Need help just out of hospital

[friday]

Hi. I just went through **** this past week. I've been having all these terrible symptoms, like numbness, not being able to breathe right, you name it , in the past year , I've probably had it. Anyway, last week, the breathing problems seemed to overwhelm me, and the pressure in my chest was really bad, I tried to stay clam because i read about POTS and it seemed to be what I had. I didn't really think of it as a heart attack or anything, but it just kept getting worse. I got really weak, The room was getting dim. All the energy was draining from my body. Then I felt real numb all over. I tried to get up to go to the other room but my legs didn't want to move. Then when I could move them, I knew they wouldn't hold my weight. Sure enough, I tried to walk and fell.I had trouble getting words to some out of my mouth also. This really scared the **** out of me so I calld 911 and went to the ER. They said after the first blood tests that my Electrolytes were down. They specifically said, magneseum( which is weird because I was already taking a suppliment of 950 mgs. a day) calcium, and sodium. So they set me up with IV's . In the meantime, they checked me in and did all kinds of tests on my heart. All that seemed to check out well, so they were satisfied. I kept trying to tell them about POTS and the fact that i had been checking my blood pressure and heart rate, and it all seems to point in that direction, esp. since i'm a cfs.but they were like let's take this one step at a time. We'll work on that stuff as an outpatient. The thing is, I don't know what caused the symptoms to get that bad all of a sudden. I don't know why the Electrolytes dropped so bad, and that scares me. They are not used to dealing with CFS or POTS patients so to them it was no big deal. They did give me a Beta Blocker. Because my heart rate was pretty high, and my blood presssure was low and irratic. But they fail to aknowledge that I need to be properly diagnosed and treated. I saw a neurologist, At my insistnce, but he mostly just wants to do an MRI and send me back to the regular docs. Not that I mind the MRI, I want it, But I told him about the POTS , he seemed to understand but then was also like well, you're on a beta blocker so that should make you feel better. And it would just mess up the tilt table test. He also said I have to see a cardiologist to get that test. I feel like I'm in the Twilight zone. Nobody seems to be doing what they should. I mean even the Beta blocker, the gp says well, you won't have to take that all the time. It's like I just want them to seriously consider that my problem might have to do with OI or some form of it. I want them to do the necessary tests to make an accurate diagnosis so I can discuss with them the best way to deal with it. So I can have a definate diagnosis if I go to another doc. If I go to them and say I suspect I have POTS, they'll just blow me off. Just like my Hypoglycemia. They tried to ignore me when I said I had that , at the hospital. When I informed them that one of thier own docs gave me that diagnosis , then they listened. I really don't know what to do at this point. I don't even know if a Beta blocker is the best way to go with this. I have felt a little better since I came home from the hospital, but I still feel bad. And my thought process is really shot sometimes. I'm surprised i can tell right from left some days. I don't have an appointment for 2 months to see my GP and this guy ( the neurologist) tells me I need to see a cardiologist to get the tilt table test ( it's called pass the buck..I've been here before) So now i have to wait to see my doc and try to convince him I need to see the cardiologist, then I need to wait get an appointment, and HOPE this doctor will listen to me and do things in the correct manner. In the meantime. I'm scared, I feel so alone, and nobody seems to believe anything I say, so what good does it do me researching all of this stuff!!! I'm really at my wits end. It's like they're trying to drive me bonkers, just so they can say they were right, it was all in my head.

Any advice. Is a Beta Blocker the way to go? Will it be useless to get the tilt table test now? They don't understand , I want to do this in the correct order so that I have a diagnosis, and can get the right help. Plus I really don't feel like going through anything like I did last week, and I am still unclear as to why it suddendly happened like that. So I'm carrying around, magnesuem and salt in my pocket, where ever I go. Sorry for the long post but I'm so stressed about all of this.

Sue

[ethansmom]

Hi Sue! I am sorry you are going through such a tough time. It's a familiar road for many of us, unfortunately. My personal recommendation at this point would be to skip the "buck passing" altogether and go straight to a specialist near you that can properly diagnose and treat your condition- there are some great references available of NDRF and DINET in regards to locating a physician. Here are some links that might be helpful:

http://www.dinet.org/physicians.htm

http://www.ndrf.org/physicia.htm

[MightyMouse]

You might also try not saying "POTS" because the acronym isn't that well known in the medical field. You may get a better repsonse to saying that you believe you may have some kind of autonomic dysfunction or dysautonomia.

To see a list of the standard tests done to make a differential diagnosis of autonomic problems versus many other known disorders, look here:

http://www.dinet.org/how_is_pots_detected.htm

I would strongly suggest taking charge of your medical care and getting yourself to a doctor who is familiar with this disorder. Additionally, a beta blocker MIGHT help you feel better, but for many with autonomic problems, it can make them feel worse. Most of the medications are trial and error--you'll see us say many times: one person's miracle drug is another person's poison. I second Jessica's suggestion to try to find a doctor on the lists she posted. If those don't pan out, you can also try:

http://www.co-cure.org/Good-Doc.htm

To see the long list of types of treatments, look here.

http://www.dinet.org/what_helps.htm

Nina

[friday]

Thanks for the fast replies. And thank for the links. Unfortunately for me, they are all in NY and I am controlled by my insurance. See in order to see a specialist, first they have to take horison NJ/Medicaid,(which is rare) then I have to get a referral from my GP to the specialist. Since they already sent me to the neurologist, it would be hard to get them to send me to another Neurologist. Since I had all these tests done on my heart and they checked out okay, I know they're gonna say I don't need a cardiologist. Getting these people to do anything is like pulling teeth. Being on Medcaid is terrible. They don't want to pay for anything. That's why I 've been dropped by a couple of docs recently. Unfortuantley it's all I've got.

I am still planning to see Dr. Podell, who doesn't take my insurance, but like i said few specialist do. It's just that I have no idea when I am going to get an appointment yet. And this whole buisiness this past week has just got me wanting some kind of help fast. I guess I will have to try to call his office. They must have my application by now, so I won't wait around for them to call me. I just hope it's not gonna be months until I get an appointment.

Thanks also for the links on types of treatment and detection.

Sue

[Ernie]

Until you get a real TTT you could always ask your PCP to give you a poor man's tilt.

Ernie

[MightyMouse]

Sue, I mentioned Dr. Gutkin in a previous post. He's the one who sent me to Dr. Podell...and he's a Renal & Hypertension specialist (also Hypotension)--and if you've not tried contacting his office, I strong suggest doing so.

Nina

[friday]

Nina,

Thanks. I just got an appointment with Dr. Podell, for two weeks from today so I guess i'll see what happens with him.

Thanks

Sue

[friday]

Until you get a real TTT you could always ask your PCP to give you a poor man's tilt.

Ernie

Ernie,

I'm sorry what's a PCP?

Sue

[Merrill]

I'll answer for Ernie in case she doesn't see your question--I believe she's referring to Primary Care Provider. Funny, when I read her reply, I thought you'd ask: What's a poor man's tilt?

Take care,

m

[friday]

I'll answer for Ernie in case she doesn't see your question--I believe she's referring to Primary Care Provider. Funny, when I read her reply, I thought you'd ask: What's a poor man's tilt? 

Take care,

m

OH okay thanks. I usually just say GP. I guess I figured a poor man's tilt would be what I do at home. Take me blood pressure and pulse lying down and then standing. I've given it up to 10 mins. myself. That's all i can stand, and my pulse just about always goes up about 30bpm. also when I feel the symptoms badly the blood pressure goes down. I noticed today that besides the symptoms increasing my feet also turn bright red then start to get purplish. With all this going on and the fact that my electolytes and sodium dropped the day I went to the emergency room because i couldn't walk, Why or why is it so hard to get someone to give me a TTT. My gp already decided I don't need to see him for two months!! The Neurologist is just giving me an MRI, and says to see a cardiologist to see about a TTT. So that means, I'm supposed to wait two months till i see my GP and then try and convince him to refer me to a Cardiologist, then wait for who knows how long to see him...then I have to convince him to give me a TTT!These people are unbelievable! Hopefully Podell will be more helpful. Sorry for ranting, I get so fed up with thier lack of concern!

Sue

[Jersey Girl]

You can petition your insurance even Medicaid to go outside of the state if the specialists you need don't have the level of expertise or specialized lab evaluation. You should ask for an appeal form to go to whom you want for the care you need. Tell them you'll hold them responsible if they don't give you approval and do it in writing. I had all the same symptoms a few years ago and was discharged unceremoniously from RWJUH after a week without a diagnosis. Many persons in NJ have been approved for care outside the state even with Medicaid. It seems ludicrous that I had to go to NIH to get a accurate diagnosis of POTS. BTW beta blockers always made me worse but everyone is different.

[friday]

Thanks so much for that information. I had no idea you could do anything like that. Actaully I think the Beta Blocker i'm on isn't good for me either. It seems my OI has gotten worse since last week. I can hardly stand for a few minutes without getting sick. Also my blood pressure drops signifigantly upon standing. It wasn't doing that before the BB. I read that for some people it will do that, so I guess I'm one of those. Can I ask if anything you've tried has helped?Since we seem to be similar on the Beta Blockers, maybe I can try something that has helped you.

Sue

[Jersey Girl]

The only medication that was somewhat helpful was Neurontin and I can't tell you why. It was initially prescribed for my headaches and stiff neck but I found it helped me in general. I was also on Verapamil because I was having such high blood pressure spikes. It is a calcium channel blocker so it works differently on your blood pressure than a beta blocker. I was on both medications for about 6 months but then I began to notice that I felt worse on them, but that wasn't the case initially. Many of the SSRI'S ( Zoloft, Paxil, Prozac) are also prescribed frequently and I tried most of them without success. I felt good for one day on Florinef but then my blood pressure went sky high and I was incredibly dizzy so I had to go off that. Now, I take large doses of aspirin (1000 mg three times a day), Centrum Silver 1 tablet daily, Vit. E 100 mg daily, Citracal 1 tablet twice a day, CoQ-10 50 mg three times a day, Potassium and Magnesium Asparate 250 mg (GNC brand) once a day, and Mega B-50 by Puritans Pride once a day later after lunch. I only take these supplements in addition to the aspirin with a meal. I also drink the requisite amount of fluids (64 ou) minimum a day. I like Propel sports drink sold by the case in Costco. I also avoid caffeine,-even caffeinated teas- and alcohol. I drink ginger tea to help settle my stomach. I also avoid large amounts of carbohydrates at a given time. I am becoming used to a lot of salads with a little chicken or steak not because I necessarily like them but because I feel better if I fill up with them instead of other foods. I don't drink regular soda and dislike the tast of diet. These dietary changes don't necessarily make my symptoms go away but they don't exacerbate them either. I still need a ton or sleep and rest and must pace myself with frequent lying down throughout every day. I had to force myself to walk longer distances each day when I first could barely walk. I usually had someone with me for my own peace of mind. In the past few months after two years I have been able to participate at a low level in Curves and have found that their leg strenghtening equipment is very beneficial. It has been a long haul and very difficult not only physically but emotionally for me and my family. I have tried acupuncture and neuromuscular massage therapy with limited success (generally the effects were temporary). I hope you can find an autonomic specialist with an autonomic testing lab as part of his/her office to help you. I will not have computer access the next 2 week but hope you can find a physician to help you. I am currently seeing an osteopath who seems to better understand more the inter-relatedness of our body systems.

[Jersey Girl]

I forgot to mention that I do have a presciption for Xanax which I take 3-4 times a month when my blood pressure and heart rate are more uncontrollable, like before my period. I only take 1/4 of a 0.25mg tablet. I tried taking it for 2 weeks on a more regular basis and it seemed to loose it's effectiveness at the lower dose. Starting on this medication has been controversial because of it addictiveness but I don't have an addictive personality and I was told to take it this way and not feel guilty since I am suffering with this condition.