Small update in General Discussion Forum

RSS
Email

0 Points

Small update

Author	Comment
mistermaxime	Small update		Lead	[-]
Regular Visitor Posts: 232 03/10/08 12:09 AM	Remove this ad As some of you might know I have chronic daily headaches. Until the topamax took effect, main and side, the headaches had increased in severity from normally 4 to a 6 that escalates to an 8 by the evening. Topamax gave me severe side effects, and the dose was decreased to 25mg. The headaches now completely overshadow my visual symptoms. The effect topamax had on the headaches is hard to describe. It mostly decreased frequency by maybe 40-60% and the pain by 20-40%. That was a couple of days after increasing to 50mg, which is also when side effects became easily noticeable. I am under severe back pain because of the topamax now. Feels like a knife right at my waist. I cant stop moving my legs because it also affects them. My dad is going to call the doctor's office tomorrow. On my next visit I'm going to try getting a new headache preventer as well as a new stopper. Maybe he can prescribe more midrin, but it doesn't work well if i take it too often. I'll ask about antidepressants, although he didn't want to give me any last time after diagnosing me with depression. My dad is also supposed to try to get an earlier psychiatrist appointment. I feel like I'm totally falling apart. These damn headaches consume me. This is the only place where I can get some understanding from. I'm tired of being told of trying to stay positive and that every has problems and they just have to learn to deal with them. I wish I could just hammer a nail through their skull and ask them to stay positive. Its not only that, the nails keep getting bigger and more painful. I think I'm losing the only friends I have left, which is only two people. As nice as the people are here, I still feel "unwanted" which I tend to a lot nowadays. It's not like its unreasonable, all I do is complain. Well I'm off to another night of restless sleep.
Interact My Recent Posts	Reply Quote
ksomething		#1	[url]	[-]
Registered User Posts: 5010 03/10/08 1:43 PM	Midrin should not be talen too often, it can make rebound headaches. According to my opinion, you need both a stronger prophylactic migraine therapy (e.g., dosage increase of Topomax or change to another drug) AND an antidepressive therapy. One can give a modern antidepressive drug (with few side effects) or one can given the "traditional" tryzyclic antidepressants e.g. emitriptilyn, which also work as a migraine prophylactic (so that one has 2 targets for the treatment in your case with the same medication). It's sad that your depression seems to increase from week to week, without you having the opportunity to get professional help from a psychiatrist. A date for a psychiatric evaluation should be obtained as soon as possible.
Interact My Recent Posts	Reply Quote
IanKC		#2	[url]	[-]
Posts: 2955 03/10/08 2:40 PM Administrator	Ksomething brought up Tricyclic antidepressants.... my neurop-opthamologist prescribed Nortriptyline for me after the first few drugs failed (Depakote, etc). It worked pretty well in terms of making me happier, didn't help with my visual symptoms but did make me happier than anything else did. I had to stop taking it due to an increase in frequency of sleep paralysis... but for a while it helped. Anyway I guess my point is that Ksomething gives out good advice and it probably wouldn't hurt to mention his thoughts to whichever doctor you end up seeing. http://www.visualsnow.com \| Lots of information on Visual Snow http://www.iancasey.com \| My blog
Interact My Recent Posts	Reply Quote
janey		#3	[url]	[-]
Regular Visitor Posts: 1008 03/10/08 3:42 PM	Hi.....you sound so desperate, my thoughts are with you and I hope you gain some relief soon, I really do.
Interact My Recent Posts	Reply Quote
juliedeeinthesnow		#4	[url]	[-]
Regular Visitor Posts: 397 03/10/08 5:09 PM	I agree with ksomething. More than anyone else I've ever read on this site as yet, I really feel like you need a boost from antidepressants and it could make a difference for you if it's well chosen. Some tricyclics have been used for years for migraine proph.--maybe one could work for you, too. There's also some new depression medication that can help pain as well as depression--though that's usually for peripheral pain like in your arms or legs, but I feel like you need to consider these types of medications, given the headaches you are up against. Chronic pain, chronic headache is a very tough and serious state to be in. If an antidepressant does nothing more than help you cope day to day it would be more than worth it. You've done a good job waiting for the medical rule-outs, but really how long do you want to wait before being able to address that depression? A couple of antidepressants, like Prozac, can cause people to complain of headaches as a side effect, but many of the new ones don't. Some may actually help sleep, and I imagine you could use a really good night's sleep. Don't get discouraged--recent research has shown that often it might take 2 or 3 different tries to find the absolute best fit in a depression medicine, and it takes a little patience, but it's worth it. Some, like the tricyclics, require you to be careful and follow rules about other meds (or diet with one drug). Keep coping and keep us updated, OK?
Interact My Recent Posts	Reply Quote
shannon3fh		#5	[url]	[-]
Regular Visitor Posts: 449 03/10/08 6:51 PM	you have gotten some good advice. i really hope you find something that works for you. thinking about you.
Interact My Recent Posts	Reply Quote
jruddy		#6	[url]	[-]
Regular Visitor Posts: 413 03/10/08 7:29 PM	I agree - I'm on citalopram and it has been a huge help getting through this mess. I also had problems with my arms and legs moving when I started Topamax - what seemed to be a combination of myoclonic jerks and perhaps something close to RLS. Anxiety made these symptoms much worse too - keep that in mind - and I did have one episode before starting topamax. Citalopram helps with Anxiety as well as depression which is a good side effect. The problems with jerking have subsided, and I've been slowly increasing to 100mg from 50mg, 1/2 pill per week. I had to buy a pill cutter, but the side effects that I had starting and jumping to 25 haven't been anywhere near as bad this time. (Electric shocks, Myoclonic jerks, fasciculations etc..)
Interact My Recent Posts	Reply Quote
mistermaxime		#7	[url]	[-]
Regular Visitor Posts: 232 03/11/08 9:42 AM	The doctor is keeping me on Topamax. I told my dad to make an earlier appointment, but that's not going to happen. My dad is not going to listen to me anymore, we got in an argument over me staying on Topamax yesterday and it was close to getting physical. With 25mg of Topamax I have both the side-effects of the back pain (which feels like a steel rod in my back) and my regular headaches. I really do not want to keep taking this, but I will to prove to my dad and the neurologist that I know my body more than they do. I will have to wait until my psychiatrist appointment for any antidepressants, since the neurologist is so adamant about the Topamax treatment. Oh... my dad and the people at the doctor's actually told me I was reading too much and that I shouldn't talk to people like you guys because it makes me want to stop treatment from what people have told me about Topamax amongst other things about my medical condition. I called him because I read the prescription bottle where it said: Stop taking Topamax and call your doctor at once if you have any of these serious side effects: dry mouth, increased thirst, confusion, drowsiness, decreased sweating, increased body temperature, and hot, dry skin, nausea, vomiting, increased urination, muscle pain or weakness, fast heart rate, feeling light-headed, fainting, or seizure (convulsions); or severe pain in your side or lower back, painful or difficult urination. It pisses me off that they're treating me like some idiot. They want to keep me ignorant. Hmm... let me think, I'm going to be stuck with something for life... I might as well find out as much as possible, right? ....well I'm ... off... to .... school... now....
Interact My Recent Posts	Reply Quote
jruddy		#8	[url]	[-]
Regular Visitor Posts: 413 03/11/08 10:09 AM	One of the more common problems with Topamax is kidney stones - around 1.5%. These cause pain in the lower - side back - where the kidneys are. To counter this I've been instructed to drink 10 8oz glasses of water per day (or was that 8 10oz glasses, regardless it was 80oz of water..!) It seems you want things explained to you, and you want treatment that works. That seems normal to me. Just remember that no matter where you get information from people will weigh the information provided carefully based on the persons knowledge and experience. There are lots of people on Topamax, but few who have serious problems with it - you might be one of the few, or you might not. For most people, it is thought to be a good pill. This is where your Neurologist is coming from. There are a lot of nuts on the internet. There is a phenominon known as cyberchondria that doctors are having to deal with, a sort of hypochondria that is brought on by people using the internet to research their symptoms. A similar thing happened in Victorian times when literacy rates increased in England. So, my advice, if you're going to mention any comments from this forum, only mention those from ksomething, who is Doctor Klaus Podoll from Germany, and only mention those with humility. Remember, even in medicine, there is no one truth, only a whole lot of opinions... If your Neuro doesn't think the Topamax is causing the back pain, then ask him/her, WHAT is causing the back pain? Last Edited By: jruddy 03/11/08 10:18 AM. Edited 1 time.
Interact My Recent Posts	Reply Quote
jruddy		#9	[url]	[-]
Regular Visitor Posts: 413 03/11/08 10:16 AM	I'm not saying there are any nuts or hypochondriacs on this forum!!! It's just that mistermaxime's Neuro and Family doesn't know any of us from dirt and it is easy to assume we are all a bunch of bad influences on him!
Interact My Recent Posts	Reply Quote
IanKC		#10	[url]	[-]
Posts: 2955 03/11/08 2:28 PM Administrator	Remove this ad I don't think I'm stepping out on a limb when I say that with Topamax, the number of people that experience serious problems with the drug is definitely higher than with most drugs. I've listened to story after story on this board and others of people who have tried the drug on serious dosages (above 25mg, which I couldn't even handle), and more often than not the side effects outweigh the benefits. So I really can't in good conscience recommend anyone try that drug unless they've exhausted every other option. http://www.visualsnow.com \| Lots of information on Visual Snow http://www.iancasey.com \| My blog
Interact My Recent Posts	Reply Quote
mistermaxime		#11	[url]	[-]
Regular Visitor Posts: 232 03/11/08 4:14 PM	The back pain is directly in my spine. I've never had kidney stones so im not sure if they could be the cause. My eyes have been occasionally burning, and with the headaches I usually get eye pain. Since yesterday it feels like my eye will pop out since there's so much pressure on it. I'm sure that all of these side-effects add up as big warning signs, but I got to keep taking but because I have absolutely no alternatives until this is proven to fail. This is also the second day I feel nauseous around 4-6pm. There is a very awkward chemical taste in my mouth, but I have no clue if that has any relations.
Interact My Recent Posts	Reply Quote
SopuliSusie		#12	[url]	[-]
Posts: 1496 03/11/08 9:07 PM Administrator	Ian is spot on about Topamax being bad for many people. Even my pharmacist was surprised I was going on it because SO many people complain about it to him. KP is totally right about being careful about rebound headaches. When I was a teenager, I had a couple of years of rebound headaches. That was a very, very hard cycle to break and I'd start up with a migraine like clockwork every afternoon. Sad that making pain less can actually cause more pain in the long run. Bizarre that they aren't getting you any triptans, but who knows. I'm sorry your doctor is being a pain. It is too bad he just can't switch you to depakote instead. My doctor is having me take a lot of magnesium oxide. That plus CoQ10 and B2 are each supposed to lessen migraine frequency. Get some ginger for the nausea- it does help. I get the pickled ginger from the sushi section and have some ginger candies from the health food store. Those are things you can do that can help you without the doctor. One thing you'll want to think about is that every little thing that is "off" with your body is going to seem like so much more off than it really is. You can't help it- everything is heightened. Chronic pain and worrying about weird side effects does that. Find a few things that make the pain and suffering less, a few things that make you feel calm and happy, and then do those things more often. It seems stupid simple, but doing that consciously can really help. I'll also second everyone's pro-antidepressant stance. I'm on Lexapro, and dealing with all this stuff is easier since we got that dosage worked out. Less anxiety, fewer widespread symptoms. Good luck! I definitely know what constant migraines feel like. Need to cheer yourself up? Watch the Kitty Cat Dance!
Interact My Recent Posts	Reply Quote
mistermaxime		#13	[url]	[-]
Regular Visitor Posts: 232 03/11/08 11:59 PM	I was actually expecting this to work and was going to keep taking it until I almost passed out. Depakote had no effect on me. I can deal with the nause. It's now the combined headache, back and eye pain that are really getting to me. 5 weeks until the psychiatrist though... I really need it. I want to give my head a reason to hurt. I bet it'll take even longer for the topamax to work on the headaches now. There's more I want to put in here but there's so much on my mind and its so scattered by everything that I'm done.
Interact My Recent Posts	Reply Quote
mistermaxime		#14	[url]	[-]
Regular Visitor Posts: 232 03/12/08 10:14 AM	Great...now my dad thinks it's just hormones causing my headaches. He called me telling me his coworkers had daily headaches and they eventually became less regular and intense. "its just your hormones, it might take a couple of years but your system will become normal again" This is getting ridiculous. He never listens to me, ever.
Interact My Recent Posts	Reply Quote
jruddy		#15	[url]	[-]
Regular Visitor Posts: 413 03/12/08 10:17 AM	Just to offer a counter point to Ian's valid point, My GP has 7 patients on Topamax for migraines and a number on it for Epilepsy, none with serious side effects. The neuro I'm seeing, who is has a special interest in migraines, said he has dozens of patients on topamax and hasn't seen any serious side effects - but I really need to be wary of kidney stones. For what it's worth, when I was talking to the pharmicist about drug interactions she mentioned she is seeing a lot of migraine sufferers on topamax lately. Of course, I do work with one woman (When I'm working) who had severe mood swings on Topamax and had to stop. This seemed odd as it is supposed to be a mood stabiliser as well. But then it does seem to give me or at least worsen my myoclonic jerks etc... and it is an anti-seizure drug, so there you go... People who have problems with cars, televisions, drugs or any other consumer goods share information on the internet. This can present an altered view of the actual statistics on the product in question. I have no doubt that many people have problems with Topamax. I also have no doubt that many people have problems with Sulfa drugs - my wife is allergic - or Beta Blockers - they almost killed my father - or MSG as I and my mother have a sensitivity. 5 weeks to see a shrink is terrible - really unacceptible in my books. Most meds they prescribe take 3-5 weeks to kick in on top of that! I would suggest you ask if you can get on a cancellation list of you can. I don't know how to put this... if you have any 'dark thoughts' call your doctor immediately. If that doesn't get you into the psych immediately, nothing will. Try to stay positive and good luck!!! Jim
Interact My Recent Posts	Reply Quote
ksomething		#16	[url]	[-]
Registered User Posts: 5010 03/12/08 10:18 AM	Have you shown your father the webpage compiled from your posts at www.migraine-aura.org , maybe that makes impression? and turns his mind to allowing to send you to a psychiatrist for further therapy?
Interact My Recent Posts	Reply Quote
mistermaxime		#17	[url]	[-]
Regular Visitor Posts: 232 03/12/08 10:36 AM	I haven't shown it to him. There is no use. Nothing I tell him makes an impression. I do have a psychiatrist appt April 16. Its become so complicated now.
Interact My Recent Posts	Reply Quote
shannon3fh		#18	[url]	[-]
Regular Visitor Posts: 449 03/12/08 4:16 PM	hang in there and dont hold all of this in. keep talking we are here to listen! i know how u feel w/ the eye pain it really is so difficult to function w/ it.
Interact My Recent Posts	Reply Quote
juliedeeinthesnow		#19	[url]	[-]
Regular Visitor Posts: 397 03/12/08 4:34 PM	I think it makes a lot of sense that you and your father would have disagreements like this on such an important issue--you're taking your position because your living inside it and he is planting his feet on his position because of how important you are to him. Parents have this undercurrent of deep fear where their kids are concerned--threaten anything in their lives, but not their child--and here you are in pain with no clear answers. That's got to be hard for both of you. Your Dad's point of view could be really hard to fathom right now, but things may become clearer. The Topamax gets mixed reviews--time will tell. One thing though, sometimes a medication will cause side effects at first and then they fade away--they are transient. A lot of nervous system drugs behave that way. Ask the neurologist what percentage of the side effects tend to be transient in people. Also, they may be concerned that if they throw an antidepressant into the mix, it could confuse the response--I don't know. But I'd jump on the chance for an antidepressant as soon as it's offered, and I'd be proactive about asking for it. Your Dad's being cautious about us interacting with you, and I don't blame him. But this particular website is probably a little more put together and self-regulating than most, thanks to Ksomething and IanKC, as well as the experience of the people who interact here. Am I gonna place my credentials out here for your Dad? No, because when I write on this website I am writing as just another person who is afflicted with VS and understands and also gets support. That's an important boundary, and I feel that if others of us are doctors or researchers or psychologists or officers or consultants or any other profession, we're bringing our knowledge and best judgment to help each other. I feel like it's good company, and I'd just rather get information from here.
Interact My Recent Posts	Reply Quote
mistermaxime		#20	[url]	[-]
Regular Visitor Posts: 232 03/12/08 6:00 PM	Remove this ad This is seriously ridiculous though now. I have to wait until side effects wear off until increasing dosage, in the meantime I have to deal with the side effects and my headaches. Seriously WTF, I took 3 midrin today for a terrible headache, now its back and I have 2 pills left because 5 pills is all the pharmacy had. It makes me so mad that there are a dozen triptans which might be able to take effect before the Topamax side-effects wear off. I could be taking Topamax for weeks until my doctor decides the side-effects might not wear off and that's even if it can help with the headaches. Maybe I'm overreacting a little bit, but how long is this going to last?
Interact My Recent Posts	Reply Quote

<< Previous Topic Next Topic >>

Add Reply

Yuku free message boards

Small update

Small update