Doctor Rant - Update Page 3

I’m taking deep breaths to calm down, really I am.

I have migraines, not the vomiting-out-of-commision migraines but just regular pounders-but-I-can-still-try-to-function migraines. I’ve been taking pills for these forever now (ex. Imitrex, maxalt, etc) and my newest doctor decided that a daily preventive medicine would work better. So I tried it and went back after 3 months, nothing better so he increased the dosage. Another appt after 3 months and still nothing better so he ups the dosage. Next appt is still no better so he does the same. This time after 2 days of taking the medicine I feel exhausted and like it’s a huge effort to do anything.

I call the doctor’s office and get a nurse. She takes all of my information (including my lower than normal blood pressure of 90/72) and says she’ll talk to the doctor and call me back. She finally calls after a couple hours (that’s ok - I know they’re busy) and says just go back to the dosage I was taking before. BUT that didn’t work before so why would I go back to that? She doesn’t know so she’ll go talk to the doctor again and call me back. Which she doesn’t.

I call the next day and finally get to someone. Now she says the doctor wants me to take the new dosage (that’s making me extremely tired) AND start taking a relaxer at night to help with sleeping. BUT I DON’T HAVE A SLEEPING PROBLEM. She can’t explain to me why the doctor wants me to take this new drug. What’s the deal?

I’m just going drug free. I’d rather deal with the migraines then just keep popping all of these pills.

oh- I hear you!!!

is the doctor you are seeing a neurologist? if not, it may be worth seeing one. often they are better at treating migraines than a general practicioner. I had very bad migraines for several years. we tried lots of things (imitrex, maxalt); tried daily preventatives. tried rescue medications; had cat scans, MRI’s etc. tried tracking a food diet; tried on /off the pill… what has worked for me is staying on a low dose pill all the time. but everyone is so different.

if this doctor and his staff are not listening to you - you need a new doctor. you deserve to be pain-free or at least able to function.

I still have a current prescription for rescue therapy (I think it is imitrex now) but balancing out my hormones has been the life saver. I had a neurologist who really listened and didn’t get frustrated with me when his ideas didn’t work.

this daily preventative thing is fairly new in the overall treatment of migraines, and it doesn’t work for everyone. some docs read the latest headlines, toss you the prescptions, and move on. you deserve better.

it isn’t wise just to stop taking any medication suddenly against Dr orders… sometimes the body needs to get used to lower and lower doses before it is removed completely. Especially if you are using a beta blocker which can affect your blood pressure. (my sister in law has great success with one of the beta blockers as a preventative med)

Do try to get seen soon, and bring your list of questions/ frustrations. doctors are reluctant to treat over the phone due to legal liabilities, and they want their co-pay.

but also start looking for a better doctor…

newdoctornewdoctornewdoctornewdoctor…I really can’t repeat that enough.

I have migraines, too. The aura seeing, throw-up, lie in total darkness, don’t even whisper to me kind. I would recommend that you see a neurologist. You should get a referral from your new GP.

:hug:

Update -I just got off the phone with the pharmacy to cancel the relaxer-type pill. I asked her what it’s used for and she said it’s an anti-depressant that has side effects of being a sleep aid. I know that depression is a serious issue but I am no where near being depressed. My husband just about flipped out when I told him about it. He travels for work alot and we have a 16 month old so I can’t afford to take a sleep aid.

The one that I’m taking now is a beta-blocker called Propranolol (generic for Inderal) and then I take Maxalt when I do get migraines. All I asked the nurse for yesterday was if my symptoms of being exhausted were normal and if they would just go away once my body gets used to the new dosage. Still no answer on that one - they just wanted to give me a relaxant.

I have gotten a MRI and all of that jazz and it came back normal. I was told my migraines aren’t severe enough to see a neurologist. Which is pretty true because I can still function mostly when I get them. This is a team practice so the first doctor I saw recommended Topomax and when I expressed concern about seizures as a side effect he thought I should try a natural way with a chiropractor. Nice back rub but no luck with the migraines.

This next doctor (same practice) said that recommending Topomax for my migraines was like killing an ant with a sledgehammer so he recommended the Inderal on the gradual increase dosage until no more migraines.

I explained to them that I had absolutely no migraines when I was pregnant but they just said that hormones can do great things. I think I should just get pregnant again!

I have them too. So does my youngest DS. The “please somebody chop my head off” kind. I take OTC Excedrin migraine with 1 ex-strength tylenol. 30-40 minutes later… it’s gone.

ETA: Should add that they are “optic” migraines, so I do know when they’ll hit. I can get a jump on it and take the meds.

I feel your pain, really I do.

I used to take the Excedrin for Migraines and I loved it until it started making me jittery and stopped working. Now I have just about no caffeine in my diet to try to prevent these.

I’m much calmer now and I have an appointment in a month to discuss with my current doctor. I think I’m going to give this dosage a little longer to see if the exhaustion feeling goes away. If not, I’ll ask to try the Topamax. Seizures isn’t the only possible side effect, I was told that weight loss is very commone while taking this drug! Sign me up!

Yikes. Inderal is a beta blocker that is used for controlling blood pressure among other things. One of the side effects would be lower blood pressure and pulse. It can also make you feel mighty tired because its blocking the adrenaline like chemicals from working at certain sites in your body. I’m not sure its such a great idea to quit cold turkey though. I would do it gradually under the guidance of a doctor.

My normal blood pressure is a little low to begin with so that’s why I called yesterday when I was feeling so tired this past weekend. I’m just annoyed that I couldn’t get a straight answer from the nurse or even just talk to the doctor directly.

So this medicine lowers my blood pressure and then they want me to take a sleep aid. It just doesn’t make any sense to me.

um, maybe its b/c I have my own issues with doctors and my chronic illness, but shouldn’t the [B]neurologist[/B] decide (and not the GP/ gatekeeper) if he/she should treat you? Those who do not have migraines have no idea how life altering they can be. are you stuck in a plan where you have to get a referral in order to be seen and covered by your ins?

Jeremy and everyone else is right- beta blockers like inderal lower blook pressure. so if you were low to begin with I am not surprised at all you are feeling wiped out. it isn’t a symptom to be taken lightly, and you shouldn’t quit it cold turkey.

(and if you felt so much better pregnant- it might be worth trying different versions of the pill to see if you can replicate the experience. I tried every variety that was on the market (it was a tough year) and found one that absolutely makes life livable again. I take it continuously with no weekly break. and it was recommended by my neurologist, so it isn’t some whacky treatment dreamed up by someone without credentials- he said hormones and more importantly hormone changes can be a terrible trigger.)

Yikes, Topomax can cause seizures as a side effect? How common is that? Can you share where you learned this information? My sister takes topomax for her epilepsy, and I was under the impression that topomax was a fairly common drug for seizures.

If I were you I’d go to a neurologist too. It wouldn’t hurt to see if they could help with your migraines.

This is the way that it was explained to me by my doctor:
Topamax is an anti-seizure medication that has side effects of preventing migraines. Migraines are like a mini-seizure in your brain. You have to slowly start taking it and gradually increase the medication and if you ever want to stop it has to be gradual. If there’s a sudden stop in medication you could have a seizure (it’s a very slim chance). The most common side effect from taking this drug is weight loss.

The seizure thing scared me but maybe I need to take a closer look. I got a little worried because sometimes I get busy and a might forget to take a pill. I like the idea of trying different birth control pills too. I switched to Seasonale just so I could have less period-related migraines.

I’m sorry if I phrased that incorrectly! I didn’t mean to worry you!

topamax is used to TREAT epilepsy. www.topamax.com has a place for full prescribing information (top right of the page) and also has a little commercial about how it is used to treat migraines.

here’s the warnings they print on the bottles: (remember, they are legally bound to report ALL effects reported, whether or not they are actually related to the drug, so it sounds more scary than it is.)
From topamax.com- not my writing, and copyrighted by whatever pharmaceutical company sells it.
[B]IMPORTANT SAFETY INFORMATION[/B]

Serious risks associated with TOPAMAX include lowered bicarbonate levels in the blood resulting in an increase in the acidity of the blood (metabolic acidosis). Symptoms could include hyperventilation (rapid, deep breathing), tiredness, loss of appetite, irregular heartbeat or changes in the level of alertness. Call your doctor immediately if you get these symptoms. Your doctor may want to do simple blood tests. Chronic, untreated metabolic acidosis may increase the risk for kidney stones or bone disease.
Other serious risks include decreased sweating, increased body temperature, kidney stones, sleepiness, dizziness, confusion, difficulty concentrating, and increased eye pressure (glaucoma). Call your doctor immediately if you have any decrease in vision or eye pain. These problems can lead to blindness if not treated right away.
More common side effects are tingling in arms and legs, loss of appetite, tiredness, nausea, diarrhea, taste change and weight loss.
Tell your doctor about other medications you take. Please see enclosed full U.S. prescribing information.

Let me start by stating that I am a migraine sufferer. The lie in bed, throwing up, do not talk, breathe, or be near me in any way, because your body heat is killing me, and of course I will need to sleep for the next three days to get rid of it. And suicide is against my religion it is also not an option. Since I have small children (two and one-year-old) above things are not possible. Went through all the medicines that Western doctors could prescribe, and nothing worked, finally talked to a man who studied Chinese medicine. I now take Piantoutong Wan when I feel I migraine coming on. Not sure if it will help you, but it worked miracles for me. I have been a sufferer since I was about 6 months old, and would not wish it on the Devil.

Joanne

Definitely see a neurologist, it’s very important. I used to have migraines in the army, and they tried giving me some strong pills for the migraine itself or giving me anti-depressant every day. Both didn’t work! I kept having everyday migraines. What made the difference eventually? I got released from the army - i stopped being so stressed AND i stopped working on the computer for 12-13 hours everyday. Stress is a very big trigger for migraines, so maybe you should look at your lifestyle, see what can you change. You say that you have a little baby and your husband is away often, maybe without noticing and admitting you’re under a lot of pressure:shrug:? Maybe try natural valeriane pills for relaxation? Good luck :hug:

Ahh, I see. Thanks Suziehomemaker, and MaryKZ. It’s the whole withdrawal thing. I know all about that, unfortunately. My sister is severely disabled, and unable to speak for herself, so I remember quite clearly the struggle with finding the right seizure meds for her when I was a child. It took years to get it right (and also finding the right neurologist), but she is doing so much better with the seizures now.
I wish you luck, suzie, with finding help for your migraines. :hug:

Just to clarify a little. Inderal can make you feel tired independent of what your blood pressure is. It is something that some people can work through and feel right again although its an individual response.

you should also taper off the inderal too. everyone here has already pretty much said what i would have said, med-wise. best wishes to you.

Thanks for all of the advise and knid wishes! I’m going to stick with the Inderal until my next appointment in about 3 weeks and see if my body adjusts to the exhaustion.

I’ve had migraines for awhile now so I pretty much know my triggers: caffeine, not drinking enough water, being in the sun for too long, stress, mentrual time and working out harder than I should. There’s probably more but those are the most common.

I do work from home and I’m at my computer for most of the day (8:30 to 5:00) but I have gotten better at taking breaks. I sit in front of a big window so I look outside at least once an hour to give my eyes a break. I also had/have TMJ problems from old sports injuries so when I get stressed I tend to clench my teeth & eventually get a migraine.

I took up yoga and knitting to help with my stress and it works for the most part. Well, except last night when I had to frog my entire lace scarf! It was only about 3-4 nights of knitting so not too bad . . .

talk about a timely news article-

Reuters has this about how often doctors dismiss patient’s reports of side effects and aren’t listening to their patients.

the take home from the article- get a new doctor. what about educating the docs to listen, and actually read the prescribing information and being informed?!

anways, interesting reading.

:waving: Fellow migraine sufferer!! Hello! Oy vey. Let me start off by saying I’m sorry you are having to deal with this crap.

Second, Yes, go to a neurologist pronto! I did the regular doctor for a few years and they know absolutely nothing when it comes to migraines. It doesn’t matter if you’re not the “throw up” kind of sufferer, you have them. End of story. A neurologist isn’t going to send you on your way cause you don’t puke with every headache.

As for those drugs you mentioned, I was on Topamax for 2 years. They start you out on the lowest dosage and work their way up to one that helps. For me, we started with 25 mg and I ended up (at the end of 2 years) on a 200 mg dose. 125 mg’s was the one for me, then after a while it had to be upped. That’s the max they use on non-epilieptic patients. As for the risks of a seizure, it won’t likely happen unless you stop it cold turkey. Which you shouldn’t anyway. I’ve been off of it for 2 years now and I’m fine. I wouldn’t worry too much.

I’ve tried the Inderol as well as a crap-load more prevetatives that worked for a little while then stopped. So now I’m actually on Rhinocort for my allergies and that has stopped them from about 15 a month down to 2-3 a month. It’s been heaven!!

Yes, everyone is different and will react differently with different drugs, but that doesn’t mean you should automatically say no to something.

Don’t buy into the “horror stories” some people will/are telling you about different drugs. Only your doctor can know for sure. For me, I swear by Imitrex - I should buy stock in that stuff!! - but for a lot of people it doesn’t work. Which I can’t imagine that happening to me! :oo: Your best bet is to see a neurologist. They will help you get better, or at least maintain them.

Remember EVERYONE IS DIFFERENT. Just because someone who tried Topamax had a bad experience with it, doesn’t mean you will too.

I wish you all the best, and know that we are here for you! :hug: