I'm sorry you need to be here, but glad you found us. I've had Migraines for over 50 years myself, and there have been periods during that 50+ years when they've been chronic. One thing I think Nancy pointed out is that by definition, Chronic Migraine is Migraine or headache 15 or more days a month, at least 8 of which must be Migraine. But, whether we technically meet a definition or not, living like this can be hell.
A couple of things i wanted to comment on from your quesiton...
I don't know of any area with 10 Migraine specialists. If you aren't currently seeing a Migraine specialist, I hope you'll follow some of the links Nancy gave you and consider seeing a true Migraine specialist. For many of us, that has made a world of difference. Doctors are taught little if anything about Migraine in medical school, so we often really have to search for a doctor who understands Migraine disease and how to treat it.
Regarding stress - I'd have sworn stress was a trigger for me until someone challenged me to keep a very detailed diary during stressful times. What I discovered was that stress itself isn't the trigger. There are things I do or don't do during stressful times that are the triggers...
• not drinking enough and getting dehydrated
• not sleeping well
• skipping meals
Once I made this discover, I've been able to avoid having more Migraines during stressful times.
Please keep us posted on how you're doing?
Have you tried taking abortive medication? If not then it may be that if preventative medication doesnt work for you, you could try abortive medication to halt a migraine.
And this is completley random (as I am just a fellow migraine sufferer and not an expert) but have you tried keeping a food diary? It may be that there is something that you are eating that is repetetivly triggering your migraines.
I'm sorry to hear that you have been suffering for so long and hope you can find something to help!
I'm sorry I didn't get to you before you saw your doctor. I've been down with Migraine pain for a few days now too. How did the appointment go?
I can give you a few things to suggest and it is really important to break the current three day cycle you are in. Unfortunately, there can be times when a Migraine just doesn't respond to the medications we have, and it goes on and on. If your regular medications haven't stopped this Migraine by now, it's time to call your doctor for help.[I know you just saw him the other day, but if he didn't suggest any of these, call him back] Sometimes, a steroid taper such as a Medrol DosePack will break the Migraine. Sometimes, the best treatment for intractable Migraines that aren't responding to medications is IV infusion therapy to get the cycle broken. For more information, see IV Treatment of Refractory Migraine. A Migraine attack lasting longer than 72 hours is often indicative of "status Migrainous" a condition requiring immediate medical attention due to an increased risk of stroke. You can read more about that in, Status Migrainous - The Basics.
A word about specialists- they are not all created equal. And here's what I mean - neurologists aren’t necessarily Migraine specialists, and Migraine specialists aren’t necessarily neurologists. Furthermore, neurologists may be fine doctors, but have a hard time being experts in one area. This is because they treat so many conditions like MS, epilepsy and stroke. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. When you get a chance, take a look at article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists. You may need to travel outside your area as there are only 290 Migraine specialists in the country. There are many members here who travel well over eight hours to see the Migraine specialist they work with - then have a local doctor continue with the treatment plan the specialist provides.
I know how easy it is to feel as if you've tried everything out there, but there are so many medications that can be used for Migraine and headache prevention that it's literally impossible. There are now over 100 medications and supplements that can be used to treat Migraine and headache disorders. The frustration of trying to find what works for us can make it seem as if we’ve tried it all, but with so many possible preventives, it’s literally impossible. You can find a list of potential Migraine and headache preventives in Migraine preventive medications - too many options to give up!
Trigger identification and management is a vital component of managing Migraine disease. One of the best tools for identifying triggers is a good Migraine diary. You can download a free diary workbook from our article Your Migraine and Headache Diary. Some of us have food triggers; some of us don't. It's advisable to determine if your daughter does, and an elimination diet is the best way to do that. For more information and a workbook on this, see Managing Migraine - Migraine Trigger Foods. If you haven't kept one in a while, it may a good time to start a new diary. I really don't think some doctors emphasize this enough.
Chronic Migraine is defined as having tension-type headache or Migraines 15 or more days a month. Botox is FDA approved for chronic Migraine, something you may want to keep in mind. For more information on chronic MIgraine continue reading, Chronic Migraine - The Basics and for information on Botox, take a look at this article when you have a chance, FDA Approves Botox for Chronic Migraine.
I hope this helps, let me know how you are doing, OK?
I am so sorry to hear you suffer so much with Migraines! And so often.
I live where the weather blows through at an alarming rate, so I often have weather-related migraines. (Grrr! We can't change the weather!)
I do hope your appointment went well.
It is a good idea to watch a few things, that could be a cause/trigger.
Food allergies can be important, I discovered I have a wheat allergy, and am gluten intolerant. I also have learned to avoid anything with MSG, and the atificial sweetener that is everywhere now-aspartame or nutrasweet.
Also caffeine (too much or too little).
Plus, hormones can be a cause as well.
Too many things can affect us!
I have done some research, and what helps me is to stay on a constant regimen of Feverfew. The standardized type. The only medication that I know it interferes with are blood thinners (warfarin, coumadin).
I found a study, online, that proved if you take the Feverfew regularly you can cut how many migraines you have in half. I am sure you can find the same information if you want to.
So I have found some relief. Have you tried Feverfew?
You also might want to research something called petadolex or butterbur at the health food store. To see if it is something that can help you.
Until then, hang in there!
I've had migraines for nearly two decades. I've had year long periods where they were chronic and I and those around me suffered becuase of them. As everyone suggested here, a diary, identifing your triggers, lots of water and seeing an actual speaclist in migraines makes a world of difference. Yet, they still come and I've tried nearly every medication including botox that's out with varying levels of effacy. At the moment I've been using an herbal called Migramedic that contains, Lavender, Myrabolan fruit and other ingrediants. It's worked extremely well. ( 3 migraines over the last 3 months) Even now that they are undercontrol I still cary abortive and rescue medication with me. I'm still seeing my migraine speacialist and avoiding triggers while keeping that faithful diary. ** If you try Migramedic, be forwarned that it takes a few weeks (yes weeks) to get the product in and it's only a preventitive. This site and the members on it have alot of insight and all, including my self have stood in your shoes sort of speak.
I've been in your position; still am in fact. I've had migraines since the 70's. For some of us it is a endless path to find a solution.
In the meantime, what happens to our lives? It's not just the pain, it's the questions we find ourselves asking internally - why is this happening to me? what will happen to my family? to my future? who can rely on me? Medicine, if it can help, cannot address these questions.
I've been through this and managed to emerge whole. There is a whole other side of migraine management which can be addressed outside the medical system -- improving your quality of life.
I can talk abouut this further with you.
Hi MeetingBetty ~ I really hope that your appointment with your Doctor went well. In your post you indicate that you were on your 3rd day of a migraine. That's too long....I am praying that your doctor arranged for you to have an IV Infusion to break the cycle that you were in.
We've all been there and know the hell that it is. I'm so sorry. I've been diagnosed with Chronic Migraines since 2006. And my triggers are also 90 percent weather related ~ too hot = migraine; too cold = migraine; rain coming = MASSIVE migraine...you get the picture. I can't control the weather, however, I keep very close track of it in my migraine diary along with how stressful my day was and how much sleep I got.
Another thing about Chronic Migraines, if you've been prescribed any pain medication, it's very easy to get into a habit of trying to reduce your pain by taking them. However, this can lead to a medication overuse headache.
I'm sure I'm not telling you anything that you don't already know! Again, I am so sorry that you are suffering with these. I know exactly what you are going through! Look at the list of Specialists that Nancy provided the link to. The specialist I go to is 3.5 hours away....but worth it!
I can so relate to your story. I've had migraines the past 20+ years, but the past 2 1/2 years have been pure hell-almost every day I've had one. I've been to about 4 neurologists and 2 regular MD's. I'd pass up on regular doctors-they have no idea what to do. Neurologists are a little better but unless they've had more training in the the migraine field your not going to have much luck. I even went to the Diamond Headache Clinic in Chicago Illinois in 2008 and they ran some tests and basically just experimented on me trying different medication combinations on me. I cannot stress to you how important it is to keep a daily diary to track food triggers like MSG, Nitrates, for me I also have a Soy Trigger. Get a good book that will tell you all the hidden names for MSG cause they will NOT print on the label clearly anymore as MSG but hidden names like Glutamic Acid and a tons of other hidden names. Go to: http://www.truthinlabeling.org/hiddensources.html because MSG is one of the biggest known triggers for migraines. But keep track of all your food and how you feel within 12-24 hrs after eating those foods. Try an elimination diet if you think certain foods are your trigger. Join the National Headache Foundation (NHF) as they have tons of research on this as this site does as well on how to do an elimination diet and follow the Headache diet to see if that helps you. In your diary keep track of when you go to bed and wake up-keep the same sleeping schedule and never alter it. Cut down on your caffeine and keep track of that as well. Also the weather-if it's hot and humid, storms and the barometric pressure-those are triggers you can't change but can factor into your migraines. My current neurologist was referred to me by my therapist and he has been great. He too has suffered with migraines so he is more empathetic and I can take in what I've found online and it's a better working relationship. He is a Godsend. But before I met him I've tried tons of stuff-Meditation, acupuncture, massage therapy, biofeedback, homeopathy, herbal, vitamins, chiropractic-too many things to list. My neurologist has just started me on Oxygen at 6 liter per min at 15 min sessions at home as an abortive along with a new nasal pain releif medicine called Sprix. I can tell a difference when I start to feel one coming on I put on the O2 after using the Sprix and usually it will nip it in the butt or delay it for a while and if it comes back and I can't use the Sprix again (have to wait 8 hrs between doses) if the O2 doesn't work then I have my backups to use. But I have the Migranal nasal spray. It works better than the triptans but it will put you to sleep. Just a few suggestions. Warning though, if you get an RX for Migranal go to their website and get the mfg coupon 1st cause that stuff is way too $$$$$$$$$$ Well, the Sprix is not cheap either their site has a mfg coupon too but not as good as the Migranal coupon. I hope these suggestions help you a little, but what works for some doesn't work for others. Dont' get discouraged. Keep researching online and asking for referrals to a migraine specialist if there are any in your area or if you have to travel. Diamond Clinic was about a 2 hr drive 1 way from my house. Was it worth it to me? Not really. The traffic and upset in my schedule was a trigger for me-but if your up to traveling it's worth a shot if your up to it. Hang in there and will be keeping you in prayer.
I too suffered from chronic migraines for over 20 years. Amitriptyline curtailed it the best, with the least side effects, but what pretty much stopped the migraines was menopause. Not only are the migraines gone, but I feel physically and emotionally better that I have since I was age 10. I knew that hormonal changes was a major player in my migraine problems, but when I mentioned it to Dr.s they just shrugged. If I had it to do over again, I would insist on tests to check on my hormone levels. Maybe something could have been done to level them out. The only migraine trigger that I still seem to have is weather changes.
My daughter with 3 years of chronic migraine of very high constant disabling pain throughout her entire head and face has found significant relief using 2% lidocain solution: 0.5 ml sprayed into each nostril, 3 x a day.
Her pain has decreased from a constant score of 8 to 10 (a as she says her "meter" goes to 11 frequently) to a score of 4. She's only done this for 2 days and we've yet to really get into a consistent dosage of 3x a day (it's been difficult to find a pharmacy with the lidocain, but her primary is supplying us in the meantime). BUT - it has broken the constant pain.
According to both her specialist and primary, lidocain has basically no side effects except for the uggy taste when it drips into the throat (which a good atomizer avoids). And it worked in minutes!!!
If you chronic migraine is episodic, lidocain may even be more useful to get out of the episode.
We're going to try a regime of lidocain for about 1 week - 3x a day (as stated above) to see if her constant 3 year headache can actually be stopped completely and turned into "only" an episodic migraine with periods of relatively pain free periods inbetween.
Anyway, try the lidocain. I think the adult dosage would be to use a 4% solution (as reported in the medical literature).
Look into occipital nerve blocking also - the lidocain idea came out of thinking about this procedure for our daughter.
I know what you mean. I was born with migraines. When I was in my 50's they developed into chronic migraines. I have them almost every day. I've tried many evil drugs and told my neurologist I needed something very different. He has started using Botox on some patients. We went through a long process for 3 months to get insurance approval. Even though it's FDA approved, that doesn't mean they will say yes.
I had my shots 3 weeks ago and have had only 2 migraines. That's a record for me. The shots aren't easy--23 all around your head just inside the hairline, in your shoulders and center of the neck.
Hi Betty, I suffer chronic migraines as do you. 20 years of suffering. I had thought that I had seen every nurologist, Dr, acupunture, chiro and quack Dr. Nothing worked. I also developed a serious scent allergy and lost my job of 12 years, not from missing work! I stumbled onto a dentist in Kelowna Bc who trained in TMJ. In Canada there are only 3% of dentist that can really help with TMJ. Long and short of this is I paid for an appliance that will realine my jaw as the jaw muscles run up to the temple and Yes, cause migraine. I have been working with Dentistry by Design and they know who to see in the USA as well. It was worth the money I paid to get results that had not been seen in 20 years. I had migriene every day!
I thought my life was over, not so sure now! Good wishes, Jodie
Hi Betty im in the same Boat, i was taking on avarage about 6 to 12 100mg Imigran a Month, what mine generally are were i woke in the morning and soon as i started moving or the first initial hr id have a dull headache, which in most days woult either subside or gradually build, I knew that Imigram would releive it in 70% of the cases.
Now some morning i used to wake with what i called the ACHEY one, these Imigran was 30% effective, these i didnt like i normally had to aleep it off or push myself. I can work at home so it was a godsend.
So before anybody comments ive tried cold turkey ive tried most preventatives
and other, none worked.
I eventually saw a specialist local to me in the UK who prescribed me methysurgide and wowser i had 6 months with only 3 Imigram. BUT you do need to take a break every 6 months for bloodtests etc as a mesaure of safety.
if you havnt tried them see your GP and ask, Most UK GPs dont know about them, One thing to note if you do, RIDE the sicki feeling out for the first 4 days then its easy it goes away.
unfortunely for me i have one today, as i seem to have boughts of 2 weeks where i get lots then they go do the daily thud.
I will however be looking at Botox next year. let me know how you go.
Ive also tried all food allergies etc, but as my professor said, some of us have genetic issues that cant be cured just helped, just dont baffle yourself thinking it could be a trigger, because if your like me and after 20 years your still the same, its probably in your genes.
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