Update on rough patch and good dr visit also vent re cleveland

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Update on rough patch and good dr visit also vent re cleveland

Post  sconesail on Fri 27 Jan 2012, 9:58 am

Hi All,

I thought I would update on a new thread as the other was getting long.

First the good news- I saw my pain dr this week and he said that he would be glad to let me continue on Ultram for the daily pain, with Tylenol 3 for breakthrough. This is good as the Ultram has been working well for me. So that is good.

The headache is still horrendous. I have an IV of Depakan scheduled for Monday at 1. I have been non-functional most of the week due to the horrible headaches and the fainting. I just don't know what to go anymore. Pretty much everything is a stop-gap measure at this point, but at least we can treat the headaches.

Cleveland:
I really do not know what these people are thinking!

I fainted 30 times last Saturday. I had some very scary falls- I fell out of the handicapped sit and shop cart at walmart and ended up upside down on the floor. I was not hurt, but it really rattled me.

When I called the cardiologist I saw at Cleveland- his nurse was not helpful. I also had to correct some stuff in the report. He had me listed as "negative for headaches and migraine." this is not true and I did get it changed. The nurse then asked if I went to the ER and I said, "No, there wasn't anything that the ER could have done." She then asked "well, what do you want us to do about it." I said, "Well, writing it in the chart and seeing if the dr has any ideas would be good." She said she would. I have heard back from her and she said there isn't really anything to do and I should find a good loval EP. I asked if she would check with the dr and see if they knew of anyone in or around Alabama who deals with this. (I have heard there is a good one in Pensacola and we may have to go there.) She did say she would ask the dr.

I also tried to get in touch with one of the neuros I saw there. I got pretty much the same response- "what do you want us to do about it." I don't know- reccomending something would be good. Any new ideas would be helpful. I am not an expert- they are supposed to be the experts, but they can't answer simple questions. Basically, they have done nothing. I hate this. I hate the fact that there aren't any good answers and the fact that they do not seem willing to help. I am however, going to get his report as well.

All I really want is an answer. Treatment would be nice, but it is hard to treat without a good diagnosis. Current diagnosis is Neurocardiogenic syncope. I think the fainting might be a vagal nerve issue, but it is awfully hard to pin anything down.

All I can do is, well, what I am doing- surviving. But how many times do I have to go through this before getting some kind of answer? I am just so darn frustrated.

Pain free days,
sconesail

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Cluelesskitty on Fri 27 Jan 2012, 9:34 pm

Oh gosh, this is soooo infuriating. What these Cleveland people are being paid big bucks for ?????
They can't even keep a proper documentation, looks like! Evil or Very Mad

I think it's definitely a better idea to move onto more personal, referred specialists.
I hope they'll give the care you so need and deserve Scone.

At least your pain doctor seem to be a nice person, and that's important.

Risa

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Migrainegirl on Fri 27 Jan 2012, 11:15 pm

Seriously!? "What do want us to do about it" is their response when you have significant (and potentially dangerous) outcomes due to following their directive to stop taking the medications you were on? That is amazingly irresponsible and close to malpractice. You need to find a new doctor and move on ASAP before you do get seriously injured. It is obvious Cleavland Clinic has no answers for you and is fairly callous to boot.
I'm glad you current doctor is being more helpful.
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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Cluelesskitty on Fri 27 Jan 2012, 11:42 pm

I am glad I am not the only one who thinks so. I just didn't wanted to sound like I am blowing things out of proportion,
but that's exactly what I thought - if you don't have grounds to sue, Sconesail.

I think you are being treated recklessly and callously, too. They could at least keep your records straight!

Risa

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Porsche Fan on Sat 28 Jan 2012, 1:02 am

sorry for the duplicate post.


Last edited by Porsche Fan on Sat 28 Jan 2012, 5:12 pm; edited 2 times in total
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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Porsche Fan on Sat 28 Jan 2012, 2:37 am

Since CCF is so non-comittal in it's advisal, I would take it that they don't want to help. I think it would be beneficial to go on one's own ideas since they have nothing to add. they will not change their mind.

So any effort on them purely seems to be a waiste of time . Hopefully other docs might do some tests and not waste so much time.

This is very hard as symptoms might not be obvious for them to see. The difficult part is proving an issue and having good documentation.

best of luck!


Last edited by Porsche Fan on Sat 28 Jan 2012, 1:43 pm; edited 1 time in total (Reason for editing : wow, i can't write a sentence to save my life.)
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Re: Update on rough patch and good dr visit also vent re cleveland

Post  sconesail on Tue 31 Jan 2012, 5:50 pm

Hi All,

Thanks for all the words of support.

I completely agree that Cleveland has not been helpful. It is close to malpractice or they just do not know what to do. I am getting the records corrected- that they can and WILL do even if I have to get them to do it myself.

I don't know what else to do here except what I am already doing. I am, however, looking into someone who could possibly help- either a new cardiologist or a new neurologist. The only thing I do is to keep searching. Even if there isn't much treatment- I feel like I need to know what this is.

I had the IV yesterday and it has helped some. I have just rested today and I certainly needed that.

Pain free days,
sailingm

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Cluelesskitty on Tue 31 Jan 2012, 6:50 pm

Keep searching for the better doctors, Scone.

Someone very smart made me realize that in all these Mystery Diagnosis episodes and Mystery ER, it was mainly
the patients who kept returning to the ineffectual doctors or to ER where nothing ever happens
instead of looking for answers somewhere else.

I mean, I did knew it wasn't smart going back to a family doctor who kept dismissing your complains or to specialist
who seemed clueless,
but this special someone made me see how really pointless it was.


So, yeah, I second your decision to drop the Cleveland pond of quacks and go look someplace else.

More good luck to you, sweetheart!



Risa

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  sconesail on Mon 06 Feb 2012, 7:26 am

Hi All,

Thanks so much for the replies.

As CC really doesn't have much to offer, I am looking into other options. In addition, the way they have handled the follow up is just ridiculous. I know they sent some records (mostly ECG strips) to my cardiologist and I am going to get those records. I am also looking for another cardiologist who is an EP and might be able to help. I do have tachycardia, but no arrythmias. I do not think it is strictly cardiac in nature, but I would like to talk to someone who knows so that we can rule it or out.

I also wonder whether this could be some type of movement disorder or something. I have been doing some reading and some of the symptons do fit. However, I think that this probably neurological and that it is somehow related to the vagus nerve. So I am looking into that as well.

I had an IV of Depakan last week and that has helped some. Though, I woke up about four am today with a killer migraine. All I can do is take the meds and wait it out for now. It has been a pretty stressful week- a friend of the family died last week, and my roommate's uncle (who is a wonderful man) had a stroke. Fortunately, all I have to do today is go to training and probably make a casserole for their family.

I am just so frustrated and tired of all of this.

I really do not know what I would do without your help and support.

Pain free days,
sconesail

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Cluelesskitty on Mon 06 Feb 2012, 4:14 pm

Movement disorder? what an interesting idea. could be, why not...

Sconesail, what I love about you, is how you never ever give up. I know this is probably bittersweet
to hear that, as life like yours sure is hard. Uplifting words doesn't make it any easier, but really, you are great young woman,
who in the face on an adversity not only do not give up but is able to come up with new ideas.
And that's awesome.

Risa

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  Anna's Mom on Mon 06 Feb 2012, 9:05 pm

Yup, Sailing Muffin is awesome!

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Re: Update on rough patch and good dr visit also vent re cleveland

Post  sconesail on Tue 07 Feb 2012, 6:09 am

Hi All,

Thanks so much for the kind words. If nothing else, I am really glad to know that I am "awesome" in your books. And y'all are pretty awesome too.

The headache is still bad. I am having to take more klonopin and tylenol 3 than usual. ( I got off of them about two months ago and now just take them for the really bad ones.) however, there is no difference in the ffainting on or off them. Right now, the pain is pretty horrendous- hovering somewhere around a 9. Ultram, Tylenol #3, klonopin, and benedryl are takking the edge off, but that is all. Still, every little bit counts and since they take the edge off, i have no problem taking them for this one.

I was able to make a Poppyseed chicken casserole and some sugar free meringues for my roommate's family.Her uncle had a stroke last week and is in ICU. He wasn't responding to much at first, but he is responding to things now- he squeezedd my hand and it looked like he was trying to talk. He is a really nice guy. I ended up sitting next to him at Thanksgiving and he ate quite a bit. According to his sister-he never eats that much. So at other functions- they started putting me next to Robin so he would eat. Plus he has great stories. I hope he comes through this, but you never know in these situations.But he is quite frail and has had cancer- it is in remission though. So any good thoughts or prayers are welcome.

I don't usually get scared of the fainting. But last night, I kept fainting and it was scary for some reason. I ended up crying- which I don't do a great deal of. I am so frustrated by the fainting and the migraines. I just want to know what this is, because it is just overwhelming me a bit right now.

The movement disorder theory came after my Mother watched a program about a girl with tourette's. One her worst tics was fainting. Iknow I don't have tourette's, but maybe there is something to the movement disorder theory. I am certainly going to investigate it in addition to the vagal nerve stuff. I think this could be both neurological and cardiac. I am also going to write to NIH to see if they know of anything like this.

I don't have much to do today- appt with my psychologist and some volunteering at Bear. Fortunately six year olds aren't worried about fainting. I am pretty sure I will just be cataloging books for the AR program, which is pretty easy. Other than that, I am going to try and rest, take the meds and hope it helps.

Pain free days to all,
sconesail

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