Aaargh! So Frustrated...

[Angelika_23]

Hello All,

I am really having a problem keeping my emotions under control today. Just to give you the background, I was put on Effexor last week or so, a small taper dose, and started having chest pains. I stopped taking it, (I had only been taking it for 4 days) and the chest pains went away. I had other symptoms for a couple days after I went off it, but those are gone now too.

I called the Neuro, told her what had happened, that I had gone to the ER, and that I was off the Effexor. She *seemed* to listen.

I got a voicemail from her today, telling me that they want to do a neuro-psych eval and that (get this) I am to "increase my Effexor from the taper (half) dose to TWO 75 mg tabs each morning." I am so mad! Didn't they even listen? Do they WANT me to have chest pains? If that tiny taper dose sends me to the ER, I can only imagine what 4 times that dose would do...

Why do I have to have a neuro-psych eval? I feel like she thinks I am nuts...

Well, at least they are still referring me to the Mayo Clinic. I am still waiting to see if my insurance approves it and when it will be.

Sorry for the rant

Angela

[Mrs. Burschman]

Angela,

I understand your frustration. I tried to take Effexor, but it actually triggered daily migraines. Which is odd, because sometimes they put people on Effexor to prevent migraines!

I don't know what to say about the neuro-psych evaluation, but you're NOT nuts. So it wouldn't show anything anyway, right? Sure, maybe it would show that you have high anxiety. Well, no kidding! No. 1: You have a chronic condition. No. 2: That chronic condition causes the same symptoms that anxiety does!

We're in such a bizarre territory with POTS. It seems like it's a condition that kind of overlaps mind and body, just like the autonomic system overlaps mind and body. So no doctor quite knows what to do with us.

But I do know this: I love my psychiatrist! She's the one who knew something was going on besides your garden-variety anxiety and got me an appointment to see the neurologist who diagnosed POTS. And she's been a heck of a lot more useful than the neurologist.

And don't apologize for ranting! That's what we're all here for!

[doctorguest]

You're wise to suspect that your neurologist doesn't understand your condition. Some patients do not tolerate Effexor or any/all SSRIs, but that doesn't mean that the treatment options stop here or that you need a neuropsychometric evaluation. Your best option is to follow through with the referral to the Mayo Clinic.

[MightyMouse]

Time for a new neuro?

[Mrs. Burschman]

Angela,

After rereading my post, I wanted to make sure you didn't think I was suggesting that you need a psychiatrist. I was just saying that it seems sometimes the individual doctor is more important that whatever specialty they're in. If you feel misunderstood, find someone else, by all means! Life's too short to put up with docs who don't get it!

[Angelika_23]

Hello,

Yes, I thought that a new neuro might be in order, but I have to wait as she is the one who is referring me to the Mayo Clinic. Do I have to take that neuro-psych thing, or can I just say no? I just want her to leave me alone now and let me go to the Mayo and let them hopefully figure me out!

Mrs. Burschmann, I did not think that you were suggesting I needed a psychiatrist. Don't worry about it.

Honestly, I wouldn't be averse to seeing one, except that now I feel like they are trying to say that my mental state is causing my physical problems and that's just not true! I do think that there is an element that I might be a bit depressed because this has been going on for a while and I am very frustrated, but depression did not cause my symptoms. Does that make sense?

I can't believe I am still ranting...

Angela

[Mrs. Burschman]

Angela,

Yep, it makes total sense and would be entirely understandable. Coping with chronic illness is really difficult.

I know what you mean, too. My mental state is CAUSED by my physical problems. I'm more convinced of that every day. My body feels "anxious," and that makes me anxious. That also explains why talking to a counselor hasn't made a difference. Talking to someone doesn't slow down my heart rate or make my nerves behave better!

But now that I know that, talking to a counselor can help me cope with having POTS. Luckily, the counselor I'm seeing seems to understand and does not think that I'm a nutcase.

[MightyMouse]

You don't *have* to do anything any doctor (or anyone else) tells you. BTW, it can take months to get in for a neuropsych eval--and it's usually an all day affair. I am supposed to schedule one b/c I'm having memory problems.

Were it me, and were I waiting for the Mayo appt to happen, I'd probably just quietly wait until that has occurred before making any additional contact with the neuro. You should do what feels right to you--and if you need help urgently, you may have to make a choice about calling the one you have or finding a replacement.

Nina

[Angelika_23]

Thanks Amy and Nina,

I think I am going to just "sit on it" for a while and wait for the Mayo appt. There is nothing going on now that hasn't been going on all along (now that the Effexor is out of my system), and I've lived with it this long, so I don't think I need urgent help right now.

I think I'll just let voicemail get their calls - and if it's about Mayo, I'll call back!

I am glad I am not bound to do the neuropsych eval, and I hope my avoiding it will not hamper my Mayo visit.

Thanks so much for the support!

Angela

[morgan617]

If they attempt to pressure you about the evaluation, I would suggest you tell them you will be happy to have one done after mayo has ruled out everything else. That way you leave the door open to their nasty little suggestion, and remind them it's prudent to rule out any physical problems before going straight to psych ones. Psych evals should be the last order of business, not the first one you jump to when you are unsure of what's going on.

I wasn't aware you needed a referral to mayo, by the way. Is that something new, or am I on a different planet here? I did get a letter of rejection and my doctor called them and they still refused, but it had nothing to do with a referral. I actually have no idea what it had to do with.

[Mrs. Burschman]

Or you could agree to get a neuropsych evaluation after the neurologist does. Heh, heh.

[Sophia3]

Angelika

I am sorry you are STILL STRUGGLING with all of this, so!! And I, too, would say avoid the neuro psyche testing for now.

Let me know if you would like the contact to my doctor. He is within an hour of where we live. Depending on the construction &^%$$^!& 35-60 minutes!

It's tough with this illness when docs dont' "Get" the physical stuff..and with ANS, GRAVITY can create anxiety via adrenalin surges and the catecholamine cascade that can create.

Just hang IN there until Mayo the best you can.

Sophia

[Angelika_23]

Morgan,

My neuro said she wanted me to go there, gave me a doctor's name and everything, and said she'd send the referral after my insurance approved it. (???) I thought you had to have a referral to go there... I'm so new at all this.

Sophia, I will let you know when (notice I didn't say "if") I decide to change doctors, and I can get your doctor's name then. For now, I don't want to rock the boat because of the Mayo thing.

I didn't get a call from any doctors today! Yay!

Someone told me that a neuropsych eval might be a good thing. Now I'm confused... I guess I don't really know what a neuropsych eval really is. I guess I just thought they were doing it because they think I'm having mental issues.

Thanks everyone!

Angela

[MightyMouse]

You do NOT need a referral to go to Mayo--but without one you may have trouble getting your appointment to pay for it. You can go there without an appointment, but the issue is then that you're going to have to wait for whatever specialty appointments you need as determined by the medical professional who is assigned to you when you show up. Also, some of the docs DO require an appointment with a referral from your home doctor, so if you were hoping on seeing a specific doctor, you'd probably see someone else.

You can call Mayo and ask questions or look up info on their website about visiting.

Nina

[Sophia3]

Angelika

The doctor I see has a SEVERAL MONTH waiting period. If you like, you can call and see if you can make an appt and THEN later on, work on a referral or whatever you need to see him.

BUT get that appt. He can take MONTHS to see but worth it as he is a smart cookie.

I would simply call and make the appt. They are so busy, I don't think they would even try to contact your current doc but unless things have changed, the pt can make the appt to see him themselves.

he is an Internal med doctor and an endocrinologist...also a diabetic specialist which helps him be very familiar with ANS issues.

I found him via a letter writing campaign. A therapist said I was not mental but needed to get hormones checked (My initial dx for YEARS and YEARS was CFS) So when the gynecologists did not think they could help me. one called me on the phone and gave me two endocrinologists in Cincinnati. One being my doc.

On my first visit, he did a poor man's tilt table test and took notes and ordered lots of tests and all sorts of urine collections.

When I later got a copy of my records (I THOUGHT about going to Vanderbilt at one time but changed my mind since my doc was up on all the meds OR my suggestions) the frst thing noted in my records on that first visit was "ANS dysfunction ??"

Never in my notes did he have pt seems over anxious or anything (or he just never wriites down things that can come back to bite us)

Other docs will simply send RECORDS of tests and a short letter. He gave me MULTIPLE copies of every note he ever made on me. I was impressed.

Not that I am selliing you on hm, I Just hate to see you so ***** FRUSTRATED.

Are you able to work at all during all of this? And the heat is just brutal.

Soph

[Angelika_23]

Thanks for the info Nina

Sophia, I am trying to hang onto my job... Not sure how much longer the FMLA will hold. I need my job because I carry the insurance on my family. I HOPE HOPE HOPE this Mayo thing doesn't take months to happen, because by then I very well might not have insurance...

The heat doesn't bother me in the building I work in. In fact, it is downright frigid in there. What is hard is coming out into the heat after freezing for a couple of hours.

I will have to get your doctor's info from you.

Thank you everyone!

Angela

[friday]

Morgan,

My neuro said she wanted me to go there, gave me a doctor's name and everything, and said she'd send the referral after my insurance approved it. (???) I thought you had to have a referral to go there... I'm so new at all this.

Sophia, I will let you know when (notice I didn't say "if") I decide to change doctors, and I can get your doctor's name then. For now, I don't want to rock the boat because of the Mayo thing.

I didn't get a call from any doctors today! Yay!

Someone told me that a neuropsych eval might be a good thing. Now I'm confused... I guess I don't really know what a neuropsych eval really is. I guess I just thought they were doing it because they think I'm having mental issues.

Thanks everyone!

Angela

Angela,

I looked up neuropsychological evaluation

and this is what I found

From-http://ccm.psych.uic.edu/Research/ResearchProgram/Neuropsych/evaluation.aspx

"What is the Purpose of a Neuropsychological Evaluation?

A neuropsychological evaluation provides comprehensive assessment of patients in whom impairments of cognitive or neuropsychiatric functioning are evident or suspected. Assessment involves a systematic evaluation of higher cognitive abilities in order to identify possible problems with brain functioning, help lead to a diagnosis, define strengths and weaknesses, and make treatment recommendations. "

So it doesn't seem to be a "mental issues" thing...even though it sounds like it , doesn' t it.

I definitely wouldn't take the Effexor though if it was giving you a bad reaction. It's dumb of them to want to up it. Some people just have bad reactions to certain drugs.

[Angelika_23]

Hello

My insurance did authorize Mayo (yay) but now Mayo has to decide if they want to take me on as a patient. On the phone they told me they get hundreds of requests a day and can't take them all. So I am waiting for my neuro to get back to me so I can tell her to call them and make arrangements to get a referral and my medical records to Mayo so they can see if I'm worth it. And, if they deem me worthy, there is about a four month waitlist. Which I can't be put on until I'm approved.

I'm really down. I am having major issues since the weekend. My son is in band and had a competition Saturday and really wanted me to go. I couldn't bear to let him down. So I went, which was not the best thing for me and boy am I paying for it now. I barely worked today.

Well, now I'm back to hoping the neuro will call instead of avoiding her.

Thanks for letting me vent once again

Angela

[Sophia3]

angelika

What abou Vanderbilt? Lots closer than Mayo and I read on another site, I think, for an appt it was only a couple months wait. Would need to double check that.

NOT for research but one day out patient study. They do like a TTT or go by previous one, have you lie down on a table and do deep breathing, a valsalva maneuver type test, then the hand in ice water tests and give you results.

ALL IN ONE DAY and they give you the paperwork before you leave.

That is good because MANY of the research places are a nightmare to deal with AFTER you leave to get PAPERWORK.

Anyway, maybe you have already thought about Vandy or are just too overwhelmed with another hospital ideal. But Vandy would be easier for travel, both physically and financially, if either of those are a concern. And time wise, you would only be away from home 3 days. One to drive, one for testing and one for drive home.

Nashville is about a 6 hour drive from this area.

I am sorry you are struggling in Limbo Land as that must be difficult with a family and on.

Tie another knot in the rope and HANG IN THERE!

sophia

[Angelika_23]

Hello All,

I got a voicemail from the neuro's office today. They have been in contact with Mayo, and have sent my records to them. I should hear something from Mayo within two weeks. They said I could possibly be referred to a different physician within Mayo, see the one they referred me to, or they may just make some suggestions for my neuro here to try...

Sounds like things are moving now, so that is good. Lets keep our fingers crossed that I get to go to Mayo and they can help me!

Angela

[pastordari]

My fingers are crossed!

i'm glad you are making some progress through the medical jungle.

Dari

[LindaJoy]

Angelika,

I was put on Effexor last year when I was in that CC chronic pain program. On even a low dose, my bp went up to 150's over 90's, and I usually run 106 / 60's. I was waking in the middle of the night, seeing something like lightning bolts on the walls (causing some kind of neurologic problems, I would say). I would yawn all the time, and it was more like uncomfortable air hunger. I would have severe irregular heartbeats--bradycardia to the point I would nearly black out. Terrible chest pain. I developed ear infections, had to eat every hour or I went into terrible anxiety. I would flush from the chest up. I can't remember what all. It was terrible. I told the docs about it, and they doubled my med dosage!!! I told them what they could do with it, and I quit taking it. It took a very long time to get over it. I heard of a girl who took Effexor (she was on one of the morning talk shows) and had terrible side effects, as well, of which her doctor didn't believe, either. She stopped the med and had a terrible time coming down off of the effects.

Anyway, just my experience to let you know you're not alone in having terrible side effects to this medication. Many people tolerate it well, but many don't, and doctors have to listen to those who don't!

I agree that you need a new neuro. It's so important to work with doctors who listen.

Take care and know we're here to listen.

Lindajoy

[Sophia3]

Angelika,

Thanks for the update!!

I am sending you luck and patience . . . and hope the process speeds up for you.

[Angelika_23]

Still waiting...