Sad News From The Doctor

[delphicdragon]

Well, I saw the doctor today to get the results of the tilt table test I had last week. The news is not good. It's POTS. I knew that and have known that for the last 2 years. I did manage to make 10 mins at a 60 degree tilt (they tried the 80 degree, but my heart rate shot up to 150 immediately and so they put me down and gave me oxygen before they tried to tilt me again.) However, he said that that type of POTS I have (this was not elaborated on, and I'll find out when I get the official results sent to my house) no medication will help me. He said that my heart is filling with too much blood and therefore Florinef and Midodrine will make me worse. I can't take Beta-Blockers because I have severe asthma. I'm not sure if the heart thing is due to my Ehlers-Danlos or not, and if it is due to the Ehlers-Danlos, I need to see a cardiologist ASAP.

I'm just trying to sort it all out. I'm too symptomatic right now to work and running the risk of losing my health insurance.

What does one do? I've always been very independent and am now living at home, doing school through telecommunications. What happens when you can't work and the health insurance runs out? I can't afford an ER visit or weekly IV salines. Help! I'm feeling really, really overwhelmed. I want to go into work the one day a week I feel better, but how do you explain the "yes, I look normal, but I'm actually really sick?" and "no, I can't work everyday, today was just one of the few good ones."

Thanks for letting me vent.

Sara

[Ernie]

Hi,

Sorry for the bad news.

I would not give up before I try different medication. I have never heard of someone with POTS that have a heart that has too much blood. Usually it is the opposite. The heart beats too fast and does not have time to fill up.

I would find another specialist with more experience with POTS and EDS.

[yogini]

Sorry to hear you got this news from the dr. Did he conclude this from the TTT or did he run other tests? I'm really surprised to hear this b/c I've never heard of a "form of POTS" that doesn't respond to medicine. There are some here who cannot tolerate medicines, but they figure that out only after trying lots of different things - there are lots of options other than florinef, midodrine and BBs which your doc may not know about - you can find more info on Dinet page. If your doc is not a POTS specialist, I would try to get a second opinion from someone else.

[juliegee]

I think Ernie has some good advice. It certainly wouldn't hurt for you to get a second opinion, with a doctor who's very experienced in dealing with the various dysautonomias. Ask for your doc to give you your specific DX in writing so that you can begin to do your own research. Enlist the folks here at DINET. So many are so knowledgable. I wouldn't take one doc's prognosis to heart so quickly.

If the news is tryly grim....you will find a "new" normal and make a fabulous (perhaps slightly different than your original plan:-) life for yourself. Be sure to let us know what you find out.

Hugs-

Julie

[morgan617]

I'm not sure I understand either. If the heart is beating too fast, it doesn't have time to fill with too much blood, that's part of the problem. The heart will beat too fast trying to get more blood in to circulate, not because there's too much.

I would get the results and get a second opinion. I know it is a two edged sword, getting a diagnosis, especially if you've been looking a long time for one, but then finding out it's chronic.

I have taken care of a fair amount of people on betas with lung problems, so it shouldn't be completely ruled out. I know nothing about EDS, however.

I went from working a 14 hour day, to disability the next, literally. It's a long story, but if you can't work, you need to file for SSDI as soon as possible. Most of us have been where you are right now, and it's pretty scary for sure, but there things you can do. You need to decide if you can work and if you just can't, that's just the way it is.

As a person who has lost just about every single thing in her life, I can tell you, you do get through these things. Right now you are understandably in shock and need to get through that.

The first thing I would do is get a second opinion and then get ready for the wild, frustrating ride that is pots. morgan

[delphicdragon]

Thanks everyone!

Few things. I have decided to definitely get a second opinion, probably with a cardiologist who hopefully knows something about autonomic problems and EDS. Because of the severity of my asthma (I stop breathing when triggered) no doctor wants to try a beta even in a minute dose. The diagnosis was made based on a TTT. I'd really like to see my numbers to see what happened during the test.

Thanks again.

Sara

[flop]

Hi Sara,

was it a cardiologist who did your tilt test? I've read a lot about POTS including Dr Grubb's two books and have never heard of a type of POTS where the heart has too much blood. Some people's blood pressure does go up when tilted but I don't think that is the same as having too much blood in the heart.

There are drugs other than beta-blockers that can help to slow your heart rate that may be ok to take with Asthma.

Don't give up hope - I doubt that you can be written off as a hopeless case on only a TTT result. I'd agree with the suggeston to get your full report then look for a second opinion before deciding not to try any meds. Is your doctor aware that you take liquorice? Liquorice has the same effect as florinef of making you retain water and salt so it increases your blood pressure - it will be important to any doctor trying to interpret your TTT that they know you take it.

I hope you get some better answers soon, oh and please do let us know exactly what the report says - I'm really curious now!

Flop

[pat57]

I have found explaining things makes it worse. State the case, "Thankfully I'm having a good day".

It seems- if you expect them to understand and accept what you say- they are more likely to do so.

What excuse does a person have not to understand ,"Thankfully I'm having a good day". If they don't believe you

don't "validate" them by explaining. Just MO.

There may be someone genuinely concerned, but I have found that they don't get it either. Those folks I send links too. If they want answers-

its there.

[masumeh]

I totally sympathize with your dilemma in work. It's hard to be independent and have POTS or any other chronic illness. Personally, I've had to learn to lean on others more, and sometimes feel guilty about "burdening" people around me, though I know they don't see it that way. And at work, I have found that the only way I can be reliable on a team is to go part-time and work from home. The ideal thing is short-term projects as a freelancer or contractor/consultant. But I know that doesn't work for every field. Good periods, I can work from home consistently. Bad periods, I have to drop projects and feel lousy about it. But hey, life goes on. We gotta just do what we can when we can, right?

[masumeh]

A second thought.... IVs.

Many of us sometimes visit the ER just to get IV fluids (there's not much else they can do, is there?). From living in the US, I know this is the most direct way to access the health care service immediately. However, in Saudia, when I need an IV, I don't leave my house for it, and I don't pay a bundle for services I don't need (like brainless ER docs). My husband goes tothe local clinic and brings a nurse home to me. She puts the IV in, and sets the pace for the fluid drip. An hour or two later, I pull the line out myself (it's not hard).

I think this kind of nursing service IS available in the US, if you pre-arrange a relationship with a nurse. There are nursing agencies for home care. If you know you'll need IV fluids, it's better to just get it at home with a nursing service.

Just an idea.

[Adria]

I completely and totally empathize with you concerns and worry. I have been unemployed for the past two years due to a severe flare up POTS that had been ongoing for about 4 years. I managed to complete my law degree and graduate but then ended up having to be hospitalized for a while. I decided to focus on getting my health in check post graduation so that I could finally be able to sit for the bar exam. I am also 27 years old and feeling the pressure of student loans and no income. I even applied to Social Security to seek Supplemental Security Income (SSI) since I do not really have much of a work history and hence have not paid into the system I just wanted to let you know that after a 4 year long and hard battle my POTS is finally stabilized. Now I am going to tell you what I am on so that others can benefit.

POTS Meds

Coreg 40mg Continued Release

Mestinon 360mg/day (6 separate doses but will switch to the continued release version soon)

Rainbow Light Just1Once Naturals Multivitamin for Women (DRAMATIC improvement in energy. I am completely and totally off of adderall and provigil at this time. Just 2 weeks ago I had to set 3 alarms to wake up and would never hear any of them. I literally had to have someone come and shake me awake. Now I naturally wake up at 7am all by myself. I have never ever in my life been a morning person until now. In addition my hair and nails are growing like crazy and my skin has never felt so amazing.

Acetyl L-Carnitine, Alpha Lipoic Acid, and Coenzyme Q10: all three combined into one capsule for a great price at www.vitacost.com In fact vitacost is a great website to use for any all supplements that you take. It will save you tons of money

Magnesium HCL 500mg: this has dramatically reduced the frequency of my migraine headaches. I am in the process of tapering off of my cymbalta. Yet another med to get rid of.

NSI Ultra Calcium: It's a pretty large soft gel but it causes absolutely no stomach irritation whatsoever. I've been taking it for moderate Osteopenia and at my last bone density test I found out that I am borderline Osteopenia/Normal. This is a massive change.

Donnatal: this medication has completely stopped all of the esophageal and stomach spasms I have been suffering from which has greatly reduced my nausea

Plaquenil: it's a form of immunosuppressant that has helped me immensely in my battle with Behcet's Disease

Flora Q: an OTC probiotic. Since starting it I no longer have lower abdominal pain and for the first time ever I am neither constipated nor having diarrhea (sorry that was a little graphic) I also managed to find another probiotic on vitacost that has all of the ingredients of Flora Q and at the same strengths but costs a great deal less. I cannot recall the name but I will post it later.

I have also switched my inhaler from combivent to Atrovent and this has also helped to lower my heart rate.

To make a long story short I am feeling absolutely amazing and taken very little prescription medication at this time. I even had to be hospitalized for a combination of the flu-strain B and Bronchitis and even then I still had the energy and stamina to do my PT exercises and some light pilates. My lungs are not quite strong enough to do cardio yet.

Anyway, I have another doctor's appointment to get to.

Always remember that there is always hope no matter what and feel free to send me a message or e-mail and we can chat on the phone if you you're up for it.

Best Wishes for Health and Happiness,

Adria

[persephone]

Sara! Really important news for you - a non beta blocker drug called IVABRADINE can be used to slow heart rate. IT's the world's first betablocker that doesn't lower bp. I think it can also be used safely in asthmatics. Google IVABRADINE and see what you can find. I took it and it helped.

[flop]

Ivabradine was one of the heart rate lowering drugs that I was thinking about in my earlier post. As Persephone said it is not a beta-blocker so has no effect on allergies or asthma (as far as I know). It works by inhibiting the I_f pathway in the sinus node to slow down the rate that the sinus node tells the heart to beat at.

The only places in the body that have I_f channels are the sinus node and the eyes. This does mean that the most common side effect is strange eye things like halos or flashing lights but most people find that they can tolerate them.

I have been reading up about Ivabradine as it is one of the Meds that Prof Mathias recommended for me - I am waiting for the letter to get to my local cardiologist so I can go see him about this med.

Flop

[persephone]

I was the first UK POTS patient to try it. Within 12hours my pulse went from 180 to 65. But the migraines and phosphenes it caused were unbearable in the end and I had to come off. THat was in 2006. But now I'm being prescribed it again.

[delphicdragon]

Thanks to everyone for the support. I finally got a look at my tilt table results and I have POTS but I also have some other issues with my heart. During the regulated breathing tests on the tilt one is supposed to have heart rate variability. I don't. My PCP, who's a sweetheart, has recommended I go to Mayo or Cleveland Clinic or somewhere as the data just doesn't make sense to him or anyone else. So I guess I get to go traveling. Wish me luck.

Sara

[flop]

Hi Sara, travelling to see an expert sounds like a good idea - hopefully an autonomic specialist will be able to piece together your symptoms and results to find some meds that may help you.

Flop

[Megan]

Good luck! I hope you find answers!