Update- BadM and possible clue to fainting

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Update- BadM and possible clue to fainting

Post  sconesail on Wed 21 Mar 2012, 1:55 pm

Hi All,

The headache has been absolutely horrendous lately. The IV I got about 10 days ago took the edge off, but that is it. I also took a course of decadron and that hasn't helped much. The ultram, tylenol3, and klonopin help the head some, but ii has been nearly impossible to function for the past few days.
Last night, I was so frustrated and tired that I just lost it for a bit. the headache was really making me anxious, which is unusual. Fortunately, I was able to speak to a friend and then go to bed. I have never had any problems with anxiety, but I was definitely anxious and addled and frustrated last night. I fellt like I do when I get exhaustion, but worse- just worn out and scared. I did take some klonopin and it helped some.

I have rested most of the day today. My roommate- (who gets a gold star and brownie points) for dealing with me yesterday and even today, is at work, so i have been able to watch something on her computer and just sort of chill. I have, however, fainted about twenty times and all I could dowas drink fluids, rest, and hope things get better.

I may have found a clue to the fainting problem. Fainting normally occurs when your brain isn't getting enough blood and oxygen- which explains why i recover quickly, as soon as i hit the floor or my head goes down. i saw a simple pulse/O2 monitor at the drug store- just thinking- well this hasn't been checked, so lets check it. It has proven to be quite interesting. I faint pretty much every time the heartrate gets above 130 or the O2 drops below 92. Usually, the pulse is high and the O2 normal, but in at least five cases, the O2 has dropped, as has the pulse. lowest O2-66, lowest pulse 30- back to normal in 5 min. I am not sure if this will lead anywhere, but if it even gives us a clue or rules something out, then it is worth it. at this point, I wouldn't be averse to trying oxygen just for a few daYs to see if it would help. I see my PCP tomorrow and will ask him about this.

I finally heard back from CC regarding this. i was told "Well, no Dr. J can't help you- he only deals with direct arrthymias of the heart, oxygen is a lung problem." Funny, I thought, the lungs supplied oxygen to the blood and the heart pumped it anf you1 can't have one without the other.

Anyway, I will keep you updated. I would love any advice,

Pain free days,
sconesail

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Re: Update- BadM and possible clue to fainting

Post  Ruth on Wed 21 Mar 2012, 8:43 pm

I don't have any advice Scones but I hope they can get to the route of this fainting problem and the headaches soon, to faint that many times sounds really scarey. Do you ever hurt yourself when you faint, like bang your head?

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Re: Update- BadM and possible clue to fainting

Post  tortoisegirl on Wed 21 Mar 2012, 9:09 pm

Great idea on the pulse ox monitor. I think you are onto something. I was going to say something about asking your primary doctor before I saw you wrote that. My primary doctor has been the most helpful of all of mine. They of course aren't familiar enough with a lot of topics to act on them.

Also, have you had a sleep study done? Not sure if a sleep disordered breathing condition can lead to fainting, but with this pulse ox discovery, I'd be intrigued to know if anything is going on at night. Mine didn't show anything but it was helpful to rule out a lot of stuff that could have caused some of the issues I have such as fatigue and only breathing through my mouth at night.

Weird questions-Do you ever faint while sitting down? Are there more occurrences soon after standing?

Yeah those bad days after you've had some better days are the pits. I think I'd do better with a consistent pain level that was higher than my average...just to have some consistency. Mine is all over the place, which makes it even harder to manage with pain meds (although I'm thankful to have something that helps at lease sometimes). I also have a bunch of symptoms and conditions with dead ends from the doctors. I'm so sick of it. Time for a break from it all until I have the energy to try again. Best wishes.

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Re: Update- BadM and possible clue to fainting

Post  Porsche Fan on Wed 21 Mar 2012, 10:33 pm

whoaa....scone!

you're finding yourself tachycardia, then after a faint a heart rate in the 30's? this isn't quite a mystery anymore.

normal heart rate is 60-100 beats per minute. your reveal should be capturing this data!

get someone to pull that data down asap.

best of luck.

PF.
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Re: Update- BadM and possible clue to fainting

Post  sconesail on Thu 22 Mar 2012, 6:16 pm

Hi All,

Thanks so much for the advice and help.

I saw my PCP today. He was a little surprised at some of the readings as well. He did agree to set up a more sophisticated pulse/ox monitor to see if the sats are dropping and such. I am really glad he was willing to listen and open to ideas. He did say that he didn't know what else he could do, but he wished he could fix it. So we will get it set up.

I do have sleep apnea and I do use CPAP at night. It really has helped. In fact, it has been the only thing that has clearly helped consistently.

It has been a rough weak fainting and headche wise. I was able to do some volunteer work today and may do some tomorrow- depending on how I feel.

I see my pain dr Monday. I may ask for either a longer acting version of Ultram or at least, a higher dose as it is helping some.

Pain free days,
sconesail


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Re: Update- BadM and possible clue to fainting

Post  Migrainegirl on Thu 22 Mar 2012, 8:35 pm

That's really significant! You should have a pulse ox of 95 or better unless you are a smoker or have very poor heart functioning. So unless that is an artifact,(eg just a poor reading) you are onto something significant. Your PCP should recommend you to a cardiologist ( and not those jerks at CC) to get that checked out. Definitely log your findings for a few days. It should be very helpful.
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Re: Update- BadM and possible clue to fainting

Post  Cluelesskitty on Fri 23 Mar 2012, 5:25 pm

I may have found a clue to the fainting problem. Fainting normally occurs when your brain isn't getting enough blood and oxygen- which explains why i recover quickly, as soon as i hit the floor or my head goes down. i saw a simple pulse/O2 monitor at the drug store- just thinking- well this hasn't been checked, so lets check it. It has proven to be quite interesting. I faint pretty much every time the heartrate gets above 130 or the O2 drops below 92. Usually, the pulse is high and the O2 normal, but in at least five cases, the O2 has dropped, as has the pulse. lowest O2-66, lowest pulse 30- back to normal in 5 min.



Scone, first of all - again and again,
I just have to tell you how impressed I am with your intelligence and diligence in putting two and two together
to find out what's wrong with your health!

Second, - with such a bang my jaw hit the floor after realizing how YOU, of all people, after all this time,
after seeing so many professionals, Cleveland Clinic including -YOU ended up thinking of such a simple yet SO VITAL test
your doctors should have thought of in the first place to do!!!!

I can't believe that!! As much as I commend you for being so brilliant and always coming up with finding ways to either
fight with the medical community or fight with your medical issues,
I can't believe that not one of those many Big Letters apart from and after a simple "MD" ever thought of what you
just did!

lolol clearly I am equally torn between concentrating on praising you, dear Sconesail, and tearing those... those... uuughhhh!!!!


Well, whatever! what counts is YOU discovered this very important clue not thanks to no one, and I sincerely hope
this will be the breakthrough that will make you case, Sconesail.
I hope your PCP will go even more and will sent you to some best cardiologist, better than those you've previously been to,
and at least the fainting will be at last explained.

Keep us posted, and stay well!

Risa

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Re: Update- BadM and possible clue to fainting

Post  Sara79 on Fri 23 Mar 2012, 9:08 pm

OK, so part of this is what I went to school for (respiratory), and I'm feeling OK right now, so I figured I'd put out a couple of thoughts. You may need to see a pulmnologist (lung doc) instead of a cardio or neuro.

If nothing else, you need oxygenation saturation studies done, which are an easy test. They'd put on a fancier oximeter that can record your heart rate and oxygenation, and then download it for study. Sometimes they like to order an exercise tolerance test, which means that they'd hook you up and ask you to walk at whatever rate is comfy for as long as possible, up to about six mins. This would let them see if the desaturation events are artifacts, or if they are actual desats. This would let them figure out if it's a cardio or pulmonary issue.

Obviously you've jumped most of the cardio hoops (taken the tests), so IDK what they could do if they determine it's a cardio issue, but it would be more info. If it's pulmonary, there are many tests and treatments to go through, but it would hopefully be something that can be treated and your fainting would lessen/go away.

Good Luck and feel free to ask me questions, I'll do my best as I'm able to help you get answers.

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Re: Update- BadM and possible clue to fainting

Post  Cluelesskitty on Sat 24 Mar 2012, 3:10 am

What would we do without you Sara?
I am so grateful for you, and for every and each one of you!
(please excuse brevity, I am battling migraine and can't think straight, but hope you guys get the gist
of what I am trying to say!)

We are so stronger together!


(excuse me while now I am going to sob in the corner Smile )

Risa

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Re: Update- BadM and possible clue to fainting

Post  Sara79 on Sat 24 Mar 2012, 11:12 am

Thank you Risa. Embarassed I was just happy to have an area where I had solid knowledge about, rather than my usual, hope you figure it out, talk to your neuro, good luck.

Anyways, yesterday was good, today less so, so I'm keeping this short. Enjoy the weekend, and cross your fingers for me (it's chicken shaking time). The hospital I really want to work at is supposed to call soon. The head of the department called me, and his words are making me hopeful about getting an offer, but those have to come from human resources, and they're checking my references.

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Re: Update- BadM and possible clue to fainting

Post  Cluelesskitty on Sat 24 Mar 2012, 5:49 pm

Good luck Sara darling !!




Now, the powers that be are surrounded by them chikuns'! they better do the right decision, lolol



Risa

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Re: Update- BadM and possible clue to fainting

Post  Sara79 on Sat 24 Mar 2012, 9:04 pm

Thank you again Risa.

Scone, I'm sorry if I've derailed your thread. Take care of yourself and let us know what you figure out. I'm chicken shaking that you find it out, because you've battled this monster.

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Re: Update- BadM and possible clue to fainting

Post  sconesail on Mon 26 Mar 2012, 6:56 pm

Hi All,

Thanks so much for all of the replies.

I saw my PCP last week and he agreed to set up an oxygen monitor. He sent the order and I am just waiting for the call from the people who will provide the monitor. If nothing else, this will either rule something in or out- which will be helpful. I am not sure if it is respiratory or cardiac but being able to rule one or the other out will help.

Sara, thanks so much for your kind words and help. I really do not know how I would get through the fainting and migraines without the support of everyone here.

The Migraine is settling down some. I saw the pain dr today and I am going to try Ultram ER, with Ultram and Tylemol #3 for breakthrough will help. So, hopefully, the pain level will stay down some.

Pain free days,
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Re: Update- BadM and possible clue to fainting

Post  Sara79 on Mon 26 Mar 2012, 7:53 pm

I'm glad you're getting it all checked out. I'm not quite sure how Risa finds the cute moving emoticons, but I'd try to have someone cheering or doing the Happy Dance for the better news. I'm also so happy the M pain is down.

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Re: Update- BadM and possible clue to fainting

Post  sconesail on Thu 29 Mar 2012, 2:15 pm

Hi All,

I had the O2 oximeter study last night. It was supposed to start at bedtime, but when I told the man who came to set it up the problem that I really wanted to see what happened when I fainted, he said to put it on at 6 pm. I did, but I only had one or two fainting episodes. I woke up this morning to find that the monitor had fallen off during the night, so I have no clue how much data it got. I have a call in to the test people about seeing if we can set it up to do during the day. I also have a call in to my doctor. I don't think it will be much of a problem to do it during the day. So, we will see. I do have to run the device back, because the battery is out. But, I am pretty sure we can get it changed. If it shows something, great. If it doesn't, no harm done, just one more thing ruled out.

Thanks for the replies and such. I am not sure what I would do without y'all. the headache is not great today. Fortunately, the long acting Ultram, along with the klonopin has helped. I was able to to get a few things done.

Basically, I got a chicken pie cooked for supper and another one to take to brother for his birthday. I also got a couple of AR test written for the kids at the elementary school. I know it isn't much, but something is good and I take it one day at a time.

Anyway, glad to have gotten something done, despite the headache.

Pain free days,
sconesail

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Re: Update- BadM and possible clue to fainting

Post  Migrainegirl on Thu 29 Mar 2012, 6:08 pm

Since you are not fainting in your sleep (not sure that is even possible ), I don't know why they are doing it at night. I would think during the day, so it could track what happens to you before and during an event would be the most helpful.
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Re: Update- BadM and possible clue to fainting

Post  Cluelesskitty on Fri 30 Mar 2012, 6:38 pm

Ditto :/
and beats me :/
some people are so go***mn irritating !!! :/

I really don't understand why can't you have this thingamajig 24/7 then, because you faint a lot during the day?
Is there a way you can convince them to let you wear the monitor around the clock, then?
I think it would be the best way to collect the data for you.

Do we the patients really have to do everything for ourselves?
Looks to me it's pretty much a common sense to put the thing on you in a daytime first of all,
since your history of fainting clearly shows your fainting spells happen mostly during the day, when you stand up.

Okay, I am taking under consideration since I am not medically trained I may not know something "they" know,
that there might happen something at night which might be related to what happens during daytime fainting
(which I doubt) but still the moment of sudden loss of consciousness should be, imho, monitored, too.

Well, good luck, dear Scone, as your sure need it since you always got to deal with a bunch of .. I better not say what,
lolol or I'll have to ban myself from the board, lolol

Your chicken sound so delicious, mmmm, makes me hungry for some chicken !!



Risa






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Re: Update- BadM and possible clue to fainting

Post  sconesail on Mon 02 Apr 2012, 12:30 pm

Hi All,

Thanks so much for the replies.

I got in touch with my dr's office to see if we could do the test during the day. Apparently, my insurance won't pay for it to be done during the day. Yes, the test was normal- at night, with CPAP- of course it was normal. But, since the test was "normal" they do not seem to think they should do one during the day- specifically when i faint.

I don't know what to do anymore. I am so tired of having to live with this, of having to scramble for ideas on my own. I just feel helpless right now- the head is bad, as is the fainting and I am so tired of this that I have no clue what to do. I just don't think that this is ok- I don't feel that fainting 20-30 times is ok. But I can't get anyone else to see it.

I am furious. I am tired. I am scared.

But I don't know what to do.

Pain free says,
sconesail

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Re: Update- BadM and possible clue to fainting

Post  Migrainegirl on Mon 02 Apr 2012, 4:17 pm

That really makes no sense. It sounds to me like the wrong test completely. They are giving you a test that would be given to see if you have problem with sleep apnea, which is what would lower your o2 sat at night.
You have a problem with drops in O2 during the day, potentially causing fainting. I think you need to go back to the doctors office to get the right test administered.
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Re: Update- BadM and possible clue to fainting

Post  Sara79 on Mon 02 Apr 2012, 7:09 pm

Yeah, as everyone here knows, they ran the wrong test. IDK what exactly to recommend, but I do know that I finally got a lifetime prior authorization for the pain pill that works by having an ER visit after they made me try something related to meds I'm allergic to.

If you didn't have to pay extra for it, I'd say you should start calling an ambulance every time you pass out, until they agree to run the correct tests. Actual useful advice, I don't have as much. Asking your folks if they know someone pulmonary who's really well recommended in your part of the world wouldn't hurt, and maybe the doc would know how to get permission for the correct tests pushed through the insurance company.

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Re: Update- BadM and possible clue to fainting

Post  tortoisegirl on Mon 02 Apr 2012, 9:14 pm

That is really disappointing and ridiculous insurance news. Can you look into how much the cash discount price for a day test would be? Sometimes stuff is surprisingly affordable (or expensive). If spending say $500 has a good change pf puting you in the right direction, it can be worth it. I would by no means go broke doing that though (since it isn't a sure thing).

Also, make sure you exhaust the entire appeal process. They always have one, no matter how hard they make it for you to use (p.s. the first appeal is always denied...you need to keep going up and up). Make sure the appeal includes a log of an actual week or whatever of when you faint (note the times and total them up), a note from your doctor saying what the difference in the day vs. night test will show, what you are trying to accomplish, etc. Often they try to lump everyone into one group when we don't fit in it.

I don't get with how expensive our healthcare system is (compared to other countries with actually better health stats on the population than ours), we have so many of these issues with them not paying $100 to say $1,000 (as an example). Keep fighting! Best wishes.

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Re: Update- BadM and possible clue to fainting

Post  Cluelesskitty on Tue 03 Apr 2012, 7:35 pm

sconesail wrote:Hi All,

Thanks so much for the replies.

I got in touch with my dr's office to see if we could do the test during the day. Apparently, my insurance won't pay for it to be done during the day. Yes, the test was normal- at night, with CPAP- of course it was normal. But, since the test was "normal" they do not seem to think they should do one during the day- specifically when i faint.

I don't know what to do anymore. I am so tired of having to live with this, of having to scramble for ideas on my own. I just feel helpless right now- the head is bad, as is the fainting and I am so tired of this that I have no clue what to do. I just don't think that this is ok- I don't feel that fainting 20-30 times is ok. But I can't get anyone else to see it.

I am furious. I am tired. I am scared.

But I don't know what to do.

Pain free says,
sconesail

This is just NUTS!!!!!! Evil or Very Mad

I have an impression, Scone, you are dealing with idiots all around,
Who in their right mind orders an O2 test at nighttime, with CPAP on at that, for a person who faints during the daytime?!
Such thoughtless contradiction just blows my mind !!!

But I am not surprised by it in the least, this is what I have to deal every time I go to the dr,, too!
Everything is dictated by finances to being with, just like in your case Scone, and nothing is being further analyzed
or investigated if the basic tests are within normal range, even if this normal range is barely within norm -
as long as it is "I am fine".

So I know what you have to deal with Scone, how helpless and hopeless you must feel and I am so sorry for you.
The lack of sympathy and empathy you encounter on the way from medical professionals is staggering.

But your instincts are right, do not give up, if you can pay for this particular test, then pay, because it may hold the key
to at least some of your health issues. I hope your parents can be of assistance in this?
Do not give up. Do not.

Risa





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Re: Update- BadM and possible clue to fainting

Post  Cluelesskitty on Tue 03 Apr 2012, 7:36 pm

Sara79 wrote: I'd say you should start calling an ambulance every time you pass out, until they agree to run the correct tests. Actual useful advice, I don't have as much. Asking your folks if they know someone pulmonary who's really well recommended in your part of the world wouldn't hurt, and maybe the doc would know how to get permission for the correct tests pushed through the insurance company.

That's two great ideas!

Risa

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Re: Update- BadM and possible clue to fainting

Post  Porsche Fan on Fri 20 Apr 2012, 11:20 pm

any update? i know this is a real tough situation.

please by all means keep pressing.

take care,
pf
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