Question For Those Of You With Chronic Daily Symptoms

[Jen2533]

Happy Halloween everyone,

I have some questions that have come to mind while I have been dealing with all these nasty symptoms. Just wondering how many of you are similar to me. I'll list the questions and then give my answers but I am very curious to see how you all feel about these subjects.

1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I used to keep in close contact but have found that the answer is always the same...on to question 1...

2. How many times do your doctor's say go to the ER? Everytime

3. How many of you have given up on the ER? I have due to the cost, the lack of interest if it isn't a heart attack or appendicitis, and the massive waste of time and energy.

4. What do you recommend? I don't have any recommendations, just confused. If I felt before like I feel now all day everyday I would have immediately gone to the ER, now I'm desensitized knowing that they won't figure anything new out and just discharge me with a ginormous bill.

Thanks to all who participate,

Jen

[potsgirl]

Hi Jen,

Happy Halloween to you, too! Here are my answers to your questions:

1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I used to keep in close contact but have found that the answer is always the same --yes, me, too. The only time I call anymore is when I'm feeling absolutely horrible, but there never seems to be an answer.

2. How many times do your doctor's say go to the ER? Most of the time.

3. How many of you have given up on the ER? Unless I'm totally overwhelmed by my pain, I usually 'sit it out' and wait to see how I feel in the morning. Then my cardio yells at me, but the ER wouldn't do anything, anyway.

4. What do you recommend? I don't have any recommendations, just confused. If I felt before like I feel now all day everyday I would have immediately gone to the ER, now I'm desensitized knowing that they won't figure anything new out and just discharge me with a ginormous bill. -- Again, I feel the same way. I HATE the ER and they almost always make me stay overnight after I've waited about 10 hours in a room in the ER. It takes a LOT to get me to go to the ER again, even if I do have heart problems - cardiomyopathy and diastolic dysfunction.

Welcome to the forum, Jen!

Cheers,

Jana

[erikainorlando]

Just quickly...I never go to the ER. I never call my doctors either. Before I was diagnosed I went to the ER frequently and was always admitted...but they could never really help. I usually "sit it out". I don't usually get scared by my symptoms....and I know what helps like laying down and drinking alot. Pain meds help too when it is real bad...beta blockers help me...

Good luck. I just hate the hospital.

Erika

[lifesaver]

After having to write an appeal letter to the insurance company---went because of chest pain and had an angiogram a few weeks later---but HAD to prove somehow, I needed to be there--well...

No, I do not call the doctor, but probably should for certain things. After the above experience I don't even call the insurance help line or the on-call doctor. They will most likely tell me to go to the ER but I know there is nothing the ER could help with.

This may kill me one day but at least my family won't be as broke as we are now.

Anytime I have called the doc or insurance nurse line they say--go to the hospital (part of this is covering their tails from being sued). When I go to the ER, I feel like an idiot because there is nothing much they can do that I don't do at home. (All of this was before my Dys dx.) Needless to say I don't jump up and go to the ER. At $125 a pop we can't afford it.

What do I do? I just tough it out. And take pain meds only if in dire pain--very hard to get a script for Vicoprofen--they worry about drug seeking.

I told my GP about my severe headaches and she said to call the on-call docs, that is what they are there for. I haven't called yet.

Sad that we have to accept pain and severe symptoms as something to just suck up and deal with.

lifesaver

[fighting4health]

I used to go when it got bad before being diagnosed. Now I know that sharp chest pains and other things are normal (for me). I've also acquired some of the drugs they give in the ER. I use phernegan suppositories to stop vomiting (ER would give it in an IV) and that lets me keep fluids down so I don't dehydrate. The dehydration would get really bad to where I would hallucinate and just lay on the floor close to unconsciousness. Now I've got everything I need at home and don't have to wait to treat myself. It's helped with previous ER visits to ask what meds they are administering and asking the docs what they recommend doing when at home. They have given some great treatment info to me.

[ramakentesh]

In Australia the ER is a good place to go if you want to wait 5 hours to then be shrugged at and told to go home and drink more water... LOL

I never go. I just ride out the bad times.

[ana_22]

yes..in australia also. have been there done the waiting....i think 9 hours was my record...my sister was with me...it was when i first got sick and she had no idea how sick i was.....she was going to kill me, oh well at least she could read....i could barely sit up even with my legs elevated on the chair in front of me!!!

if you go by ambulance there in no wait. but i wont do that unless i was home alon or unless it was dire.

the once that i did....collapsed, could not move without shaking, tachy not relaieved after hours of laing down. they took me in and in the end phych evaluated me....where the psych found that I WAS NOT anxious/depressed/somatising.....& they still didnt do anything about it except give me fluids and send me out in a wheel chair to the car.

so know i havent been even when i feel awful...i just try to ride i out. next time i feel really awful i think im going to call my specialists for advice....hopefully this will happen during business hours!

i never realised how useless ER's and hospitals are until i got sick....not the best time to have this realisation. And there is no DIAGNOSTIC DEPARTMENT as there is in HOUSE where they diagnose you! If they dont know, well you must not really be sick or you can go home. We all need Dr House and his team to get to the bottom of this! In my case there waas a 'general medicine' ward.....but the dr said i would want to admit you in there 'its full of old people'....yes those were his exact words. i was astonished.....

sorry for venting on your post but im having an awful day with nausea and tummy (after regaining my appetite in the first time in well months and a year!) i just hope im not slipping cos if i am i really have no where else to go to seek treatment wise.

[chipper]

Never go! Just wait it out. Less stress to be at home.

[Jen2533]

I'm happy to see so many people participating, and glad I'm not alone in my distrust. I found out that the weekend I was in the hospital in June was the worst week of the year to go to the hospital. It was the starting week for students working their first time in the hospital. The statistics show the first few weeks in June result in the highest deaths of ER admits...yikes! Keep the responses coming, good way to vent and know we aren't crazy:)

[lmt033167]

1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I used to keep in close contact but have found that the answer is always the same...on to question 1...

The only time I've gone to the doctor for acute pain was after I got a 2nd EP opinion. The dr gave me a BB that crashed my BP/HR so low even with shots of something to raise them; my bp stayed 70/40 and HR of 40 for 11 hours; so I told them I wanted out of jail and went home

Before I had an ablation in Aug; I was having CP/SOB, fainting and 54,000 pvc's daily. I never went to the dr; just toughed it out, but now I wish I had gone. I have malignant heart rhythms & VT that go into V-fib and I had to have a pacemaker/icd implanted, non ischemic cardiomyopathy; NCS and some other things going on.

Sometimes, ignoring symptoms can be dangerous, so I'm having to learn what to react to and what to just deal with.

2. How many times do your doctor's say go to the ER? Everytime

The one time I called them, they told me to go to the ER

3. How many of you have given up on the ER? I have due to the cost, the lack of interest if it isn't a heart attack or appendicitis, and the massive waste of time and energy.

Even with all my problems, I am hesitant to even think about going to the dr or ER

4. What do you recommend? I don't have any recommendations, just confused. If I felt before like I feel now all day everyday I would have immediately gone to the ER, now I'm desensitized knowing that they won't figure anything new out and just discharge me with a ginormous bill.

As I get worse, I have to learn to cope with different symptoms and find what works to help each situation

glad I'm not alone in my distrust

I am not only distrustful of ER's and their ability to help; but doctors in general. I've had my fill of doctor's who tell me things like lose weight and all your problems will go away instead of finding a real diagnosis. Another doctor who saw malignant heart rhythms and ignored them, and prescribed amphetimines instead of treating me; another doctor who totally ignored everything in my chart pointing to major health problems.

[potsgirl]

Lisa,

What kind of cardiomyopathy do you have and when were you diagnosed? I was diagnosed with dilated cardio and just recently diastolic dysfunction. I'm sorry if I missed it, but what form(s) of dysautonomia do you suffer from?

Cheers,

Jana

[Rachel]

1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I have never needed to call the doctor with changes in my gastroparesis. I just change my diet as needed (ie, go on a liquid diet for a few days). I keep my doctor updated at appointments. If it get to a point where I am not able to get enough fluids or nutrition, then I would call my doctor between appointments.

2. How many times do your doctor's say go to the ER? My doctors have never told me to go to the ER. I manage my symptoms at home. Rest, fluids, elevating legs, etc. My doctor has told me to go to the ER if my heart rate gets into the 30s, but it hasn't gotten quite that low. The ER is just for emergencies. I've never had a life-threatening emergency with my dysautonomia (most of us don't). Years ago, when I was first diagnosed, my doctor told me, "This is life inhibiting, but it isn't life threatening. You may feel like you're going to die, but you won't." I always have symptoms; I never feel good. Some days I feel really awful, can't stand, can't get out of bed on my own, can't think clearly or answer yes/no questions. It is miserable. Rest, fluids, sleep, and meds help.

3. How many of you have given up on the ER? I've never been at all.

4. What do you recommend? If you can manage your symptoms at home on your own, that would probably be just as helpful, if not more so, than going to the ER. Fluids, salt, and meds can help. Sometimes you just need extra rest and sleep, and in time your symptom flare will settle down.

Hope this helps.

Rachel

[lmt033167]

Jana; I have NCS with cardioinhibitory and vasodepressor responses and a disorder of the ANS associated with OI.

I was diagnosed in August 2009 after my cardiologist did alot of testing and sent me to an EP; he did a HuTT; cardiac MRI; Cardiac Cath, EPS & Ablation and then PM/ICD implant. During my HuTT, I passed out and my bp/hr went from 137/71 HR 109 to 0 and HR of 20 with no palpable pulse and during my EPS he triggered Long runs of polymorphic sustained VT in the outer wall of the RVOT; which made go into v-fib and have to be resuscitated 3 times.

What's funny is when I started researching, I found this article by Dr. Grubb - Clinical Disorders of the Autonomic NervousSystem Associated With Orthostatic Intolerance so I recognized the named. Is this the same Dr. Grubb alot of people here are going to? I would love make an appt with him to get to the bottom of my problem and really understand the cardiac - neurologic connection I have.

I developed non schemic Cardiomyopathy due to the amount of pvc's and problems I was having. I had a cardiac mri that was inconclusive. My cardiologist said all the symptoms are there for ARVD and HCM; and the MRI didn't rule it out - her words were "if it looks like a duck and quacks like a duck, then it probably is" I had to laugh at that and want to walk around quacking lol. She's letting my EP do the "formal" diagnosis in Dec after another interrogation and echo.

I don't know the connection, but I have Left Ventricular Hypertrophy (LVH); so maybe I have a double whammy...ARVD and HCM...which is another question I haven't gotten answered, but will in Dec.

Since I do have CM, I'm really wondering how salt loading is going to affect me; and how much it's going to make the CM worsened. I've read is once you develop symptoms such as shortness of breath or fatigue, you should restrict your intake of salt (sodium) to 2,000 to 3,000 mg per day. I've had SOB, Fatigue, CP, swelling in my legs sometimes so bad I can't even wear flipflops or walk; this has been over 5 years. Due to NCS and OI I have to take in at least 6,000 mg per day and it frightens me to think what it's doing to my heart and arteries.

I'm still in the process of searching for answers; like since surgery I've had this really horrible time with muscle twitches, twinges, pains, pins & needles type of feeling and cannot tolerate some types of pressure like fingertips, I wake up sometimes at night with my body twitching or tremoring all over and it freaks me out - I showed my husband when it happened during the day and he said wow lol; nausea, headaches, left shoulder pain; neck pain .....[list goes on]

[ladyt]

hi..

i stay away from er... And for a long time docs.. Trying to gett help from docs again.. still the same mostly.. relax and ignore, i know that drill.. and when not around health people i am very relaxed..

[taylortotmom]

Another thing about the ER- way too many germs. Avoid the hospital unless you are critically dehydrated and need iv fluids or something else that cannot be handled at home. The others made some great suggestions which I do myself as well; find out what you need and get the resources in line (prescriptions, etc.) to take care of it at home- you will be far more comfortable.

Carmen

[StacyRN]

I have never gone to the ER for my symptoms. I work in the medical field, and I know exactly what they would do: nothing. I also know what they would be saying behind my back. Waste of time. Sorry to be so negative, but it's true too much of the time...