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KateA
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Dizzy spells
« on: Aug 15th, 2004, 4:39pm » |
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Has anyone had dizzy spells as a result of their headaches? I have been having them lately, where the whole world turns upside down on me, and I just fall over. It's quite a problem. I am no longer to drive at night, and during the day I am limited. I will be walking and suddenly I just start to fall over.
My doctor has prescribe papaverine for me to eradicate the dizzines. Anyone taken this? I haven't started this yet...mainly because from the research I have done it says that the side effects are DIZZINESS and HEADACHES! From what I can tell, the drug is mainly used for eliminating numbness in extremities, which I have from the 300mg of topomax I take daily. I am cautious about taking this new drug, and putting yet another drug in my body after trying so many things. When I brought this up to my doc, he got VERY upset, yelled at me, asked me if I thought it was reasonable that he would put me on a drug that would worsen the problem we were trying to correct, then hung up on me.
So I'm hoping someone out there can provide some input before I start taking this drug.
thoughts?
as always, so grateful. Hope everyone is having a pain free day.
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Samantha_Smith
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Re: Dizzy spells
« Reply #1 on: Aug 15th, 2004, 4:53pm » |
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He yelled at you and then hung up? Fire his ass and get a new doc. Samantha
Have you been diagnosed with clusters?
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pubgirl
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Sorry Kate
I don't know the drug you are on, but it does seem a bit strange to give a Ch sufferer a vasodilator.
Have they said why you are getting numbness in your limbs?
Dizziness and falling over also seem a bit worrying to me.
Are you seeing a neurologist who specialises in headaches? If not, it would seem like a good idea.
Wendy
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Redd
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Re: Dizzy spells
« Reply #3 on: Aug 15th, 2004, 5:13pm » |
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The tingling and numbness in the hands and feet is a well known side effect of Topomax. I didn't read anything about a vasodilator at all, Topomax is anti-seisure.
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IndianaJohn
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Re: Dizzy spells
« Reply #4 on: Aug 15th, 2004, 6:10pm » |
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Quote:| He yelled at you and then hung up? Fire his ass and get a new doc. Samantha |
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ditto, get a new doc ASAP
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Did my brains fall out or is this headache over?
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IndianaJohn
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Re: Dizzy spells
« Reply #5 on: Aug 15th, 2004, 6:11pm » |
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I sometimes get lightheaded after a HA, but nothing like you describe..
Best Wishes!
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Did my brains fall out or is this headache over?
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pubgirl
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Redd
Papaverine is a vaso-dilator, used to treat angina.
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Redd
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Re: Dizzy spells
« Reply #7 on: Aug 15th, 2004, 7:07pm » |
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Thanks....I'd never heard of that one so I was lost.
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pubgirl
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Redd
Still seems an odd thing to me to give to a Ch'er. We spend our lives constricting our blood vessels to abort the pain, seems strange to take something that dilates them as well.
But I'm no doctor, so what do I know 
I'm sure there must be someone else out there who does know this drug.
Wendy
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Lizzie2
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Re: Dizzy spells
« Reply #9 on: Aug 15th, 2004, 7:14pm » |
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Wendy,
Do you know how long that drug has been around? I can't find it anywhere in my nursing drug book. Just curious.
Sometimes there are some pretty strange contradictions, though it seems. Doesn't verapamil relax the blood vessels?
Carrie 
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pubgirl
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Found this below, but nearly all the entries I saw were for the drug being used for treatment of erectile dysfunction (sorry Kate, not much help there! !!)
W
Papaverine
An alkaloid found in opium but not closely related to the other opium alkaloids in its structure or pharmacological actions. It is a direct-acting smooth muscle relaxant used in the treatment of impotence and as a vasodilator, especially for cerebral vasodilation. The mechanism of its pharmacological actions is not clear, but it apparently can inhibit phosphodiesterases and it may have direct actions on calcium channels."
(Verapimil is a calcium channel blocker of course so maybe there is a connection there)
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| « Last Edit: Aug 15th, 2004, 7:24pm by pubgirl » |
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Redd
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Re: Dizzy spells
« Reply #11 on: Aug 15th, 2004, 7:23pm » |
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Only time I've had the dizzy spells like is mentioned here was when I was on the indo and prednisone at the same time. the Pred stopped the CH headaches for me temporarily but the indo added it's own headache and I couldn't stand up straight and bumped into the walls and door jams. Stopped the indo...no more dizzy, no more headache. Stopped the pred and the CH was back worse than before I started it.
Wondering of maybe the topomax may be having a bad side effect? Stole a good chunk of my IQ while I was on it....and 300mg is 3 times what I was taking.
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pubgirl
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Kate
All I can add is that this does seem quite an unusual drug to take, and if the Doctor is not prepared to even discuss it with you, they aren't much of a doctor.
I'd ask to be referred to a neuro or seek another opinion to be on the safe side.
Wendy
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UN_SOLVED
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Re: Dizzy spells
« Reply #13 on: Aug 15th, 2004, 10:10pm » |
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A vasodilator is doing just the opposite of the drugs that help me ( Imitrex & DHE ). I think i'd pass on the papaverine! I'd be afraid my headaches would get worse ! (if possible) 
Get a new doctor asap !!
Unsolved
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KateA
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Re: Dizzy spells
« Reply #14 on: Aug 16th, 2004, 12:50am » |
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The doc is a world renowned headache guy in CA and has written several well known books on headaches. He doesn't like to be questioned, I suppose, but I felt like I wanted some things cleared up before I started taking the drug. I won't name who he is, as he has actually been the only doc to help my cluster headaches thus far. I have a very complicated case and it's not easy to move on to someone else, I'm sure a lot of you can understand that.
Does anyone know of the potential side effects of this drug? Or has anyone taken it?
Thanks for your replies.
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Re: Dizzy spells
« Reply #15 on: Aug 16th, 2004, 1:47am » |
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Your doc shouldn't mind the questions. He should be willing to explain everything to you as far as your treatments and meds go in a way that you can understand what is going on.
If he's not willing to do this, he's NOT a good doctor ... doesn't matter how many books he's written or how well he is known.
You have the right to know and the right to ask questions !
My personal opinion !
Best wishes,
Unsolved
PS. This med says: "Dizziness may occur, especially when you get up from a lying or sitting position or climb stairs. Getting up slowly may help. If this problem continues or gets worse, check with your doctor."
Isn't dizziness the reason the med was prescribed for in the first place ??
I've never heard of another CH'er taking this med.
See http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202439.html for more details about this med.
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| « Last Edit: Aug 16th, 2004, 1:51am by UN_SOLVED » |
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Prense
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Re: Dizzy spells
« Reply #16 on: Aug 16th, 2004, 11:53am » |
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on Aug 16th, 2004, 12:50am, KateA wrote:| The doc is a world renowned headache guy in CA and has written several well known books on headaches. He doesn't like to be questioned, I suppose, but I felt like I wanted some things cleared up before I started taking the drug. I won't name who he is, as he has actually been the only doc to help my cluster headaches thus far. I have a very complicated case and it's not easy to move on to someone else, I'm sure a lot of you can understand that. |
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I wouldn't put up with it for a minute...
If Goadsby was like that to me, I'd fire him too.
Chris
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magman
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Re: Dizzy spells
« Reply #17 on: Aug 16th, 2004, 3:03pm » |
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Here is some basic info on Pepaverin....
http://www.rxlist.com/cgi/generic/papaverine_ids.htm
Definition on ischemia...
vertebrobasilar ischemia Insufficient blood flow to the base of the brain.This can cause malfunction of the cerebellum or brain stem, producing difficulties with balance, vertigo, double vision, altered vision, swallowing disorders, dysarthria, and other symptoms.
Hope this helps Kate.
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Pinkfloyd
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Re: Dizzy spells
« Reply #18 on: Aug 16th, 2004, 6:35pm » |
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on Aug 16th, 2004, 12:50am, KateA wrote:he has actually been the only doc to help my cluster headaches thus far.
Thanks for your replies. |
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well, I think this alone is as good a reason as anything for staying put at this point. There is that old "cutting off your nose..." consideration.
1. He prescribed this med for dizziness, not clusters. So all the research in the world may not show anyone else using it for clusters. It seems it was to counteract a side effect of topamax so who knows, maybe a search of groups that use topamax for other things, like seizures, might turn it up as often used by others to treat topamax induced dizziness.
Since topamax is fairly new for cluster treatment, treating the side effects that cluster people might experience is even newer and less understood.
It's possible the guy even knows of some recent reports of it working in this situation or clinical trial data that lead him to prescribe it. We certainly don't know which leaves questioning it's use in this situation a little presumptuous. Anyone else have any ideas besides lowering the topamax dose? Maybe lowering the dose will increase the attacks more than the addition of this drug would.
Personally, I just don't like heading down that old "prescribe a drug to counteract another drugs bad side effects" road. It's a never-ending story sometimes.
Seems to me the question here was his reaction to the questions about the prescription in the first place. I agree it wasn't a good (professional) way to treat a patient. OTOH, he may have just finished doing 40 hours of research himself trying to find something that would help his patient and was a little ticked off being questioned. Not an excuse, just a possibility.
Doctors hate to tell their patients about possible side effects from medications because no matter how low the odds of getting them, once people know, some of them become self-fulfilled. Just a human reaction. We're all "special" to begin with, having clusters, so even if 1 in a million have heart palpitations with a drug, once we know that, we take the pill and concentrate on our heart to make sure we aren't THAT special.
Maybe he just found out his wife was seeing jonny on the side? 
Maybe he's just very frustrated...(we do that to docs)...Kate said she was a complicated case. Clusters are ALL complicated and if she's especially complicated....we all have bad days with frustrating jobs.
Maybe he just got off the phone with BobP...
He may have that old god complex we run into. Sometimes we need to put up with it if they are the only one that has been able to help. That alone adds to the god complex.
Lots of reasons to be cranky....
I'd give him another chance if I was still depending on the medical community to help me. But then I can put up with some pretty nasty bedside mannerisms if I'm being helped.
PF
BTW, Goadsby wouldn't get pissed and treat a patient like that...remember, he's British. He probably wouldn't yell at me until after he hung up the phone.
If my doc treated me like that for questioning him, I'd just tell him, "look, I'm just trying to learn as much as I can so I can stop coming in to see you, and the sooner the better." Even if I had to call him back to tell him. 
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miapet
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Re: Dizzy spells
« Reply #19 on: Aug 16th, 2004, 6:59pm » |
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Okay, my 2 cents.
First, when I hear dizzy, I think, hmm, BP is low . . .and/or not drinking enough water? Of course, I always go for the easy stuff first *g*.
Second, I'm also confused as to the Verepamil discussion, although, if on it, and it's too high, since it's a BP drug (too), it may be at too high a dose.
Third, while I don't care for a doc that yells and hangs up, bedside manner is the least of my worries, if he is helping/helpful, then we can overlook the bedside manner. (I was sent to a doc with a warning: his bedside manner sucks, but he knows what he's talking about, so deal with it.)
Fourth, I agree with PF, I don't like the 'take another drug to counte the side-effects of this drug' as it does seem to turn into a never ending merry-go-round.
Hope you find relief, and an answer to your situation/problem.
*positive light and energy*
miapet
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pubgirl
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Chris
Not being pedantic, just for idle interest but Goadsby is actually an Aussie!
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Gator
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Re: Dizzy spells
« Reply #21 on: Aug 16th, 2004, 11:15pm » |
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As much as I'd be pissed off by the situation, if the guy was that good, I think I'd try to maintain. Not easy for me sometimes. Pain relief is to important to me right now to bite the hand that feeds me.
Quote:Posted by: pubgirl Posted on: Today at 18:12:43
Chris
Not being pedantic, just for idle interest but Goadsby is actually an Aussie!
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Brit, Aussie, what's the difference? 
Turts. Wendy. You d-d-DO know I was just k-k-kidding, right? heh heh heh Okay guys, put down the guns. Guys. GUYS!!!
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Superpain
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Re: Dizzy spells
« Reply #22 on: Aug 17th, 2004, 3:49pm » |
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Have you ever had migraines?
My wife suffers from migraine associated vertigo and it sounds very similar.
Tunnel vision, vertigo, light headedness, nausea, etc, without the actual headache.
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Chris
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KateA
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Re: Dizzy spells
« Reply #23 on: Aug 22nd, 2004, 7:01pm » |
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I still haven't taken the drug, and have thought hard about the idea of taking one drug to counter the effects of another drug. I don't like it. I feel at a point like I'm just polltuting my body.
At the same time, last weekend, I passed out, and cut my head open on the side of my car on the way down. So I need ot do something. My father is a pediatric hematologist of some note, and I've had him doing some research. He is obviously concerned, as is my whole family. (He is also how I got into see my doc, it's tough to get him to take you on, god bless my dad). My dad has a thought that some tomes not enough blood flow to the brain can cause black outs and dizzy spells, and that is why the doc prescribed this med to me.
Knowing that, I have been looking for other ways to increase blood flow and oxygen to my brain. I have been increasing the water, doing deep breathing, exercising more, and eating differently. It seems to be helping. It's taken a lot of research, but I don't feel right taking the meds, it's just a feeling I have.
The BP issue is a good one, and I need to have it taken, noone has taken it in some time.
So, at this point, if anyone has any thoughts on how to increase blood flow and oxygen to the brain, let me know.
Thanks so much for all the posts, thoughts and support. It's really helpful.
Kate
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ccbiggsoo7
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Re: Dizzy spells
« Reply #24 on: Aug 29th, 2004, 1:58am » |
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When I was taking verapamil alone, one of the major side effects was for me was getting dizzy and falling down. Especially if getting up from a seated position to fast.
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chris
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