Cluster Headaches and Migraine Combined: A Hell on Earth Experience
While at work this past week I was afflicted with a classic migraine on top of a cluster headache. It landed me in the ER and eventually admitted as a patient in the hospital where I work. The pain was incredible and when the photophobia and nausea hit on top of the incredible pain of the cluster, I went down for the count.
The cluster was already in its second week but the onset of the classic migraine was an event I hadn't experienced in a very long time and it took me off guard completely. It seemed as soon as I felt any pain relief, it would again rebound with a vengeance that surpassed the previous wave.
The nausea and sensitivity compounded. I could count the nasal hairs in my right nostril. I could count the strands of hair on the right side of my head. The beat of my pulse in the right temple was excruciating and the tearing and coldness around the right eyeball and the searing pain behind the right eye was incredible. I felt like I had to sneeze very badly but just couldn't. There was a pressure against the bone in the right side of my nose that would not go away.
After a while, I didn't care what they did to me. Take me out of my misery. That may sound melodramatic to a reader of this blog--but only if they never experienced clusters or migraine headaches. If you have ever had one, then you would know what I am talking about. Have one episode and you feel wiped out. Keep having them over and over again and you feel totally depleted.
You will have experienced a hell on earth experience. Right now, I have been told I also experienced a touch of viral meningitis on top of everything else. And this has really wiped me out. I am striving to get my health back and get on with my responsibilities of life and work. As I get stronger, I will blog on some of the the experiences I had along this road--as a nurse--as a pain specialist--as a patient in a place where I work...it hasn't been easy in any one or all of these roles.
But right now, I need to try and focus on getting better.
Related Topics:
Technorati Tags: migraine, cluster headache, health and wellness
The cluster was already in its second week but the onset of the classic migraine was an event I hadn't experienced in a very long time and it took me off guard completely. It seemed as soon as I felt any pain relief, it would again rebound with a vengeance that surpassed the previous wave.
The nausea and sensitivity compounded. I could count the nasal hairs in my right nostril. I could count the strands of hair on the right side of my head. The beat of my pulse in the right temple was excruciating and the tearing and coldness around the right eyeball and the searing pain behind the right eye was incredible. I felt like I had to sneeze very badly but just couldn't. There was a pressure against the bone in the right side of my nose that would not go away.
After a while, I didn't care what they did to me. Take me out of my misery. That may sound melodramatic to a reader of this blog--but only if they never experienced clusters or migraine headaches. If you have ever had one, then you would know what I am talking about. Have one episode and you feel wiped out. Keep having them over and over again and you feel totally depleted.
You will have experienced a hell on earth experience. Right now, I have been told I also experienced a touch of viral meningitis on top of everything else. And this has really wiped me out. I am striving to get my health back and get on with my responsibilities of life and work. As I get stronger, I will blog on some of the the experiences I had along this road--as a nurse--as a pain specialist--as a patient in a place where I work...it hasn't been easy in any one or all of these roles.
But right now, I need to try and focus on getting better.
Related Topics:
Technorati Tags: migraine, cluster headache, health and wellness
57 Comments:
I really feel for you, I havent ben diagnosed with a migraine headache yet.... but with the pain that i feel what else could it be?It feels like a intense throbbing worse than anything ive ever felt.i cant seem to figure out the trigger though.im addicted to caffine,but also get headaches if i dont eat soon enough,in the sun to long[w/out sun glassess],or to much noise for a long period of time.i even get extremely nuases from these headaches.some of these symptoms are new.just coming on since i had my son, who will be a year old next month.please help !!!!!!!!!!!!!!!!!!1
Did you try pseudoephedrine hydrochloride? Sudafed. Not the new kind over-the counter, but the kind you have to ask for @ the pharmacy. Also take 3 ibuprofen, NOT tylenol or acetominophen.You CAN take them together every 4 hrs. Eat something .A piece of bread if you have to.Crackers. Something. Don't take it on an empty stomach. Hard to do when you are sick to your stomach, but force yourself. (Ibuprofen can be hard on the stomach.) I've found if you get a migraine on top of sinus headache ,( & sometimes it's hard to tell which it is,) WOW.
I have a friend who rubs Vick's Vaporub on her face where it hurts & puts a Q-tip with it on up each nostril so she's not so sensitive to smells. She likes the smell of Vicks. I don't.
I had headaches for years. Was told I needed to see a "pain" Dr. I didn't. I went to a neurologist instead. That helped for a while.
Eventually, I went to another Dr. A primary care one.
If you aren't getting relief, find someone or something that will help.Don't give up until you get the relief you need.
I'm glad that I listened to that little voice inside of me that said not to give up..
While 99% of headaches are just that, headaches, SOMETIMES they aren't just a headache...
One evening we were going out to a fancy dinner dance.I couldn't see to part my hair.Just the middle of my visual field was gone & only for about 10 seconds.
I called my Dr. the next morning. He scheduled an MRI.
It turned out I had a golf ball sized tumor wrapped around my brain stem. My brain stem was pushed to the side like an upside down question mark .
I sure didn't expect a tumor!!(All of those years of headaches. No wonder I had headaches...)
It was 50%-50% whether I'd make it thru the 6 hr. operation. I needed it to save my life.
Thankfully, I came thru.
I had complications after surgery. I required a shunt. I have no balance nerve left. I am deaf in one ear. I use a walker.
But I'm ALIVE.
Thru months of therapy,I was learning to walk with a cane.
I had the worst possible headache one afternoon. I felt like my head was splitting open & my brain was oozing out. For some reason, I felt like I could keep my brain inside my head if I held my head with my hand over it.
I was given a shot @ the ER & went home with my husband.
It was a very long weekend.
By Monday I was worse. I was really using the wrong words or "forgetting" the name of something.( Like a chair.I'd call it ,"that thing that you sit on."
Back to the Dr. Another MRI.
I had had a stroke @ 43 yrs. old. A possible complication of surgery.. I have a heavy duty walker. I have memory problems.
But I'm here.
I get horrible headaches occasinally. It is better now,but when I get them it is bad. It's as if someone is cutting into my head without any anesthesia.
Enough about me.
Back to you.
If you are drinking coffee or caffiene soda-and soda like Mountain Dew has caffiene- you are probably doing so to keep up with your son. Do NOT try to completely eliminate caffiene all at once. You will get rebound headaches.Guaranteed.
Try to cut out one can a day for a week. Switch to caffiene free if you drink soda/coffee.Just for that 1 week.The next week do 2 a day & so on. It should help if you do it slowly.
I get headaches if I don't eat soon enough, too. My blood sugar drops.
When you look for sunglasses, make sure you get as high a sun protection level as you can. They may be more expensive, but are better than just tinted glass. Fluorescent lights are terrible on my eyes. Especially Kmart's. Don't know why...
I'm sure you use a high SPF sunscreen for your son. It sure wouldn't hurt you to smear it on, too. Especially if you don't know what triggers them. Heat? Change in air pressure? The seasons? You'd be surprised what that sun can do to you. And I don't mean just sunburn.
Are your hormones out of whack from having your son?
Eating-We all try to eat healthy ,but mom's tend to worry about everyone but themselves . I do take a vitamin & have found it to help.
(I'm not a "take tree bark" kind of person. That's an excuse to take $60 worth of meds in the hopes that something will work. No. Just give me something easy, that doesn't interact with other things. Believe me. I have to take a lot of meds.)
Being so sick is no fun. Having your head throb when you most want to enjoy your son .
DRS do have medicine for the nausea. It makes you a bit tired. Are you able to do anything when your head hurts or do you have to lay down?
If you want to try these things, great.
I feel for you. Keep searching for the answers & don't give up!!
I had migraine headaches so bad that I had to take Percodan for the pain. I developed an allergic reaction to the pain killer and almost died. These headaches went on and on until I finally saw a chiropractor. Not only did my headaches go away (it did not happen overnight), but I ended up quitting my job as a stockbroker and going to chiropractic school. Consider chiropractic for your headaches.
I suggest you and all of your readers Google this man's name.
He is a genius.
http://www.med.nyu.edu/people/J.Sarno.html
I have tried to post info about him on your message boards, but everyone there thinks he is somewhere between a quack and Satan himself.
It really is sad to think that people cannot understand the true source of pain.
It is sad that people will continue to get surgeries and all kinds of treatments for symptoms that have no physiological connection to pain.
It's sad that the knowledge that can free them of all of their suffering is sitting right there-- and they are too ignorant to even take a look at it.
I am not sure what the solution to these types of headaches is at this time, however, Indie I can totally understand how you can be taken down from them. I have, in the past year started experiencing migraines and cluster headaches. It has been to the point that when I stood up I had this sharp pain run through the left side ofmy head that buckled my knees and caused me to grab my head for fear it was tearing from my body. I considered the fact that I was severly dehydrated and increased my water intake, however the lack of appetite and the nausea is still prevalent. The increase of water has seemed to help some, however, I did have to have a prescribed medication to assist with eliminating the pain.
I do not want to be a member of this club but I appreciate you all sharing your stories and what works or hasn't worked for you.
Take care and thank you.
Hell on earth is a comparison that has ventured out of my mouth too! As a patient-previous-nursing assistant, I myself have been in your very same situation; over and over since the onset of my thirties. I am now 40. I have found through the years that identififying triggers does not really help me avoid the viscious attacks, but identify what type of migraine might be attacking me. Hormonal change has a significant impact--right befor, during, and/or after menstuation I am guaranteed a "never ending migraine. I just never know for rhow long or when during this cycle it may hit. And it hits with a "10". (yes, doesn't the pain scale seem irrelevant?)I urge you to continue on trying to find that balance in regaining what control you DO have with your life. I haven't found a cure yet, but medication at the first sign of onset does make a huge difference. Take heed to your body, and let it heal a little slower than your mind. Good luck!
From Barbara:
I get migraines, some that last several days, every time I have "that time of the month" since I had my last child about 5 years ago. I have been on several prescription pain medications for my migraine H/A's including Vicoden, Midrin, Imitrex, and Fiorcet w/codeine. I developed an allergic reaction to the codeine. None of these medications made my headaches go away, although some made me not care so much that I had one. I have 3 kids, so I can't walk around gorked out on drugs.
What I dicovered worked very well was taking vicoden together with a store bought caffine pill or an Excedrin Migraine, 600mg of ibuprofen and a caffine pill. My 'home made' rememdies worked better that any others I tried except for a shot of Toradol. But no doctor would give someone a prescrition injectible to take home, must go to a clinic or ER for the shot. I tried the Toradol pills, but they don't work. When my migraines get real bad all I need is a shot of Toradol which is non-narcotic, so no worries about addiction, only the pricy ER bill.
I have had cluster and migraine ha's in the past, had MRI with no significant findings. I started having migraines after my last (3rd) son was born and get them every month during my 'womanly time'. My doctor thinks it may have something to do with estrogen levels, but no one has been able to tell me exactly why I get them yet. I just keep hoping that menopause will come and the migraines will go.
I hope my experiences may help you.
Although I cannot say I am happy to hear of your suffering, I AM happy to read about your experience as I recently had an eerily identical experience. Cluster headaches of intense pain which were then worsened by the onset of a migraine headache. I lay in bed in so much pain that I literally fantasized about someone coming in the room and putting a bullet in my head to end my misery. I was so ill that I couldn't even summon up the will to imagine doing it to myself. To even lift a gun would have been impossible for me at the time.
I have taken trip doses of Maxalt so many times in the last two months that I begin to fear that something more than migraine is the culprit. But I am pre-menopausal and these headaches have become more frequent and more intense with the passing of time. I can only hope that menopause will end this hell.
I wish you the best of luck and health for the future.
Unlike a lot of other posters, I am a male...50 years old. I have chronic headaches which began when I was about 15. Though I can't say that I have had cluster headaches, I have ended up in the hospital a few times. When I was young, heavy exercise would seem to keep them at bay, but in the last few years exercise will now bring on a migraine which is very persistent...probably related to blood pressure. I use my wife's imitrex sparingly as they will quickly cause a 'rebound' headache if used frequently. I have had better luck with Amerge, which works more slowly but doesn't seem to cause a rebound.
My headaches are definately food related, at least many of them.
What I really wanted to say is that relatively recently I have found an interesting self treatment which has greatly reduced the frequency of my headaches. I cook up a bunch of spinach and brockley (I try and get organic)then I blend them together into a 'soup'. If I eat or drink this every other day my headaches seem to be kept at bay or greatly reduced. I assume the benefit is due to the high magnesium and potassium content in spinach...but don't know for sure. I have read that spinach is high in oxalic acid and can be hard on the kidneys if a person ingests too much...may also interfere with calcium absorption, so that is something to check on with a physician, especially if you have any kidney problems. Who knows what other benefits one may get from this concoction probably more than simply taking the supplements.
I hate vegetables so invariably I slack off until my headaches start coming back. I will then make this vegetable soup for 3 consecutive days and then taper off to every other day or every 3 days. It seems to take about 4 or 5 days to have a noticeable effect as well. Hope this helps at least a few of you.
I had cluster headaches for many, many years, which stopped when I retired. During the time I had them I tried everything like everybody else does.
I read an article in one of the scandal sheet papers about a study for possible treatment for cluster headaches in Italy . It was found that when red pepper (can't remember the amount applied or method used) was applied inside the nostrils, the pain was stopped instantly. I raise and have used herbs most of my life so I was more than willing to try this out, even though I was pretty apprehensive about sticking red pepper in my nose! The biggest problem was to find the method of delivery. Each time I got a cluster headache, I experimented with different methods until I tried putting the red pepper into a very small spray bottle of oil. I shook it up really good and sprayed. The excruciating pain stopped immediately. The problem with this method is that, even with the finest grind red pepper, the holes in the sprayer clog up and I couldn't get them open again. I would have to buy a new spray bottle after about two uses. Not too long after this discovery, Capsaicin cream came on the market and I thought about trying it. Before I could, though, I suddenly stopped getting the headaches. I have the amounts of the ratio of red pepper to oil in my library somewhere and if anyone is interested in them, I would be happy to send or post them. You have to be really careful though because too much red pepper could could burn the inside of your nostrils. It takes just one little spray in each nostril. Before trying it, talk with your doctor about it first.
As Dr. Eben Davis said, chiropractic can work- especially if they use a TENS Unit or Interferential Unit. My chiro uses them on me and most of the time it either stops the migraine in it's track or makes it so that it is just a bad headache. Regardless, I do not end up feeling out of sorts for the next few days. This has worked for every type of migraine that I have gotten (menstrual, sinus, etc. whatever the cause of the migraine). TENS Units can also be purchased over the internet but make sure you go to a Doctor or Chiro to learn how to use it properly.
Several of you have also mentioned getting migraines around your cycle. While I cannot speak for all hormonal migraines, the ones who suffer from a "true menstrual migraine" will hopefully experience some relief if they do what I did. First, a true menstrual migraine is a migraine that occurs the next after the first full day of your period. Ex. You start Tuesday afternoon, Wed. is the first full day, and you wake up or develop a migraine on Thursday. I had to travel through two states to be officially diagnosed and receive help for this type of migraine (I get several types of migraines). I thought that I was going crazy until I read my migraine on this Doctor's website! The reason for the menstrual migraine is caused by a drop in estrogen. There are several solutions to counteract the drop in estrogen. If you are on the pill, one solution is to use estrogen patches during your "period week" which helps to keep your estrogen levels stable. I opted to try another option which was to change my BC pill to Mircette. It has the lowest dose Estrogen which keeps your Estrogen levels stable and keeps the highs and lows to a minimum. This worked for me and I stopped getting the menstrual migraines. I have since switched to the Nuvaring (also low in Estrogen) and do not get that type of migraine anymore. The Nuvaring and Mircette worked wonders for me and I hope that I in turn have been able to help at least one of you:) Good Luck everyone! nudmewa
Anonymous said...
As Dr. Eben Davis said, chiropractic can work- especially if they use a TENS Unit or Interferential Unit. My chiro uses them on me and most of the time it either stops the migraine in it's track or makes it so that it is just a bad headache. Regardless, I do not end up feeling out of sorts for the next few days. This has worked for every type of migraine that I have gotten (menstrual, sinus, etc. whatever the cause of the migraine). TENS Units can also be purchased over the internet but make sure you go to a Doctor or Chiro to learn how to use it properly.
Several of you have also mentioned getting migraines around your cycle. While I cannot speak for all hormonal migraines, the ones who suffer from a "true menstrual migraine" will hopefully experience some relief if they do what I did. First, a true menstrual migraine is a migraine that occurs the next after the first full day of your period. Ex. You start Tuesday afternoon, Wed. is the first full day, and you wake up or develop a migraine on Thursday. I had to travel through two states to be officially diagnosed and receive help for this type of migraine (I get several types of migraines). I thought that I was going crazy until I read my migraine on this Doctor's website! The reason for the menstrual migraine is caused by a drop in estrogen. There are several solutions to counteract the drop in estrogen. If you are on the pill, one solution is to use estrogen patches during your "period week" which helps to keep your estrogen levels stable. I opted to try another option which was to change my BC pill to Mircette. It has the lowest dose Estrogen which keeps your Estrogen levels stable and keeps the highs and lows to a minimum. This worked for me and I stopped getting the menstrual migraines. I have since switched to the Nuvaring (also low in Estrogen) and do not get menstrual migraines anymore. The Nuvaring and Mircette worked wonders for me and I hope that I in turn have been able to help at least one of you:) Good Luck everyone!
I also used to get Cluster headaches and migraines for years and nothing really seemed to help so I know what you're going through. It seemed most of the doctors I saw had only seen men with the clusters and what worked for them nearly killed me. The only positive thing I can say, after I reached menopause NO MORE CLUSTERS! I still get migraines occasionally but none of the living hell I had previously. I also found HRT really helped when I was just starting. I wish you relief!
When I was pregnant with my 3rd child, my migraine were chronic. I have one or two a week for at least 6 of my 9 months. Because I also developed an allergy to codeine during this time, I was unable to take Tylenol with codeine and was permitted to take ibuprofen until my 8th month. Didn't help much, but was better than nothing. Side note: I had severe vomiting, so eating wasn't something I did a whole lot.
On to the migraine from hell... I was past my 8th month, just 6 more weeks to go. I hadn't eaten all morning. Mid-morning, I was hit the *first* migraine. This was one on the right side of my head. Nausea, photophobia, the whole bit. I was luckily at my parents' house, so they watched my other children while I went to take a nap.
After a few hours, I got up. Mom had a banana laying on the counter and it looked soooo good. I ate about half of it, sat down at the counter, and started chatting with my parents.
No more than 15 minutes passed and WHAM! the aura started again! This time, the aura started on the opposite side of my head and I was scared. I called my ob/gyn and asked what to do. He said, go to the hospital immediately. My parents took me down. By the time I got there, the pain was starting on the left side of my head. Keep in mind, pain was still on the right side, too.
The nurses took me to a room and darkened it as much as possible. I began to vomit. The ob called my neurologist. They had me on regular shots of demerol every 4 hours. But the truly scary part? I'm nearly 100% sure I had a seizure during this episode. The pain was excruciating. I was in the same place you were. I just wanted them to do a c-section and drug me heavily. Sadly, no such luck.
The seizure. A nurse came to check the fetal monitor. I reached up to grab her arm and I couldn't move. I tried to speak and I couldn't. I realized I was drooling. It was pure living hell. I was frozen in a immovable body of pain.
I remember shortly after this time, looking up and seeing my ob, neuro and nurse standing at the foot of my bed. "I wish we could do something to help her," said my ob. "I've never seen anything like this before," said my neuro.
And there I stayed, for 18 hours before I could again talk. After all of that, all I can say is: Thank God my son is ok. He does have epilepsy, and I'll always wonder about the cause...
My wife has recently been diagnosed with a "chronic migraine", whatever that is. All I know is that she is in so much pain that I can't even begin to explain it. She has never had any history of migraines. Approximately 4 weeks ago though, she started a weeklong bout of diarrhea, which subsided only to bring on swollen eyes and joint pain. The joint pain went away 24 hours later, but then her head began to hurt, and her eyes never really got better. 5 days later, since her headache had not truly gone away completely, and on this particular day was extremely painful, we took her to the emergency room. The doctors there ordered a CAT scan. They found a small polyp in her left nasal cavity and a cyst on her brain, both of which after having been examined by neurologists and neuro surgeons were determined to be harmless. She was admitted though that evening, and many tests and MRIs were done, but to no avail. She has a very thorough workup done on her from every department, opthamology, neurology, infectious disease, etc., but nothing has come up as abnormal. The only diagnosis they can come up with is a chronic migraine, and they say she is still a couple weeks away from any significant relief probably. Has anyone ever had a migraine that literally lasted for a month straight, with a pain level of at least 6 the entire time, most of the time being 7.5-8 or higher? I have never heard of this, but our doctor assures us that they have tested for everything, ie meningitis, parvo virus, lupus, etc. Everything is normal and all those test negative. Her nausea comes and goes. They released her from the hospital only to find her back at the hospital 4 days later because the pain got so much worse. All in all she has spent about 11 days in hospitals for this horrific headache. She is now on depakote, which has not done a damn thing, and as a concerned husband, I am frustrated, and very tired. I have two very young children at home, and I have never respected my wife more than I do during this time because of her ability to handle working, coming home and playing with and taking care of both kids, and also having time to run 5 miles every other day. She is an amazing woman, but right now she is completely debilitated, and I am concerned that she will never come out of this, or it will be a recurring problem in the future. Please HELP! I like the chiropractic idea. What does the TENS unit do?
Please consider your environment. Dim lights play soft music relax sometimes. I have fibromyalgia and migraines that send me to the ER often for IV medications. I have found that Neurofeedback is helpful with both conditions. Identify your triggers and avoid them. Food can often be the cause so keep journals. Flouresent lights, loud noise, smoke, toxic people, period, look for the cause. When I get a migraine I cannot move or talk without vomiting and increasing the pain. If I get still I find that I try to escape my own body I think I do leave sometimes it is so hard to get treated for them too. Our ER is busy and sometimes we have waited for 6 to 8 hours for treatment. I have maxalt and it works about half the time if I take it asap. I have phenagren for the nausea but cant keep it down. Tordol only works as a shot not in pill form. If you have more than four a month you have to see specialists. Osteopaths are amazing also for relieving chronic pain and migraines. Mostly keep looking for answers if you dont get one from one doctor you may get an answer from another one. They are not all the same.
I would just like to say I feel for all of you. I to am a sufferer of horrible migraines. I have been to Dr after Dr. Tried almost every medication out there. Just seems hopeless, like there will never be any relief. I did however find somewhat of relief on a medication called Topomax. When I first started it, got used to it wow it really worked wonders. The unfortuneate thing is being on something for long periods of time, as we all know doesn't seem to work as well. It's pretty depressing that they haven't come up with a drug that would work for a long period of time and not lose its "working power". I used to take Fiorinal/w codeine, which is wonderful, but for some reason being on it for as long as I was I developed a type of allergic reaction. Odd but i guess it's possible. I now take my regular cocktail mixtures and added percocet to my mix. It helps a great deal but i like everyone else am still looking for that miracle drug. I suffer horribly, and would love to find a way to not have one day where I don't have any type of headache at all. I am back at the beginning again, starting to go through tests and such. I hope they will be able to find some relief for all of us eventually
I feel a bit better knowing I am not alone. I have daily headaches and am just shaking off my 2nd (possibly 3rd) full blown migraine. I have female, almost 48, with a highly stressful job and a neck injury that requires periodic steroid injections. Still, I don't think that those things explain the almost constant headaches I suffer. Meds do almost nothing! What to do?????
I was put on Topomax for preventing migraine pains and this medicine caused me a lot of side effects up to the point that I got medicated with depression drugs. All the symptoms stopped as soon as I connected everything with Topomax and stopped this drug. I also cut out all the depression drugs and I am perfectly fine. Be careful with those preventive treatments. They may be even worse than what you are trying to avoid.
The earliest migrane I remember was sometime in the fourth grade (so I was about eight). I was lying on my grandmother's couch and just crying and alternating between pulling my hair and squeazing/banging my head. I also remember begging my mom to kill me because I couldn't take it. I haven't really had much relief since, but I have gotten better about handling it. Im only 22, and I feel like I'm forcing my way into a club of people with a lot more expierence than me and trying to offer my advice. I'll do it anyway though because it might help someone.
I know what triggers my migraines. Mostly. It's the same as the rest of you...menses, stress, persistent loud noise, etc. Sometimes they catch me totally off guard and leave me stuck somewhere (at work maybe, or at dinner with my family) with such pain and sensitivity that I can't drive myself home. Other times, and these are the lucky times, I catch the right signs and have time to tuck myself into the cool dark cavern of my bedroom and ride it out. I take 2-3 aspirin because I know it thins my blood and lowers my blood pressure enough that the pounding isn't as severe and plus it's that miracle pain reliever. I find caffine somewhere whether it's in cold coffee (it does no good to drink hot stuff...stay cool!), a soda, some chocolate. I know it's a pain reliever aid. I don't know what else if anything it does, but it helps so I'll take it. I do believe it also helps expand blood vessels (once again lowering that blood pressure).
Anyway, thats how I deal. Stay in a cool, dark, quiet place. Take some aspirin and caffiene (Excedrin Migraine has both!) and reeeelllaaaax. I used to cry and bang my head and rock back and forth. I was only making things worse. I have found that if I just lay down quietly and take slow even breaths and try to day dream or meditate or even sleep I do so much better.
Migraines are really "hell on earth" so take care of yourself.
I can totally realate. I have had migraines since I was 12 yrs old or at least taht is the first time I can remember where I had to go to the hospital for relief. Since then I have tried 25 different preventative medications to no avail. I have been on pain killers every day for at least 5 years now so you know the predicament I am in now. You guessed it addicted to pain meds and not sure what to do. I have a younger son that has ADHD and an older son in college. I can't be away from home right now but the migraines put me under. The guilt I feel when I have to go to bed is almost as bad as the pain itselt. I am a religious individual and really have struggled over the years between dealing with the pain, the family, and the medication. The only thing I can say is that when I read your message I felt a sense of not being alone. Hopefully you'll get by this time and they will go away as they have come.
I can also relate to all of you, but perhaps a bit differently. I am a 44 year old male and I have had a headache for months, 24-7, non-stop. Intensity varies from annoyance to please-kill-me. It begins around the eyes and radiates out to the temples, jaw and the back of the neck.
My typical 20-25 OTC pills a day does nothing, (except destroy my liver), Immitrex does little more than that. The only thing that grants me temporary relief was Percocet.
I have no idea if this is a cluster migraine or not. I have had a brain CAT scan which was clean and no sensitivity to light and no nausea, (yet). I am scheduled to see a neurologist tomorrow and have no idea what he'll tell me or give me, but reading your accounts has provided me a better way of describing my symptoms.
I have been suffering with cluster headaches and classic migraines for over 20 years now and nothing has helped so I do know what you are going through. Unfortunately for me, the only thing that keeps my cluster headaches away when I go into a cycle (which can last for as long as 5 or 6 months at a time with attacks coming 4 to 6 times a day) is steroids. Doctors have tried everything - neurontin, topamax, calan, sansert, oxygen, etc. At the moment, I am on Calan and Topamax and praying that I do not go into another cluster cycle, but if and when I do, the only thing that ever breaks the cycle for me are steroids - Dexamethasone to be exact - and the stuff has ruined my life. It gave me avascular necrosis in both of my hips and both of my shoulders. I spent 5 years doing nothing but having both hips and both shoulders replaced and going through the subsequent physical therapy afterwards. The irony is, while all of that was going on the cluster headaches actually went into remission for 5 1/2 years. I was so full of hope, so optimistic that I'd finally gotten past that stage of my life. Then, when the last bit of therapy was finally over for my second shoulder replacement and I was almost back to normal physically, able to raise my arms, lift things, go for walks, drive myself, etc. that's when they came back, out of nowhere.
Last year (2006) Labour Day weekend, I was supposed to go over to my cousin's house the next day for a barbeque and the previous night I was jarred from my sleep by a cluster attack. I had to scramble to get my then 5-year-old Imitrex injection from the drawer to treat the attack. This past year has been one of the worst of my life. That cycle lasted from September 2006 until March 2007. In that space of time, I had to go back on Dexamethasone which put about 150 pounds on me, my aunt passed away from Lupus on my birthday in February, and a week after that I developed a severe chest cough and had to be hospitalized for two nights. At the time they thought it was asthma and/or bronchitis but they now believe it to be allergies. I still have the cough (though not as severe).
I experienced my first cluster attack in January of 1987, one month before my 15th birthday. I have been living with this evil affliction my entire adult life and even in my youth, when I was supposed to be enjoying myself. I went undiagnosed/misdiagnosed until I reached my mid-20's. Even if I had been diagnosed back then, there weren't really any treatments. There were no triptans, there was no Topamax nor was there any Neurontin. I barely scraped by with good enough grades to graduate from high school because I missed so many days due to the cluster attacks. I couldn't go through college because of the cluster headaches. I tried going to a technical school for audio engineering and I was loving it, but, alas, I had to drop out because of the cluster headaches, even after being given two more chances to complete the course. :-(
Because of these cluster headaches and because of how young they came upon me my life has been one long hell. I've never had the chance to establish myself and experience the things in life that most people take for granted everyday. I can't hold down a job. I can't have a girlfriend because no one wants to be bothered with a defective, non-self-sufficient person like me. All of my friends have fallen away over the years as I have watched their lives progress while mine has remained stagnant, because year after year all I do for months on end is fight off this excruciating pain all day and all night and I can barely function. At nearly 36 years old I still have to live off of my mother because I can't make a decent enough living to take care of myself and the government doesn't recognize this affliction as a disability.
The worst part about it all is the lack of respect that I get from everyone -from family, from "friends", from people I don't even know. After all, everybody gets "headaches" right? I'm just lazy. I'm not REALLY sick. So, I've just become a recluse. I don't like being around family because they all treat me like a loser and show me no respect and I don't like meeting new people because there's always that inevitable moment when someone asks "what do you do for a living?" Then, I either give them the full story in which case their faces either glaze over or I get the look of pity, or I give them the short answer which is "I'm unemployed", that's when I get the look of condescension. I'm not worth the time of day anymore, you see.
I curse these cluster headaches, I curse them to hell.
TO anonymous that is a 44 yom with a constant 24/7 headache with no relief from OTC's.....I am experienceing the exact same thing! 12 weeks now with the same headache...seen every doc under the sun with all tests imagineable which is hell to begin with! Please let me know what else has happened...i too am seeing a neurologist for the 2nd time in a week....and another ENT.
WHEN I WAS A KID I HAD EPILEPSY AND I UNDER GO MEDICAL TREATMENT FOR A YEARS NOW I WOULD LIKE TO ASK WHY IS IT A HAVE A LOW MEMORY UNLIKE BEFORE IS IT THE AFFECT OF PHENOBARBITAL.BEFORE I AM AN HONOR STUDENT BUT AS YEARS PASS BY MY BRAIN EASLY FORGET THE THINGS THAT I READ OR EVEN SAY TO OTHER PERSON?PLS MAIL ME (mdlconnie@yhoo.com)
Hey, I know your pain oh so well. I experience those at least once a year and have for the last 19yrs. Some last very long with an average of 4 months.I don't always have the money for the topamax. It can be very expensive so there are times that I end up dealing with it anf it takes a great strain on my family. I alway thought I was the only one who had them so severe until I read this blog. I would never wish this pain on anyone.
You know...I understand these so called "headaches" They chould be called something esle because they are debilitating to every part of your body it seems. Oh and believe me, I feel bad for me. I do. I even went to the hospital after a 5 day migraine clluster headache and with no insurance and me being niave made up someone elses name. Jane Doe, or Jenny Craig..I can't remember. I was desperate. Well I got i alto of trouble for that. Never had been in trouble in my life and in my 40's with 6 kids. Now, I'm a felon. Try gettin a decent job even with a college degree...and say yeah, I'm a felon. They can't send you out the door soon enough. People say well ya know, your mom had them. She stopped having them after menopause. Menopause? Great! Could be Ohhh 5 or more years. And how..oh how do you make your loved ones understand...I'm sick..AGAIN. AGAIN. AGAin. How do you keep a job? How do you make the man in your life who has tried to understand..really understand...but says..he's at the end of his rope. Well so am I. So am I. Thanks everyone for sharing everyohe. I only wish I could take this Hell on Birth burden..which is me...from my family. I love them and they should not have to suffer because of me. What to do? Yeah I have Drs. of all kinds. I think "I have read and read and read these blogs..and yep, I've tried that..and that..that too"Have you ever just prayed to God you could die? I have never said that out loud til this very day. But what good am I doing in this world..besides making others suffer with me..and taking up space. Sorry guys...it's been a bad week.I should go to bed..I should get some sleep..I should be the loving person that many people who don't know me on a bad day say I am. I should do just that. But I can't. I have a "HEADACHE" And on this ironic note..I wish you all a happy new year. That came form the heart whcih works just fine...not my head.
It's me again..forgive me for my typos..I will blame it on my headache...which probably is not true, but maybe...and really who cares. I'm not as negative as I seem to be... just discouraged. Depressed maybe even. There is a way out of this. Isn't there?
I completely feel your pain. I got my first Migraine 2 years ago. During the past 6 months, though, I have been getting them about 1 a month. Needless to say the last 5 Migraines have landed me in the ER or my doctors office for a shot in the rump. The "Migraine Cocktail" as I like to call it (Demerol & Phenergren). I haven't been able to be on any preventative medications because we have no health insurance and Migraine medications are very expensive. But then again so are trips to the ER for shots. I have yet to feel any kind of headache that would top a migraine. They are so painfull it actually wipes me out for a few days after the first onset of pain, light sensitivity, and nausea. I have tried all the natural remedies, but with no success. I have found some triggers. They include: certain smells, loud music or loud environment, bright lights, stress (and I have lots of that), & insomnia. Again I feel for you and would like to talk to someone like you who understands just how terrible Migraines really are.
Try to keep your head up, you are so right,no one can no how bad a cluster headache is unless they experience it for themself.You just wait for even a slight relief of pain and when it finally completely goes away,you feel like you just boxed 10 rounds in the ring with Mike Tyson. All the best to you friend and keep us posted.
in october i had the same symptoms. it started with an ear ache, few hours later cluster headaches came, the skin on the right side of my face became sensitive and tender...as if i had a bruise or sunburn. the hair strains on my right side of my head also hurt. every time i elevated or looked in a different direction sharp stabbing pains is all that i felt, was in so much pain that it would take a breath out of me. i didn't get the chance to visit an MD, but i reduced the pain by taking 3 liquid advil pills every four hours for 5 days straight. surprisingly, the pain eventually dispersed. but now, three months later, i have the same symptoms.... i'm 23, female....i’m not stressed, don’t drink alcohol, or have hormonal changes. any help?
While women are the large majority of those who suffer Migraine/Cluster HAs, I'm a Man, now 55 Yrs old. My 1st Migraine was at the age of 7. I still continue to have them to this day. My Father had them, his Father did. My reason is 100% GENETIC.
Yes, I have the typical symptoms including photophobia, audiophobia, nausea and the classic aura syndromes.
I eat pills when I have to: Vicodin, Fioricet, Relpax and when I'm out of my narcotics, I take the typical oral Toradol and the anti-nauseanant drugs.
You name the test, I've done it. X-Rays, MRIs, PETs etc. I'm under the care of an excellent Dr, Dr of Neuro, ad nauseum.
Of course, now when I experience a Pain of 8-10 and have to go to the ER and wait hrs. Of course, now they see me as an "Abuser" and it's now in their books. This is at Barnes-Jewish Hosp in St Louis Area: It consistently among of the Top 10 Hospitals in the USA.
P.S. ER Visits? NO! As a former EMT-A, I know what a drug rebound is and I also know what a True (relatively speaking) Emergency is -- and I know the difference between the two.
Good luck to All of You.
I just wanted to agree with the mentioned pain. I have clusters and migraines and chronic sinusitus. I have bee telling dr's for years that my headaches were more than allergies and no one belieived me. finally my father made me an appointment with his neurologist, who in less than a week got my head that had been aching for about 3 weeks to stop aching (with the exception of the sinus pressure) and referred me to an ENT to get the sinusitus taken care of, i have severly deviated spetums, and am now waiting to have them corrected. I have not been able to exercize and play ball for longer than 20 minutes in over 3 years due to these problems(i was a varsity letterman in high school and ran 5k's in college until it got so bad i could not breathe), and finally they are getting better. The chiropractor does help with some of my pain also. My neurologist said that my neck is so tense from the pain in my head that i keep my neck tense all of the time and visits to the chiropractor also help. There is hope.
Oh.. my magic cocktail that has made it better... but i also do have VERY good medical insurance.
Topamax25mg (2), Inderol LA (1), Elavil 10mg (1)at night
Phrenilin 325-50mg 3Xdaily
Loratab 7.5 as needed
Axert as needed
I also have acid reflux.... and take prevacid twice daily.
Oh.. my magic cocktail that has made it better... but i also do have VERY good medical insurance.
Topamax25mg (2), Inderol LA (1), Elavil 10mg (1)at night
Phrenilin 325-50mg 3Xdaily
Loratab 7.5 as needed
Axert as needed
I also have acid reflux.... and take prevacid twice daily.
Hi! I am walking in your shoes at least a few days a week and completely understand the physical and emotional pain chronic pain causes. Just over a year ago, I was finally sent to a neurologist who did every MRI's and MRA's immediately as my symptoms were so severe that it looked strongly to be an aneurysm or tumor. It was all quite frightening. What it was was the deterioriation of all 7 of my cervical discs. 3, (C-2, C-5 & C-6) all had spinal stenosis. My doctors said that my severe headaches were what they called Mixed Headaches or Cervical Headaches. They did not respond to any of my migraine medications and their attempt to improve my condition was a nightmare. I have paradoxical syndrome with many medications which is quite scarey. The gave me meds that should have helped reduce the intensity, duration and frequency, but it made me suicidal without reason. I went through hell. My neurologist put me on verapamil and frova and that has helped but not enough. I begged my doctor to put me on a low dose of predisone and for me, it is a miracle drug. Yes, it has side effects at high dosages but I generally take 5 to 10mg tops. On really good days ( about 3 a month) I don't take it at all to give my system a break. I'm finding that everyone has to find their "cocktail". I am still in pain nearly daily and not very mobile outside because I have now developed lumbar herniated discs which cause excruciating pain and weakness down to my toes, so I tend to fall into things and if unlucky, I fall. My doctors say that what is happening to my spine and bones (i now have osteoporosis!) should not be happening to a woman who is now an inactive 51 year old, but it started when I was a very active 46 year old. My advise, try everything. Next for me is accupunture, chiropracty and a steroid epidural. The irony is that I have to be well enough to get to these appointments!!
;p Good health and good thoughts to you all.
To the Anonymous who had severe pain from her neck down into her legs. Get yourself to the top neurologist that you can and get a CT scan or MRI immediately. What you are describing is what took years for doctors to diagnosis. And it does get worse - it is degenerative. That is why I am doing everything that my body allows to try to find what will be best for me. We must go outside western conventional medicine and neurologists are all in favor of this. Chiropracty and accupunture and physical therapy (is your body can indure it) are just 3 methods to help with pain and I understand that at least one will help most people in this pain.Don't delay!
My heart and good thoughts go out to Anonymous who at such a young age has suffered a brain tumor and stroke. I hope that you are getting physical therapy and or chiropractic help or other things that don't include narcotics. I too and desperately trying to stay away from them as they make me very, very ill and give me ulcers.
Best wishes.
neocleo,
please get yourself to a neurologist. Maxalt, while a good medication for classical migraine, at least in my own experience, only takes the edge off of a cluster or mixed headache. Frova has been on the market for about 2 years now. Try it. It works better than any thing else for the cluster, mixes H/A. With everything, even ibuprophen, you must be extremely careful about rebound headaches. Please read up about what causes these as they are what prolong the headache. My longest was 17 days and I was begging God or anyone, to take my life as death was no doubt preferable. So I get it. I am lucky to have a son close by that I can call anytime. Everyone needs that. We all need people in our lives some how who can understand our life of pain and how desperate we are to be normal again.
To Barbara: Your comment sounds SOOO similar to me it's just not even funny! My doctor has changed me so that I take my bc pills (I don't plan on having any more children) and only have my period twice/year due to the migraines and cluster headaches. I still get them occassionally (like this past week and for V-Day got a toradol shot at the Dr. office yesterday), but at least it's not every month. Just a suggestion to check into. I feel for you!!! Lara V.
my father has had a constant headache since thur night it is now tue it is only on his right side of his head in one particular spot. hes been in the hospital for 4 days had a cat scan, n mri , ekg, n a eco cardio gram turns out his blood pressure was off the wall but they got that taking care of for now n yet he still has this constant headache im getting concerned for him and am at a lose on what to do for him i feel so bad
Thanks go out to all of you that have taken the time to write about your headaches. I have been having cluster headaches now for nine months. My doctor put me on Corgard, Zonegran, and Amerge in January, that seem to do the trick for me for about one month and slowly the symptoms started coming back and for two weeks now nothing is working. For me, the nights are bad. I wake up with them and I wish we kept a gun in the house. I try to think of my eight month old granddaughter and other happy times, but it gets difficult. Today I went on line to read up on the Amerge to see if I was using it correctly because after taking it, my headaches return after an hour or so. I saw Post a Comment, and started reading. It was so good to read your letters. Knowing you are not alone helps. My husband is going to change a light switch and wants to turn the power off, SO I have to sign off. Thanks everyone, and I will keep reading.
I also suffer from chronic migraines and have for over 5 years. The worst one I had lasted 21 straight days and I was totally bed bound. It came complete with vomiting, nausea, and senativity to light and sound. I even lost all sight in my left eye. I spent several days in the hospital having multiple tests run. Everything came back normal. I was referred to a neurologist who put me on Topomax. It's an anti-seizure medication that's used to treat migraines. I take it every day now to help prevent the on-set of the sever migraines. I still get them from time to time but they are not anywhere near as bad as what they were. I also keep a standing appointment with my chiropractor once a week and that helps too. (Especially helpful if you sit at a keyboard all day long or do repetitive tasks since the muscles in your neck tighten causing possible resticted blood flow to your brain.) Also good idea to know what usual triggers are for migraines like nuts, beer and wine,cheeses and processed foods. Cutting those out has helped alot too.
I was diagnosed with cronic migraines back in 2000 and since have had about one every month or two. About a month and a half ago they came back stronger than ever and are stacked with cluster headaches and neither have gone away for more than 5 minutes at a time. It seams that anything will trigger one of the cluster headaches that will bring me to my knees and has caused me to lose conciousness more than once. And the dizzyness wont allow me to drive or work. I have been on so many medicines in the last month and a half that I cant even remember half of them and most have done nothing. This morning my doctor got the results back from my most recent MRI showing a quarter sized cyst in my left nasal cavity. I cannot find anything one any website about nasal cavity cysts. has anyone been here before or might know what i can do?
my son is 8 and has had head aches off and on since he was about 3. he has a vp shunt to drain a cyst on his brain stem. for along time he'd get them every month, then it would space out to as far apart as 3 and a half months. last year he had a shunt revision, and now the headaches are back to every 2 or 3 weeks. the pain will last from 6 to 8 days with vomiting, can't drink even water with out it coming back up. so then he gets dehydrated. during the last day or two of the symptoms, his lower back will hurt excruciatingly,to the point he twists into a pretzel of pain. he's had imetrax, nausia pills, and other meds i can't remember. he misses school, vacations even christmas one year. just frustrated and was wondering if anybody knows whats up. dr.'s sure can't figure it out. thanks
just kill me now! I can not live with CHRONIC DAILY MIGRAINE HEADACHES any longer. I have not had a single day w/o a migraine or headache in over a year. Doctors refuse to help, they say pain meds aren't for migraines and give me some pill to take every night to see if it helps after a month. I NEED RELIEF NOW.... I have a job, kids, spouse, a LIFE! (I feel like I have been robbed of the last one--LIFE) These experiences are making me cry because now I know I'm not alone or crazy like all the idiot doctors I've seen. Thanks! If I can find any kind of relief besides the lortab I can only get black market I will definitely post it. I will keep us all in my prayers and would appreciate the same!
~Hell in Idaho
doctors in didsbury ,alberta,canada,can eat my crap.i have crohn's disease and none of them give me anything for pain.
I'm very sorry to hear about you condition. I have had a constant headache for 2 and a half years now from various sports related concussions. I've been told i have a "mix" of headaches between cluster, tension, and migranes.
I've tried prescriptions such as amytriptilin and triple codene and nothing worked. I had an MRI and they found nothing. I still get numbness and blurred vision from my episiodes. I never know when there going to strike either. I have weird quirks like a spot on the back of my head. When pressure is applied i get dizzy with extreme discomfort. I get weird tingling in my head during episodes as well. I get skeptical looks from my parents at times, especially from my dad who is a doctor. I've seen several specialists and have gotten nowhere. I didn't mean to rant of my issues, but i just wanted to ask you or anyone if they have any advice or suggestions.
I was in your situation for 25 years...left sided cluster. Had migraines before the cluster episode started. Went through every imaginable test, medication, Georgetown University Medical center...everything. I did find cafergot worked to some degree coupled with extra strength anacin...but the pain was still in the 5-7 range on a scale of 10. But I did find a few years back...trigeminal nueralgia has a big play in clusters. In short, I avoid sleeping, chewing, touching, anything that has to do with the left side of my face. I can tell you, except for a few transient CHs (due to sleeping on the left) I have been CH free for 10 years now. No longer the 4-8 attacks a day 7 days a week.
David
Finally someone that I can relate with. I have been put in the hospital twice this week because of my cluster/migraine headaches. It will not go away. The Dr.s just cover it up with strong narcotics and send me home. Well now it is the third week and I still have the pain. Not as intense as it was before I went to the hospital, but still there and will not go away. I just wish one of these Doctors that I pay good money to would help me. What are these doctors good for anyway?
I have cluster headaches. I am a 25 yo male and I have been getting these headaches since I was sixteen.
I saw a few doctors. I was perscribed Paxil, Imitrex, Migranol, some blood pressure med, and some anti-siezure med (sorry I can't remember the names).
I have had recurring episodes once or twice a day for 1-2 months out of every year. I realize that this is not as serious as some of your cases and my heart goes out to you. But, I feel that this is destroying my life.
This is what happens when I'm down with a cluster:
I am currently unemployed, having had to quit my job about a month ago.
I just got my GED a few months ago because I dropped out of highschool during a cluster that lasted 5 months.
I want to go back to college. I am intelligent, and I have noticed that everyone on this forum has exceptional spelling and grammar (interesting). I don't know if I can finish anything.
I have had thoughts of suicide, but still hope to figure this out.
Once I am in a cluster, I can expect an episode to wake me up each morning and last from 20min to 6 hours. I get other random episodes throughout the day and night. Also throughout the cluster I seem to get nosebleeds from my right nostril for no apparent reason.
My episodes start with an obvious swelling above my right eye that causes the eyelid to droop. This drooping will last the entire cluster (1-2 months), but fluctuate with the episodes. I feel the stabbing pain in my right eye, which becomes very bloodshot. I become very sensitive to pretty much everything. I usually sit down in a hot shower until the hot water runs out, and then lie down on the bathroom floor with a blanket in case I become nauseous, which can happen very quickly and without much warning.
I take excedrin when I wake up. I also take a capsiacin suplement called "cayenne fruit" which is inexpensive and seems to help prevent episodes. I take twice the recommended dosage. I don't really know if that's healthy so consult a doctor if you can afford to.
I have tried applying capsiacin to my nasal membrane in several different ways. I've applied the creme to a q-tip and shoved it up my nose many times. When I'm in that much pain I'll try anything. Sometimes it helps, but not always.
I have tried running, not so effective.
I have tried more intense forms of exercise like doing push-ups and sit-ups and that helps, as long as the pain is not too debilitating to do this.
I have tried breathing exercises. I have intentionally hyper-ventilated until my face goes into paralysis from CO2 buildup. Not recommended, but I do recommend this:
Find your heartbeat,
Take a full breath in three beats and immediately exhale fully in three beats. repeat for five minutes.
I have also tried accupuncture many times with good results. I have seen three accupuncturists, all with slightly different techniques.
All seemed to help particularly with the muscle tension in my neck and shoulders, and the swelling in my eyelid. I can feel the swelling drop while the accupuncture is being performed.
I skipped one year when I was 19 and was working at a bar and smoking cigarettes heavily, go figure. I do not smoke cigarettes any more.
This last cluster, which I am hoping to be done with any day now, was a little different. I felt only pressure behind my right eye for about a month with no episodes. Also I usually get this earlier in the year, around January. Maybe I'm gonna grow out of them? ...a glimmer of hope.
I've always read that men are afflicted with cluster headaches more often than women. I'm surprised that that there are so many women posting here and not so many men.
The Mayo Clinic has the most information on this disease that I have seen.
I was just doing research on cluster migrain headaches and came across your story. I have been diagnosed and have had the same pain and feeling of being "wiped out" for years. My cluster migrains occur every year to year-and-a-half. They last about 45 days straight without a break from the pain. My husband has to stay with me (thank goodness we have our own businss and can afford to do this). He knows the routine to help me stay "comfortable" which consists of ice packs to numb the right side of my head, crackers, soup, sprite and of course he sets up a campsite for me in our walkin closet. I have to have complete darkness and silence - especially at the onset of each episode. I've tried neurologist (three in the past 15 years). I've tried every migrain medication on the market (they all help for a couple of hours for about four days. I've even tried lithium (I'm not sure yet if at the time this drug helped me or not, but, it made me feel "strange" and I don't recommend it! Finally I decided to try massage therapy. I have to say, I was toward the end of my "cycle", but I think this has helped me more than any drug I could take. I've also recently had xrays of my jaw and discovered that I have a couple of issues with "popping and cracking" in the lower jaw area. When I'm having the cluster attacks, this area is also sore. So, I now have braces to help straighten my teeth and correct my jaw issues. My message to anyone reading this is that you have to find what works for YOU. Try several options and spend some time praying too! This has been good for me as well. Best of luck to all migrain victims.
Okay this sounds just like me? About a year ago my estrogen was at 568 and I was having the terrible migraines with the vertigo and throwing up. After about six months it appeared to have stabalized and went down. Well now I'm on the other end. My estrogen and progesteren are about gone. I'm down to 17 on my estrogen and only .04 on progesteron. My migraines and all of my other symptoms are back with a vengence. They are now sending me to an endicronologist? Because not only are my hormones off, my thyroid leves keep going up and down as well? Any suggestions, comments???
Hi all fellow migraine sufferers.
I had rebounding migraines tried all the meds and shots nothing stopped all the pain or the cycle.
I was sent to Johns Hopkins to a neurologist who said i have transforming migraines. It starts as a migraine and goes into a dibilitating migraine where you cant function right. He took me off all the meds i was on and started me on neurotin and aleve and imitrex. I was over medicated to a dangerous level. I cant say i have improved much but it helps to know you arent crazy when you have daliy migraines and people think you are making it up. If you find you are having migraines daliy and nothing works see if you have "transforming migraines".
I wish you all better health and a cure!!
Hey, I was just reading some of the comments here and I was like that's crazy! I suffer from chronic hydrocephalus and chronic migraines. It's very difficult because I don't know which one's worse they are extremely similar. I've had 3 brain surgeries in the last year do to the shunt. I've been on various over-the-counter medications and prescription medications and not a single one has worked. If anyone has any suggestions please Email me at
mc9008kc0108@gmail.com.
I have migraines all the time. my doctor first said it was menstrual but i get them even when it isnt that time. i had a cat scan that showed something on the white matter part of my brain. he sent me to a neurologist who then sent me for an mri that showed the same thing. so then he sent me for a spinal tap to rule out MS. they have put me on topamax and depakote which does not work. i get at the least 2 migraines a week. i am either in the dr's office or the er twice a week. they give me a shot and send me home. it doesnt completely stop the pain either. any suggestions out there?
I feel for you all; and experiencing the same things with little or no help. It all started Back in January 19, 2008. I have had migraines most of my life since I was 7 and handled them just fine with over the counter meds and excerice rest etc.. but this last time was something else and has not stopped. 18 days 6 docotors visits and 2 trips to the ER before the mirgrain stopped. Then several visit to all kinds of specialist and tested that made me sick pain that was unbeable meds that make me feel worse then every and nothing has helped. They still can not seem to find a solution and tell me to continue to take the meds. has anyone taken "Topamax" this stuff has made me have an anenxity attank, and my mind work almost like a sixth grader and high blood presure "which I have never had before", It has beeen six months! I have used all my FMLA, lost my job,( I have never been fried from a job in my life), I can not drive, I am on Disablity, and lost my medical insurance, it is rediculous.
All the nero spec, ENT and Family Docs, have been able to come up with is the Vertigo, and dizziness, are due to the migraines. Even though I have it when the migraines are not prsent at the time. Of course the sent me to the Phyothreopsits for depression and he stated I was not depressed just upset that no one could find out a solution to my illness.
Good luck to you all, I hope you all have better out come then I so far.
I feel for you, as well. I can offer some great advice, I think. I, too, suffer from cluster headaches. I have found that an increasing dose of Verapamil, a blood pressure medicine is very effective in treating my cluster headaches. I start with one pill for the first few days and increase to 2 or 3 per day as the cluster increases in severity. As it begins to recede, I will decrease the dose, until the cluster is over (for me 3-4 weeks).
Verapamil, as I stated, is a marvelous drug that has little side effects, but prevents your blood vessels from constricting in the head and face. This vessel constriction is what we both call a "cluster headache." I would be surprised if your neurologist has not suggested this. If you have not tried verapamil, do so. I can only describe the effect of the medicine as "knowing that I am having a cluster headache, but I cannot feel any pain." Most of us have a good sense of when a cluster is starting and ending and with verapamil you can still tell, ie: stuffy nose, watery eyes, but, it comes without the excruciating pain behind the jaw, eye, and cheek.
Finally, I can offer that ALCOHOL is a major trigger for most cluster patients. Avoid alcohol during the cluster. (This has been particularly hard for me because I am a wine salesman.) Beer is the worst, along with unfiltered wines. Yet, I find little problem with one drink after a meal.
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