update cleveland clinic visit

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update cleveland clinic visit

Post  sconesail on Wed 23 Nov 2011, 5:51 am

Hi All,

I went to the Cleveland last week to see what they thought about the fainting problems and the headaches. It was a very interesting and informative visit.

- I saw the cardiologist, who specialized in fainting. He did several tests- tilt table with transcranial doppler, hemodynamics, ECHO, and and a QSART- sweat test. However, it is beginning to llook like we aren't dealing with a cardiac problem after all- well it doesn't appear to be a straightforward case of POTS/Neurocardiogenic Syncope. On the bright side, it may mean that we can rule out the diagnosis of POTS.

-I also saw three different neurologists- a headache specialist, an epileptologist, and a specialist in headaches and vestibular problems. I also got about three different opinions.

The headache specialist told me that " He couldn't deal with the headaches until the fainting was controlled." He also informed me that I was one of the worst migraine patients he had seen in his life. He does not use any pain medication to treat migraines and reccommended that I get off all the pain medications for a year and see what happens.

The vestiblar (balance and dizzy) doctor was pretty helpfel. He was not sure that this was New Daily Persistent Headache. However, it is probably chronic migraine. He did reccomed some things though. I am going to try Trileptel to see if that will help. He also recemmended some physical therapy for the neck. The PT I saw was wonderful and gave me a few excercises I can do at home. These do seem to be helping some.

The Epilepsy specialist ordered an ambulatory EEG ( this will be done by a collegue who is at the University near here.) This will rule out seizure, She also mentioned the possibility of non-epileptic seizures. Both can be treated.

To sum it all up:
-Everyone agrees that something weird is going on and that is detrimental to quality of life.
-No one is sure where it is coming from- but most agree that it is a combination of everything- the headaches, and fainting.
-We have probably ruled out POTS- it is not coming from the heart.
It is probably coming from the head.
Right now, the plan is to see if the trileptal will help, start tapering down on the Klonopin and Tylenol 3, and see what happens. I will follow up with them in a few months.

It was quite a long week and now the post stress migraine is back with a vengence.

Still, it is much better than simply groping around in the dark as we have been doing.

Pain free days,
sconesail

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Re: update cleveland clinic visit

Post  milo on Wed 23 Nov 2011, 8:48 pm

Hang in there kiddo! I hope you get some clarity despite all the mixed opinions.

Did you fainting start after the migraines, before the migraines or at the same time as the migraines?
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Re: update cleveland clinic visit

Post  sconesail on Thu 24 Nov 2011, 6:36 am

Hi All,

Thanks for the replies.

The fainting started about three years ago after I had a reallly horrible flu. I have had chronic intractable migraine since age 17, now 31. The fainting started when I was 28. I am not sure how it relates to the headaches but I do know that the fainting gets worse when the headache gets worse. They do seem to feed into each other.

Right now, one of things that is kind scary for me is going off all pain medication for a long period of time. I have gone off pain medication many times over the last few years and it has never helped. There is also the fact that the fainting tends to get much worse when the headache gets worse. Still, I will give do it,, if it will help. (I hope I don't sound like an addict or anything.) But for some reason, going off the pain medicine and having little or nothing except Advil or aspirin for the pain kind of scares me. I know it shouldn't, but it does. I can do it and I will do it to see what happens- if it has an effect and the fainting decreases- great. If it increases- I think I am going to have to re-evaluate the situation.

Anyway, thanks for your help and support.

Pain free days,
sconesail

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Re: update cleveland clinic visit

Post  30yrsofheadache on Thu 24 Nov 2011, 5:54 pm

I am glad you got some help there. Is the Trilectil supposed to help the fainting?. At lest they ruled out the POTS, but I hope they continue to try to figure it out Since you have already tried going off the pain meds (and yours arent that strong) why do you feel you have to try it again? It is not your fault that no one has a better plan for you.

I remember other times you have given it a very decent trial without good results. I know it is hard to be firm with Dr.s, but sometimes you have to say no, I know better:). I hope that doesnt sound harsh. I wish you had someone advocating for you on these issues. I would be very frightened if my doctor took me off my pain meds also. I would have no quality of life at all. You are not an addict, just a person with a very diificult to treat painful condition. Anyway, I hope you were able to enjoy Thanksgiving.
Hugs,
Cindy

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Re: update cleveland clinic visit

Post  Cluelesskitty on Thu 24 Nov 2011, 9:58 pm

sconesail wrote:Hi All
The headache specialist told me that " He couldn't deal with the headaches until the fainting was controlled." He also informed me that I was one of the worst migraine patients he had seen in his life. He does not use any pain medication to treat migraines and reccommended that I get off all the pain medications for a year and see what happens.

Well, and how do you feel about that?
Personally, I wouldn't go to any doctor who wouldn't allow me to take any painkillers along with my triptans for head pain.
I just can imagine how would I go thru another and another and another episode if I couldn't at least take the edge off pain with
a pain relief.
I admire migraineurs who can do that - a lot - as I simply can not do that..



The vestiblar (balance and dizzy) doctor was pretty helpfel. He was not sure that this was New Daily Persistent Headache. However, it is probably chronic migraine. He did reccomed some things though. I am going to try Trileptel to see if that will help. He also recemmended some physical therapy for the neck. The PT I saw was wonderful and gave me a few excercises I can do at home. These do seem to be helping some.

The neck exercises help, it's true, whenever I do them I feel improvement in my neck and even shoulders stiffness, so I hope
they can do at least that much for you, too.
And I hope Trileptal will do the difference for you as well.


The Epilepsy specialist ordered an ambulatory EEG ( this will be done by a collegue who is at the University near here.) This will rule out seizure, She also mentioned the possibility of non-epileptic seizures. Both can be treated.

That is very interesting,
and I hope maybe these further tests will, too show why are you having these fainting spells?


To sum it all up:
-Everyone agrees that something weird is going on and that is detrimental to quality of life.
-No one is sure where it is coming from- but most agree that it is a combination of everything- the headaches, and fainting.
-We have probably ruled out POTS- it is not coming from the heart.
It is probably coming from the head.
Right now, the plan is to see if the trileptal will help, start tapering down on the Klonopin and Tylenol 3, and see what happens. I will follow up with them in a few months.

Well, certainly this is good they could agree at least 'something weird' is going on,
now if they only could figure out fast what it is.
Heavens know you had and have your share of misery with health problems that plague you, and could use a rest NOW ...


It was quite a long week and now the post stress migraine is back with a vengence.
So sorry about that - I hope you are feeling better today, after resting at home.
Are you staying at your own new place, or at your parents, btw?


Still, it is much better than simply groping around in the dark as we have been doing.

I agree!

Pain free days,
sconesail

Likewise!

Risa

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Re: update cleveland clinic visit

Post  sconesail on Fri 25 Nov 2011, 12:39 pm

Hi All,

Thanks again for your wonderful words of advice!

Pain medicine
I currently take Tylenol3 and Klonopin 1mg for migraine relief. The klonopin sort of relaxes me so the other meds can work. They do help the headache, or at least take the edge off the bad ones. That said, I do not think that going off pain meds for a year would be a good option for me. Believe me, the last thing that I want to do is go off the pain meds again- certainly not without an abortive plan in place for the bad ones. That said, I kind of feel like I have to do it for a couple of weeks- just to show that the medications are not contributing to the fainting. I am keeping a pretty detailed chart so that the doctors can see that the fainting gets worse when the headache gets worse.

I am so tired of people blaming the meds. I mentioned this to the headache specialis. I also tolde him that I had gotten off the medication several times during the past three years, to little of no avail. He basically said "Well, you have been on several poweful pain meds, gotten off them and then gone back to them. This obviously indicates that they don't work for your type of migraine." He also said that the pain meds increase inflamation. But, he did not tell me about anything else i could take during the bad ones. He also said that he couldn't do anything for me until the fainting was under control.

The other neurologist I saw, who specializes in vestibluar disorders and migraine actually had a slightly different take on it. He felt that the klonopin and tylenol 3 could be contributing to the fainting. He did suggest tapering off them and staying off them for a few weeks to see if the fainting improves. He also said- "If the fainting improves without the meds, but you are incapacitated from the headaches, then it is not a good solution." The main reason that the vestibular neuro suggested getting off the medicine is due to the fact that the klonopin and tylenol could be causing the blood pressure to drop. But, he did seem to understand that some sort of balance has to be found in order for me to have a good quality of life. I really liked him and he seemed to understand what is going on.

He suggested that I taper off the pain medication slowly and try to stay off it for about 4-6 weeks. This way, we will know if without a doubt if the medicine is the culprit. (Even though, he does not think it is. It will rule stuff out-once and for all.)

The neck excercises are helping some. And every little bit helps.

The ambulatory EEG is to rule out any possibily of seizures.

I am at my apartment with my roommate. (My family did thanksgiving on Wed. I went with my roommate to their family thanksgiving yesterday. My parents headed off to the beach house yesterday for a much needed trip without children. (This is the first time my mother has been able to go since she had back surgery this summer.)

I woke up with an absolutely horrendous migraine today. No, i haven't started tapering the pain medication yet, which is a good thing. I am just taking it easy today. reading, watching something amusing etc.

Pain fre days,
sconesail

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Re: update cleveland clinic visit

Post  Cluelesskitty on Fri 25 Nov 2011, 5:24 pm

I am so tired of people blaming the meds. I mentioned this to the headache specialis. I also tolde him that I had gotten off the medication several times during the past three years, to little of no avail. He basically said "Well, you have been on several poweful pain meds, gotten off them and then gone back to them. This obviously indicates that they don't work for your type of migraine." He also said that the pain meds increase inflamation. But, he did not tell me about anything else i could take during the bad ones. He also said that he couldn't do anything for me until the fainting was under control.

Exactly!
never mind that it is my major pet peeve with doctors when they just flatly and obnoxiously state
"this medication doesn't work for you (and how the heII does he REALLY know that?!) so you have to stop taking it right now"
BUT offers no alternative in its place Evil or Very Mad

no, this doctor takes it even further because not only is he not going to help you thru your pain, your fainting spells,
no - he takes two huge convenient steps back from you, folds his arms and says
"I won't do a single thing until YOU control the fainting and the migraines!"
WT... ???

Who is, excuse me, responsible for the diagnosis and the therapy here - you or the doctor, huh???

I am in awe of you Sconesail that after all you've suffered and suffer, you are still willing to suffer more with going off the meds
that obviously help you once again just to prove some another arrogant prick who think he know- it -all.
On the other hand, I do understand you are close to the wall, as we all are, in this search for relief,
and not many choices are offered to you, so.. what else CAN you do?

However, that other theory of the meds causing such a significant blood pressure drop and in turn this constant fainting
is curious. maybe there is some point to this. I was wondering though, wouldn't it be easier to increase the BP some other way,
if that is at all possible, to test this idea?

Risa

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Hanging in there with you

Post  KimbaK on Fri 25 Nov 2011, 8:21 pm

I know it royally stinks when a doctor tells you that you don't really need those meds because they are not helping your pain. I wish they could all experience at least one time at least half of what we go through. Then try and tell me no meds are the way to go.

Kim

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Re: update cleveland clinic visit

Post  Migrainegirl on Fri 25 Nov 2011, 9:28 pm

SM, do you keep a good journal of your headaches, fainting and medications? If you could show them hard data on the periods with and without pain meds, and the frequency of problems with and without, that should give them a much better understanding of the effectiveness (or ineffectiveness) of going off of pain meds. If they see that, and the data from the last 3 times you did it isn't good enough, they somehow think a 4th time will be different, that tells me they are grasping at straws. If they only only have general info about what you have done, this may be why they want to do it again.
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Re: update cleveland clinic visit

Post  Porsche Fan on Fri 25 Nov 2011, 11:44 pm

scone,

i'll go out on the limb, based on extensive experience at CCF in the migraine dept, their vestibular dept, and syncope dept:

they had a lot to say, and delivered nothing. if you were truly seizure based, Klonopin IS an anti-seizure medication. T3 I doubt contriubtes to your syncope or near-syncopal events.

i've had their full-vestibular testing done by the dept's director--normal, but what she didn't express is that I had heart rate drop, which causes syncope.

their syncope clinic was only helpful with identifying rate-drop. their EP is not very good, and the director is somewhat helpful but clearly not an expert in syncope.

i saw their migraine clinic director--that is anti-pain med, anti-klonopin, anti everything except psychiatric medications. and their position is that they won't treat you unless you stop all medications. i think that's an absurd position personally. and for you, living so far away for this advice is laughable.

i see 3 other physicians at CCF outside of these areas and we discuss Klonopin, and they are entirely supportive of it. remember, this organization does A LOT of research and does like to plot patient's health into their research.

if they really want to look for seizure activity, one very tricky seizure activity is micro-mesial seizure. and that's not found on ambulatory monitoring--you've been down that road how many times?

i'm not trying to be harsh--i've been down a similar road with CCF and have been left with more than mixed feelings. i can't count the times my dad and i have sat in the restaurant at the intercontinental hashing out what's happened at an appointment.

i'm going their on wednesday to see the pituitary tumor guy--this guy i like, and he understands HA.

did the HA neuro bring up the iMATCH program? with them it's either their way, or the high-way. no middle ground.
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Re: update cleveland clinic visit

Post  sconesail on Sat 26 Nov 2011, 8:21 am

Hi All,

Thanks so much for the advice and thoughts.

I did see the head of their headache program. He is completely against pain medications for migraine. He is also against Klonopin. He did tell me that "I am one of the worst migraine patients he has seen". He pointed out the fact that I have tried seventy migraine medications over fourteen yeears and said his record was 82. He did mention their IMATCH program, but said he couldn't even let me do the program until the fainting was under control. My father then asked him what they did that would be different from the other headache clinics I have been to in the past. He said, well, we would get her off pain meds, put her on IV DHE or other medications. But that he couldn't do any of that now because of the fainting. After we left his office my father expressed his opinion regarding this drs ideas- "I don't think the goal of headache clinics is to get you off medication-you always came home on more medication than you went in on. It may not have been narcotics but it was just as bad." I was not at all impressed with this guy.

The vestibular dr was very good and very thorough. He reccomended some physical therapy to the neck, and those do help some. They seem to help with the tension in my neck most. He also recommended getting off the pain medications. But did state that if there was no change in fainting and it just made the headache worse, then it isn't any kind of solution. He suggested trrying to taper them off and see what happens. That said, I will try and get in touch with him next week to see if there is anything that I can do for the headaches while I am off the medication. He also put on Trileptal, which is anticonvulsant, but he has used it in similar cases in the past. It seems to be helping.

Getting off the pain meds-
I know that I have been down this road many times over the last few years- when drs said thay were contributing to fainting. In manyways, I feel like I have to give it one last shot. I don't know what else to do. I don't want to call back and be told again that "it is just the medication." I am kind of stuck between a rock and hard place here. In addition, my parents want me to give it one last shot as well. So I guess I will try it for a few weeks. That said, I think I will call the vestibular dr in Cleveland and see if he has any ideas of what to do when the pain gets bad while I am off medications. I do not think it is ok to go off the meds without some plan of action for days when the headache gets bad.

As to the EEG- I haven't had an ambulatory EEG for this problem. I have had regular EEGs, but that was about two years ago and none of them captured and episode. Personally, I think they could be some sort of strange seizure as the only medications I have consistently responded to for fainting have been seizure medications- low dose phenobarbital, fiorinal, klonopin, and IV Dapakan. If it captures something, at least we will know one way or the other.

I haven't gone off the medication yet. I got hit with a hellish migraine on Friday. I also want a plan in plave for the bad ones before I do this again. None of the triptans work for me, neither does DHE. But I think having some sort of plan-is essential at this time. In addition, the pain tenfs to make fainting worse. I am keeping a detailed chart of what happens when I faint and the headache level right now. This way, I will have hard data to present and we can settle this matter once and for all.

I don't know what i would do without all of hyou.

Pain free days,
sailingm


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Re: update cleveland clinic visit

Post  Cluelesskitty on Sat 26 Nov 2011, 8:57 pm

Yes, it is extremely hard having to got off the medication with severe episodes like yours.
I know I wouldn't be able to do that :[
{{{ I don't know how you can do that }}}

Have you ever read a book "Chocolate and Vicodin", Sconesail?
http://chocolateandvicodin.com/


I have a suspicion the author, Jennette Fulda went to the very same clinic as yours.
She was said to get off all the pain medications as well, and pumped full of IV meds - if I remember correctly,
she also was supposed to administer the IV meds to herself at home, so a nurse came home to teach her how to do that.
Not to discourage you, but sadly, it didn't work for her. However, her symptoms were different that yours.
Very nice book, funny and insightful, btw.
Charlotte first recommended it, now I do, too.

Well good luck, sweetheart. I hope you can pull thru it all somehow, and find the reason for all this fainting in the first place.

Risa





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Re: update cleveland clinic visit

Post  Porsche Fan on Sun 27 Nov 2011, 7:35 pm

scone,

wish you the best of luck. the pain medication issue and stopping meds like klonopin takes serious consideration, and i think your dad had a point.

i think there are much better migraine facilities in the U.S. than CC.

they pushed imatch on me very hard and i did not go in. we even discussed it on rhonda's....

it's an outpatient program (for what they want to do, is pretty nuts for outpatient). the director didn't seem to really care about my heart stuff, nor my syncope, or some pretty complicated things that a couple other CCF docs are treating me for. his biggest thing was klonopin, which i with the support of my docs rejected stopping--as there is no substitution for what it treats for me.

that tells me they are doing research--they want benzos and pain meds out and are using the patient data retreived for more than just patient care.

i didn't do research on insurance coverage, but felt positive that it wouldn't be covered since it's outpatient. they say you can stay at a hotel or one of the houses near the clinic... wow--you'd have a huge bill. you pay for lodging, food, transportation.

i saw a few patients in the program while i was waiting for my appointment--totally not like me in any sense of my imagination. just reading their pamphlet, they treat migraine as more of a psychiatric problem than a phsyiologic.

hence the typical neurologist opinion to the patient--you have migarines because you are nuts!

well, more and more the neurologists that I've been to are the nutty ones, not me. Shocked

there is a type of seizure that can cause syncope and it won't be detected by ambulatory or typical seizure analysis--it's detected by drilling through your skull and placing electrodes on your brain. it's for micro-mesial seizures.

once neuro-interventionalist wanted me to have this done. since i always felt for me it was cardiac related, i said no way. it's not just my heart's electrical, but my CNS that's goofy. my vagal nerve is grossly over-active. if it gets overstimulated, it can trigger syncope. the whole goal is to keep oxygenated blood going to the brain.

just my opinion for disclaimer purposes.

wishing you well.
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Re: update cleveland clinic visit

Post  milo on Sun 27 Nov 2011, 8:11 pm

Such a confusing time for you. I'm confused just reading about it all. How in the world do you know which way to go??? I'm saddened that you are forced to go off all the meds again. I totally get it, as I'm facing the same type of situation. I absolutely hate not knowing what to do.

Hang in there.

The one sure thing that we all know is that we are TOUGH and SURVIVORS!!!!!
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Re: update cleveland clinic visit

Post  Porsche Fan on Sun 27 Nov 2011, 9:12 pm

echoing what milo said, remember scone that YOU are the patient and its your decision what meds to stay on and what to stop.

it makes no sense to stop a medicine because of one neurologist's opinion. he could care less if it helped you or not--he just wants you off in the hopes to get you into his program.

i know that it is irritating regarding syncope--they've done nothing to help you on that end. unless you spent a lot of time with one of their other docs in their syncope clinic running a boatload of tests you haven't mentioned i don't know how they ruled it in or out.

when someone alters your medication regimen, it must make sense for the entire treatment of your condition. and making something "conditional" in terms of medication compliance is not good medicine to treat the patient as a whole.
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Re: update cleveland clinic visit

Post  sconesail on Mon 28 Nov 2011, 7:08 am

Hi All,

PorscheFan- you are exactly right about CC view of chronic migraine. I did see the head of their headache program and hewan't helpful. Basically said, "get off the pain meds." He also told me that he wouldn't treat me through thier headache program because I faint too much and therefore, I am too much of a risk. I wasn't impressed and I don't feel like I would get anything at all out of it.

I did have several tests for fainting- a tilt table test, hemodynamic testing to check blood volume, a QSART (sweat test), an echo. I was supposed to have a heart variability test, but the IV blew and they couldn't get another one in that spot. The cardiologist is not at all sure this is coming from the heart. He suspects that it is coming from the brain.

I know you mentioned micro-mesial seizures and I suppose it is possible, I am on trileptal now and that does seem to be helping a bit- so that is good.

Pain meds:-
I haven't started tapering off them yet. All of the doctors I saw in Cleveland felt they could be contributing to the fainting. The only doctor who seemed to take everything into account on this point was the vestibular specialist. He basically recommended that I try it for a few weeks and, even if the fainting decreased, but the headaches were incapacitating- then going off them would not be a good solution. I will put a call into him today and see if there are any abortives I can take when the headaches get bad and I am off medication.
In addition to this, I am pretty sure my parents will be mad if I don't stop the pain meds to show that they aren't causing the fainting.

Right now, I feel like I am caught between a rock and a hard place. I am caught between so many opinions that I just don't know what the right chooice is anymore. I have never had much trouble getting off pain meds. But I am not at all sure I can do it alone, without another plan in place for the bad ones right now.

I am scared, frustrated, and tired. I just feel kind of helpless and lost right now. On one hand, I feel like I should go off the pain meds=just to settle it once and for all. On the other hand, I I feel like the pain should be treated. I do not think that the medications are causing the fainting. I don't know what is. But I do know I have gotten off the pain meds in the past due to fainting and it hasn't made any difference. I wish the doctors would stop blaming the meds and start really investigating what is going on here.

Right how, the headache is about a 9.5 with meds.
I will call the vestibular dr today and see if he has any ideas.
I may also check with my local neuro and with my pain dr to see if there are any alternatives to getting the pain under control or at least if there is something that wouldn't contribute as much to the fainting. (I doubt that there is, but right now, I don't think it can hurt to ask.)

In the meantime, the only thing I can do is to keep going.

Pain free ays,
sconesail




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Re: update cleveland clinic visit

Post  Porsche Fan on Mon 28 Nov 2011, 10:43 am

scone,

oh no, no heart rate variablility? out of all of their tests for you that could be the most valuable one--that test was extremely helpful.

even then with that data, they chose to do nothing.

klonopin has a titration period, typically .25 mg/week. you're not on a massive dose of klonopin to begin with. a lot of their docs tried to blame dilaudid on my syncope, but when I said I took it rarely ~maybe once a month, it blew that issue out of the water. the CNS is very tricky. it does control a lot of functions, including of course the heart. even though the heart may be technically normal, how the CNS dictates it may be the problem. if you can't fix the CNS then you have to treat the symptom.

i absolutely wish you good luck....get this seizure stuff ruled in or out totally.

edit...question?

scone, i know i've probably asked, has anyone done a full MRI of your spinal column...brain down to your sacrum? or is MR off limits due to the nerve stimulator. has anyone reviewed the nerve stimulator a cause of the problem? your syncope started after a flu, right?


Last edited by Porsche Fan on Mon 28 Nov 2011, 10:59 am; edited 1 time in total (Reason for editing : more stuff...)
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Re: update cleveland clinic visit

Post  sconesail on Mon 28 Nov 2011, 2:54 pm

Hi All,

I really don't know what to do anymore.

I called one of the neurologists I saw at the Cleveland Clinicc lastt week to ask if there was anything that I could take when the headaches got bad while I tapering off the medication and certainly when I stopped the medication. The nurse said "NO". I hadn't even finished the sentence. It was also my understanding that I am going off the medications to see if the fainting improves. However, she said it was to make sure that this wasn't rebound/medication overuse headache. (It isn't- according to my old neuro, I am way, way past rebound.)

I don't know what to do. I will try tapering off the meds and see what happens. I am on Tylenol #3 (up to four tablets as needed in a day.) I am on Klonopin 1mg, up to three tablets as needed for migraine. I usually have to take 2-3 tyloenol 3 a day and 1-2 klonopin a day. I am not as worried about tapering off the meds as I am scared of the pain- and the fact that there is no back-up plan. I am just supposed to do it without anything to ease the pain and without help or support from the drs who reccomended it in the first place.

I will try and start the taper tomorrow and just see how things go. If they are just as unbearable or if I faint more, then at least I will have tried. I don't know why everyone is so anxious to blame the meds. I guess it is easier than looking at the real problem

Pain free days,
sconesail

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Re: update cleveland clinic visit

Post  Cluelesskitty on Mon 28 Nov 2011, 3:51 pm

I know, you went to a big kahunas who did not offered that much.
I would feel lost, too.
How about trying another specialist/s who would at least try what Marc is suggesting before
you try tapering off your meds as a last resort yet, if that is possible?

Risa

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Re: update cleveland clinic visit

Post  Anna's Mom on Mon 28 Nov 2011, 9:28 pm

I've been reading the posts and feeling very perplexed. Having been to another well known medical center with similar beliefs (guess who?), it all brings back some REALLY bad memories. I could say some stuff, but I won't. I just don't have it in me anymore to deal with the thinking of places like CC.

Instead I'll share what a pretty well known headache neuro wrote on another forum about treating New Daily Persistent Headache patients:

"To say that Headache Specialists are opiate-phobic would be an understatement, but every article or commentary on every treatment ever conceived reports a significant failure rate. So what do they do when every fails? In the literature, they just seem to ignore the whole subject. In the real world, they use opiates and don't talk about it (sort of like don't ask/don't tell) or they send their patients to pain clinics who use opiates on virtually every body or the patients drift around the system on no effective treatment or they go back to their primary doctor. Phew...that was a long sentence, but true.

Most of my NDPH patients are on some pain management program, which means opiates. I really don't care what other headache doctors preach, because the dire warnings about opiates are primarily aimed at migraine patients and not the myriad of other painful conditions that can effect the head. I find this the most effective form of current treatment with more than a 50% reduction in pain in most patients and very little adverse events. Of course, I have some patients who don't tolerate these medications or want two pounds of morphine a day, but they are the exception.

The concern about using opiates is Medication Overuse Headaches...who cares about that when the patient is already about ready to jump off the Space Needle with head pain before he starts pain pills. This is a long boring topic that could go on for a few thousand more words."

It is late, and I am tired. But I did manage to share this with you.

I'm sorry for Sailing Muffin and the frustrations of traveling across the country to get really, so little help.

Cheryl


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Re: update cleveland clinic visit

Post  Migrainegirl on Mon 28 Nov 2011, 9:36 pm

Amen to that!
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Re: update cleveland clinic visit

Post  Porsche Fan on Mon 28 Nov 2011, 11:18 pm

scone,

biggest thing is to stick to one plan or another. skipping all over doesn't help.

3 things are key:

1. Control pain

2. Limit syncope or near syncope

3. Diagnose syncope and treat it

you've had a lot of input here and you need to visit and discuss the CC findings with your neurologist. i've had some bad opinions come out, and talking with my team, we've decided to heck with them, they are purely that....bad opinions.

however, that doesn't mean you can't glean some of the data into your treatment. last week i pulled 3 surgical/test reports from my docs (including the pacemaker placement) to prepare for a visit with a doc. clearly the pacemaker procedure lists the diagnosis as sick sinus syndrome which, blows one CC doc's opinon out of the water......

the issue for you is not to create doubt, but to create a plan. i've spent many, many hours at CC over the years. you do not often see smiling faces come out of those offices. more grumps and groins and looks of disappointment. this isn't true of all doctors there, however i think some clearly an entire overhaul.

the pain med issue is significant. neuros think it is ok to put someone on an anti-psychotic with massive side effects and risk vs. pain medication, which is relatively straight forward as long as it's not abused.

docs are worried their patients are getting it, and selling. some may, but that is absurd.
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Re: update cleveland clinic visit

Post  milo on Mon 28 Nov 2011, 11:39 pm

I am SOOOOOOO effin tired of specialists telling use what doesn't work when we are sitting right there telling them what works. Yes, obviously it's not curative.....but for many of us it gives us enough of a life to function and keeps us from killing ourselves. What is so freakin wrong with letting people in chronic pain experiance a bit of relief from it from time to time.

When I was finally given a script for daily tylenol 3's I actually managed to train for and complete a half marathon. I'd have never been able to do it without the meds....and was so unvbelievably happy to accomplish something like this despite daily migraines. Now the same meds help me survive my new, very high pressured job with pretty good success. I think I would have been with GREAT success if I hadn't caught some odd sickness.

Why we are forced to go off them so effing often to prove a point that was proven the first time makes my blood boil!!!!!!

Sorry....my vent was due. Smile
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Re: update cleveland clinic visit

Post  Porsche Fan on Tue 29 Nov 2011, 1:02 am

Milo,

Your vent is due. Due to some of my treatment, I've sought the advice of malpractice attys. Sometimes it is needed.

Very hard for the patient, and I will phrase it as "post traumatic patient disorder." which may sound like a play on words, but how it affects one psyche and abilty to cope is signigicant.

Even the hardest of the core of patients eventually wear down.

I will be crude, but it takes "balls" in this game. And as soon as the doc knows that you'll go toe to toe with them and their legal staff, it's a different ballgame alltogher.

I know it's different in our system, but sometimes you have to resort to some legal tactics to get the best care.
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Re: update cleveland clinic visit

Post  sconesail on Tue 29 Nov 2011, 6:23 am

Hi All,

Thanks for all of the advice and help. I honestly do not know what I would do without y'all.

3 things are key:

1. Control pain-

2. Limit syncope or near syncope

3. Diagnose syncope and treat it

Marc, you hit the nail on the head with that statement. Especially since nothing is really helping anything of those things. Well, the trileptal is helping the fainting. The klonoping helps a tiny bit. However we are no closer to diagnosing or treating the syncope than we were before.

I had a pretty long talk with my Mom last night. I was pretty upset because the Dr I spoke to at CC told me there was nothing we could do about the pain while tapering off pain meds. She, the nurse, also said it was rebound-it isn't.

I spoke to Mom about the whole annoying and horrible situation. (She agrees it is annoying and horrible and I don't think she is looking forward to it either.) She basically said- "Right now, there doesn't seem to be another choice besides going off medication. In addition, it isn't helping you all that much right now." She is right about that- the T3 barely touches the pain- T3, klonopin and benedryl make it bearable, but that is all. So, I wrote out a taper schedule and will start that today. I should be off everything by Sunday.

I just hate the fact that everyone focusses on the meds rather than the underlying cause of constant fainting. It is the first thing most of the specialists have said. I wish they could look past it and treat whatever is causing the fainting. But if I don't go off the meds, that is all that I will hear. I am keeping a detailed diary of what is going on now. if the fainting increases- as it usually does when the pain is this bad, we will know and have hard data so that maybe, just maybe someone will treeat the fainting and possibily help me with it. (Though I am finding it hard to hold on to any hope that they will be able to help the fainting. At least with migrain, we can control some symptoms.)

Pain free days,
sconesail

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