Has anyone been diagnosed as being stuck in a migraine?
I have, “stuck” being having pain 24/7 and varying in degrees. The major triggers are being vertical and the weather.
Cold weather is worse than warm weather but pressure and changes in the season are not easy to take.
I have had multiple tests and medications. So far nothing.
I hope that I am not alone with this style of migraine. It has been 16 years non-stop….so tired of pain!
I have been diagnosed being “stuck” 24/7 with a form of migraine. It started a couple days after the tailgate corner of my PT Cruiser hit me in the head and cut my scalp. It’s been non stop almost 8 years since then. During that time, I’ve had physical therapy for the neck and head, acupuncture, different meds and tests. The only medication that has given me any relief is Gabapentin and am on a large dose of it now, which makes me tired. My current and 4th neurologist is going to keep upping my dose to try to get my nervous system unstuck. He was the first neurologist to diagnose me as being “stuck.” I was switched from Zoloft to Cymbalta, which is supposed to help pain. That did not make any difference. The only weather that makes it worse is when it is hot. Moving around a lot also makes it worse.
I am 70 yrs old and had to retire early, because of this. I don’t get anything done, and my husband has been doing the cooking and cleaning, etc. I hate to think of having this as long as you’ve had it!!
Thank you for sharing your story with us, I am however, sorry to hear you are having a difficult time. Let me see what information I can give you that may be helpful.
My chronic migraine was triggered when I fell and sustained a traumatic brain injury (TBI) from a fall. It’s been a long road with migraine disease and chronic head and neck pain along with a few other chronic conditions. I’ve failed many, many medications for migraine attack prevention, and took methadone for 3.5 years, which is not a great alternative. Opioids mask pain, they don’t stop the migraine process.
I did want to mention when we start new medications, it can take up to 90 days before we see a reduction in our migraine attack frequency and severity. And during this time potential side effects may lessen. And each time the dose is changes, it may be while before we see a difference in our migraine attacks.
It’s not easy giving up our career to migraine disease, I’m on SSDI and it’s been an interesting journey. Having a good support network is important when dealing with any chronic condition. Is your doctor supportive and does he listen to you? If not, it may be time to find one who will. As I mentioned to lynni, neurologists are not necessarily board certified in headache medicine (even if they claim to be experts) which is different than being certified in neurology. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. I’m currently seeing my 5th true expert and finally think I may be getting somewhere. Here is information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
But, don’t lose hope! Gabapentin is used for migraine prevention in addition to 100 other medications and supplements!
Thank you for replying. The neurologist I am currently seeing is also a headache specialist at a well known medical center in my Southern California area. In fact, when I clicked your link to find one in my area, his name popped up. I recently started Botox shots with him, but the first round didn’t do much for me. He is going to have me go through one more round of Botox shots to see if they will help.
I’ve also had a sleep study, which revealed that I have a very mild case of sleep apnea.
I tried many meds before going on Gabapentin. It started helping me in about a week. That was 3 or 4 years ago, and now I take 900 mgs 3 times a day. My headache specialist’s assistant just doubled my dose of Amlopidine from 5 to 10mg. She said to document my blood pressure everyday.
I hated to retire from my county government job early, because I liked it and the people there. To be able to collect my pension, I had to work over a year after my non-stop migraine started. That was very difficult, to say the least!! I never tried to get disability, though.
Thank you for being an advocate for people with our medical issue, including yourself.
I hope you don’t have yours as long also. I have tried Gabapentin. Didn’t work for me, plus my body is real sensitive to medications and their side affects. The only relief I got was when I was taking Methadone. But I was taken off of that over a year ago.
I didn’t hit my head or anything. Just had a migraine and it never stopped.
I’m only 57 and I had to stop working. I can’t be dependable to show up or even stay at work. I never know from one hour to the next how bad it will get. And I enjoyed working. Oh well…I. am glad that you have found some ease.
I am on my 4th. doctor also. 2 neurologists and 2 headache doctors. Waiting on the new drugs that are suppose to be put soon.
Then will be back to trial and error again…lol
I hope they can get you unstuck soon. Ill be praying for you to be back to normal as soon as possible!!
Welcome to the Migraine.com discussion forum! Thank you for sharing your story with us, however, I’m sorry to hear you’ve been in extended pain. I know that is frustrating.
The first thing that comes to mind is it sounds like it’s time to seek out the help from a migraine/headache expert. I see you mentioned you’ve seen two “headache” doctors, were they “true” experts? These doctors are board certified in headache medicine, which is different than being certified in neurology. Many neurologists may claim to be a “headache expert” but that may not be the case. Neurologists are fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. I’m currently seeing my 5th true expert and finally think I may be getting somewhere. Here is information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
I was on methadone for 3.5 years but that was a number of years ago. Pain medication is not the best answer for migraine disease as they mask the pain, not stop a migraine attack. There are a number of medications (IV infusion) that can be used to break a nasty migraine cycle, let me share them with you here and I would encourage you to discuss them with your doctor;
Brand name Decadron, or dexamethasone
Brand name Depacon, valproate sodium
Brand name Inapsine, or droperidol
Brand name DHE-45 or dihydroergotamine
Brand name Keppra or levetiracetam
Brand name Phenegran or promethazine
Brand name Regaln, or metochlopramide
Brand name Ultram or tramadol
How about triggers? Have you been able to identify any? Triggers can include but are not limited to certain foods, dehydration, skipping meals, and irregular sleeping schedule, lighting, odors, changes in the barometric pressure, and fluctuating hormones. Keeping a detailed migraine diary for three months or more can be helpful to identify these triggers and any patterns our migraine attacks may have. This article has more information on how to keep a diary; https://migraine.com/blog/keeping-migraine-diary-basics/.
Try not to lose hope! There are over 100 medications and supplements that can be used to treat migraine disease. And if we add up the combinations, that number goes way up! I’ve been on quite a few of them, but am currently getting Botox every three months which has cut my migraine attacks in half most months! When you get a moment take a look at this article about migraine prevention medications; https://migraine.com/blog/migraine-preventives-start/.
I’ll stop now and give you a chance to read this – please let me know what you think!
Hi, I am new to this forum. So glad to find it. I am 52, and had never had a migraine until about six weeks ago. One afternoon it hit me and it hasn’t stopped since.
It isn’t related to an accident. But I did have a hysterectomy last year, after which time I’ve suffered from severe menopausal symptoms. Could cessation of hormones be related?
I saw my pcp doctor after almost two weeks of unabated migraines. She gave me sumatriptin and told me to take excedrin, which didn’t help. Took it for 24 hours, 3 times.
The next day I had to go to the ER so they could stop it. Not sure exactly what potion they gave me as it was 2 am and I had waited 8 hours to be seen; I do recall one drug was reglen (don’t know if that was just for nausea) and something else. Great. Migraine went away.
Left hospital. Four hours later, back it came, and has basically been consistent ever since. I say “basically” because I take meds for sleep and once I go to sleep, it seems to go away by the time I wake up. But then when I start moving around, it just ramps up again.
It does help somewhat to keep blinds drawn, low lighting, etc., but only to the point of making something intolerable barely tolerable. Gets progressively worse as day wears on usually cranks up by 4 pm to being worst and goes on from there. Does anyone find it worse in afternoon/night?
I can definitely sympathize with those who have had to quit their jobs as a result. I haven’t been able to do much around the house, and going anywhere is torture.
Welcome to the Migraine.com discussion forum! We’re glad you’ve found us too!
I’m sorry to hear you are having such a rough time right now, I understand how frustrating it is to be in constant pain. It can be tortuous to live with chronic pain for sure. Life is much more difficult living with any illness.
Are you by any chance taking something every day, or near daily to help relieve pain? The thing is we can increase our risk of rebound headache if we take migraine medications (sumatriptan etc.) and/or pain relievers, whether they are over-the-counter or prescription more than two to three days a week. If we are in a rebound cycle our migraine attacks may be more difficult to treat and we can end up in a daily cycle of pain, that just plain stinks! I’ve been here, it’s not fun, but can be dealt with. Let me share this information on rebound (or medication overuse headache) with you I hope helps; https://migraine.com/living-migraine/stop-rebound-headaches/.
Let me know what you think and have a good day!
I’m sorry that Gabapentin didn’t work for you. Even though it doesn’t get rid of my migraine, it has helped enough to get me from constantly lying down to getting up sometimes during the day and being able to drive.
Thank you for the info that you gave me. unfortunately I have been through most of the medications you put down, plus extra…lol I was on methadone myself for over 10 years. I could function, but that was about it. and that was only if I didn’t push myself too hard. I also am on SSDI. The doctor that I am with now came from Johns Hopkins. He is a headache specialist, but he is very busy and communication is hard. Because I have so many allergies and am very susceptible to side affects I am on my own until new medications come out. I have done infusions, nasal inhalers, and so many different medications with no help. My sleeping isn’t the greatest. On the methadone I was only sleeping 1 1/2 hours a night; now I am sleeping a bit more. On good nights I can get a total of maybe 3 hours, but it is broken. I know that it isn’t helping my headache, but I can’t sleep any more than that.
It is nice to be able to talk to people that has an understanding of the pain migraines bring along with everything else.
And it is nice to share our stories and what helps each of us cope with everything.
Thank you again for sharing with me.
May you all have great days and nights ahead of each of you!
Helllo, thanks for sharing. It. Seems like so many struggle and have a real hard time finding relief. I am 55 and also struggling. I want my old self back, does. Not seem to be in the cards. How do you approach dr. When Mmeds do not. Work. Also do you rest during the day like on weekends . Ido but feel this is lazy and not sure actually what do to, I think if I rest on weekend I can “get thru” the work week which is pretty much all I am doing lately. Thanks for your suppor7, no one around me understands. Steph B.
If we have four or more severe migraine attacks a month, it’s time to discuss migraine prevention with our doctor. There are over 100 medications and supplements that can be used to prevent migraine. Here is an article to get you started; https://migraine.com/blog/migraine-preventives-start/.
There are also medications that can be taken at the first sign of a migraine attack, called abortives, that stop the migraine process, not just cover the pain. These can be taken two to three days a week but no more, to prevent rebound headache. Abortives include triptans, Midrin equivalents and DHE. You can read more about them here; https://migraine.com/blog/migraine-management-essential-5-abortive-treatment/.
I find short naps to be helpful, but if I get too much sleep, I may trigger a migraine attack. Keeping a regular sleep schedule is essential for people with migraine disease. Our sensitive brains don’t like change so anything we can do to maintain a regular schedule (this includes eating, and drinking water) will help.
I am 53 and recently diagnosed with Chronic Daily Headache from migraine and migranous sensory aura. What a mouthful!. All that means is I too am stuck in a migraine as well at this time. But certainly not as long as most of you. It has been just under six months for me. It is a little depressing reading about the length some of you have been in the 24/7 migraine cycle. My migraine can range from mild to severe depending on the day.
Mine started on the way home from our cottage, about an hour into the drive. I was not the driver thank God!. It started with a sensation as if something was crawling ( a weird tingling) under my skin from the back of my scalp to my face. Then a face ache much like a sinus headache. All on the left side of my head. Then the sensation started down my left arm. I was quite concerned – no hospitals in sight! I thought I might be having a stroke. But I could talk without slurring and I could stick out my tonque and it wasn’t crooked, etc. The headache soon became much worse and affected my entired left side of head and ear and the bright sunny day became my worst enemy.
Needless to say since that day I have had a MRI and a CAT scan to prove it was not a stroke, I do not have a tumor, my vascular system in my head is great, etc. It was a neurologist in January that gave me the diagnosis. She tried me on Topiramate but I had some cognitive side effects two months in that made me not willing to continue on the med. I don’t see her again until mid April to see what else she might have in store for me next I am unable to take the med in the triptan family due to a mild heart valve thing. My only recourse so far has been Tylenol Extra Strength, which is limited to no more than 15 time a month, and I have been seeking out alternatives to lessen the symptoms such as essential oils, ginger tea, and a ice pack. I am very sensitive on the left side of my scalp now and have not used my CPAP machine since January as the straps put pressure on the scalp which makes the migraine worse. I no longer am employed as well as I was unable to do the hour drive in the dark to get to my place of employment with the light sensitivity.
I am feeling a little overwhelmed with this new lifestyle that I have been thrown into and don’t know which way to turn anymore. Any and all help will be welcome. I live in Canada in case that makes a difference with the advice.
Thank you for allowing me to voice my concerns.
We are all here for you. This site has been very helpful to me. It’s nice to have people to vent with that are going through the same things I am. Topamax (also known as stupimax) made me feel so stupid I had to get off of it. I hope your neuro is able to find something to help you. I’ve been on a huge list of things so don’t give up. There are lots to try. I’m on a mixture of prevention medications and will be getting Botox in April. It didn’t work for me in the past but I’m hoping it will progressively work.
If we can be of any help or just a sounding board please just post something. Good luck!
As a neurologist at one of the major headache centers in my region, I see a lot of really tough headache and migraine cases. The tough part in treating them is that a lot about migraines is still not fully understood. They are believed to involve the “trigeminovascular” system, which is different for migraineurs (people prone to migraines) from those who cannot have migraines.
The bad news is if you have the circuitry in your brainstem for migraines to be triggered, it’s something you’re stuck with and you will never fully get rid of your migraines. The good news is you CAN get migraine relief and markedly change their frequency by identifying and isolating the common predisposing factors that may be triggering them.
To help you begin managing your headaches today, I have compiled a list of the 11 migraine triggers that I see most often, along with tips on how to avoid them. Following these guidelines won’t cure you from the migraine cascade completely, but it will help you take control of your migraine headaches and minimize their onset.
Stress. Stress itself may not be the trigger, but rather our reaction to stress. Anxiety, worry, psychological tension, emotion changes, anger, depression, and neck muscle tension are all responses to stress and can trigger a migraine. So, take a break, even a brief pause, and look upwards. When we are stressed, we often times focus on those things just in front of us. Since our brains process a negative thought a hundred times faster than a positive one, we focus on the negative and assume the posture of fear (hunched shoulders, frown, internally rotated arms and shoulders, and tension in our neck and shoulders). Instead, if you look upwards, you force yourself to consider a more global view and “get outside of yourself”. Creating an effect similar to that which comes from meditation, pausing and averting the eyes upward will help you manage your reaction to the stress you are feeling in that moment.
Weather. People prone to migraines are more sensitive to all kinds of stimuli about the head, like hot or cold air, sunlight causing localized heating of the scalp, and photosensitivity as the migraine cascade occurs. Weather changes, primarily the drop and fluctuation of barometric pressure before and during a wind, rain, or snow storm is a well-known effect. But, the reason why this triggers a migraine is still not fully certain, making it a tricky thing to deal with. Since you can’t control or avoid changes in weather and we don’t fully know why it leads to a migraine onset, all you can do is try to minimize it’s effect. Stay indoors to avoid extreme temperatures. Drink a lot of water to avoid dehydration during hot or dry weather. And most importantly, limit other triggers. If a big storm or extreme heat is predicted in the forecast, work to limit all other migraine triggers (which you can control) to optimize your migraine prevention.
Hormones. There is a known correlation between hormone changes in women and headaches. For example, during menstruation, the drop in estrogen levels will often trigger headaches as does beginning to take birth control or another hormone replacement therapy. Conversely, pregnancy causes a huge increase in estrogen levels. So when a woman who has migraines becomes pregnant, her migraines are likely to do one of two things: vastly improve or stop altogether. After the pregnancy is over, the headaches often will return. How to fix this? Low estrogen birth control can sometimes help, as can estrogen patches worn only just before and during menses. Speak to your ob-gyn for suggestions on both of these.
Change of routine. Weekend migraine or vacation migraine are well-known phenomena. They come about with the change of routine and increased relaxation after a week or period of time of hard work. Not getting enough sleep or sleeping in, both acts as powerful triggers of the weekend headache. Any type of travel including the jostling of a train, changes in airplane cabin pressure, and excitement can all be triggers, so many patients suffer on their vacations. The body likes comfortable routine. Try to keep one, even on vacation.
Bright Lights and Sun Glare. Bright lights such as the strobing effects of video games or the lights of TV/computer screens can trigger migraines. Simple steps such as taking regular breaks from video games, computers, or TV, using an anti-glare screen, and setting good lighting can help minimize the effects of lights on your headaches.
Air conditioning. Some people with migraines cannot tolerate air conditioning for various reasons. Dehydration, muscle contraction, the circulation of allergens – all things caused by the cold air and can trigger migraines. If you already suffer from migraines and headaches, the best thing is to avoid highly air conditioned places.
Noise. When you are prone to headaches, all kinds of noise can trigger it to be worse. Excessive bass in a car, lawn mowing and office machines, knitting needles, or even someone chewing celery next to you can be a killer when you have a headache. Ear protection, head-sets for telephone conversations, and keeping noise at a moderate level can help.
Low blood sugar. Low blood sugar can be a headache trigger. This has more to do with not eating regularly. Whether that results in low blood sugar or not, skipping meals or fasting can be a powerful trigger for individuals prone to migraines. The best avoidance is to eat regularly throughout the day.
Eyeglasses. Wearing the wrong prescription can trigger a headache, so get your vision checked regularly to make sure your prescription is correct. Just remember, your eyes dilate during a headache, so they are out of focus. Because of this, you don’t want to be examined by an eye doctor just before, during, or after a headache.
Anesthesia. Many people will wake up after surgery with a blasting headache. Let your anesthesiologist know if you have headaches and they can give you different products to put you to sleep that may not have as high a chance of resulting in a headache.
High blood pressure. Sometimes, headaches can be a sign of something much more serious going on. Extremely high blood pressure, the kind that puts you into the emergency room, can cause headaches. Have your blood pressure checked on a regular basis by a competent health professional. Remember- one of the most common causes of hypertension in the United States is sleep apnea – so consider seeing a specialist to have your sleep assessed.
The thing to always remember is that these triggers aren’t the cause of your migraines, but merely the “straw that breaks the camel’s back” in patients who have the circuitry to have migraines. What enables them to trigger the cascade is frequently predisposing factors of neck problems, and sleep and sleep position problems, which increase the vulnerability and sensitivity to those triggers, and thus allow them to act as accelerants.
So, use my tips to help you curtail your migraines, but if your migraines are getting worse no matter what you do, don’t be afraid to see a headache specialist about them. There are many approved medications that can be used for migraine that will help you “put out the fire,” as you and your headache specialist investigate predisposing factors important for you.
Lynni, I almost never check this forum because I’m not over 50, so you may not see this as it’s an old post, but I saw something you said and felt I had to respond…
You mentioned one of your main triggers was being vertical. Has your headache specialist ever discussed with you the possibility of CSF pressure problems potentially being an issue? Positional headache (where your headache spikes or changes with a change in position) can be an indicator that your cerebrospinal fluid levels (the fluid your brain and spine swim in) could be too low or high. This can cause all sorts of major headache problems, and if you have migraine as well, exacerbate it. Just something I always mention when I see someone mention positional headaches because it took me three years to get correctly diagnosed as having low CSF pressure comorbid with migraine. It’s a rare problem, and often missed.
Sorry to hear you have also joined the pain club. And yes, I have been checked multiple times for CSF leakage. None.
Waiting on the new drugs that are suppose to be released this year…
Eptinezumab (Alder); Erenumab (Amgen); Galcanezumab (Lilly);
Erenumab has been released by FDA last month, just waiting on insurance to pick up the medicine now. According to my Dr. it cost for the drug is $575 a month or $6900 a year and we are not even sure if I can take it.
Another one is suppose to be released this month. From what I have read about them they are suppose to be low on side effects and work on CGRPR’s.
Hope they are available soon…
Thank you for thinking of my situation….my hope for a speedy recovery for you.
Sorry to hear you have also been “blessed” too. How long has yours been going on for? I hope you have a good doctor that cares and tries to at least help in any way they can.
The weather this year so far has not been our friend and my heart goes out to everyone that has to deal. It’s not easy and very disheartening. Most people do not understand how hard you fight to pretend to be “normal”. How difficult it can be to just do every day chores around the house or even just to sit up and talk. But one thing that is sort of good is you find out how strong you really are. Everyone of us should be proud of ourselves for that. It may sound silly, but I found that appreciating the good things that we have, even the small ones, do help mentally.
Sorry about my rambling. If you need to talk….I’m here.
Please take care and keep fighting.
I have been diagnosed with Persistent Aura Migrain without Infarction. Im sure you all know what that is a migraine without stroke. The only way I can describe it is that I have most of the symptoms of stroke without the face droop and the migraine pain on a daily basis. I struggle with verbal communications I can not form words, find words. My cognition has declined immensely, I stumble alot when I walk because my feet are numb Im constantly fatigued. I have been like this since January 2018. Ive since lost my job because of the cognitive issues. My doctor finally caught on to it last week because I had a little headache and I was completely symptom free. I took something for the headache and the symptoms.can back. He started me on Lemictal. He is not certain if I will ever get out out of it. Funny thing is the meds side effects are similar to my symptoms. Im sorry, Im probably off topic I just wanted to say that yes it I believe you can be stuck in a migraine. Im so very sorry that everyone has to suffer something so ghastly
Thank you for sharing your difficult journey with us. That sounds incredibly frustrating, I’m sorry you are going through this. It’s true, you can be stuck in a nasty migraine cycle for what seems like ages.
i wonder at this point if it’s time to see a true migraine/headache expert, rather than a neurologist? Here’s the thing – neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. A true migraine/headache expert is board certified in headache medicine, which is different than being certified in neurology, and may not be a neurologist. I’m currently working with my 5th true expert and finally think I’m getting somewhere. Let me share these articles with you on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
It’s good to know we’re not alone, better to know hope is out there!!
its such a comfort to know people do get stuck in migraines
it gives me comfort to know someone else does
ive had visual migraine for 3 years now and this hot weather has certainly made it worse
hope you have a break from it soon
Because they generally are harmless and typically resolve on their own within a half hour, ocular migraines usually require no treatment.
If you are driving or performing other tasks that require good vision when an ocular migraine occurs, stop what you are doing and relax until your vision returns to normal. (If you are driving, pull off to the side of the road as soon as you can safely do so, and wait for the vision disturbances to completely pass.)
If you experience visual disturbances that are part of a migraine with aura, or you want to prevent future ophthalmic migraines or migraine headache attacks, it’s a good idea to see your general physician for an exam and advice.
Also, you should consider having a comprehensive eye exam with an optometrist or ophthalmologist whenever you experience unusual vision symptoms to rule out sight-threatening conditions such as a detached retina, which requires immediate attention.
Your doctor can advise you of the latest medicines for treating migraines, including medicines designed to prevent future attacks. People who experience migraines that last longer than 24 hours or who have more than two migraines per month generally are good candidates for preventive medical treatment.
It’s also a good idea to keep a journal of your diet and activities just prior to your episodes of ocular migraine or migraine with aura to see if you can identify possible migraine triggers that you can avoid in the future.
How smoking harms your vision.
If your ocular migraines or migraine headaches appear to be stress-related, you might be able to reduce the frequency of your migraine attacks without medicine by simply:
Eating healthful meals on a regular basis
Avoiding common migraine triggers
Getting plenty of sleep
Trying stress-busters such as yoga and massage.
I’m right there with you. I’m 50 yo
I’ve been to 5 headache specialist and I still have a severe daily headache.
Not fun! Not giving up!
I tried cymbalta and it made me
Suicidal. Neurontin does the same.
I’m trying out of pocket IV ketamine
Treatments 3 times weekly for 2
Weeks. Something has to help the pain. 🙏. Then in a few weeks seeing a neurosurgeon in Boston
To discuss a nerve stimulator. My
Migraine doc now says he has had
Good luck with them ( for migraines).
Does it ever end?😢😢
Yes, one of my specialists that I have seen has been from Boston.
I have had 2 docs say the stimulator is my best approach now.
After so many meds, surgeries,
Headache specialist consults, it was either that or live on opiates
Every day. My 1st treatment was
Today and it has brought my migraine level down. I’m not looking for perfection. Just not 10/10 migraine pain every day. Taking it
One day at a time.