SeattleRain

My symptoms have becoming worse and one that's become more frequent is when falling asleep, I wake up instantly.

It feels like the moment I go from conscious to unconscious, I stop breathing (or it becomes severely shallow) and then seconds later I wake up feeling like my heart contracted at 10x the force and jolts me awake.

This went on for over 7 hours the other night - literally. It must have happened several hundred times. I'd wake up from it, take maybe 5 minutes to recover, then the process repeated over and over and over again.

I'm wondering if anyone here has brought this up with their doctor? From Googling it sounds like Central Sleep Apnea...

I went to urgent care several times because my primary wasn't helping me at the time. In my experience, urgent care doesn't help any more than the ER. They just reffered me back to my primary every time. They didn't even run tests beyond vitals. The doctors who helped me the most where my second primary, who was willing to order test after test and specialist after specialist until he figured me out, and my second cardiologist, who understands autonomic disorders a little more than most doctors, had experience with tilt table testing, and knew what drugs would help (Midodrine and beta blockers). These docs have their flaws and both have looked at me a little sideways at times, but at least now I know what is going on with me to some extent and I have meds that help. The key is finding docs that are knowledgable about autonimic disorders and willing to take on a challenging case. It wont be easy, and you will likely have to go through several docs until you find the right ones, but they are out there. Good luck.

I went to urgent care and they brought in a wheelchair, forced me into the ER because I was complaining of breathing/chest/heart issues. That was a disappointment, too. Especially since they still charged me for the urgent care visit. Lame!

I run a forum with about 50,000 members and know how unbelievably annoying it is to get constant username change requests. At the same time, I hate my username and wish I could change it. What do you guys think of username change for a donation to DINET or something?

To further cement my point - we wanted to get a Total Blood Volume test done but the company that makes the test kits stopped making them weeks before I was to get tested.

The only place in the state that does the test no longer does it now, and this same company is the one that provides the kits to Mayo, Cleveland, etc - so I assume they don't have the kits either. SMH!

Thank you for the responses.

The April 9th appt. with my cardiologist was from a cancellation so I'm getting in ASAP. Before it was May 15th.

My cardiologist and his partner that conducted the TTT said in my notes I do not fit the diagnostic criteria for POTS. That was incorrect and I ended up correcting him on it because I meet the diagnostic criteria. The problem is it's Hyperadergenic POTS and if that were the case, I would likely have really high standing NE levels. I just re-took the test so am awaiting the results but it's unlikely I'll have high levels.

Most of my symptoms seem unique to me and don't know of many other dysautonomia/POTS patients with the same symptoms as me. So, I would think it is a misdiagnosis and think they're jumping to conclusions way too prematurely. I think my symptoms warrant further testing and that's what I'm trying to push for.

Well it's been almost 11 months since my onset of symptoms. In the first 8 months, I had an echocardiogram, zio patch, holter monitor and ER blood work/xrays. The process has been painfully slow. I feel like I'm wasting time while doctors drag their feet. I feel like having a full cardiac work up - tests that I haven't had yet. I also feel like if we don't find anything there, I should have something like a full body MRA to look at the blood vessels in my legs. I hate how all my doctors tell me my heart's fine because of an echocardiogram I had almost a year ago. I feel like asking "And when does that test expire?"

I'm wondering how those in the US are able to get admitted to the hospital. Every time I go to the ER I already assume that unless by some miracle they find something, my vitals will be normal. Every time it's the same: "We'll get the results of this bloodwork then get you home, okay?".

I feel like I'm declining exponentially and need tests done yesterday. My next cardiologist appointment is on the 9th and that's after a cancellation opened that up for me.

Any suggestions would be appreciated. I hate spending $900 to go to the ER for nothing unless they're actually going to admit me and get me into cardiology for more tests...

Thanks in advance for the responses

I obtained my previous X-rays from the ER today.

I still think my heart looks to big.

This is in October:
http://i.imgur.com/clXwSGp.jpg

This was last Saturday:
http://i.imgur.com/Y2I3VEE.jpg

Obviously will bring this up with my doctor but my appt's aren't anytime soon... Just curious to know if anyone else has compared their x-rays?

In June of 2012 when this happened I had hair loss that was barely visible. Now, it's completely visible and seems like every month is getting progressively worse. It could be coincidental but on the top of my head where I'm experiencing hair loss, it's always numb-feeling like it's being starved of blood.

I brought this up to my doctor and he ordered a testosterone blood test and the result was:

10.7 pg/mL

Standard range: 9.3 - 26.5

"Your testosterone level was normal. This is an important hormone in men that helps

support muscle strength and sex drive. Let me know if your symptoms do not improve
over the next few months."

They say best indicator of baldness is your Grandfather on your mother's side. My Grandpa's 87 and he has a lot of hair loss on top of his head however he had a full head of hair well into his 70's (not sure how that translates to me, though).

Thanks for the responses. The only thing I really consciously noted was that right before I fainted my heart rate plummeted and felt like it wasn't going to keep up this time (standing). It did not feel like my blood pressure dropped and ironically my face was throbbing with pressure like it usually does.

Then I started coughing right away after getting back up...

I'll have to see if there's a radiologist report that mentioned my heart. The doctor on call just said "no blood clot in your lungs" and that was it. I had gotten multiple chest x-rays in the past that the doctor said my heart was normal sized. SO, tomorrow I will attempt to go back and get hard copies of those then compare. If my heart does look bigger than in the past I will bring that info to my doc and see what he says.

Had a horrible day today. I stood up, and 15 seconds later I'm out. I went downstairs, let my dogs out, came back up the stairs and I collapsed again (almost fainted by caught myself).

I ended up going to the hospital about 5 hours later not feeling any better. I was really hoping this would push them to admit me for more testing or something. That didn't happen but they did take a CT scan. I had brought a paper with me on Pulmonary Hypertension (which I fit to a T) and I guess he mistook that with Pulmonary Embolism and wanted to check for a blood clot in my lungs (I was short of breath).

Anyways, I had my first CT scan...

Doesn't my heart look big?

http://i.imgur.com/bFUUKgl.jpg?1

Yes, it is a tricylic antidepressant.

Sorry for asking... But what is "NET"?

NorEpinephrine Transporter

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.

Too funny

That sounds like something I would do. Maybe put them in a pepper grinder and take a 0.05mg dose lol

Seattle - can I ask what career allows you to work from home?

I started an online advertising business in 2008 so unfortunately I can't recommend a company or anything. I do however know of lots of companies that hire people exclusively from home. There's also a ton of freelancing opportunities out there (design, writing, clerical tasks, etc). Don't want to get too off-topic for the post but that's what I do...

Thanks for the responses everyone. I guess I'll be getting x-rays some time to see what's going on with them. I'm most concerned about an infection that could spread and become systemic. Past that, I can deal with the pain so long as there's no real threat to my overall health. I had the same sort of pain right now that I did a couple years ago when they were coming in. It eventually went away and that was that. Now it's back and being a POTS worrier again I'm concerned about infections and stuff...

I would suggest searching for a job that would allow you to telecommute. I work from home and know many people who do this. My Mom has a co-worker who comes into work about once a week (she works at a window company). Another one of her friends worked from home for years for a large national bank. A friend of mine got hired by a start-up company 3,000 miles away and never even met his boss (only had to do a phone interview). The jobs are out there, you just have to be motivated and determined to find one.

You said you didn't qualify for disability so I presume that would mean disability pay would have been enough for you. That said, there are quite a few outfits online that hire people to work from home that don't pay very much (at least minimum wage - or contract work that would equate to however long you work). For example, one company hires people to do customer support from home, answer calls about looking up gift card balances. A friend of mine has a side job scheduling hotel reservations from home. Another for online chat support -- stuff like that.

I would not suggest pushing the disability issue. Unless your bed ridden and incapable of working a desk job I think it's a dangerous road to go down. 10 years from now when you decide you want to work again or the money doesn't meet your cost of living, you're in for a huge challenge. If they ever had to reform disability programs to cut spending, you'd be the first to go. Then you have no means of income and have to find an employer that's willing to hire you after being out of the workforce for so long. It makes it nearly impossible to save for retirement.

Anyways, that's my two cents. I hope you get it figured out!

Do you use compression hose and an abdominal binder? I've found them to be helpful.

Issie

I used compression stocks for a brief period a few months ago but their effect seemed to wear off rather quick. The abdominal binder I got didn't seem to make much of a difference either except I got really hot and had to talk it off...

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.

I thought you were off the Zoloft. That makes me feel better, lol. I'm starting at half a pill for a week which would be 25mg... Do you think the first week was a nightmare because of the medicine? Great to know you're doing a lot better...

I'm curious to know if anyone has gotten their wisdom teeth pulled while with POTS. Mine are starting to ache and I'm assuming if I got them checked out they'd tell me to get them removed.

I'm dreading this because of all the horror stories I hear. Out of about 15 people I've talked to, they all say it was one of their worst experiences (they all had them removed as adults). One friend came home, passed out and ended up the hospital. Another girl who had hers out last week ended up in the hospital, too. My step-dad said it was the worst pain he's ever been in in his life and could hardly take it. On and on with all these bad experiences.

I just don't think I could handle it with my heart problems...

I have had three sleep studies. The facility where I had my last test was quite nice but it is hard for me to sleep soundly with all the equipment hooked up. The test captures a whole sort of data including sleep stages, apnea events, oximetry, heart rate and limb movements. They provided me some pretty good information and found that I stop breathing quite a few times during sleep (but fortunately my O2 levels didn't decline much). They gave me a CPAP machine but I have had difficulty using it due to the pressure I get in my head. At a minimum, I try and avoid sleeping on my back to prevent apnea episodes. I would recommend taking it if the cost is acceptable.

How much did it cost, if you don't mind me asking? Is that something insurance would help cover (if you know)?

I have sympathy for those with POTS who are very outgoing and love being around people. After moving here from another state, I quit my job to work from home, lost my co-workers I was befriending and after breaking up with my girlfriend I became much more reclusive and isolated. One day it just hit me: I don't have a girlfriend and I have no real friends here. Weirdly, I didn't really care. I have 2 dogs, and they're a man's best friend. So, when I got hit with POTS my social life did not change very much. The friends I keep in touch with I chat with online so POTS hasn't changed anything. It is a little annoying cause right around the time I started having problems, I was getting out a lot more and finally learning how to put work on hold...

At this point I couldn't care less about making friends but I am a little lonely. I'm jealous of those with spouses on here. I wish I had a wife, preferably with a career in cardiology That, or someone with a worse case of POTS than me. That way, I can feel like I'm taking care of someone else and it'd help make me forget about my health problems.

How does that feel? Your heart being starved Of blood?

I guess the analogy I would use is like your lungs gasping for air. My heart feels like it's gasping for blood. After lying down for 20 - 30 minutes, I stand up and for about 10 - 20 long seconds I'll have these slow, throbbing contractions. After that, it feel like an adequate amount of blood flow returns to the heart and the tachycardia sets in. If I lift my legs above my head before standing, these symptoms are alleviated by about 90%. If I stand up and then kick my legs and keep my body moving, i also helps alleviate the symptoms. If I just stand up and stay in place, it's the worst.

The general consensus is that I have a decreased venous return causing that specific symptom. This could be caused by blood pooling my legs and/or abdomen or, low blood volume. Everyone has a decrease in venous return when standing up because of gravity, but if you have too low blood volume, there's not enough blood to make up for the decrease anyways.

Anyways, that's the gist of it...

What dosage of Melatonin was she taking? Most Melatonin supplements are really high - 3mg to 5mg.

"The researchers also discovered that the typical health food store dosage of melatonin, which is about three milligrams (or 10 times the dosage in the study), is less effective in treating insomnia. In addition, the higher dosage can cause potentially serious side effects, including hypothermia (low body temperature)."

The correct dosage would be 0.1 - 0.5mg with 0.3mg being the sweet spot in the clinical studies.

I myself have had trouble falling asleep for years so I can understand how frustrating it can be... I've thought about going to get a sleep study but am worried I'll just stay up all night and won't be able to fall asleep.

I went back to my GP to discuss getting more bloodwork done (waiting for my next cardiologist appt) and it turned more or less into him thinking I have a problem with adrenaline release. I basically told him I disagreed completely but that I'd humor him and take the Zoloft to see if it helps. My main symptoms revolve around feeling like my heart is being starved of blood so how that can relate to adrenaline I don't really know.

Anyways, is anyone here currently on Zoloft/Setraline? How was the first day/week of starting it? Naturally I'm concerned about having a bad reaction to it...

Thank you

My cardiologist prescribed me Florinef but I haven't filled it (said it was okay not to, until further testing). I also read all of the side-effects and am concerned about possible serious negative reactions. From the discussions I've read here at DINET, a lot of members speak highly of it and the ones that don't aren't too negative - mainly complaining about mild discomforts like headaches.

From my understanding, a good portion of POTS patients have low blood volume:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/bin/ipej060084-04.jpg

Which makes sense why Florinef would be a good possible treatment option. I told my cardiologist I didn't want to fill my prescription until I had a total blood volume test to verify I actually had low blood volume. I don't understand why Florinef would help Hyper POTS patients along with "regular" POTS patients who have a drop in BP when standing. I feel like it'd have a negative impact on me since my BP tends to spike up, sometimes really high. Though, I know another member here (Jangle) who speaks highly of Florinef has an increase in BP and Florinef has been a good treatment for him (as far as I know)...