update cleveland clinic visit

First topic message reminder :

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

Sailing Muffin, you have my utmost sympathy. I totally feel for you--being in this very difficult place. I'm sure my BP goes up every time I read this thread. Because Anna and I live this ourselves. We have gone across the country also. Have been to New York, North Carolina, Texas, and countless trips to Illinois and Wisconsin. We have "M" Clinic practically in our back yard, but it does NO GOOD to go there when Anna is on pain meds. They preach no pain meds and that their outpatient pain rehab program is the answer to everything.

I just want to put in a plug for "J" Clinic. I know you went there long ago, but they have new treatments since you were there last. We are going to J in three weeks and seeing your doctor there. I have every expectation they will be able to HELP Anna. I really and truly believe they think outside of the box for patients like you and Anna. And if their unique treatments get Anna off pain meds (my greatest hope), I will surely be singing their praises until the day that I die.

I also want to put in a plug for Dr. M:

http://www.ncheadaches.com/

Everyone, please look through his website and his blog. Both are very fascinating!

He is such a free thinker. I have a couple of internet friends who go to him (they live in that area). I know what he has done for them, and I have the highest respect for this doctor. How hard he has TRIED to help them. He will not give up.

It isn't probably a quick fix at his clinic for patients like you and Anna. He is limited in what he can do IV (certain IV's are what helps Anna the most--the types of IV's that J can do). But I just wanted to point out that in my mind, he is a true migraine expert who pours his whole heart into his practice. We have no one like him in our state. How I wish we did!

M Clinic and CC Clinic COULD do the same types of things (tests, procedures, meds), but they chose not to. It is that simple. They chose not to be progressive in any way, shape, or form. My humble opinion, of course!

Cheryl

Cheryl,

Dr M sounds terrific. I've never had anyone check what kind of headache I was having or treat me based in that. It's just a random roulette wheel of drugs to try. I wish we had more doctors like that. I need one that's not clear across the country.

MG

Hi All,

I can't thank you enough for your advice and support.

I started tapering off medications yesterday. I fainted 18 times ( and bumped my head on a door.) Today, I have been up for three hours and have already fainted 15 times

I am not going cold turkey on the meds. I went down to three tylenol 3 and 3 klonopin (I only took 2 klonopin though.) Today, I go down to 2 T3, and 3 klonopin, tomorrow 2 t3 and 2 klonopin, thursday- 1 t3 and 3 klonopin, friday 2 klonopin and saturday 1 klonopin. I am taking benedryl or periactin as needed for the withdrawal symptoms (I was prescribed this at a pain clinic I went to a few years ago.)

I am still very frustrated and frankly, a little angry, about this situation. I do not think this it is ok to tell a patient to stop pain medications or any meds like klonoopin without giving them a plan. (I am glad I have done this before and knew what to do.) I am also really frustrated because it feels like I am going in circles and no one is looking very hard at what is causing this. I am just tired of all of this.

Cheryl- thanks for mentioning the J clinic. I saw the head person there and he suggested the stimulator, which has been an absolute godsend for me. However, I am not sure that I want to do another headache program unless they have something really different or new to offer.


The neuro in NC also sounds good, but that is kind of far.

Right now, the fainting is the main problem. I am kind of wondering how much of the fainting is migraine or pain related st this point.

I am hanging in there and will keep you posted.

Pain free days,
sconesail

Your quick taper scares me. Are you sure you can't taper slower? Klonapin if this is the same as clonazepam, should be tapered over half the amount of time you have been on it, or if you have been on it for more then a year then at least six months to a year taper. Benzo withdrawals can be very serious if done too fast.

Please, please keep us up to date with your progress if you can.

I would go to that Dr Cheryl gave you link to before doing the tapering,
but seeing how you are determined to go thru with it- please heed my advice-

NO NO NONONONO NO! that's too fast! once a week is too fast already!
the way you go you are putting yourself thru heII and it's not safe at all.
Please make it at least a one pill less a week, not two?


Risa

Hi All,

Thanks so much for the information.

I will certainly change the tapering schedule for the klonopin. I am going to keep it at 2 1mg Klonopin for a week, then 1.5mgs of klonopin a day for a week. then 1 mg of klonopin a day for a week. Then.5mg daily for a week. I have gone off klonopin quickly in the past, but that is obviously not the way to do it.

I don't think going off the meds is helping the fainting. I fainted 28 times yesterday. I have been up for an hour and have already gone down six times. I am working on getting the ambulatory EEG.

though I know if may not do much good, I am going to let the drs in cleveland know how much I am fainting-because this is not ok. I will also let the drs here know what is going on. I just feel like someone should get a handle on this. I am going to look into the dr in NC and figure out where to go from here.

Pain free days,
sconesail

Good idea to keep them in the loop as well as your local doctor or primary care physician. They may be underestimating what they are doing to you. Given the significant level of fainting and potential dangers from that, I'm surprised they don't have you under closer supervision.

I'm surprised they don't have you under closer supervision.

Me, too!

And I just found out Klonopin is used to treat seizures, too so I wonder if this is what helped with fainting?
Since PF mentioned that sometimes seizures can manifest as fainting?

Risa

Hi All,

I am kind of surprised by the level of supervision myself and the casualness of thier reponses when I have called Cleveland Clinic. I am at my apartment with a wonderful roommate, and my parents know what is going on. It is just frustrating. Last night, I fainted and wrenched my left arm when I landed wrong. It isn't broken, just sore- so I am just using an ace bandage and ice.

I am still tapering off the medications, but it is not helping much. I slowed the klonopin taper way down. I am not changing anything today- still on 2 t3, 2 klonopin. It is just rough and my head is exploding. It also doesn't help that I keep catching myself with both arms and and that doesn't help the injured arm. (I will call the drs at cc to let them know about the injury. If it doesn't improve, I will get it checked out.

On a positive note, I finally got the ambulatory eeg ordered. The epileptologist faxed the order to my neuro who wrote the order. It is scheduled for Dec. 12.

Right now, all I can do is keep the log, get through this, and then we will figure out where to go from here.

Pain free days,
sconesail

Hi Sailing Muffin, I'm sorry things are so rough for you. You are a trooper, that is for sure.

"J" Clinic in does have new treatments. They have treatments not available at other major headache clinics. That is why we are going there soon. I am hoping they will hospitalize Anna for these treatments, but that will be up to the doctor we are seeing. I have been told he has a big heart for suffering HA patients.

I don't know if it is possible for you to do an extended stay, but a place like the HA clinic in NC would not be an easy or quick fix. The neuro there offers several treatment possibilities, but a person with a serious problem would probably need weeks of testing and treatment to get better. Would your parents ever consider doing something "big" for you--putting you up in an extended stay hotel and providing the means for you to go to clinic appointments via cab ride?

It is something I would consider for Anna and I, should all else fail!

Like I said, I wish we had great HA neuros (like at J and NC) here where we live. We have M Clinic, but they are nothing like J and NC. Not at all!

Cheryl

I'm really, really angry right now that you have been told to come off but that no one is supervising your taper. That is absolute BS!!!! It is not safe, not cool and not in your best interest by any means.

I've been thinking, have you ever video taped your fainting? At this point, with you going down so often, it wouldn't be too tough to get someone to capture the faints on tape for you. I think having that level of evidence would force a doctor to take action.

This is absolutely rediculous! Who is going to take responsibility when you hit your head and suffer an ABI? The doctors forcing you off meds should be held responsible for what happens to you when you follow their advice. You have already told them this would happen!

Gosh I am just so angry for you right now! So freakin ANGRY!!!!!!

I agree with Milo. The videotaping is a good idea.

rather frustrating....however dealing with certain docs out of certain institutions....

videotaping despite your credibility and another person such as a parent may add suspicison to the doc.

when i developed severe ataxia, my dad video-taped me just to have a johns hopkins doc try and say it was a psychogenic problem--since i was able to have the problem walking "while being taped."

what these doctors do no understand, is that there are significant malpractice issues with these types of activities, and it's not limited to 2 years statute.

however, one and one's healthcare team must evaluate another doc's opinion. if it's rubbish, then it must be treated as such.

scone,

the taper seems like a total fail. seek the advice of your own neuro--CC isn't going to help you. they are only interested if you play the game their way, and they could care less how you feel. it's quite obvious.

for anyone tuning in late as my opinions, i've gone through this stuff with these particular departments.

like all hospitals and docs, some are good, some are not so good.

however i have several great docs from there that are awesome and call me personally. neurology seems to have a common thread there as a problem child.

i'm glad you're getting the ambulatory EEG...that's important data and follow up from there. there's nothing more CC is going to do, so like cheryl says use your energy for other places.

what irritates me regarding the syncope issue, you were 75 miles from a electrophysiologist that understands syncope and vaso-vagal corallations. my doc. MD/PhD and not a DO.

scone, if cardiac needs review, there's one guy at Hopkins to go to. the vagal nerve is one tricky thing.

i'm on 2mg klonopin and it's titration is extremely difficult. i don't plan on going off of it anytime soon as it works for a few things. if anything, klonopin calms the cns, thus the vagal nerve. decreasing and stopping it will irritate it, which can lead to more faints.

i take it these are drop attacks, not full out and out syncopal events?

scone, i hope you got your reveal interrogated and took the data with you. if not, get it. anyways, it's about time for that to come out anyways. 2 year life is about all it has.

When Marc mentions a specific doc for a specific problem, we can all be assured that is an excellent recommendation. He knows. I'm sure he would be happy to share that doc's name via private message.

Just to say also...the NC doc is in Duke's greater neighborhood, and Duke is used to seeing very complex neuro/HA patients with CSF leaks...CSF leak patients who have all sort of complicated issues (POTS and such). So if NC doc would get stumped in a certain area, there is always Duke close by.

I hope you can find a doc to actually HELP you soon, Sailing Muffin.

Hi All,

Thank you so much for the advice and replies. I would not have survived the last few days without y'all.

Videotaping: Last spring, we got several episodes of the fainting/falling on tape. We tried using a Game camera- the kind that many hunters use to watch deer here, but it only clicked on with movement and it often clicked in too late. So, we set up some surveilance cameras in strategic points around the house (my room, the landing at the top of the stairs.) We got several episodes on tape. When I showed my PCP, who is really wonderful, the footage, he looked at me and said, "It is amazing that you haven't killed or seriously injured yourself." He doesn't know what to do about the fainting, but he is keeping an eye out for anything that might help. I showed it to the doctors at CC- but they don't seem to have a clue either.

I ended up seeing my PCP yesterday because I wrenched my elbow on Thursday night. He did an x-ray. Fortunately, I did not break anything. When he asked if I needed pain medication- I told him that I was tapering off the Tylenol #3 and did not want to "undo" any of the work right now. So he said, "well, I can give you Ultram, which isn't a narcotic and you can take it along with Mobic (anti-inflamatory.)" He was surprised to find that I had never had it before. I think he could also tell that I was in a great deal of pain due to the headache and suggested it might work for the headache too. It really has helped tremendously. At least, it helping with the head pain. I also showed him the log I have kept for the fainting stuff and he was shocked. He did tell me to slowly come off the klonopin. He also said he would continue to keep an eye out about stuff like this. I am just so glad that at least one of my doctors has common sense and is, at least, treating the symptoms.

I do not think that the Cleveland Clinic helped a great deal. The only new information I got was that "it is probably not cardiac." In addition, I felt like I was going around in circles.

Their headache person said he couldn't treat me until I had gooten off all meds and the fainting was under control. The vestiblar person said I needed to get the headaches under control before he can treat the fainting/falling stuff. The vestibular dr did start me on trileptal- an anti-convulsant, but that is about all he did. When I called regarding tapering off medication, his nurse was useless- she just told me to "get off the medications, and told me there was no back up plan. I was just in rebound." The cardiologist ran a bunch of tests, but I do not have the results yet- though he feels it isn't Neurocardiogenic syncope at all. The bottom line is that no one there is making any effort at all to treat the fainting. I don't care what the specialty is, there is no way that falling 30 times in a day should be considered "ok."

Jefferson- I will look into their program and see if they have anything new to offer. I may also check with the dr in NC.

Marc- if I had known that your dr wasn't far away from the clinic, I would have gotten his or her opinion as well. Marc- these do seem to be "drop attacks," but no one has ever diagnosed it. From what I have read on the subject and from your explanation, they look a lot like drop attacks.

Right now, I am still trying to process all of this.

I am off the Tylenol #3. I am still on klonopin and it does help some.

I am also scared right now. I have had about 15 drop attacks today. I am tired. And I am really stuck as to what to do next. How many times can I fall without injury? How do I treat this? Right now, I am kind of taking it one day at a time-just surviving. But I know there has to be answer somewhere and I hope I can find it soon.

I am also wondering if the fainting/falls are part of the migraine or if they could possibly be a weird response to pain- it is almost like things shut down for a second and then i come right back. I do know that I faint/fall a whole lot more when the headache is worse.

Thanks so much for the advice and help.

Pain free days,
sconesail

Sconesail....The nurses response via phone was absolutely 100% not ok. If she is a nurse, as in a registered nurse, she could lose her license for saying that to you. I know...this doesn't help you any...sorry...makes me so mad.

I'm glad your doc supports a slower taper. Are you sure you need to do this? It seems there is no one in charge of your care right now so make sure you really need to be going through this. It is very, very hard on your body and really shouldn't be done unless you absolutely need to. I'm so concerned, particularly because you have done this several times before, which means you have had to put your body through this stress before. I just want you to be doing it because you absolutely need to and not because some specialist thinks it's a good place to start.

Ditto to everything what Milo have said.
This is unbelievable and uncaring place... I am now wondering if professional as well!

So sorry you have to go thru all this, Sconesail!

Risa

Milo, it was a long time ago that someone shared this at Ronda's...her neuro said it would be better that she commit suicide than to take pain meds. She reported him, and he got in trouble for saying it. So appalling...

cheryl

Drop attacks are a form of epilepsy. Have you been diagnosed with epilepsy or seen someone who specializes in that? (I'm sure you have. You seem to have seen so many doctors.). But if that's what it is, then it seems to need to be treated separately from the migraines. It really doesn't look like the doctors at CC are treating this as carefully and responsibly as they should. They should be vey concerned about the big increase in fainting attacks as that is quite hazardous, even if they don't care how much pain you are in.

Hi All,

I have not been diagnosed with drop attacks. However, from what I have read and seen, they appear to be just that. It is an apt description of what happens.

I have gotten off the klonopin. I felt I needed to do this to make sure that it wasn't the medication. Both parents also really wanted me to do this. It has been hard, but helpful. At least, I know for sure that the medication doesn't contribute a great deal to the fainting. I also went off the medication because what we were doing for the headaches and fainting was not working well at all.

I found that the Ultram my PCP gave me has helped tremendously- much more than the Tylenol 3 had been helping. So I do have that and if, the headache gets really bad, I do have the other medications for emergencies. Both parents, my local neuro, and PCP agree with this.

I am having an ambulatory EEG on Monday. I am hoping that it will show something.

I did hear from the cardiologist- who asked me the fax number to my local cardiologist. I had them fax it both to the cardio and to the PCP, but got the feeling that I need to see a good EP.

I will see what the report says.

I am hoping that the EEG shows something.

The head is ok. It isn't great, but the headache is at a reasonable level.

Pain free days,
sconesail

So glad the Ultram is helping! Good luck with the EEG. Hopefully it will tell you something.

it is almost like things shut down for a second and then i come right back

This sounds like a petite mal seizure. Has anyone evaluated you for this?

some cardiac arrythymias cause "drop attacks." i have such an arrythymia.

i would have the same feeling, that i was just going to black out, then come back. it happened on me several times. my pacemaker corrected it.

Hi All,

Thanks again for all the support.

The ultram has really been a godsend. I have been able to get by with that, mobic and benedryl. It has been tough though. Ever since, I came off the Klonopin, I have noticed that my muscles are really tense and sore and that this may be feeding into the headache. I am using some relaxation techniques and stretching a good bit.

I am hoping and praying that the EEG shows something. If it is petit mal epilepsy- at least we know how to treat it. If it is cardiac, I may check with Marc's dr. If a pacemaker could help- I would have it put in immediately.

I go in on Monday morning to get setup for the EEG and then go back wednesday to get it off. It should be interesting.

Anyway, thanks for all of your help and support.

Please pray, send good thoughts, and hope that something shows up on this test. I just want to know what this is.

Pain free days,
sconesail

This is great that finally something was found that is helping you - tramal!
AS for Klonopin, well from my experience the withdrawal takes minimum two weeks before things start go any better.
So maybe you only begun the whole thing and haven't reached the peak of the withdrawal hill before the tension and all start
to pass. After two, three weeks, the body aches, the tension, even the swollen joints, knees etc should start to subside.

If not, then perhaps it means there is more to it than mere withdrawal..?

Whatever happens, I wish that you finally start feeling better, dear SSail! High time for that, eh!

Risa

I'm very happy to hear the new med is helping so much. Your pain is finally getting treated. May you get some answers in the weeks ahead, Sailing Muffin.

Cheryl