More on my situation

[calypso]

Fellow POTSees,

Just wanted to update on my latest round of doctor appts. and such.

I had seen an endocrinologist in late Dec. to rule out any treatable hormone problems. He came up with nothing, but did send a rather thorough letter to me and my family doc, saying the only abnormalities he saw in me were that I was thin, my muscles appeared to be wasting and I was a little hyperreflexive. The last one I am guessing may be a result of having had preeclampsia, because this is a common feature of that disease and I would bet it can stay with you for some time.

So just to be safe, he ordered a blood test for metanephrines, which I posted about last week. The lab where it was done said my level "could not be quantified" for whatever reason ... they cited an interfering substance, though I have not taken anything but my beta blocker for months. And that's not supposed to interfere.

So now I'm in day 2 of collecting 24-hour urines (two separate ones) for catecholamines and whatever else. If those come back normal, I am back to square 1. I also am supposed to have yet ANOTHER appt. with the head of rheumatology at the university hospital where I live. He specializes in autoimmune disease research. I have these antibodies in my blood called anticardiolipin that are apparently not supposed to be there, but are present in about 2% of normal people ... so he may try to determine whether I am in that 2% and the finding is a coincidence, or whether the antibodies may be related to my troubles.

However, here's my problem: I already have seen a different rheumatologist twice during the summer. He said I had no typical signs (rash, fevers, etc.) of autoimmune disease, a negative ANA and low sed rate, and that I should just expect all of my health problems to "level off." Now my psychiatrist wants me to see this new rheumatologist, even though autoimmune disease has been ruled out. If I go, my family doc may be angry because it's supposedly a waste of money. If I don't go, what if this one guy actually can figure even one thing out from my case, and I miss the chance?

Meanwhile, I am battling the worst fatigue and weakness of my life, trying to chase my 1-year-old and still can't breathe. Yikes. And twice now in the last two weeks I have had what are either panic attacks or hyperadrenergic attacks of tachycardia and major flushing.

I don't know what my next move is. Sorry this post is like a novella.

Amy

[MomtoGiuliana]

Amy

I'm so sorry to see that the weakness and fatigue is still not letting up. First I hope you are keeping up with fluids and salt. I say this b/c I still have times of feeling weak and yucky and then if I radically increase salt and fluids (like dilute fruit juices), I feel much better.

I am also slightly hyperreflexive, for what that is worth. No one ever explained to me what that means, but I assume it must be related to being in, to some degree, a hyperadrenergic state.

My vote is that you see the rheumatologist, and don't worry about your general practitioner being angry. For one thing, you can tell him that your psychiatrist strongly recommended it. This gp must understand that you are under a great deal of duress and discomfort, that you feel unwell, and that you need answers. It sounds like this psychiatrist understand that! If he can't grasp that, then perhaps you need to try to go to another gp. I had a horrible gp who insisted I only has psychiatric problems, for months. He was so mean to me about it--so I understand where you are coming from. You don't want to alienate him further b/c you need his help. But if he is this unhelpful, you probably are better off trying someone new, if that is possible.

Are you seeing a POTS specialist? Do you feel that this person is giving you the best care possible? It may be that you will need to try some different treatments for POTS, as that seems to be a great part of your problem--based on your symptoms and test results to date.

Let us know how the test goes.

Katherine

[Guest tearose]

Oh Amy, Running after a little one can be exhausting for "regular" moms so for us(unique) it is an even bigger task!

It sounds like the psychiatrist is trying to help by being reassured that nothing is misdiagnosed or overlooked. I suggest you consider a few things: If you need to get another opinion, than go for it. If you may want to get another opinion in the future, just say to the psychiatrist you'ld like to wait a few weeks or months before you revisit it. Also, I think when I'm feeling concerned about the perceptions of my pcp, I pick up the phone and tell him exactly what is going on. Can you just tell him the psychiatrist made this suggestion and you'ld like his support? If it is going to help ypu resolve a nagging issue than why shouldn't he support you? Figure out what you need to do to feel confident that you have a good diagnosis and treatment plan and advocate for yourself!

take care, tearose

[DawnA]

Amy, I am sorry you are going through this. Do you have muscle weakness along with the wasting. Have you considered seeing a neurologist who specializes in neuromuscular disorders? Do not worry about your Dr being angry. He is not the one living with this. You deserve answers!!! Do what you feel is best.

Best Wishes,

Dawn Anich

[opus88]

Amy,

Generally speaking, when a doctor gets angry over "going behind their back" for another opinion, it's because they feel threatened. That means s/he has some control issues and may not be the best doctor for you. People like us can't work with a doctor who isn't open-minded, since our conditions require them to admit they don't know everything, they don't have all the answers easily available, and they may need to learn something new themselves. (Actually, nobody should work with such a doctor.)

You do what you feel most comfortable doing, not what somebody else (who only sees you a few minutes every so often) thinks is best for you.

Just a note on the 24-hr. urine collection: This test may not actually answer your question of catecholamine levels, etc. By collecting in one container the whole 24 hrs. of output, they are only getting an average rate, so most often those tests come up normal. To be accurate, they should be collected every 2 hours in separate containers, then compared against each other. You could have a huge rise at one point during the day and then a very low reading at another - this can't be detected with the 24-hr. collection.

Good luck, and please keep us posted on your experience and results.

[yogini]

Amy,

I understand how you feel about worrying about what the doctor might say. I didn't even tell one of my doctors that I went to Mayo because I was worried that they wouldn't be supportive. But I am glad that I went and it was something I just needed to do for myself.

And I think the most important thing here is taking care of yourself, regardless of what the GP might think. It sounds like it's worth seeing the rheumatologist, because there is at least a small chance he/she could find something. If nothing else, maybe you should go to keep up the good relationship with your psych, because your psych believes you and wants to get to the bottom of things. And if the rheumatologist doesn't find something, hopefully your psych will continue to work with you until you get a diagnosis.

By the way do you need a referral from your GP for this? Would your psych be willing to talk directly to the GP to explain why you need to see the rheumatologist?

Hang in there,

Rita

[geneva]

Sorry you are still having the heavy fatigue. That has to be overwhelming while keeping up with a little one.

As to the 2nd doctor, it sounds like you don't want to leave any stone unturned so go! If you have a pretty good relationship with your pcp and want to keep him as your primary, I would suggest calling in advance or asking the psychiatrist to phone him to discuss why SHE thinks it is important you do go. Or, see the new doctor but do not request the results be sent to your primary -- until and if you decide you want them given to him.

good luck and feel better soon

[calypso]

Thanks for all of your replies! I think I'll go to the appt. Why stop at doctor No. 7?

As for salt intake, I can't really increase any more, as I retain too much fluid and seem to be headed toward high BP in my future.

Dawn, I have seen a neuro who went over me with a fine-tooth comb. He is a neuromuscular specialist. He had no idea what to do with me except said I was in a hyperadrenergic state and that I probably had POTS but that the wasting & weakness was pretty extreme. I do have weakness, but it seems to be do to the loss of mass.

Amy

[DawnA]

Go for it Amy! I am at Dr #10. I will be adding more to that list with the neurologist at MAYO. I also may be seeing a rhematologist at Mayo. It depends on how the tests turn out that Dr WHiteman ordered. I have had an increased ANA.

Don't give up. May we all learn from one another.

Dawn

[Ernie]

I would go to the doctor because there is always hope that he will find a solution.

Ernie

[opus88]

I don't mean this to discourage anyone from doing what they feel comfortable doing. But after doctor #22, I gave up on the medical world. And OH MY, was it the right thing to do.

The full life I now have could not have happened if I had stuck with the "throw a pill at it" or "it's all in your head" mentalities that so many doctors love to hold onto. (I did, out of desperation, attempt to work with doctors again about 4 years ago, only to have my singing ability ripped away from me and to experience a further exacerbation of my disabling symptoms, thanks to their prescriptions.)

I'm not symptom free, and I probably never will be. But by using nutrition as my medicine, I've become a real person again.

Just something to consider . . .

[Ernie]

Hi Opus,

I am curious about what nutrional modification you made to get your health back? I have asked many specialist what I should do about eating habits and the only advice was to avoid caffeine. Do you have others "tricks"?

Thanks

Ernie

[RunnerGirl]

Opus,

I'd also be interested to hear the specifics of what you did nutritionally to help your symptoms. I have a relatively normal existance compared to most here - for which I am quite grateful - but have been battling a recent flare-up in anxiety and mild tachy. (I've never been "officially diagnosed," but I've been told by an EP that I have either a mild form of POTS, IST, or some other hyperadrenergic disturbance of the ANS.)

Anyway, I restarted a very low dose of Lexapro a few weeks ago, which immediately reduced my tachy and seemed to help somewhat with the anxiety, but gave me the worst run of ectopic beats I've had in over a year. I've come to the conclusion that Lexapro irritates my heart (cause a major increase in irregular beats) after experimenting with being on and off it over the last two years. It's frustrating because I believe this problem probably extends to all SSRIs. I really would like to take something to help with my anxiety and rumination about my health. The Lexapro did help with this, but I cannot tolerate non-stop PACs and PVCs day in and day out. They are at their worst about 4-5 hours after I take my dose of Lexapro and immediately abated when I dropped the dose in half (from 5 mg to 2.5mg).

Anyway, this was a very long-winded way of saying I would LOVE to try something other than a script! Please enlighten me on your experience!

Thanks!

RG

[calypso]

Runner Girl,

I also had the same experience with Lexapro -- good at first, lowered heart rate overall, but my instances of PVCs/PACs increased and made me even more panicky. So I went off it. I had irregular beats like crazy for the week after I stopped, then everything was fine.

I have a bottle of clonazepam that I use very rarely but keep in my med. cabinet just in case I have a full-blown panic attack. Even though I had a couple of these in the last month, I didn't take it, but it's there if I need it. Maybe this would be a good idea for you. Of course, these drugs are addictive when used regularly and have side effects. So it's something to discuss with your doc. There's also Buspar, which is not an SSRI, but not a benzo exactly either. I never have tried it but know it exists and is used for anxiety.

I also would like a non-Rx remedy for anxiety. Dr. Weil suggests valerian root and passion flower daily. I also experiment with aromatherapy, since I am a massage therapist and have a large collection of essential oils. I especially find ylang-ylang, cedarwood, bergamot, rose & lavender very calming. Dietwise, I try not to eat a lot of sugar (but cave in a lot too, and that's usually when I get tachy spells), limit refined and processed foods, and eat at least 5-7 fruits/veggies a day.

Opus, as for giving up on the western med. world, I am close. I guess I am not hoping for a prescription treatment, but rather an idea of at least which body system my problems are originating in, since I have symptoms in my lungs, heart, muscles, brain, digestive system, kidneys, etc. I have body part or system that is unaffected by POTS. So I realize that dysautonomia can affect practically everything, but no one else here seems to have such widespread dysfunction. I would love to know if I have an autoimmune problem, a cardiovascular problem, a neurological problem or a cellular problem, just so I can better tailor my efforts at recovery. I think this would be helpful, but I realize I may never know. Thanks for your opinion.

Amy

[RunnerGirl]

Amy,

Thanks for sharing your Lexapro experience with me. It helps validate my instincts that the drug was causing the irregular beats. My psych wants me to try Zoloft, but I'm honestly afraid I will have the same experience, as I'm convinced whatever the SSRI-class of drugs does to my brain has a major impact on my heart - some good (reduced tachy), some bad (ectopic beats galore!). I will ask him about Buspar at my next appointment. I remember we talked about it a while back, but at that point I was doing OK med-free.

I do have a stash of Xanax for when things get really bad, but I use it very sparingly and I'd like to have something that helps me daily and not just when I'm really stressed and panicky. I was on a low dose of xanax daily for about a year when I first got sick and they thought I may have a pheochromocytoma or carcinoid tumor. I had absolutely no trouble weaning off, so I don't have any hang-ups about using benzos when necessary.

Thanks, too, for the suggested natural alternatives. I will consider those. I would just like to find something that helps me weather the bad days a bit better than I do now. I am fortunate in that my 'normal' days greatly outnumber my bad - but when I hit a rough patch I tend to spiral. (What's REALLY wrong with me? The doctors must be missing something! Will this 'thing' ever go away for good? Etc.) I'm sure my psychological state (worry) exacerbates my physical symptoms.

Anyway, once again I've managed a long-winded post! I wish you good luck in your own continued quest for answers. Keep us posted, OK?

Wishing you good health,

RG

[Gena]

I second Opus's remarks about nutrition. I don't want to steal her thunder, but just wanted you to know that in previous posts she says the metabolic typing diet really made a difference in her life. I'm sure she can offer you great insight into this. I still have not tried that specific kind of nutrition plan, however, I truly feel that eating the right food that is right for your own body can make a huge difference. You can buy the book called The Metabolic Typing Diet at Amazon or most any book store. I am sure Opus can provide you with a link to a good site as well, I can't find the one she sent to me. Here is one I found on the net, but I don't believe it's the link she posted a few months ago. http://www.metabolictypingdiet.com/index2.html

But I will say this....the basics of any good nutrition plan are cutting out refined sugars, hydrogenated oils, processed foods, reducing or eliminating caffeine, and reducing the amount of simple carbs and including complex carbs, plus a good multi-vitamin and omega 3 oils (from flax seed or fish) and added calcium for women. Also eating foods that don't cause big spikes in blood sugar / insulin production, as this has been shown to shorten our life span. And we can't forget fresh air, lots of pure water and exercise (within your limits). And if you can afford it, eat organic whenever possible! That's my 2 cents!

[MomtoGiuliana]

RG and calypso

It is amazing how different autonomic systems respond so differently to medications. I have never heard that SSRIs increase irregular heart rhythms. I don't believe this has held true for me, but not 100% sure. I have episodes where I notice many ectopic beats, but this has been both pre- and during- SSRI use. Overall, I believe I have fewer of these episodes on the SSRI than off and I definitely feel better on the low dose SSRI than off it, for now. I do hope that one day in the coming years I can wean off it, although my doctor maintains there is no significant ill effect likely associated with long-term use of one.

RG--I know what you mean. Whenever my symptoms start to get any worse than a nuisance I start to panic--and worry what is REALLY wrong with me! So far for me, after my one long, bad spell, I am generally very stable and if I go off kilter, quickly return to stability.

Amy--I agree that a nutrient-rich, fresh and sugar-free diet is very helpful in maintaining a sense of well-being. I hope you find your answers SOON.

[opus88]

Hey, All!

My time and "energy points" are both running low right now. I will start a new topic within the next day or so on what I've done non-medically to improve my condition, particularly the most important and recent thing that I believe every single one of us would receive incredible benefit from. (No, I'm not selling anything - but as much as I talk about this, I oughtta get a commission!)

Keep an eye on the new posts - I'll do my best to fill you in very soon.

Amy,

I know exactly what you mean about wanting to find the source. I have no problem with running every test in the world in order to figure things out. I've done some testing and then used that info for my own research, ignoring the doctors' recommendations and not going back after receiving the results. It really does help to have as much info as possible. Just remember that science does not know how or what to test or how to interpret the results - but it is many times better than nothing. There is also the psychological benefit of feeling like you are doing something and that you have some kind of control over your situation! Go for it!

[opus88]

Gena,

You go, girl! You absolutely cannot "steal my thunder" since I have no thunder to steal! :-) And your 2 cents is worth a million dollars!

Any time anybody can help reinforce the FACT (that's right, gang - it's not just another theory) that our nutrition holds the key to improvement, I'm all for it. So many times I feel like the Lone Ranger on this subject, because the medical world has done such an awesome job of brainwashing our society into believing they know everything about the human body and that they have all the answers in a little pill. But you can't argue with the success of PROPER nutrition - those who have made the effort are always glad they did it!

I had not seen that link - thanks for posting it. My only hesitation on that is the test in the book is less than half of what is necessary to really benefit from the program. But reading/studying the book and then, especially for people with multi-faceted symptoms like us, enrolling in the highest level of testing and expert counseling can literally turn our lives around.

I promise I will post more details soon.

[goldicedance]

Dear Calypso,

So sorry to hear about your problems and how your family doctor seems to be interfering in your seeking another opinion. I am a firm believer in being proactive in your care. You have a right to pursue all options. If your doc is standing in the way, then maybe it is time to move on.

Good luck!

Goldie