Update-Drs appt's this week- headache and fainting

Hi All,

I had two doctors appointments this week. One was with my regular PCP and the other with the cardiologist at the University. I got some good news, an interesting opinion, and am still have some questions.

My PCP suggested that we try Provigil to see if it will help the fainting. I am all for this. He said it has helped some of his patients with chronic fatigue symptoms. (The only problem is that the rx wound up in a stack of records I took to Birmingham with me. I think it got mixed up with some of the records that the cardio kept. I am waiting on a call back. If I don't find it, I did schedule another appointment with my PCP for a new script. I have been on a variety of C2 pain meds and have never lost a script before! But I think all will be taken care of. I can't start it until after I see the psychiatrist next week anyway. It is just a big hassle.) I am very glad that he is willing to try it. The cardiologist also felt it was a good idea.

I had an appointment with a new Cardiologist at the University Hospital about 90 miles from here yesterday. He was very good and helpful. He said that I had seen pretty much everyone there is to see about this, but he did say he liked a challenge. He also said that it was some form of dysautonomia, but no one really understands why it is happening or what to do about it. He explained that many drs who see these cases see patients who are fainting and they try the run of medications, can't find anything structurally wrong that they can fix and then get frustrated because they can't fix it. If nothing else, he told the truth- that is exactly what happened with Cleveland, and many of the other drs I have seen.

In the end, he asked what I felt he could do that the others couldn't. I said that I needed a local cardiologist and that I needed someone to take the loop recorder out and simply be there to bounce ideas off. He said he would be happy to do all of those things. He is probably the first dr I have seen for this condition who looked more at me than the chart. He felt the service dog was a good idea and he seemed more focussed on how to live with this than with finding the cause. He is more conservative than others. But in many ways, I feel a lot more comfortable with him than I have with anyone else treating the fainting. This doens't mean that I am giving up. I still want answers. I still want to stop fainting, but I am also at that point where I think I have to give this a shot while continuing to look for answers and treatments. I am glad we are on the same page though. In some ways, this is kind of the same point I reached with migraines- there came a time where we had to manage the sympptoms rather than the cause. But we kept looking and found the stimulator. Maybe something will show up and will help like that.

I am also seeing a psychiatrist on Tuesday to completely rule out any type of conversion disorder or anything. My psychologist, who I have seen for about the past seven years and who has worked with patients who have conversion disorder, says this is not it. I agree. But we are ruling out everything possible.

The head is pretty bad right now. I did have to take an extra klonopin, along with some benedrul and T3. I am trying to rest and it is helping some. The plan for the weekend is to just chill.

Pain free days,
sconesail

Scone,

That is positive news. I have been awaiting your post. It sounds like the cardiologist is receptive. I will frankly say I'm not sure about the Provigil...I'm not a doc. I have some views about he cardio.

Thanks,
PF.

Hi, Scone. I think the Provigil might help you. Zoe has been taking a stimulant med with her Elavil for fatigue. She did not get great results with Elavil alone, but is doing much better on the combo. She feels her fatigue makes her migraines much worse.

I think she goes for periods of time and doesnt keep up with the Elavil and they slowly get worse. But if she doesnt take the Vivance, she gets worse a lot faster. I dont think she would hsave made it through her first year of college without it. I hope you get the script straightened out and it works for you.
Hugs,
Cindy

That's very encouraging! Finally, somebody is taking an interesting in what YOU have to say, offer,
what you have experienced throughout the years.
Your input is being taken under consideration, simply saying, and I like that!

I hope with this new Dr, you guys will find out what causes the fainting. and soon, I hope!

Good luck Scone!

Risa

Hi All,

I am glad that most of my drs agree on one thing- that I should be treated and find a way to live with this while we are looking for answers.

I saw a psychiatrist on Tuesday to rule out conversion or somataform. He was very nice and helpful. He did say that "with anything in the brain, there is a tiny bit of conversion, but that is obviously not the problem with you." This made me feel a lot better. At least, this way I have something that pretty much rules out conversion, so other docs don't go down that road. He also recommended provigil. In some ways, it is hard to believe that three of my doctors agree on something.

I picked the Provigil yesterday, but will probably wait until my parents are back in town to try it. I know this may seem odd as my roommate is here, but if anything does go wrong or I have a bad reaction or something, they will be around. Mom also treated children with ADHD and learning disabilities, so she understands stimulants. Also, in the past, they have made me mean,.

The headache is still horrendous-the meds are taking the edge off, but that is it- the T3, klonopin, and ultram help some. The fact that i fainted 45 times yesterday is not helping. I don't know what to do. The other option is to go ahead and do a course of steroids. I am just not sure and am frustrated. I know things will get better, but this is really annoying.
Any ideas would be welcome.

Pain free days,
sconesail

wow, that's an important step, a psychiatrist telling once and for all it's not psychosomatic!

I hope now you will be taken more seriously and the cause of your fainting better investigated.
You go, girl! see, you can kick azz!



Risa

Hi All,

Well, I took the provigil (stimulant) yesterday and it did not work well. Well, for about two hours I felt a little better- I wasn't as tired and was just dealing with normal headache stuff. For those two hours, I was really hoping that we finally had something that helped.

However, after two hours- I turned into an emotional basketcase. I cried and cried, just felt awful, and wanted to jump out a window. I called my Mom, and told her what was going on and that I "just needed to hear her voice." (I have only gone that crazy once before due to a medication problem.) I talk to my parents frequently, but rarely like that. ) They were on thier way back from the beach at the time. The only thing to do was to wait until it got out of my system. It eventually did, but the day was a roller-coaster fo emotion. I'd rather faint and be me that not faint and be a basketcase. I know that on my drs wants to give it more time, but I just don't think I can handle it. I can ride out side effects pretty well and have done so with alll the migraine and fainting stuff, but I just don't think this one works for me.

Maybe there are some other things to try. At least, we have another thing to cross of the list.

I'm ok today- well, except for the usual headache and fainting, but otherwise fine.

Any ideas welcome.

Pain free days,
sconesail

Scone, I am sorry that you reacted so badly to the new med! I guess you really cant tell until you try one sometimes. I have had severe reactions to so many drugs, I have lost count. I had a reaction similar to yours with Compazine. I will never take that again. But, I am able to take Phenergan (sp?) almost daily. They are supposed to have similar side effects.. I do hope you find a good treatment for the fainting and migraine soon.
Hugs,
Cindy

I'm sorry you had this reaction. It sucks. Maybe a smaller dose to start with? I know it sounds stupid, but some meds, less is more effective. Hang in there!

gadzooks

Scone, have you called your doctor about this bad reaction yet?
I am not sure if this is such a great idea to continue with it if you are all alone.

Risa

Scone

I think yesterday must have been a "bad" day for a lot of people. I was in migraine hell yesterday as well and was so bummed. I know medications can have side effects worse than the problem itself.

If the doctor thinks a stimulate will help keep you from fainting, why not drink coffee? Probably a lame question, I know.

I get really "draggy" around 10:30am and around 2:00pm and Southern Pecan coffee with a little cream and sugar, well it just helps keep my boat afloat

I have problems with being light headed and nearly passed out at Wal-Mart 2 days ago. It's my blood pressure, really low. Normal for me is 90/56 and the migraine meds drive it lower at times.

Is your B/P low also?

Hope you are having a better day today!
Trinity

Hi All,

Thanks for the replies.

I feel much better now. The stimulant just didn't seem to help as much. It is disappointing, but the whole thing is trial and error- just like it is with the migraines.

Yes, my bp is low. I do drink coffee or diet coke in the morning and it helps.

Not sure where to go from here.

Pain free days,
sconesail

Scone,

Relay the info to the cardiologist as he was the prescribing doc. Also, get this info to your neuro as well and keep monitoring your bp.

Good luck my friend.

PF

Hi All,

First of all- thanks so much for the replies and support. I really do not know what I would do without y'all.

I spoke to my doctor and we stopped the Provigil. He suggested a lower dose, but I just can't go through that right now. It scares me too much. (long story short= the psychiatrist is the prescribing dr for the provigil.) I did let the neuro know and I have a call in to the cardiologist.)
I
The head is pretty bad today. I am not sure what to do right now as very few things seem to be helping. The T3, ultram, and klonopin are kind of helping. I did take a course of steroids this week-which seemed to help some with both the fainting and the head. I may ask about another IV of Depakan, however the IVs haven't been working as well lately- so it may be time to take a break from them again.

I have been fainting a lot this week. I know that I broke my previous record of 64 on Wednesday, but was fainting so much that I stopped counting. I was exhausted from it that I just couldn't do much of anything on Thursday. This is also frustrating as being tired or doing to much is a huge Migraine trigger for me. I don't know what the connection between the fainting and migraine is, but I do know there is one and they seem to feed of each other.

I had a good yesterday and was able to do some things and get out the house and such. It is just frustrationg.

Pain free days,
sconesail

Something just came to me, something I saw on TV once, long time ago - a guy was practically dying as his heart stopped
sometimes after he ate his food -
doctors were majorly baffled as they didn't make the connection, and thought it was his heart.
Finally, somebody noticed it was happening mostly when the guy had his meals, and they determined it had something to do,
if I remember correctly, with a vagus nerve.

What if you, too, keep fainting because of something like that???

Risa

Cluelesskitty wrote:Something just came to me, something I saw on TV once, long time ago - a guy was practically dying as his heart stopped
sometimes after he ate his food -
doctors were majorly baffled as they didn't make the connection, and thought it was his heart.
Finally, somebody noticed it was happening mostly when the guy had his meals, and they determined it had something to do,
if I remember correctly, with a vagus nerve.

What if you, too, keep fainting because of something like that???



Risa

Risa:

Good catch on the vagus nerve sometimes called the cranial nerve X. Here's related info on it that might apply to sconesail.

When the vagus nerve is stimulated, the response is often a reduction in heart-rate or breathing. In some cases, excessive stimulation can cause someone to have what is known as a vaso-vagal response, appearing to fall into a faint or coma because his or her heart rate and blood pressure drop so much.

It is the longest cranial nerve and branches out in a lot of different places in the body, hence it can be over stimulated by different things.

Trinity

kitty,

that's all part of a dysfunction of the vagus nerve. it's an extremely large nerve that runs next to the throat, esophagus, brain, stomach, (GI). if it misfires, it can cause a person to faint.

part of the reason for my pacemaker is vagal dysfuction. i have several problems that all tie back into why a pacemaker makes sense for me.

vagal responses typically are not rapid onset (however they need a trigger) and do not have rapid recovery times.

scone...keep working. if the cardio hasn't prescribed the provigil, i doubt he'd want you on it given tachycardia. i thought the cardio was the one who prescribed it? it was someone else?

PF.

Hi All,

It was actually the PCP who suggested it and wrote it. The cardiologist felt it was worth a shot, as did the psychiatrist. We all knew it was a shot in the dark. Unfortunately, it did not work. I need to call the cardio and see if there are any other ideas.

I knwo the vagal nerve is involved in the fainting- it is called vasovagal syncope. It comes on quick and I get better quick.

I will keep you posted.

Painfree days,
sconesail