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Post  sconesail on Sun 04 Sep 2011, 2:00 pm

Hi All,

I have had an extremely rough few days with both the fainting and the headache. I just don't know what to do anymore. So far today, I fainted at least 15 times and the headache is at a 9. T3, klonopin and benedryl help some. I am just so tired of all of this.

Due to the constant fainting, I am a little shaky today (I am not sure exactly why.) And when Mom saw the tremors- she immediately told me that it must be the zanaflex I take for sleep causing all of this. I have gotten off everything multiple times and it has no effect on the fainting issues. I am sure that she is just looking for a reason for the fainting. Sometimes, I wonder how much more I will have to go through to prove that the fainting is not caused by medication. I feel like I am stuck in this weird place where, no matter what I do, I constantly have to prove this to everyone. I take the zanafllex for migraine prevention and for sleep. I have tried most of the other sleep medications and this one works best.

Right now, I am exhausted from fainting, extremely frustrated with the whole situation and just want it to get better. Right now, I just want to knock myself out and take a nap, but I know that would not go over well. (usually, when I feel like this, I might take half a zanaflex and sleep, but I don't feel like being yelled at for doing this.)

I have an appointment at the Cleveland clinic in November, which should be good- there has got to be some sort of answer to this.

On a better front- A friend and I were able to find a great apartment this week and will move in sometime around the 15th. I think this will be a good thing.

I'd love any advice.

Pain free days,
sconesail


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Post  Migrainegirl on Sun 04 Sep 2011, 7:31 pm

SS!

It sounds like you are doing the right things. Moving in with your friend may help create a useful bit of distance from mom. I hate to say that, being a mom myself. I am sure she acts out of love and concern, but is probably too close to be objective. Your main goal is to hang in there until you can get to the Cleaveland Clinic. You need dedicated in patient treatment with a team medical approach to get to the bottom of this and find something that works.
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Post  milo on Sun 04 Sep 2011, 8:36 pm

I suspect your mom reacts out of frustration, love, concern and all the other reasons our loved ones make us so crazy about our med usage. The important thing to remember is that it's you that is going through this, and no one else can know exactly how you are feeling except you.

As long as you are not using your meds to "escape" then it should be ok. I don't mean to escape the pain, as obviously that is often why we need to take them. I mean to "escape" your reality.

I feel strongly that moving into your own place is going to be a good thing for you. It seems you have had to answer to your parents for a long time and that you are ready to not have to do this anymore.

I hope you wake feeling better in the morning. Stay strong friend.
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Post  Porsche Fan on Sun 04 Sep 2011, 10:31 pm

sconesail,

syncope clinic with dr. fouad-terazzi?

mgb
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Post  Cluelesskitty on Mon 05 Sep 2011, 3:30 pm

Due to the constant fainting, I am a little shaky today (I am not sure exactly why.) And when Mom saw the tremors- she immediately told me that it must be the zanaflex I take for sleep causing all of this. I have gotten off everything multiple times and it has no effect on the fainting issues. I am sure that she is just looking for a reason for the fainting. Sometimes, I wonder how much more I will have to go through to prove that the fainting is not caused by medication. I feel like I am stuck in this weird place where, no matter what I do, I constantly have to prove this to everyone. I take the zanafllex for migraine prevention and for sleep. I have tried most of the other sleep medications and this one works best.

S-Scone, first of all - welcome to the forum cheers
I am so happy to finally see you with us!


Sweetie. I can tell you are exhausted. Mentally and psychically. It's definitely high time to put your foot down.
You've proved it's not the medication to everybody long time ago.
You don't need to explain anything to anyone anymore, mom included, nor seek approval, when it comes to your person
and decision making - honest!

And if you think you need Zana - take it! nobody, but nobody should dictate what you should or not should take and when.
It is up to you only. Only YOU KNOW when and what do you need, period.

And congratulations on your move! this is always so exciting! :]
I hope it's just what you need, even if it may sound scary at first. I have read your posts for long enough to know that you have
smart head on your shoulders and you absolutely will manage on your own very well, no ifs or buts Smile

Go for it, kiddo!

Risa



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Post  sconesail on Mon 05 Sep 2011, 7:28 pm

Hi All,

Thanks so much for the support and replies- I am not sure what I would do without y'all!


Milo- I think you hit the nail on the head with Mom's reaction. I know that she loves me and that she wants this to stop- and I also realize that the fact that she is a doctor must make it harder. I know it must be terrible to be a doctor and not be able to "fix" your own child. I also think it is all to easy to blame things on medication rather than the problem at hand.
-
I was really angry last night- far more upset about the situation in general than I have been for a very long time. I know a great deal of it was due to Mom's reaction about the medication and the rest due to sheer unadulterated frustration and anger at everything. I ended up using my pillow for a punching bag for a while, tried to read, and finally took an extra 2mg of Zanaflex and an extra Sonata (I had some left from the seeing the sleep specialist in January). Mom tried to calm me down, but it didn't help much. So I prayed, took the medicine and was finally able to get some rest.

This morning, Dad told me that Mom would not be satisfied until I got off the zanaflex completely and proved it once again. He offered to keep the medication forr me, and told me if I really needed it on a bad night to go to him and he would give it to me. I am not taking it to "escape" reality or anything-just for sleep. I think I have been on it for about ten years and it does work well for me. I just hate this whole situation- the constant pain, the constant fainting, and proving something for the tenth ttime does not help.

The Sonata helps some, but not a great deal. I am definitely going to call and check with my sleep doctor about possible alternatives to sonata and to Zanaflex. (I know that I can't take ambien, but maybe there is something else I could try to make it through until I get to Cleveland Clinic.)

I know that moving out will be a very good thing. I will be rooming with a good friend who understands migraines. Also, it looks like we will be able to get in on or about the 14th of this month. I was able to spend most of the day with my future roommate going through the stuff that we have, and making a list of stuff we need. (Also, she is more than willing to drive me, when needed.) I think this will be a good thing. Certainly gaining more indepence will be a huge plus. The new place is also within walking distance of some good restaurants in a really neat part of town. It is also near a grocery store and my pharmacy.

MGB- I have an appointment with Dr. Jaegar in the Syncope Clinic on November 14. I will also see a neurologist while I am there.

Thanks so mch for all your help.

Pain free days,
sconesail




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Post  Porsche Fan on Mon 05 Sep 2011, 10:40 pm

Jaeger works in the syncope clinic. He is their EP that looks at data, like what the Reveal has. Take everything you have documenting your heart rhythm.

Fouad is the director of the clinic. She will want to do 3 tests including a tilt, blood volume analysis, and a heart-rate variabliity study. Biggest thing is to focus on rate-drop and asystole. With cardio-vagal syncope, rate drop is the problem--which causes a bp drop, which causes a faint or near-faint.

Is the neuro from their migraine clinic?
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Post  30yrsofheadache on Wed 07 Sep 2011, 4:31 am

Good luck with your move. I think it will be very good for you! I hope you get some help at your next Dr. appt.
Hugs,
Cindy

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Post  30yrsofheadache on Wed 07 Sep 2011, 4:31 am

Good luck with your move. I think it will be very good for you! I hope you get some help at your next Dr. appt.
Hugs,
Cindy

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Post  Cluelesskitty on Fri 16 Sep 2011, 3:29 pm

Hi Sconesail sweetheart, how are you doing?

Have you seen new drs already yet, and how is your move progressing? How's your head and general well-being?
Not bad, I hope?

Risa

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Post  sconesail on Sat 24 Sep 2011, 3:15 pm

Hi All,

Yes, I am completely moved in now. It is going very well so far. My roommate understands both the migraine and fainting situation and we are in a great part of town.

The post move migraine hit with a vengence late this weeek- and it is not letting up. I have been out of it most of the day today because the headache has been pretty bad and i am getting used to doing more stuff. So, I think I will just sort of chill today- read, watch something brainless- let the tylenol 3, klonopin and benedryl do their work. Unfortunately, the course of decadron I took earlier did not help as much as it should and I am desperately trying to hold off an IV until next month. But we will see how things go.

I hope to make it to church tomorrow and volunteering next week.

Also still have some decorating stuff to work on, but that is kind of fun.

It is great o be out of my parents house-even if they are only a few minutes away. (Though I must say that everybody appears to be happier now that I am a little more independent and out of the house again. ) I know that my parents love me and I am lucky to have great support from them, but I think that everyone is benefitting here. I get more independence, they aren't as worried about me. It is just nice to feel good about the living situation and to be independent again.

The trip to Cleveland is in mid-november.

Thanks so much for thinking of me. Not sure what I would do without everyone here and everyone on Ronda's.

Pain free days,
sconesail

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Post  Cluelesskitty on Sun 25 Sep 2011, 12:38 am

That's terrific that you regained your independence,
only I am sorry that the moving itself has cots you so much physically.

I suppose you are right wanting to take it easy from now on.
I do that, too, whenever I over exert myself. what else to do anyway, but to plant your tired butt on the sofa and do bupkies lol

What are you plans regarding decorating? Do you have anything specific in mind? - a flea market, Home Sense, Ikea??

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Risa

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Post  milo on Sun 25 Sep 2011, 5:48 pm

Whoo hooo yay!!!!! On your own again!!!!!! cheers
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