Angelika_23

Okay,

I saw my PCP. I have to be fair and say he wasn't too bad. He agreed to give me a referral to Dr. Grubb and also to the New Onset Seizure and Syncope Clinic at University, but I had to agree to seek counselling.

I don't know why docs jump right to the "she's crazy" diagnosis... He was almost unwilling to admit that any emotional issues I may have stem from my frustration with my condition, not the other way around!

But anyway, I basically got what I wanted. A little more support or some good suggestions would have been good, but hey, I'll take what I can get! I guess I'll start harrassing Dr. Grubb's people soon about an appointment, maybe they'll put me on a waitlist for a cancellation or something since I'm only a couple hours away.

Angela

PattiL, do you have a number for Beverly?

Angela

Thanks for the advice, I will do just that.

I just called Dr. Grubb's office, and they are booked solid until next June. By then, I may not have a job OR insurance. So, even if my PCP will do this for me, I still have a nine month wait. This week has just been an avalanche of bad news.

I am home today, my HR is at 130 just being still. So uncomfortable!

Thanks everyone

Angela

I can't get in to see Dr. Grubb without a referral. I called his office, and that's what they told me. So unless I get one of these current doctors to cooperate with me, I am out of luck.

I am still upset.

Today, I had a bad episode at work and my husband had to bring me home. I feel awful.

The neuro FINALLY called me back a little bit ago, didn't know anything about the denial, I had to read the letter to them, then they said that they can't/won't do anything until I come back in again. The can't get me in for several weeks. I wanted to cry. I told them that is NOT okay, and I am feeling bad NOW.

I asked for a referral to Dr. Grubb, they said no, no referrals or even follow up to find out why Mayo declined me until I come back into the office. It is so easy for them to say NO.

So, I am going to drag myself into my PCP tomorrow, even though I detest him, and ask him for a referral to someone, anyone. It isn't likely that he'll help, he's the one who said there is nothing wrong with me that medication and counseling won't fix. But I'm desperate, so I'll try it.

Angela

Heather, have you been at your job for over 12 months, and worked over 1,250 hours in previous 12 months? Because if you did, then you qualify for FMLA (If your employer has more than 50 employees).

That seems pretty awful for someone to do, especially an employer that is involved in healthcare.

Sorry I couldn't be more helpful

Angela

I am not on Effexor anymore. I refuse to take anything else like that until I get some more answers. I am hanging out at my base, which isn't great, but at least I don't have the chest pains.

Angela

I am so down. I called today to check on the status of my appointment, only to find out that the Mayo clinic declined to offer me one. I don't know what I am going to do. I have been counting on this so much!

The neuro didn't even call to tell me! I tried to call them, but they are gone for the day. I will have to try them on Monday.

I can't do this indefinitely! I need some validation, a real diagnosis. They told me I don't have POTS, but I most likely do have autonomic dysfunction, but they said they can't help me here in Cincinnati.

Angela

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

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

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

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

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

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

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

Hello,

Thanks for the responses!

My chest pain and pressure, and come to think of it, shortness of breath and dizziness are all intermittent. They hit me several times a day, doesn't seem to matter what I'm doing when they hit. I guess that's the 'XR' (extended release)? I am so miserable.

I am not sure how to taper off this stuff, I am only on the taper up dose now, 37.5 mg, not the full 75 mg. I can't cut the pills in half...

The ER doc said if I wanted to stop taking them that I could just stop, that I had only been on them four days at the lower dose. I am uncertain about this... The ER doc also said the Effexor wasn't causing my problems... But then again, he had no idea what POTS is, and very little about autonomic dysfunction.

Angela

Hello,

I started having chest pains, pressure and dizziness yesterday afternoon. I was sent from work to the ER, where of course everything came back normal so they sent me home. I am still pretty uncomfortable, but no one seems to want to help me. I just started taking Effexor 37.5 mg on Wednesday am, and I started taking extra Calcium on Tuesday afternoon. All the docs are swearing Effexor would not affect me this way.

I really wish that appt at Mayo would hurry up and materialize!

Angela

The neuro called today, they say I will be going to the Mayo Clinic in Rochester, MN. We are awaiting precertification of my insurance before the appointment will be scheduled.

So, any advice/suggestions/etc. for me going to Rochester, MN? Hopefully it won't be too long of a wait, I don't want to be there when it snows.

Angela

What is the Effexor supposed to do, really?

Will it fix my heart rate? Will I be able to stop taking some of these other medications? The Midodrine pretty much keeps my HR where it should be - Hopefully the Effexor won't slow it down even more!

Thanks for all the responses.

Angela

Thanks for the good information everyone!

One more question. Can I continue to take the Klonopin with the Effexor? I was so muddled, I forgot to ask! I mean, I asked if I should discontinue any of my meds and they said no, but I didn't ask about the Klonopin specifically.

Oh my, I can't afford to get a hotel for a week or two out of town. I hope they can do my testing, etc. inpatient or all in a couple of days! Even a couple of days would hurt our budget.

I am very hopeful that the Effexor will have good results. I am a bit wary of adding yet another medication... I react strangely to them sometimes. Everyone has given me some good feedback about it, so I'm not quite so nervous about it now.

Thanks

Angela

Hello,

I got all my neuro test results back. Everything was perfect, except that I have a slight calcium and vitamin D deficiency. The doctor suggested I try taking Effexor for my headaches, my symptoms and she said I did come out as slightly depressed. She is starting me on a half dose for seven days, then up to a full dose.

Now I am being referred to either the Mayo Clinic or Cleveland Clinic for possible autonomic nervous system dysfunction. Does anyone know how long these visits take? Will I be there overnight, or just for a day?

This is so frustrating.

Angela

Hello,

My doc had me on atenolol for a bit, and it didn't help me either. He changed me to midodrine, and that does seem to keep the heart rate under control. I don't have problems with my BP usually, except lately it's a little high (I think) because I am on midodrine and florinef.

Good luck!

Angela

Okay, here is the rundown on my TTT. My pcp gave me the results when I saw him today.

Baseline Bp: 145/90 Baseline HR: 101

"At start of tilt table, BP ranged between 145/91 - 172/78 to the recovery BP of 159/86." (what is a recovery BP?)

"HR ranged between 101 and 125, with an occasional increase to 154 that was just transient, associated with nausea and retching. Immediately after, symptoms ceased."

They concluded that this was a negative test for POTS, not sure if it was because of my meds, or if I don't have POTS at all. They are sending me to neurology for a lot of tests, then possibly I might have to "repeat card unit"(what is that?) "or have a life watch monitor" (what's that?) and possibly stop the Florinef and Midodrine if I appear to have a neurological component. (???)

If anyone understands any of this, please let me know.

Thanks,

Angela

Hello,

I just got back from the pcp. He says I have a sinus infection, so he put me on an antibiotic. While he was listening to my chest, he said when I coughed it really raised my heart rate. Is this normal?

Also, one coughing fit made me so lightheaded I thought I was going to pass out. Is this part of it too?

Thanks,

Angela