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Update- fainting, m, and dr's appts

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Post  sconesail Sun 29 Apr 2012, 4:37 pm

Hi All,

I though I would give you an update on the fainting, migraine, and recent drs appointments.

I saw the Sleep specialist about 10 days ago. He was actually pretty helpful. He looked at the whole O2 and heart rate sheets I brought. He said that there was definitelly something odd with the heart- as I seemed to be in tachycardic when I fainted. He said that he did not think the O2 stuff could be the problem because he doesn't hear or see any lung involvement and said that I would definitely have symptoms if this were the case. I did ask about cardiologists in the area and he threw out some names. I also asked if there was anything else he could do or that I should be doing from his perspective and he said, "No. Keep using the CPAP, see if you can get in with a cardiologist (preferably an EP) and go from there" He also said that a service dog would be helpful. It was a good appointment- and at least he was willing to listen and willing to help when he could. This may not seem like much- but it is huge for me due to the fact that I have been caught up in a game of "pass the patient" for a while.

The Migraine is really bad right now. I finally got the pain down to a bearable level with Ultram, T3, 2mg Klonopin and Periactin. I am kind of out of it right now, but it is better than the 9.8-"the window looks good" level it has been this weekend. I will definitely call the neuro's office and see about getting an IV of Depakan sometime this week.

The fainting is a little different- I had a pretty good week, but the past two days have been horrendous. As my roomate would say, "S, you are flirting with the record." The current record stands at 62. My roommate has Aspergers and is very good with numbers, so she keeps a running tally of the fainting. She is also good at telling people that everything is under control when I faint in a public place.

I am not quite sure where to go from here. Sometimes, it feels like this thing is one great big jigsaw puzzle and we are trying to put the pieces together, but can't. I don't know if it is because these symptoms are rare or if there are too many speciallists saying "my part of the puzzle is fine, ask the other dr for help." The big problem is that I am left putting the pieces together and trying to get the others to help. I also can't help thinking that it is possible that the flu I had before the fainting, attacked some nerves in the brain that control the heart.

The only thing that I can do is to keepp searching for an answer. Deal with the severe headaches, and try and live despite the fainting stuff. I will check out the EPs the sleep neuro suggested.

Anyway, thanks for letting me vent.
Any advice is welcome.

Pain free days
sconesail

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Post  Migrainegirl Sun 29 Apr 2012, 9:26 pm

SM, thanks for the update. I know it's frustrating to keep going through doctor roulette. Getting in to see a good cardiologist sounds like a great next step. See if you can do some research to find a really good one though. Maybe at a research hospital in your area. Most deal primarily with heart attacks and blocked arteries. You obviously have something much more complex. It would be frustrating to get another shoulder shrug, not because there isn't cardio involvement, but because you get a doctor who doesn't have the right knowledge. See what you can find out on line, or through referrals. Good luck!
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Post  Sara79 Mon 30 Apr 2012, 2:41 pm

SM- thanks for keeping us in the loop. I understand the whole, 'it's a good visit' feeling...he's hearing and trying to help, which is a wonderful nice feeling. I really hope they find the link to this whole migraine/fainting issue.

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Post  sconesail Thu 03 May 2012, 7:24 pm

Hi All,

thanks so much for the replies.

The headache has been horrendous this week. My neuro did send the order for the IV. Unfortunately, my nurse is out of town, so it will be next week before I can get the IV. (Both of the usual IV nurses are away at a conference. They do have part time nurses, but for some reason, Alan (my nurse) can always get the vein and we kind of have a routine. The IV center called and said that I could get it with one of the part time people or I could wait for my usual nurse. He said that he was in the same boat. So, I am going to wait to get in with my nurse.

In the meantime- ultram, klonopin, t3, and periactin are helping some. I am also trying to use some distractions- talking, reading, and brainless tv. My plan is to get through the weekend and go from there.

There has also been some family stuff going on that isn't helping the head.

Pain free days
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Post  30yrsofheadache Sun 06 May 2012, 5:38 am

So sorry you are feeling bad and have to wait for relief. I hope you are feeling a little better by now.
Hugs,
Cindy

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Post  sconesail Sun 06 May 2012, 6:38 pm

Hi All,

Thanks so much for the replies.

Unfortunately, this has been a really bad weekend for the migraines. I don't think the pain has dropped below a 9 for about a week now. The ultram, t3, benedryl, and klonopin help, but that is about all.

In addition, Today, I stubbed my little toe against the doorpost and it felt exactly like it did when I have broken it in the past. I went to pri-med, where they x-rayed it and the toe is not broken. However, dur to the fact that I fainted several times in thier office, they also did a sinus x-ray, which showed a minor infection. I am on antibiotics for that and lodine, an anti-inflamatory for the toe. It is possible that the sinus may be contributing.

I am just really frustrated and completely exhausted- emotionally and physically right now. (there has been some family stuff going on, and though, stress doesn;t usually get me- I think it is contributing to the current migraine.) I have also been fainting a good deal and that does make me tired.

All I can do is keep praying, keep hoping that tomorrow will be better, get some rest, talk to friends, read, and hope it subsides after the IV.

I'd love any ideas or suggestions

thanks
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Post  Porsche Fan Mon 07 May 2012, 10:54 pm

Scone,

Any luck with EP's? An anti-biotic should knock out a sinus infection pretty fast--doubt it's going to make a huge difference in facial pain but it will help to get rid of it for your sino-nasial passages.
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