New In Cleveland

[sugartwin]

Hi, all. It's taken me several weeks to screw up the nerve to post here, although I've been reading everything, including the back posts. I'm a 29-year-old poet who recently graduated from grad school by the skin of her teeth thanks to (you guessed it) POTS. At the time (Sept. 08) I lived in Chicago and I was finishing my thesis when I caught a virus that made me so ill I was borderline septic when I finally had the presence of mind to go to the hospital. They were thinking that I had meningitis, AIDS or leukemia...that's how sick I was. When nothing panned out they waited until my immune system got back to more or less normal and then released me.

Despite that, I got sicker and sicker as the months wore on, developing insomnia, then migraines, then nausea, constipation and vomiting. Going to class became excruciating and at the end of my six hours of seminar I would be drenched in sweat and wincing in pain. Finally I passed out at my doctors office and was found to have a blood pressure of 150/120 and a pulse of 140. I spent nine days inpatient, three of them in the Coronary Care Unit. At the end though, they told me my anxiety about graduation was making me ill, even though I insisted I was overjoyed to be graduating and already had several job leads.

They prescribed a beta blocker but I considered to get sicker after discharge and soon got to the point where I could only spend about 20-30 minutes upright before collapsing, passing out or throwing up. It was abundantly clear to me that I was extremely sick, but every doctor I went to drank the kool-aid from the hospital I'd been in and said I was just anxious. I lived alone, and had to rely on friends for everything from cleaning my apartment and bringing and cooking me food. I impressed this to my doctor who continued to insist my problems were all "psychosomatic" even when I informed him I'd been losing four "psychosomatic" pounds a week since I'd left the hospital. The irony was that it was clear to me that even he didn't believe I was mentally ill, he was simply at a loss for what was wrong with me. I'd had an inkling the problem was with my nervous system and asked for a tilt table test. He said, it wouldn't tell him "anything he didn't already know."

I narrowly graduated, thanks to a professor offering me credit-by-portfolio and I soon became too sick and had to call my parents to tell them I couldn't live alone anymore. I left everything in Chicago: my friends, my work and my accomplishments. I still get sad to think of Chicago, which burns brightly in my mind, but never to ash.

At home in Cleveland, my mother took one look at me and took me to the ER. I'd been experiencing seizure-like events and had an oxygen saturation of 45 at one point. Despite this I got more visits from the psychiatrists than any other doctors. At one point, they forced me out of bed and frog marched me to the visitors area, saying it "looked bad" for me to be in bed so much. After five days of this treatment they were prepared to discharge me, but purely by chance they happened to hold my beta blocker and my heart rate shot up to 140, lying flat. They finally tilt tested me and after 22 minutes I had a blood pressure of 40/30 and a heart rate of 180. I didn't pass out, but the tech begged me to let her stop the test, so I did.

That was mid-July. Nowadays I take Florinef, Metoprolol and Lyrica along with occasional Ultram. I still do suffer from convulsions periodically, which drives me nuts, especially since they went away for a couple months after I started Florinef. After a few days in the hospital (again) the neurologist said there was nothing he could prescribe to help me since they weren't epileptic in nature.

• I've read that some of you suffer from these POTS-y convulsions. Have you found any effective treatment for them? Oh my God, please say yes. I have a lot of stairs in my house, and I've already fallen down them twice thanks to these.
  
• Also, is there any particular treatment that works better for people with attendant connective tissue problems? Before I was diagnosed with POTS I was diagnosed with joint hypermobility syndrome.
  

[Broken_Shell]

Hi sugartwin,

Welcome to the forum. I am so sorry to hear about your suffering and losses. My heart goes out to you... I am 27 years old, and I have a story similar to yours. I had to leave graduate school two years ago, just 9 months short of earning my degree. I had tried so hard, but part of my program required 10 hours of clinical work a day, and I was just too ill to be able to manage. I also had to move back in with my mother, and like you I am scared and miss my independence so much. It is a shame how many doctors assume that dysautonomia is a psychosomatic illness. I went through the same thing before diagnosis. I hope that you are able to find a set of doctors who understand the condition and can treat you. Have you tried the Cleveland Clinic? I know that they have a well-known dysautonomia center there. I also experience "convulsion-type" jerking, often accompanied by abnormal blinking. I don't know of any treatment for this symptoms other than using medications and lifestyle adaptations to try and keep the body in as stable of a state as possible.

I hope that you will find a lot of support and guidance on the forum, and I look forward to seeing your posts!

~ Broken_Shell

[shadesofgrey49]

That must have been such a frustrating journey! Congratulations on graduating. That's a huge accomplishment. Unfortunately, I don't know anything about convulsions.

It sounds like aside from the convulsions, you have a better handle on things now, which is great. Maybe some day you can go back to Chicago.

Are you going to write poems about POTS for us? I'm a journalist. I'd like to write hard-hitting stories furthering POTS awareness eventually.

[sugartwin]

Are you going to write poems about POTS for us? I'm a journalist. I'd like to write hard-hitting stories furthering POTS awareness eventually.

I've already written a couple, though they aren't about POTS per se, more about my general feeling of frustration in dealing with POTS, though there are a few lines that would "give it away" to someone in the know.

I did my undergrad in journalism! Maybe we should collaborate? I also think that there's a terrible dearth of information on POTS in the media and would love to write an article and put it in a magazine that lots of young women read.

[sugartwin]

Have you tried the Cleveland Clinic? I know that they have a well-known dysautonomia center there. I also experience "convulsion-type" jerking, often accompanied by abnormal blinking. I don't know of any treatment for this symptoms other than using medications and lifestyle adaptations to try and keep the body in as stable of a state as possible.

I'm actually set up with the Clinic now, but the earliest I'm able to get in is December. I asked to be put on the waiting list, but I don't have high hopes, honestly. As for treatment you suggested, I suspected as much. I'm on an increased dose of Florinef now, and I just hope it works as well as it did the first time around, which I'm not sure of since now I have anemia complicating things.

Ahh...I'm just impatient. Thank you so much for the warm welcome.

[csnell325]

what dr are u set up to see at the clinic?? have as much documentation with u or sent before ur appt as possible it will speed things up a lot! i just started seein dr jaeger in sept and so far so good i really liked him and their clinic all together very big but all inclusive its nice not to have to go everywhere to get and do everything! anyway i wish u well i understand what u r goin thru i am a nurse and had to stop getting my next degree which i was in the middle of and had to quit workin and i have 3 small children ! im here if u need to talk too!

[potsgirl]

Welcome to the forum! I'm glad that you found us and that you got up the nerve to post. You'll find lots of information here, and it sounds like you'll be seeing a good doctor at the Cleveland Clinic. It's a great place.

I'm sorry you had to go through so much suffering and trauma during what is a difficult time in your life - getting that master's degree. Kudos to you for finishing! I got mine before I got sick, so I was very lucky. What I miss most is that I had what I considered my 'dream job' in anthro/archaeology here in Tucson and had to leave work a little over two years ago.

I'm now on disability, and I hate not being able to be really active anymore! You may want to consider applying for federal disability if you're too sick to work. It's a long process, and if you're not feeling much better over the next year or two, you'll be glad you have it. BUT, let's also keep hoping that you're going to feel much better soon, and that the CC can help get you more stable.

Cheers,

Jana

[brownsea]

hi sugar

hope you start to feel better soon. im glad you are getting proper treatment at last.

two years ago i started having symptoms, and the docs, after a few tests didnt want to know. may this year i was incredibly unwell, and had to pay to go private. at last im attending tests, which hopefully by christmas will be over.

they also think i have hypermobility syndrome.

welcome to this positive site.

emma.x

[sugartwin]

what dr are u set up to see at the clinic??

I'm seeing Dr. Fouad at the Clinic. After being diagnosed in the hospital, I did all my autonomic testing a month later. But I won't actually see the doctor until December; that's the frustrating part. I think she's an awesome doctor: very thorough and attentive to detail, but so hard to get in with!