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Migraines & Headaches Community

Reply: The never-ending migraine

I have been struggling with migraines for 44 years - my first episode was when I was 19...

Posted by mymygraine

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Reply: The never-ending migraine

I have taken prednisone to break the cycle of rebound migraines, but it was 9 day...

Posted by mymygraine

I have taken prednisone to break the cycle of rebound migraines, but it was 9 day course. This happened over 20 years ago, so you can tell how long I have been at this (44 years). That said, the prednisone, which I took once, and never worked for me again (although that is my system, and not everyone else has this reaction) made me completely pain free for the 9 days I took it. I felt like a new person who could do anything! It also told me how much pain I was in all the time and had just gotten to the ignore level, because I was riding horses competitively at the time, was running, and in very good shape. There is a level of muscle soreness that comes with this, that I was ignoring, but I had constant migraines and was not even aware of them. they were at about a level 3, every day, and my pain tolerance was such that I could just ignore them. It was then that I really started to pay attention to my "daily" migraines and try to get out of pain.

I got myself to a good migraine specialist neurologist, and started down the road of trying to manage the pain I was living with.

If you school load is stressful, you might consider cutting it in half so you can do well in your courses, and not be so overloaded. Be sure to hydrate constantly because dehydration is a big problem with migraineurs. Also eat six smaller meals, and eat well, void food triggers and it will be easier to manage.

The prednisone pack will probably break your cycle and your neuro will then talk to you about prophylactic meds to stop the frequency of the migraines, and rescue meds to be taken only at the beginning of a migraine (they don't work if the migraine has started and gone 6-8 hours before being treated).

Good luck with everything. Sounds like your doc is on a good track, but do be proactive, and check with this site and others - migraine.com is my other favorite about meds and discuss your concerns before you take anything. Check back and let us know how it all worked for you!View Thread

Posted bymymygraine

(FromMigraines & Headaches: Support Group)

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Reply: Waking up with a migrain for two weeks straight.

Hi suzmh83 - When my migraines started at age 19, they sounded just like yours. I am so...

Posted by mymygraine

Hi suzmh83 -

When my migraines started at age 19, they sounded just like yours. I am so sorry that you lost your job over this because migraine disease is a documented medical disease that has no cure, but with good management and care and diligent attention by you, it can be lived with, even if you have the pain disturbing your waking hours or pre-waking hours.

That said, if the firing was recent I would go to a migraine specialist neuro to see what help he/she can give you concerning this. We all have to make a living somehow. And I would talk to the HR department and a lawyer about the rules for letting go of an employee with a legitimate illness, and what can be done to remedy time off, or if you can work for home.

First start by finding a migraine specialist neurologist recommended by the National Institute of Headaches, or on this or another migraine site. Migraine.com is another good site to find a good doctor. Be prepared to drive a few hours to get to the doctor, and remember that some of these doctors will not take your insurance so put some money back to pay for the fee. You will most likely have to fill out some kind of questionnaire for the doctor, and wait up to 4 months to get an appointment.

During the wait time start making a record of everything you put in your mouth, and the time you eat it. Also note the weather (a big trigger for most migraineurs - storms), also too much work at a computer, fluorescent lights, certain foods like alcohol, coffee, chocolate, (e.g. caffeine present in Excedrin Migraine), hard, aged cheese, nightshade vegetables, etc. Stress is a big trigger but we often don't know when we are in stress or because life is just stressful and unavoidable, be prepared to take some breaks every 3 hours and just take a 5 minute break, stretch, walk around the room, and then go back to work. All this information will be helpful to your neuro when the appointment arrives. Also try to bring someone with you - husband or best friend to listen and take notes during your appointment. They will hear what the doc says more impartially than you will and it will be helpful later. I am particularly against caffeine as a drug to use for stopping migraines. It is a funny drug because it does stop the pain, but it will also create another migraine. If you are using it more that 2-3 times a week with several days in between you will be getting "rebound" migraines, or migraines caused by the medication itself. These are well known to cause continuous migraines because coffee and things like Excedrin Migraine are made mostly from caffeine. It is a double edged sword, but if you can get yourself off caffeine altogether, and any products that contain caffeine you will see some improvement and can start sorting out other triggers. Everyone is different, and you may not be as susceptible to caffeine as, say I am, but I have been at this for 44 years, and my body now is so sensitive to everything I just live with a lot of pain. These are just some suggestions to try before you get a good doc app't.

Migraines are hereditary, usually from the female side of the family, so check with your mother to see if it is in her family, and perhaps she will have some pointers for you. There are many medications out there to help you, both propylactically and for rescue when you have a really serious migraine that is going to lay you up for a few days unless you do something immediately with a stronger drug.

Let us know how you are doing, check into Migraine.com which post a lot of new about migraines and what is coming down the pipeline, as well as this site, and I hope you get this under control soon and can return to your job with better coping methods.

Best of luck!View Thread

Posted bymymygraine

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Reply: Daily headaches no-one beleives

I just have to jump in here because after reading all of these posts, I think it would...

Posted by mymygraine

I just have to jump in here because after reading all of these posts, I think it would be easy to get confused with all the information being posted.

To Dr Collins: I have chronic migraines and have had them for 44 years. I counted up the number of "medicines" I have used to treat my migraines over these 44 years and it added up to 72. That is a lot of medicine that I have taken to try and treat a disease that when I was first diagnosed the only available medication to help control the pain was Fioricet, Percocet, Percodan or some other opiod. Most medicines have a short effective life for migraineurs. They work until they don't work and then one has to change. I get frustrated with docs who just only want to look at things from an allopathic point of view. The side effects may be the same for bio-identical medicines, but then again, they may not. As far as I know, there are no definitive tests that say they are the same. So if it works for a migraineur, as it does for nlhjd, then go for it. I am in total support for what works. I have seen so many docs over 44 years I know they don't know everything. It is impossible. And there is a health risk to every medicine that is prescribed, so when I feel I have no blood in my veins, just medicine, it is with good reason.

Migraine is a disease with no cure. For cabana, if you think your daughter's meds have cured her migraines, medically that is simply untrue. They will either stop working, she does not have migraines and the headaches are a symptom of something else going on, or they will stop working after a period of time.

My only advice is that it is trial and error to find a good neuro who has a migraine specialty - and that is the most important thing - that you can work with, and know that you will go through a lot of meds to find out what will work for you prophylactically, and as a rescue med. The rescues are to stop the pain only when the migraine is acute. The others are to keep the migraines at bay, or at least at a lower level so you can function. Try looking at the website www.migraine.com for good information only about migraines. There are 37 million people in this country suffering from migraines and a very active online community to go to for support and information.

Good luck to all of you, and keep in touch!View Thread

Posted bymymygraine

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Reply: Headache for 7 weeks

If your second neurologist app't is not a neuro with a migraine specialty, cancel the...

Posted by mymygraine

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Reply: The never-ending migraine

Hi lwilso36 - I have had migraines for about 44 years now, and do have one every day,...

Posted by mymygraine

Hi lwilso36 -

I have had migraines for about 44 years now, and do have one every day, although the severity varies from day to day. I have to be careful about what I eat because there are so many foods that will trigger a migraine for me, and I have taken so many different meds over the years, many no longer work, and it is difficult to get a regimen that will keep me, if not pain free, able to do a few things every day.

I have had a 9 day course of prednisone, and it did break the headache cycle I was in, but that was about 20 years ago, and it only worked once. I now take Medrol packs - 2 at a time which is the only thing that seems to have any effect on my migraines when I am trying to break a cycle - and it works, sort of.

Is your neuro a migraine specialist? Some are, some aren't, so if yours is not, go find one that is. This website has some lists which will include docs in your area, and also www.migraine.com is another good online resource for this kind of information.

Everyone is different so what works for one, may not work for another. Many drugs I have taken only work once, and never again. Stress is a big trigger for most people, so plan your schedule with breaks, remember to drink lots of water & eat small meals so your blood sugar does not drop because you forgot to eat. Also keep a diary of everything you eat, drink, and your sleep patterns, because this will help your doc. Also keep track of the migraines, when they start, when the are the worst during the day, when they are the least, and rate everything on a 1-10 scale, 1 being the lowest and 10 being the worst. Try not to over state - 10 as the max I rarely use because who knows when the actual worst will come.

Good luck to you and don't give up. There are new meds and tx's coming out every day. Just be sure you are seeing the best neuro migraine specialist you can see, and not just a neurologist. The specialist really does make a difference.

Check back in so we can keep up with your progress.View Thread

Posted bymymygraine

(FromMigraines & Headaches: Support Group)

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Reply: How do I work with doctors who think I'm drug seek...

HiWalmartsupermom, I think everyone who has chronic pain has been called a druggie or...

Posted by mymygraine

HiWalmartsupermom,

I think everyone who has chronic pain has been called a druggie or drug seeker on not been believed about the amount of pain they were in at least once if not many times. That is what the "Chronic" part of chronic pain means. It means you are in pain all the time, in varying degrees on the 1-10 scale, but if it is at #9 for more than 24 hours then all logic goes out of the window and controlling the pain is the only thing you can think about.

For chronic pain people with migraines, make sure you are going to see a neurologist with a migraine specialty. There are sites with lists of these doctors, and there are also major clinics throughout the US where you can go to get properly diagnosed, & get a treatment plan that your hometown neuro can follow and you can go back to the Univ. Clinic a couple of times of year for follow up if something stops working. I have had 44 years of chronic refactory migraines, about 15-20/mo and have wanted to jump out a window more times than I can tell you.

You must be your own advocate, find a support site like this one, or several, talk to other patients, and if your neuro is not helping, time to find another one who will. There are also neuro's who specialize in pain, and you can see them. Opiods are tough to use because you will always have to increase the dose to get it to stop the pain, and at some point they will cause rebound pain, for which there is nothing to do but put ice on the pain, and wait it out, which is excruciating. There are a lot of tx for chronic pain and more being developed every year.

I have learned that if someone calls me a drug seeker to either ignore them because they are ignorant, and have told some that as well, or just refuse to deal with them.

There is help out there, and living with chronic pain is very difficult. If all else fails talk to your pharmacist. They may be able to give you some home remedy type things like butterbur (herb), cold pack/heat pack tx, etc. to hold you over until you can get to the doc.

Good luck!View Thread

Posted bymymygraine

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Reply: Migraines in the middle of the night

To itmatsb - Thanks for your understanding. Each of our situations are so different, and...

Posted by mymygraine

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Reply: Migraines in the middle of the night

Thanks itmatsb. I am still on the diet more or less, but a new med is making me so...

Posted by mymygraine

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Reply: Rebound Headache

Hi HeadachesSuck22 - First I would ask what kind of doc gave you this information. Are...

Posted by mymygraine

Hi HeadachesSuck22 -

First I would ask what kind of doc gave you this information. Are you seeing a headache specialist, or migraine specialist, or is this information coming from your neurologist or other kind of physician. Before I went into the hospital I would make sure I was seeing a migraine (if that is your diagnosis) specialist, and if not get another opinion. I would get a second opinion in any case.

I have had taken many medications that over the years have given me rebound headaches (now referred to as Medication Overuse Headaches [MOH>). I prefer the term rebound myself, because MOH puts the responsibility on the patient for taking too much medication, when what is happening is that your body is rejecting the medication as a method to stop the headache/migraine.

I was hospitalized once to undergo tx to stop my migraines - at that time I had daily migraines with acute flare-ups. An IV injection was used, and it never broke the migraine during my 8 day stay, and eventually I was given steroids to get me off the IV med. It is certainly faster to go off all your meds in the hospital, because it is done all at once, using other meds to control the withdrawals, and I don't know what kind of meds or how many you are on. But it is also a very expensive way to get off the meds, so make sure your insurance will cover the costs before you do this.

I have suffered from debilitating intractable migraines for 43 years and have had many "rebound" migraines caused by a medication my body is rejecting. There is nothing to do if you are taking a medication that is causing another headache except stop taking it. If you are taking more than one med, who knows which one is giving you the trouble. I can tell now when something is giving me a rebound migraine because of the intensity and type of migraine I get. I have suffered through my share of rebounds at home with no medication to take the pain, and use ice, and other remedies to help the process. It is primarily a question of time, and some have lasted over 60 hrs before I get relief. If you are a type A personality with a high pain tolerance, you may be able to do it at home, but with supervision of your doc, one med at a time.

This has been my experience, and it is only my experience. Everyone is different, and everyone handles pain differently. What has worked for me may not work for you. There are a lot of meds I cannot use because of their rebound effect, and trial and error is the only way I have ever found out.

Good luck, get a second opinion if you are unsure about it, and make sure you are talking to a headache/migraine specialists.View Thread

Posted bymymygraine

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