. You are a social butterfly!!!!

Hehe, sorry about that Morgan. I cleared it just today. I had PMs left over from 2006 so it's not from being popular but more from being lazy

Glad to "see" you again

Hugs,

Lauren

Heya Bella, here is a link to a website about hemipelagic migraines, this may help you.

http://emedicine.medscape.com/article/1142731-overview

Also, yes, I also get facial droop during my worst ones. I also have become fully blind in the paralyzed side's eye and will have hallucinations in the "good" eye. Of course all my symptoms go away in time, until I get another migraine. You may want to see a headache specialist if you're having those symptoms.

Hey all, after many years of dealing with (and healing from) POTS, I've developed severe migraines that mimic a stroke (called Hemipelagic Migraines). The symptoms of the migraines include 1-sided paralysis/numbness, nausea, severe to mild confusion, and visual disturbances. Usually they are so bad it takes weeks to recover from them.

Has anyone experienced anything like this? I'm curious to see if this is something that is "more common" in POTS patients. Generaly it's a 1 in a 1,000,000 diagnosis among the average population.

Tea, I have to agree with you in your mindset. I spent my first 3 years of illness railing against it, I didn't start to really improve though until I relaxed and just focused on my personal treatment. I think it's healthy to try to figure out POTS to a point, but I feel there is a point where worrying about it can just prolong or even worsen the illness.

I'm not saying anyone's doing that here in this thread, and I'm not trying to discourage anyone from learning about POTS, but I know I made myself worry about it to the point of getting worse and wanted to share that as a bad example. I hope everyone on the thread also remembers to take time for their recovery in personal ways: for me, meditating, taking time to enjoy small things like sunsets and good food etc contributed the most for my recovery

Lots of love and healing wishes for everyone

-Lauren

My POTS has gotten alot better (hence me only posting once a year or so) but I used to do alot of video-gaming. It made me feel like I was doing something productive even though I wasn't. I mostly played online games with other people like World of Warcraft, but I used to play a ton of Racing games online as well. Blogging is also a good way to fill up time.

Good luck,

Lauren

Hi gang,

It's been probably a year since I posted on this forum. I hope all of my old friends are doing well, and hi to all the people I don't yet know. Over the past year since my lyme diagnosis my health improved for a time, then got much worse, and now is improving again. Unfortunatley I'm totally broke---living off government cheese and ramen---and am about to lose my apartment (my family that previously helped out with my expenses has cut me off financially). So lately have been questioning whether or not I can get a job of some kind, because it's basically a choice between working or going homeless. Literally.

The only problem is I still get brain fog if I feel sick (wich is about 90% of the time), and I'm unable to stand for more than 10 minutes at a time without vomiting and/or fainting. I basically need a job where I can work from my bed and don't have to think too hard about what I'm doing.

Has anyone here had experience with getting at-home jobs? More importantly, is there an orginization I might be able to talk to who can help me find a job that will accomidate my many many dissabilities? Any advice or funny stories apprieciated. By the way I'm living in the Columbus Ohio area, not sure if that means much.

Lots of love,

D.D.

Angela I'm so glad to hear things are going well! I remember when you were still too sick to work and it's nice to come back to the forums and see how well you're doing!

You'll be in my thoughts Belinda

Hopefully you'll start getting some answers, and maybe even some treatments that help!

Hugs,

Lauren

Hi guys,

I'm so sorry I've been gone for so long, but I felt I needed to take a long break from the support forum while I began my lyme treatment---so I could devote all my energy to getting well.

The first 6 months of treatment I had horrible reactions to my antibiotics and began having seizures...my POTS also got so bad I couldn't stand for more than a minute without becoming severly hypotensive. However, after a several month break, I restarted treatment about 7 months ago and have seem some pretty amazing improvements.

I still am disabled by my POTS, but I'm able to stand for about 15 minutes now on my medication without getting dizzy, and my tachycardia has improved considerably---only ~110 bpm after 10 minutes of standing lol. I still have about a year or more of treatment left...I'm going to begin hyperbaric therapy in the next few months, and should graduate to IV antibiotics this summer if all goes well. But I can definitley say that taking things slow has been the best route for me, I'm able to tolerate my treatment, which is very very important.

You all have been in my thoughts and prayers, and now that my health is improving I'm going to try to post on the forums more. I know there are alot of new faces and I'm looking forward to getting to know all of you

Hi guys,

Geez there are so many new faces here on Dinet! and it seems so many of the old-timers have been on Dinet vacation (myself included). Hello to everyone I haven't spoken to yet! I hope you've all found help and friendship here at Dinet.

I've been absent for the past six months for a variety of reasons. In the fall I was diagnosed with advanced lyme disease after 1.5 years of searching for answers and being very disabled by my POTS and other symptoms. I started antibiotcs in Novemeber of 2006 but very quickly became severely ill after having a Herxheimer reaction to the medication. I spent the entire winter and spring bed-bound, having seizures regularly...and generally feeling like I'd been put through a trash compactor

However, in May I restarted treatment (after a 2 month hiatus) on a lower dose of a different medication and so far things are going very well. I've begun to notice small improvements in my energy levels as well as my orthostatic vital signs (I can stand for 5 minutes and my pulse stays under 150!).

I still have a very very long road ahead of me but I'm confident my health will continue to improve, slowly. I just wanted to check in to say hi to all my Potsy friends, and to let you know that so many of you have been in my thoughts and prayers even though Ive been absent for so long.

Anyways, just wanted to stop in and say hello! I hope that others who are going through lyme treatment are having similar improvements!

Hugs,

Lauren

I'm here too, sorry I haven't been posting in a few weeks. I began to have seizures as a result of coming OFF my antibiotics for treating my lyme disease (we had to stop them because they were making me too sick). I've been sicker than I was when I was having horrible reactions to the lyme treatment. It's been very rough both emotionally and physically.

I would have posted, but I assume that no one on the forum has had any experience with seizures caused by lyme, as this is a POTS forum. Right now my doctors aren't even sure we can retry the antibiotics, which means I will only get progressivley sicker over the years. I'm already bedridden, so that's a very scary thought.

Anyway, sorry to come on after weeks of silence just to whine. I'll be back for real once I'm in a better place about all this.

PS. Ernie, I really hope you're ok dear!

Oh Jacquie, I'm sorry!

I recently also missed an important doctors appointment because I was too sick to travel. It's the pits, and left me very depressed about my health.

Hopefully you can find a way to get there some other time.

Hugs,

Lauren

Are you able to travel? If so, I'd suggest looking into some of the clinics others on the board have had success with, names that come to mind are Vanderbilt's Autonomic Clinic, and Mayo (both in Fla and Minnesota).

As for the "holistic" route, I'd be very, very cautious going down this road. Many holisitc "MD's" aren't even real doctors, and have questionable training and backgrounds...they also often don't take health insurance and can be extrememly expensive.

But I hope you get some relief! Hopefully someone on the board will know non-traditional MD's who are trustworthy and can help if you don't want to--or can't--visit one of the larger autonomic clinics.

I get similar episodes, but I'm not cold, just shaky. I always get them after a big adrenaline surge (usually because I've overextended myself that day or the day before).

I wouldn't invest much in what they told you at the ER, though. ER docs are bad diagnosticians and like to attribute everything to anxiety. You may want to talk to your cardiologist or neurologist...whoever treats your POTS.

Wareagle, why do you have to have steady hormones? I use orthotrycyclin low, which has three different tiers of progesterone, but the same estrogen...is this bad?

I haven't had any problems so far, but I'm wondering now if I should switch.

I have this all the time. Pretty much any time I wake up during the night I get this feeling. My guess is the tachycardia contributes to the tightness in my chest.

I take continuous birth control, but I still have to have 1-2 periods per year. I know there are others on the site who have controlled their periods in the same way.

I hope that helps