In a really rough patch right now- warning vent

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In a really rough patch right now- warning vent

Post  sconesail on Wed 04 Jan 2012, 1:57 pm

Hi All,

For the last two weeks, I have been going through a really horrible patch with both the migraines and the fainting. I am incredibly frustrated and exhausted from having to fight this all the time.

I was able to get an IV of Depakan last week- and that did help some. It knocked the pain down from the 9.5/10 level down to an 8. However, the pain is slowly creeping back up and has gotten much worse over the last few days.

I did go with some friends to see the fireworks at the river on New Year's Eve. We were well away from where they set the off and I did have earplugs. I am not sure if the fireworks caused it or not, because the headache didn't become horrendous until yesterday. (usually loud noises and lights trigger one immediately.) I will say this- the fireworks were beautiful and it was nice to ring in the new year that way. But I think I'll stay away from the fireworks for a while. This was the first time I have seen any fireworks in about 3 years.

The bottom line is the migraine is horrendous. I have done just about everything I can do for it right now. Ultram and benedryl help some, but I broke down and took some Klonopin and tylenol 3- both last night and this morning. This combo has taken the edge off. (It is clear to me that these meds are not causing the fainting. But, I don't want to have go down the "your fainting because of the medication" routine again. I also had to take some last week before the iV. Other than that and todays meds- I've only had to take it a few times since I came off of it.

I have also been fainting/falling a ton right now. Today, it seems like everytime I move, I end up on the floor. It is so frustrating. The only thing I can do, I am doing. I am just going to take it easy today- rest, take the meds to stay ahead of the pain, and try to distract myself in any way I can. I am working on knitting a scarf and that is a good distraction.

I am really tired of fighting this all the time. I just feel kind of helpless right now. I know it will get better, but I don't know when or how.

I have an appointment with my neuro next week to go over the EEG results and the reports from Cleveland. I hope we can find an answer, or failing that, find something that at least helps.

Thanks for letting me vent. I am not sure what I would without y'all

Pain free days,
sconesail

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Re: In a really rough patch right now- warning vent

Post  Migrainegirl on Wed 04 Jan 2012, 5:45 pm

So sorry you are having such an awful time. Do not be intimidated into not seeking help. Just because Cleavland Clinic had no answers and only bad suggestions. Remember they have never been through what you are going through and have no idea what it is like or what is causing it either apparently.

Maybe you should get another IV? Or try another doctor? Does anyone specialize in BAM? It seems quite specialized. So other doctors would not be able to test you for it or consider it properly.
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Re: In a really rough patch right now- warning vent

Post  milo on Wed 04 Jan 2012, 8:58 pm

Hang in there! Fingers crossed that you get some relief AND answers soon!
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Re: In a really rough patch right now- warning vent

Post  Anna's Mom on Wed 04 Jan 2012, 9:30 pm

Ugh, I hate hearing how bad it is for you, Sailing!

You know how much we all care, even though we have no answers!

Cheryl

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Re: In a really rough patch right now- warning vent

Post  Cluelesskitty on Wed 04 Jan 2012, 11:15 pm

Oh gosh, Scone, how terrible Sad

Have you thought of letting the Cleveland honchos know how serious you have it,
and simply start pestering them?

I feel they should finally take notice of how bad you got it, and perhaps the only way left to do it is by harassing them, sorry,
with endless phone calls and demands for appointment/ phone advice?

Since they didn't do anything significant yet, I don't see what else can you do to grab they attention, hmmm.

Meantime, I wish you for this bad streak to pass.

Risa

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Re: In a really rough patch right now- warning vent

Post  Porsche Fan on Thu 05 Jan 2012, 12:22 am

Kitty & Everyone:

Unless you are established, long term patient C does not care. Especially since they revealed no new information or ways to treat, then local treatment is of preference. Everyone needs to remember if they seek care at a mega hopsital--it is an opinion, not LAW, in terms of your medical care.

It's hard to understand how they work unless you are a patient of their system. If they don't undertand you, they will "defer" you to your local care. It is highly frustrating and irritating. There is no magical panacea, just hard work and a little bit of luck thrown in.

That's when in tough cases docs say medicine is an "art vs. a science".

You name the high-end center, progress will be made with a guy or girl that really thinks out of the box.


Last edited by Porsche Fan on Thu 05 Jan 2012, 6:28 pm; edited 1 time in total
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Re: In a really rough patch right now- warning vent

Post  Cluelesskitty on Thu 05 Jan 2012, 1:57 am

Oh, I see. I wasn't aware of that. So, I guess, is back to bother the locals, eh...

Risa

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Re: In a really rough patch right now- warning vent

Post  30yrsofheadache on Thu 05 Jan 2012, 8:25 am

Sailing, I am so sorry that you are feeling so frustrated. I really think that another new Dr. is in order, though. There must be some other rescue meds that will take your pain level down to a reasonable, functional level! It is not fair to keep offering a treatment that only gets you to an 8.

Even if it has worked in the past, its time for a change. I have found no treatments work forever. It is so incredibly stressful to your body to keep up with that level of pain. Not to mention the fainting. I think if a Dr. gives you the runaround about the meds, its time for a change right away.

You will find someone to help, but it will take persistance. Easier said than done, I know, when your head is killing you. I wish you had a "Cheryl" in your corner!
HUGS,
Cindy

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Re: In a really rough patch right now- warning vent

Post  sconesail on Sat 07 Jan 2012, 10:00 pm

Hi All,

Thanks so much for the words of support.

Unfortunately, as PF said, there doesn't seem to be any real follow-up or concensus about what to go in the current situation from the Cleveland Clinic.

Thurday goes down in the record book- I fell or fainted 50 times. I think it was so bad due to the fact that I fell asleep without my C-PAP mask and that makes a huge difference. I am slowly recovereing from that day. I usuallly bounce back quickly after a bad day, but not from this one. I wish I, or anyone, knew what to do here. (If I thought that it would havee helped anything, I would have gone to the ER, as it was, I simply stayed home- pushed the salt and fluids, and rested.) I am still very tired and out of it.

I had a good day today- only fainted or fell about 10 times.

I have an appointment with my neuro on Wednesday. I am definitely going to talk to him about possible other treatments or even doing a series of depakan treatments (my old neuro once had me do this and it did help.) I have also been reading a lot about the vagus nerve and am wondering if that plays a part in all of this. I am also going to see if he knows anyone else who could help me with this.

I am a little discouraged with the medical stuff/response right now. But, the only thing to do is to keep searching, keep looking, and not to give up.

Pain free days,
sconesail


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Re: In a really rough patch right now- warning vent

Post  Cluelesskitty on Tue 10 Jan 2012, 11:11 pm

Yes, you've been thru an ordeal Scone, I don't know if I could be as brave as you and let my painkilling meds as readily as you.
Nope, don't think so. I truly admire you.

Don't give up, search search search. Determined people like you do find solutions in the end.

Fight on!

Risa

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Re: In a really rough patch right now- warning vent

Post  sconesail on Wed 11 Jan 2012, 3:44 pm

Hi All,

First of all- and I mean this with all my heart- I would never be able to fight this without your continued support. I really wouldn't.

I saw my neuro's PA today.

The results of the EEG came back normal. This is good in that it rules out a seizure disorder, but somewhat annoying as it doesn't give a clear answer.
She did say she was going to send a note to the cardiologist because she was a little concerned that I was tachycardic- heart rate was 105 while sitting in a chair. I passed out about 5 minutes later and she witnessed that. Still, maybe they will listen to another dr.
We also went over the whole medication thing. Right now, I am taking Ultram for pain, Pristiq and Zanaflex for prevention, and some as needed meds. (Benedryl and Zofran and Phenergan injections for nausea.) I am taking Klonopin and Tylenol #3 for the really bad ones. I have found that I usually need it 2-3 days a week. Both she and the neuro are ok with that-and I am glad that I can have it when needed. I asked her if she thought it was the medication and she said "no. But the whole thing is baffling."

Also, if needed, I can call and schedule the Depakan IV. She wants to see how things go before we talk about a series of Depakan IVs. (That would involve either hospitalizing me or having the home health agency do it at home and we are not at that point yet.)

I think it went well. I am glad that I have the local neuro on board. I am, however, having trouble getting records from Cleveland. The one report I do have is not accurate. In fact as my father pointed out, in the H & P, under headaches, he wrote "No.' So, I will have to get that corrected.

Pain free days,
sconesail

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Re: In a really rough patch right now- warning vent

Post  Porsche Fan on Wed 11 Jan 2012, 9:16 pm

wow, scone.....

that should help the docs steer what direction to go....clearly an EP needs to get involved, and one that understands syncope.

"C" can be tough with records, and they can be rather inaccurate. Remember, you don't need to put a lot of stock into what that they say. It is an OPINION...that's it.

time for fresh opinions. keep on hunting!

good luck.
mgb
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Re: In a really rough patch right now- warning vent

Post  Migrainegirl on Wed 11 Jan 2012, 10:08 pm

Well it's good at least something is ruled out. Hang in there. It sounds like the new nuero is willing to work with you on finding a solution so that is something positive.
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Re: In a really rough patch right now- warning vent

Post  sconesail on Fri 13 Jan 2012, 2:33 pm

Hi All,

Thanks again for all the support.

PF I think you are right about finding a good EP who can deal with this. Around here, the cardiologists are great about dealing with heart attacks, stents, etc, but do not know what to do with this problem. The cardiologist I was seeing has pretty much given up on me. The last time I saw her, she said that it was conversion disorder and wanted to send me to a psychiatrist. (I see a psychologist regularly and he has treated conversion disorder but has stated on numerous occaisions that I do not have this problem. I see him mostly just to talk and to deal with the frustration and pain of migraines. This allows me to have an outlet to talk about migraine and takes the weight off friends and family.) She was somewhat helpful in the beginning, but as time went on, it became clear that she didn't know what to do about this.

I will probably see if there is an EP in this area who could help with the fainting. Cleveland also suggested that I see a local EP. So, I will look into it and see if there is someone who can help.

Personally, I think the fainting and migraines are linked somehow. This whole thing definitely involves both the nervous system and the heart. Several doctors have said that this is neurocardiogenic syncope, but others have told me that I don't "fit the profile." So I will look into it and see if there is anyone who can help.

I am so tired of the fainting. i also feel like I am caught in a large game of "pass the patient." But I going to keep at it until we find an answer and hope that we can controlthe fa inting better.

My head is really hurting now and I have fainted about 25 times today.

But the only thing to do right now is to rest and if the headache doesn't get better, I will ask the neuro for a Depakan IV. Right now, I am just going to rest, hang out with my roommate and take the meds.

Thanks again.

Pain free days,
sconesail

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Re: In a really rough patch right now- warning vent

Post  Porsche Fan on Sat 14 Jan 2012, 11:02 am

Scone,

I've given you the name of the one EP at Hopkins that does a research and is willing to treat syncope with pacing. "C" totally has contradicted themselves. Their EP in their Syncope Department is quite lacking. I don't how he could discard neuro-cardiogenic syncope being an EP himself, then tell you to go see another EP. If it's whom I think it is, I understand.

Sent you a PM.
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Re: In a really rough patch right now- warning vent

Post  30yrsofheadache on Sat 14 Jan 2012, 2:59 pm

I think you are finally getting somewhere. Dont give up, keep pushing at those Dr. until you get some answers that make sense. Hope you are feeling a little better by now.
Hugs,
Cindy

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Re: In a really rough patch right now- warning vent

Post  Cluelesskitty on Tue 17 Jan 2012, 1:55 am


I have an appointment with my neuro next week to go over the EEG results and the reports from Cleveland. I hope we can find an answer, or failing that, find something that at least helps.

I am looking forward to your report how it went, then,
and I really hope someone will finally figure out the reason of those faints.
I think when you say it can be due to migraines, I think you are onto something, hmmm.

Good luck with your neuro visit.

Risa


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Re: In a really rough patch right now- warning vent

Post  kimsmom on Mon 23 Jan 2012, 3:14 pm

Sailing,

I hope you soon get some kind of answer to your fainting and the migraines. You have suffered enough! I hate to hear how C is treating this. I am very glad PF is helping. Hopefully this doctor at Hopkins can help. All I can say is keep seaching. Soon someone somewhere can make a breakthrough into your fainting and headaches.

My thoughts are with you and I also agree that having an 8 in pain is not the level you should be having daily. I hope they get you something to relieve your pain level.

kimsmom
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Re: In a really rough patch right now- warning vent

Post  Cluelesskitty on Wed 25 Jan 2012, 6:48 pm

How are you doing nowadays, Sail?

Risa

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