ANY SUGGESTIONS?

wenmarie · December 3, 2005, 1:34am

help!!PLEASE!! I am a 26 year old female who has suffered from migranes for as long as I can remember. I get at least three a week. I am currently trying topamax which I do not know how much longer I will last on that

! I have tried Imitrex, maxalt, effexor, prozac, lexapro, ativan and several over the counter pain meds and nothing helps me. MY doc treats me like I am faking and a med seeker. I have tried swithching doctors even and nothing seems to help. They just keep handing me med and telling me to "try these". ANY SUGGESTIONS

purplegdaisy · December 3, 2005, 2:14am

wenmarie, I don't know if your doctor thinks you are faking them, but the kind of meds you are getting are not ones one would typically ask for if one wanted "drugs" It took me a long time to find an abortive drug that would stop the headache before it became a migraine, If I woke up with the pounding, nothing short of a shot at the ER would stop it. I too have tried maxalt, effexor,laxapro,ativan and topamax, which I had to stop because the side effects became too severe. The headache was (dare I say it) almost better than the drug. I also took Migrainol (which is a spray up the nose) and that helped for a while.
I now take axert (pill) if I catch the warning in time, and if it does not help within an hour I give myself an injection if Imitrex. (I took the pill form and that did nothing)

Sometimes I feel like my body is getting used to the drug I am using or the headache is getting smarter because I will take something and have it work for a few months and then it stops.............. so far, I have been using the axert and Imitrex injections for about 6 months and only had to go to the hospital 3 times (twice in one week) so I think that is great progress since they were coming about every other day. now only about once a week and usually I can control them. It is when I wait too long that I cant stop it. And I figured out what my triggers were... drinking alcohol and not enough sleep.... I have to get at least 7 hours or I will get a migraine for sure, and one or two drinks is fine, but any more and I am sorry tomorrow!

Keep trying, and keep taking the samples from your doctor, No use in buying a whole prescription if it won't work... don't give up... there is something out there for you.

Tracy

Diagnosed UC october 2004
Asacol 3x3 daily
tried Rowasa enemas (hated them...burned like crazy)
Ccurrently in remission.... no blood or D...

Sleep Apnea
bulging disc in lower back causing me tons of pain from car accident in July
currently in PT for back... not helping.. (2x week)
Seeing new Chiro now, Hope to get some relief
DDD L4-S1
right hip 1 inch higher than left (think me standing on the brake during accident caused this)
left shoulder lower than right

Glucosamine for pain in back (doc said try this in addition)
TENS unit for home... seems to help some when I am standing for long periods of time
Facet injections 16 (8 on each side) didn't help)
Lumbar Medial nerve branch injections (radiofrequency burning on Wed)
axert (migraine abortive)
Imitrex for migraines (injections only work)
paxil
xanex for sleep
Zonegran (nerve pain)
Celebrex
Darvocet

wenmarie · December 3, 2005, 2:43am

I have the same triggers lack of sleep and alcohol. I am taking the topamax as a preventitive but like I said earilier I do not know how much longer I can stay on it. I am only at 50 mg and they want me at at least 100. I am soooo tierd and just slow on it. as far as the abortive meds the only thing I have is the midrin which is pretty weak. I end up in the ER at least montly which I not only get treated like crap there, I have a hard time finding someone to take (drive me) me or someone to watch my children so I can go. I do not have a good support circle. No one else in my family has ever suffered with head aches so they treat me like a hypochondriac. My parents know I am for real cuz I seen my first neuro at the age of 7. I find my self just suffering a lot. Just looking for some adivce

tymaboy · December 3, 2005, 3:39am

Hey I just wanted to let you know that I am on Topamax & yes I did too have a hard time at 1st too on it. I used to get headaches about 3-4 times a week, now I only get a dull one about once aweek. The Dr. wanted to up it after only a week but I had to wait to atleast 2 weeks & even at that it would not have bothered me to have gone another week before upping it. If you can put up with the side effects for a couple weeks Topamax is worth it. It also helps to have a Dr that is understanding like mine is & allows me to up it when I am ready & not when she thinks it should be done. I need to up my dose again but have been putting it off for that last few weeks due to the side effects. The one that gets me is it makes my jaw,gums & teeth hurt. They hurt so bad that I don't want to talk, eat or anything that I have to move my mouth or chew anything. I eat alot of mushy stuff during that time. I wish you luck with whatever you decide to go with.

purplegdaisy · December 3, 2005, 5:13am

that was one of the side effects of the topamax for me. I had ulcers on my gums and tongue. I couldn't drink anything but water and it really made me thirsty. I took about 8 weeks to get to 75 mg (slower than my doc wanted me to go) and I started to feel like crap. My whole body hurt, including my hair! I think the drug itself is a great idea for those that can withstand the side effects, Oh and weight loss was one of those (maybe because your mouth was so sore you couldn't eat :) ) I had hair loss too, which was no biggie for me as I have the thickest hair my beautician has ever seen! I am thinking about trying it again because it did stop the headaches while I was on it.... Maybe I can stand the side effects better this time. I have a follow up with the neuro on the 12th so I will start again and see what he has to say about my mouth then.

I am sorry you are having so much pain. but know that you are not alone, and there are lots of good people willing to share what they have gone through to help you understand what you may or may not expect...

Lets hope for a headache free week!
Tracy

Diagnosed UC october 2004
Asacol 3x3 daily
tried Rowasa enemas (hated them...burned like crazy)
Ccurrently in remission.... no blood or D...

Sleep Apnea
bulging disc in lower back causing me tons of pain from car accident in July
currently in PT for back... not helping.. (2x week)
Seeing new Chiro now, Hope to get some relief
DDD L4-S1
right hip 1 inch higher than left (think me standing on the brake during accident caused this)
left shoulder lower than right

Glucosamine for pain in back (doc said try this in addition)
TENS unit for home... seems to help some when I am standing for long periods of time
Facet injections 16 (8 on each side) didn't help)
Lumbar Medial nerve branch injections (radiofrequency burning on Wed)
axert (migraine abortive)
Imitrex for migraines (injections only work)
paxil
xanex for sleep
Zonegran (nerve pain)
Celebrex
Darvocet

wenmarie · December 3, 2005, 1:13pm

hope It works better for you this time around! I have not had any problems with my mouth. Just being so darn tierd and slow!! I have a new found hope now! Thanks

tysmyboo · December 3, 2005, 11:38pm

Hi all...

In the next day or so I am going to write a post on Topamax....or should I say "THE" post on Topamax...

I have taken it, this is my second or third time...The first time or two things didn't work out too well.

I have found the "ins" and "outs" I know, for myself, exactly what I need to do to get it to work....and this may help you all...

Stay tuned for that~~Its going to be good.

Topamax has put me in the greatest place with Migraine disease that I have been to this point so far. I know that it does not work the same for everyone-please do not send "hatemail" or ugly posts (joke) I just want you all who are taking it, have taken it, or are contemplating taking it to know where I have been with it, and what I know about it.

Sara

Sara-Migraine/Headache Forum Moderator

coquitlam55 · December 4, 2005, 1:17am

Hi Wenmarie,

I realized I have responded to several of your messages but not officially welcomed you. So "Welcome", I am glad you have chosen to join us here, unfortunately suffering like you are from migraines. Hopefully we can provide support to help you feel better.

I read your post and was saddened to read that you think your doctor thinks you are faking. Are you seeing a neurologist? I have read several books and learned that doctors often blame the patient when they can't fix the patient. Migraine headaches are a difficult phenomenom to deal with. There isn't a known cure and everyone is different so there isn't a "common" fix that works for everyone. I have found that educating myself, going into the doctor with a list of questions and keeping a headache diary are several ways to build credibility with the doctor. Asking to be referred to a neurologist is another step towards pain free or reduction of pain.

When the doctor's change your medication do you make the changes very slowly or quickly? I find that I suffer almost as much from changing medications as from regular life. When you change things only change one thing at a time. Keep track of what you try and the effects.

Your relationship with your doctor / neurologist should be a partnership. You should be aware of how you react to medications and then demand that when you change medications that the change be done keeping this in mind. For example, I have severe reactions going on and off medications, so whenever I go on one or come off one I do it very slowly so that I don't suffer much.

I also see a psychologist who specializes in chronic pain. She helps me develop a pain management plan, ask the right questions and stand up for myself.

I hope this helps.

Good luck.

Nicky

Fall seven times, stand up eight.
--Japanese proverb

tymaboy · December 4, 2005, 3:14am

Nicky (coquitlam55) said...

Your relationship with your doctor / neurologist should be a partnership.

ljlmd84 · December 4, 2005, 8:29am

Hi Wenmarie -
Welcome. I know what you mean about doctors. I AM a doctor and I have migraines, and yet when I lost my (great, empathetic doctor who also had migraines herself) neurologist the new one I inherited just did not seem to listen to what I was telling her. And I am a fellow physician! So I can only imagine how difficult it must sometimes be for regular (non-physician) patients to get an MD to listen to them. I got a new neurologist who is more of a partner with me in the whole thing, and certainly does not seem to think I am a drug seeker (this is actually more a problem for physicians than for non-physicians, because no doctor wants to be the one accused of helping another MD become a drug addict!!) I am on Topamax like you are, and I had a hard time at first - a lot of tingling in my hands and feet, difficulty with word-finding, felt tired. But those things went away or decreased significantly over time...it really did cut the severity of the migraines I was having. My big triggers seem to come on a monthly basis and with approaching low pressure fronts...although more than 1 glass of white wine is living dangerously...If you are only on Midrin as a treatment when a migraine begins no wonder you are suffering! There are other triptans besides Imitrex (sumatriptan) and Maxalt (rizatriptan). Have you tried any of them? Different people respond differently to the various triptans. Maybe you just have not found the right one yet. And then you should have a rescue medication to take in case the triptan doesn;t cut it -- Stadol nasal spray has the most evidence supporting its efficacy, but you can also take Vicodin (hydrocodone and acetaminophen) or Percocet (oxycodone/acetaminophen). Some people take other things like Fioracet -- the main thing is to have a rescue medication available that works for you. Then the only time you have to go the the ER is if the triptans AND the rescue meds fail. But the first order of business is to find a decent neurologist who will listen to you (easier said than done....) and include you as a partner in treatment decisions....You could ask your primary care MD for some other names if you do not like the one you have now. Where I live in Mpls/St. Paul they have a magazine that rates the cities' Top 100 Doctors in a special issue each year. It's not failproof, but the ones who are in there tend to be good technically and have good personalities. I don;t know if you have anything like that in your city. In any case, welcome, good luck, and keep us posted on how you are doing.
Laura L.

wenmarie · December 4, 2005, 1:44pm

laura- I also live in MN where can I get a copy of that list? I do not live in the cities, about an hour and a half away but would be wiling to travel

ljlmd84 · December 5, 2005, 4:19am

Hi there, I think I can track down my most recent copy of Mps/St. Paul Magazine (the one that has the Twin Cities' 100 Top Doctors) for you. I assume you would want me to find you a good neurologist? Would you be coming from the north, south east or west? I guess I could give you a few names and you could look them up and see if they are on your insurance. Would that be helpful? [It's too bad my former neurologist moved to Montana. She was great. She was on the cover a couple of years ago (and deserved to be!)] Do you live anywhere near Rochester, because I have the name of a very competent and empathetic neurologist at the Mayo Clinic. She saw a friend of mind (another physician) who speaks very highly of her. Otherwise I can tell you some names from the Twin Cities.
Laura L.

ljlmd84 · December 10, 2005, 4:39am

Hi Wenmarie,
Sorry it has taken a while to get these to you -- I have been doing a zillion things for family, work, Xmas... Here are some names. I would think all these people are knowledgeable. Most of the ones who get on the list are also personable, but that is not universally true. I do not know all of these MDs, but will list names and numbers, cities -- hope it helps. Neil Dahlquist, St. Paul, 651-291-1559; Sandra Hanson, Park Nicollet (in St. Louis Park), 952-993-3200; Craig Hyser, St. Paul, 651-291-1559 (same group as Dahlquist); Thomas Jacques, Maplewood, 651-221-9051 (this is the same clinic my neurologist, Paul Schanfield, is in -- I like him very much; there is another guy there I have heard recommended - Scott Callaghan; one other guy in their group who is in the top doctors list is Charles Ormiston, but I think he may be mainly into stroke and stroke rehab - you could always ask. It sounds like their whole group is good; even calling and asking if there is one doctor who tends to see a lot of migraine patients might be one way to go.) The list continues: Bruce Norback, GoldenVally, 763-588-0661; Joanne Rogin at that same clinic (Mpls Clinic of Neurology) in Golden Valley. Hope this is helpful.
Laura L.