Options...

Hey guys. I am seeing a specialist at the end of month (first time in about 4 years), but I am just curious and looking for some experiences opinions to sort of 'arm' myself with some knowledge beforehand.

Over the last year the state of my migraines has changed. The frequency hasn't changed, but the duration and severity definitely has. I had 6 trips to the ER over the last year vs maybe one a year previously. I will not go to the ER unless it's a multiple day migraine with a lot of vomiting where I can't rehydrate myself. And unfortunately, those seem to get getting more frequent. That's not say to say I don't get headaches almost that severe, because I get one of those at least once a month. I get 2-3 a month that can be treated fairly quickly with medication (Maxalt or Frova), and maybe 2-3 a month I can stop with just pain killers.

I read a lot of posts about Topomax etc. on here. Is it generally prescribed to people in situations like mine, or is it generally used for people experiencing headaches more frequently? What are some common treatments for people in my situation?

Anyway, I don't even really know exactly what I am looking for. While I want help, the thought of going to the Dr and getting prescribed heavy duty medications that I don't know much about has me a little scared. I had a horrible horrible experience with Amitriptyline after seeing the last specialist about 4 years ago. I just want to be familiar with options he may bring up.

I am seeing a Dr Gordon at the Mt Sanai Hospital in Toronto (Wasser Pain Management Centre). I am not sure if anyone here is familiar with him.

Hi there! The decision to start a preventative med can be tough. Typically they are started when you have headaches/migraines more than a couple days a week, they are untreatable, etc. Sounds like you could benefit from trying one. Yes, Topamax is an example. There are very few meds FDA approved for treating migraine...most are off label. Even those approved for migraine weren't created for migraine (like a Triptan is for a migraine abortive), but they are anti seizure, anti depressant, beta blocker, etc.

I hope your appointment goes well. I would fathom a guess that they will both try you on a preventative and try to get a second line treatment (rescue med) for your migraines which don't respond to a Triptan, to try to avoid the ER. Sometimes this is a narcotic, ergot, muscle relaxer, injectable, etc. The preventatives can be a lot of hit & miss and take patience as many take months to properly trial. Yes some do have some potential for severe side effects. Amitriptyline is one of the milder ones unfortunately (most often only causes sedation). I'd express this concern to the doctor (that you are wary to start on anything so if you try anything you don't want the "big gun" meds like Topamax, which are more likely to help but also more likely to have side effects). Everyone is different so I hope you don't let one bad med experience sway you against trying them again.

They may want to try you on something even more benign like a beta blocker (most common side effect is a drop in blood pressure when standing). Hopefully they also emphasize keeping a migraine log to help identify triggers. Some get help from alternative treatments like supplements, massage, pt, injections (Botox, nerve block), etc. They may also have you rotate to a different Triptan as they all work differently and sometimes lose effectiveness. Another good thing to do is try to figure out why they increased in duration and severity. Do you have something for the vomiting? A Phenergen suppository is an example of something that can be used to help treat that so you can stay hydrated and stay out of the ER. You do have quite a few options and there is no reason to be suffering so much. Best wishes.

Amitriptyline being 'mild' scares me lol. I gained about 25 lbs in 3 months, my hair was falling out, I was anxious, and I barely slept the entire time I was on it. And to boot, I didn't really get a reduction of headaches while I was on it.

The main reason I am scared I guess is that I do pretty physical work. While I get disabled by migraines obviously, I think overall the level of activity I do at work helps in the long run. I don't know what to do if I get prescribed a medication that causes me to not be able to function at work.

I am just in this nasty cycle where it seems I get a headache pretty much every weekend. It doesn't make for a fun time when I am struggling to make it through work, just to be sick and not be able to do anything with my family during my downtime. So I have to try whatever they suggest, but I am worried.

Sometimes you have to take that risk. The good thing is that the rate of dangerous side effects for a med to get approved has to be low. If you get prescribed a preventative, ask if you can stop taking it right away if you get uncomfortable with side effects. Usually in the beginning you can stop taking something anytime you want, but after awhile you might need a taper schedule. Often when you've just started a med and get side effects you can go right off of it and they start subsiding right away. You don't need to give it 3 months or whatever just because the doctor says so...its your choice.

I also have my limit. If you get a reaction like you did on the Amitriptyline thats probably a sign its not a good med for you. There are so many to try there isn't any reason you need to stay on something you can't deal with. Do keep in mind that often the side effects subside over time, but I get you that some I just can't deal with (for me its hair loss, weight gain, and anything cognitive). I also tend to get my worst pain only on nights and weekends. Good for work, but bad for social life. Hang in there! Whatever decision you make is the right decision if its what makes you feel better. Sometimes doctors can be pushy (but they just want to help). Best wishes.

I started topomax last June, and slowly worked my way up to 100mg in the morning and 50mg at night by September. It didn't make my M's go away, but it did reduce their frequency. (I get daily ones.) The only side effects I had were that soda pop tasted awful and I lost 90% of my appetite. When it stopped working for me around christmas I had lost almost 30 lbs. (I needed to anyway.) They have restarted me on a lower dosage and added in amytriptiline. I still have one every day but my pain level has been reduced. Gabapentin worked great for me right away, but made my hands and feet go painfully numb. I tell you this to show you what works well for some, doesn't for others. It's taken us a year to get me to the point I'm at now. Good luck!!

"freak"

How is your blood pressure. If above 120/80 maybe start with calcium channel blocker , or beta blocker.
many doctors try SSRI. Your doctor may want to try what he has seen the most response to . That may not be for you. I would try a preventive. A regular GP doctor should be willing to work with you on those and the appt. may not be so long apart. I hope you find something.

My appointment ended up being earlier in the month than I thought. The specialist decided to try Topomax. I am currently on 25 MG. Not having any major issues with side effects at this time. I was taking it at bed time, and waking up really groggy, so I started taking it an hour before bedtime and that seemed to help. I'll see what happens side effects wise first time I bump up the dose.

Yay! Take it very slow with the dose increases and drink a lot of water. It can help with side effects you may get such as tingling in your hands & feet. If you start to have side effects, I'd recommend holding at a dose for awhile if you can with the pills they gave you, as its more likely you will stick with it that way (vs. starting to get side effects and then getting out of control).

This is one of the meds that once you are above the starting dose if you wanted to stop if you'd need to taper off, so be aware of that (stopping cold turkey can actually cause seizures even if not taking it for epilepsy). It can take a few months at a therapeutic dose to see if it will help you, but if you can tolerate it, this is one of the meds you have a better shot with. For me, just actively trying treatments gives me hope. Best wishes.

I forgot to mention along with the Tompomax he told me to take 400 mg of B2 a day.

I up my Topomax dose for the first time this weekend (increasing it every week). I not no real noticeable side effects at 25 mg, so we will see how thing go at the next dose.

The other update on the appointment, he asked me to try Botox and I refused. I am not one to refuse any treatment that could help but the thing is I know several people that have tried Botox for migraines and it hasn't helped a single one of them. Not only that, it made the migraines worse for one of them. Combine that with the fact that it's an extremely expensive treatment, and I just can't bring myself to try it.

I just thought I'd keep the thread updated. As mentioned my appointment date was WAY earlier in the month than I thought. 2 days after I posted in fast lol. I had been in so much pain my brain wasn't exactly working.

I have been on the Topomax since the 4th. I started at 25 mg, and took my first dose of 75 mg today.

So far no really bad side effects. It's a bit of a jolt each time I up the dose, accompanied by a bit of anxiety and confusion, but it seems to alleviate after a few days each time. I do have some issues with my memory, and soft drinks taste completely bizarre. We will see what happens after the increase to 75 mg.

My energy levels seem to really go in waves. It's really tough to figure out if I should be taking it at night or during the day. I have always had sleeping problems, and that hasn't really changed, so I can't contribute that to the Topomax I don't think. And it does make me a little 'off' when I first take it and I'd rather not be driving etc. at that point. But, it could be contributing to keeping me up... so I really don't know.

The one side effects I do have to really watch for is over-heating though. I work out doors, and I guess you really have to watch for that on Topomax. I noticed I wasn't sweating as much, and when I would take a break I would be REALLY over heated because I would have no warning of how hot I was getting which is what excessive sweating normally is. Luckily I learned this lesson while it's still fairly cool out here.

As for the headaches. Since the 4th I have had to take one Frova, one Malaxt, and one Percocet. There were several times I felt like I might get headaches and they just never fully came on which is a completely foreign, shocking feeling for me. Having had these migraines since I was 7, normally if I get ANY feeling of a migraine coming on, I am screwed. Looking back on the day I took the Frova, I may have been able to get away with not taking it now that I have seen how things have progressed. That headache have have dissipated, or I may have been able to stop it with a pain killer.

Also of note, it very early this morning that I had to take the Maxalt. Tonight was when I was due to up my dose. I was last Friday morning I had to take the Percocet, again the day I was due to up my dose. So I don't know if that's a case of building up a tolerance to the drug each time or what.

Anyway, it's been interesting to far. Hopefully it's interesting to someone else lol!

The first time I tried topomax it made my soda pop taste horrible also. The only ones I could handle were 7-up type sodas and orange drinks. This time around I didn't get that effect, but I also had to swear off all soda half way through. Thankfully it never made my coffee taste funny!! Good luck with this med. It decreased the severity and frequency for me for a few months before it quit working. We gave it a few month break and are trying it again in a combo. It wasn't as sucessful this time, and tomorrow is it's "deadline". Hang in there!!

"freak"

freak, when it stopped working did they try increasing the dose or did you just stop it as a treatment? What dose were you on?

The doses people are on seem to really vary when I read people's experiences on forums. Some are taking less than what I am taking now, some way more. It makes me wonder if it did start to lose effectiveness if they would just increase my dose. I don't have a followup for a few weeks.

they tried increasing the dose, but it didn't help. I currently take 100mg twice daily along with 50mg amytriptiline (sp?) at bedtime, and this combo doesn't seem to be helping either as I was just in today for more shots. Sorry I am not more assistance.

"freak"

Ok, I thought I'd post an update as I haven't been around for awhile.

I'd like to preface by saying I probably picked the worst possibly time to be trying this medication. Here in Ontario (Canada) we have had one of the most extreme summer's weather wise I can remember. We have had weeks of draught with heat into the 40's (celcious) with the humidity, followed by insane storms. Weather affects my headaches, so it's the worst case scenario.

Unfortunately things have not been good the last few weeks. My first couple of months on Topamax went really well. I ran into some initial breathing issues, which I guess is a rarer side effect of Topamax. This caused me to have to drop my dose down. But, the dose I was one was very effective for 2 months with very few side effects. I only had a couple of headaches that entire time, and they were easily treatable. I almost felt 'normal'. With the crippling humidity, the breathing issues were still there but tolerable. Other than that, no major side effects.

I don't know if it's due to the medication building in my system, but things have taken a downturn in the last few weeks. I am very lethargic and have started to get some of the tingling sensations in my limbs that are mentioned as side effects. I get very winded easily. I'd also say I am suffering from some minor depression. And the worst part, at this point my headache frequency is getting close to being back to what it was before I started the drug. It's not there yet, but close.

I have a follow up in September, and I am pretty sure the Dr's advice will be to try to bump the med back up again. But for the first time since starting it, I think that may not be possible with the side effects. I think upping the dose could likely reduce the headaches again. But, it's getting to the point where I don't even enjoy going for a long walk and I don't want that getting even worse.

So, now I am contemplating weaning of the medication over the next couple of weeks. If it's not overly effective at this dose, and I don't think I can handle the side effects at a higher dose, I don't think I should continue taking such a strong drug.

A question for anyone else out there who happens to read this and was on Topamax. Did any of you develop side effects later on into treatment after not having them initially?

tdu wrote:
A question for anyone else out there who happens to read this and was on Topamax. Did any of you develop side effects later on into treatment after not having them initially?

I have been taking Topamax for almost 2 years now, come November. I think I would be able to answer your question. I had been taking this med for a while at a lower dose. My migraines seemed to be doing okay, but then returned at a full vengeance almost like they were before treatment. When the dose was increased I experienced a return of side effects while I got used to the new level. I currently am at 75 mg in the morning and the same repeated at night. Most of the side effects have worn off. I do however sometimes get occasional tingling of my extremities. I also sometimes cannot remember my coworkers names....I just give them a new name and joke about it (there are a tonne of coworkers where I work). On very, very hot days I also have a hard time maintaining my own body temperature. I do sweat more now than when I started the medication though, which is really nice. Just a couple weeks ago I allowed myself to overheat in the mountains, and I had to get off the mountain fast and to safety. I was getting dehydrated quickly. That usually never happens to me! My doc gave me some more meds for that.

These side effects are nothing new. I never did get any new side effects later into treatment, if that is what you were asking. Some things went away...most things anyways.

Jilly wrote:

tdu wrote:
A question for anyone else out there who happens to read this and was on Topamax. Did any of you develop side effects later on into treatment after not having them initially?

I have been taking Topamax for almost 2 years now, come November. I think I would be able to answer your question. I had been taking this med for a while at a lower dose. My migraines seemed to be doing okay, but then returned at a full vengeance almost like they were before treatment. When the dose was increased I experienced a return of side effects while I got used to the new level. I currently am at 75 mg in the morning and the same repeated at night. Most of the side effects have worn off. I do however sometimes get occasional tingling of my extremities. I also sometimes cannot remember my coworkers names....I just give them a new name and joke about it (there are a tonne of coworkers where I work). On very, very hot days I also have a hard time maintaining my own body temperature. I do sweat more now than when I started the medication though, which is really nice. Just a couple weeks ago I allowed myself to overheat in the mountains, and I had to get off the mountain fast and to safety. I was getting dehydrated quickly. That usually never happens to me! My doc gave me some more meds for that.

These side effects are nothing new. I never did get any new side effects later into treatment, if that is what you were asking. Some things went away...most things anyways.

Thanks for the reply.

What could be giving me a lot of issues, and what could just make it not possible to take the medication for me, is that I work outdoors. I have major issues controlling my body temperature as you mentioned. I think that is what contributes to me feeling absolutely drained a lot of the time. I have been working outdoors in temperatures averaging 35 degrees C most of the summer (95 F) with several days reaching 45 C. I am extremely cautious of my hydration due to the medication, but it's a constant fight. Basically though, I am functional at work but have pretty much zero cardio as far as long hikes etc. And that's at a low dose.

I should tell you what I do for work. I am a cook and most days it gets really hot in the kitchen. I have never been able to handle the heat and that was before I was on Topamax. When I was a teen my youth leaders would take me on hikes and I would be left behind under a tree with problems due to the heat. I remember always having problems dealing with heat and that was even before this medication was introduced. I also have Raynauds which makes it very difficult for me to keep warm in the winter. I cannot win.

My sister makes these neck coolers that are tubes of cotton fabric with a teaspoon or so of "cracked ice crystals" inside. You make them long enough to tie around your neck. Soak the finished neck cooler in water for an hour or until all the crystals are absorbed with water and wear it. This really helps keep you cool on a hot day. I did go on a multi-day trek with a lot of hiking and I used the neck cooler, along with drinking lots of water. I also wore a bonnet (seriously a pioneer bonnet and full costume lol). I never had any problems during those days of hiking...and it was way hotter than my day on the mountain a few weeks ago!

The neck cooler sounds awesome. Where does she get these cracked ice crystals? I would love to make one of these. I'm going on Safari and am very worried about the heat putting me into a migraine.

My sister gets the Cracked Ice Crystals at a craft store called "Michaels". I am sure you can find them elsewhere. Usually when people use them they put them they have the crystals all expanded with water in decorative bowls, with a candle in them. I did a quick search on the internet and you can buy them from florist type web sites, ebay, wedding decor web sites, so look for stores that sell those types of things.
Also do not pour them down your drain because they just keep on expanding! If you forget your cooler in water it gets pretty full and water logged!

I gave one of these to one of the kids that also has a problem with heat on that trek I went on. She was worried about the heat and this helped her and eased her fears about the heat too!
Anything that can cool us down is great, especially when planning a SAFARI! LUCKY YOU! Have fun!

Migrainegirl...If you come up with any great ideas that worked great while you were on your safari that helped keep you cool, would you start a thread and let us all know?

Jilly,

Thanks so much! We have Michaels here so I will look for the crystals there. How long does it work for? It sound perfect for the safari as I've been very worried about staying cool and can't take a bunch of ice packs.

I'm not sure how I will do on the safari but am really looking forward to it. It's a once in a life time thing. Next big worry is the bouncing around in the jeep on ruted roads which can be really painful with a migraine. I may spend a few days in the tent.

For the Neck Cooler I just would do a good refresh in the morning. They last for a while but as I wanted it refreshed I would take a water bottle and just wet it a bit and that helped refresh it. I also was trekking near a mountain stream and would use that to dip it in. You could make another and have it in a zip storage bag ready to go. Dump a bit of water in the bag and let it absorb. Do a trial run before you leave the country to see how well the device works. Where I was trekking we had nurses and a doctor right on hand. The doctor was always within calling range.

An update on my situation.

I had no side effects for the first couple of months (other than the heat sensitivity issues), THEN started getting some nasty ones. I guess that is the opposite of what normally happens, and the side effects should taper off. I started having issues with breathing/coughing (bronchial issues is rarer side effect) that kept escalating, started feeling really weak in my arms and legs, and was having some serious mental fog. And the worst effect, I started having some really odd thoughts that I can only atribute to the drug because they are definitely unlike anything I have had before. EG I'd be driving and start wondering what it would be like to drive my car off the road into a tree.

I did have some effectiveness as far as reducing the frequency of migraines when I made it up to 75 mg, but I couldn't stay on that dose. I was still getting side effects at 50 mg, and the side effects seem to escalate instead of getting better. And, I at that dose it wasn't doing as much to help the migraines.

So clearly I guess it's not a drug I can tolerate.

Hi TDU,

Thanks for sharing your experience with Topomax. It's one of those drugs with so much promise and works so well for some people (who can tolerate the side effects) and seems to almost kill everyone else!! It is such a frustrating and potentially depressing experience to find a drug which you think might actually give you your life (i.e., fix the migraines) only to find that it's not going to happen. It's so disappointing. We are all so desperate at some level to be pain free and to feel that we can have access to the world and life in all its fullness without the constant debilitation of migraine. The depressing effect of Topomax is not surprising since it acts by slowing down brain activity - depression has been shown to involve a weakening of the pathways between the emotional learning centre and the cortex. Cortex of course is also the basis of cognition - complex thought, planning etc. which makes it more difficult to use the higher functions to overcome/reinterpret the sensations of depression associated with the drug. Bit of a vicious cycle.

I used Topomax for nearly a year (last year) and it was absolutely magic for getting rid of migraines. I maxed out at 50mg a night. Your initial experience of feeling a migraine begin but not actually develop was my experience too. They reduced in frequency and in severity and that was a blessed relief. Unfortunately I did have side effects which didn't really abate - particularly the cognitive retardation - which made it impossible for me to formulate and write my Honours Thesis at the time. I also had a motor retardation problem when I was titrating onto the drug - I could barely move or drum up the volition to move. I'm a lazy slob so I didn't have too many problems with overheating although the few times I went to the gym I definitely experienced that.

How are your migraines now? How do you maintain your level of outdoor physical activity given that you are getting so many migraines per month? Have you had any change in frequency if you look at before the Topomax versus after Topomax? Do you stay home and rest when you have a migraine or you knock it on the head with your abortives? I take my hat off to you that you are able to maintain an active physical lifestyle despite the impact of your migraines.

Have your depressive side effects totally abated now with you having stopped the Topomax?

Cheers,
Bonnie

living wrote:Hi TDU,

Thanks for sharing your experience with Topomax. It's one of those drugs with so much promise and works so well for some people (who can tolerate the side effects) and seems to almost kill everyone else!! It is such a frustrating and potentially depressing experience to find a drug which you think might actually give you your life (i.e., fix the migraines) only to find that it's not going to happen. It's so disappointing. We are all so desperate at some level to be pain free and to feel that we can have access to the world and life in all its fullness without the constant debilitation of migraine. The depressing effect of Topomax is not surprising since it acts by slowing down brain activity - depression has been shown to involve a weakening of the pathways between the emotional learning centre and the cortex. Cortex of course is also the basis of cognition - complex thought, planning etc. which makes it more difficult to use the higher functions to overcome/reinterpret the sensations of depression associated with the drug. Bit of a vicious cycle.

I used Topomax for nearly a year (last year) and it was absolutely magic for getting rid of migraines. I maxed out at 50mg a night. Your initial experience of feeling a migraine begin but not actually develop was my experience too. They reduced in frequency and in severity and that was a blessed relief. Unfortunately I did have side effects which didn't really abate - particularly the cognitive retardation - which made it impossible for me to formulate and write my Honours Thesis at the time. I also had a motor retardation problem when I was titrating onto the drug - I could barely move or drum up the volition to move. I'm a lazy slob so I didn't have too many problems with overheating although the few times I went to the gym I definitely experienced that.

How are your migraines now? How do you maintain your level of outdoor physical activity given that you are getting so many migraines per month? Have you had any change in frequency if you look at before the Topomax versus after Topomax? Do you stay home and rest when you have a migraine or you knock it on the head with your abortives? I take my hat off to you that you are able to maintain an active physical lifestyle despite the impact of your migraines.

Have your depressive side effects totally abated now with you having stopped the Topomax?

Cheers,
Bonnie

Hey there. Unfortunately, the migraines have increased in frequency. There is no doubt the Topomax was helping a lot with that. I am back into the cycle I had where I could fend them off all week, then end up laid up most weekend. That was cycle was eliminated the by the first 2 month I was over 50 mg. There is no doubt it was having some impressive effects. But ya, then the worst of the sides came on late for me.

My job is understanding. I normally attempt to work through with abortives if I can. If I need to come in late, or leave early I do. I don't have much luck trying to work on Triptipans, so if it get's to that stage I don't come in or I leave. One thing living life with migraines has done is make me a hard worker, so I make up for, and they are understanding.

Unfortunately I don't think the side effects have abated for me yet. I just didn't have any of the depression type symptoms before Topomax, so it's the only culprit I have. Breathing is about 75% better. Mental fog is gone most times but will seem to hit me hard once in awhile. I hope these side effects subside, but it's taking awhile.

The other side effect that is lingering was the massive weightloss I had. It didn't come on until late either. I am a pretty small guy, and I lost 10 lbs in the second month. I was looking like a wraith, and still am.