After nearly 40 years I have finally found some relief, thanks to an exceptional Neurologist. I got hit with a baseball in fixing that they found a tumor behind the eye at about the same time I was exposed to high radiation levels. He diagnosed severe cluster headaches. I take the 'shock' treatment of prednisone, and varapamil ( a vascular med), But most important straight oxygen thru a full mask (7liters) for about 5-10 minutes. IT WORKS! A caution though, the O2 works for both migrane and cluster the rest do just the opposite for migranes. Check the Chicago Headache clinic, they are now saying coffee w/extra sugar and MILK is more effective better than the 'hard stuff' such as demerol which did nothing for me. I hope this helps someone.
Dave

Dave <dave@diamondtouch.com>
Friday, May 10, 2002 at 17:06:48

Heh Guys,

I'm just wondering if there is anybody in this whole wide universe who has the same or a very similiar type of headache to that which I have had for 26 years, beginning when I was 16 yrs. old. It is 24/7 on the Left Side of the head, without nausea or vomiting. I wake up with it in the morning, and take it to bed at night. Pain is very expansive and pressure like, and worsens with mental exertion; it improves with physical exercise, expecially aerobic. The headache has for the most part been very stable in the sense that it hasn't changed MUCH over the years, that is, until this last November 2---that is when the worst bout of my life began. For all the years prior it was in the 4-6 range on the 1-10 pain scale, whereas now it is 9-10---meaning it's unbearable, if I don't take abortive medication. (For example, I will be laying on the living room floor and the pain will be so severe that I can't reach out to pick up the remote and change the channel---it is that paralyzing, unless I take pain medication for it).

However, it is still over and behind the L. eye and in the left temple area, and throbs. It always seems worse when I lye down. I am not particularly photophobic or phonophobic, but have always had allot of tearing of the eyes with the headache, as well as stuffiness on one side. Something bizarre that has always been a part of the symptomatolgy has been the fact that my right arm doesn't swing freely as my left arm does when I walk {That has been a constant with the pain}. It is not that the right side is weak per se, but that the right arm and hand is a bit spastic and it is very noticeable to me when I walk. This symptom was referred to as an "extinction phenomenon" at the Diamond Clinic all those years ago, and it exists to this day.

This headache was diagnosed as a "cluster variant headache" at the Diamond Headache Clinic way back in 1980, but 7 years ago was diagnosed as an "intractable migraine variant" at a clinic in Michigan. I tend to believe it's the former. It would be great to hear from head friends who can relate to this very perplexing and bizarre headache with the symptomatolgy described.

Keep on keepin' on!

Franco
Franconian@hotmail.com

Franco <Franconian@hotmail.com>
Thursday, May 9, 2002 at 01:44:06

Hi everyone:

It's me Lisa again. Well, I don't have any better news either since my last entry. I've had the most severe attacks that I have had in months over the last 4 weeks. They are relentless and I've had days where I literally lost count of the clusters after 10! It seems as soon as one cluster ends, another starts within an hour or less. I've been combining pain meds which I know is a no-no, but when you're desperate, you are willing to try anything. I've combining Percodan, Vicodan ES and Zydone (2 pills each) along with my nausea medication, Valium and my Sonata (for sleep). At least it does knock me out for a short period of time if I'm lucky. I have taken much stronger narcotics in the past, but they don't seem to work any better, so I try not to take Mepergan except in injections from my pain mgmt doctor so I won't build up a tolerance to it. I've tried Morphine, but it only intensifies my migraines. I've also taken Dilaudid, Fentanyl and Stadol. The Stadol was the worst. It not only intensified the migraine, but made me so sick and shot my blood pressure through the roof. I still try the Imitrex tablets and spray on occasion, but most of the time, it makes me so nauseated, I can't keep my meds down. I've also used the Imitrex injections, but now that they changed to the auto-injector, it hurts so bad to do the injection, and alot of the time, it doesn't work for me either. I was reading the latest postings today and I saw one from a teenager that really caught my attention. I've had migraines since I was 4 years old, I started having clusters in my 20's, I'm now 37, and they are worse than ever. My daughter has also had them since a very young age. She is now 17 and has begun having them daily as well. My advice would be to definitely try to find a pain management doctor who is sympathetic to migraine sufferers, definitely NOT a Neurologist. They have absolutely no compassion for us and treat us like we are hypochondriacs for the most part. My daughter and I are seeing the same pain mgmt doctor, and I wouldn't take her anywhere else. But, 16 years old is definitely not too young for migraines, I've seen many people start having them way before their teens. Anyway, I just wanted to check in and say that if anyone out there would like to contact me through e-mail, I would be glad to hear from you. I especially liked the entry about the no-grains people! That is soooo true!! People who don't have or have never experienced a migraine, just can't begin to comprehend our pain. Well, I wish everyone a pain-free day. Later, Lisa.
Lisa Veronie

Lisa Veronie <spicycajunbabe2001@yahoo.com>
Monday, May 6, 2002 at 23:54:33

Hi Kerri,

My name is Betty and I have a similiar story to yours. I began taking oral contraceptives at 18 because I had God-awful periods (cramps, nausea, etc...) I'd miss 2-3 days of school and be utterly miserable. Since we had only one bathroom and my family got tired of me camping in there for days at a time they decided to get me some help!! I'd had migraines since I was 10 so each time a Dr. would ask if I thought the migraines were aggravated by the pill I'd say no, that I had the migraines long before I got on the pill. I stayed on the pill until December 2001. Since I got off the pill, I've recently noticed that I haven't had many migraines. I think the last one I had was in February and that came just before my period started so I associated it with my hormones. I haven't had any major migraines lately at all. (I hope I don't jinx myself by saying that!!!!) But... I was getting awful PMS while I was still on the pill, by awful I mean that someone could say "you look nice today" and I'd get furious and ask if they meant I usually look terrible or burst into tears because I knew I was acting like a lunatic. This past year I spoke with my Dr. about PMDD. She and I are both convinced I have it. So she started me on Serafem. Which is just Prozac by a different name. I didn't want it at first, because I'm not depressed, etc.. But (again with the "buts") I did some research and what do you know, some Dr.'s were using Prozac type drugs to treat migraines since they are seratonin re-up intake(?) So the long and short of that is, I am not a neurotic mess when I am premenstrual and I do not have much in the way of migraines (right now, anyway.) I am only 30 so I know I have years to come of PMS or PMDD and possible migraines. So, yes I think its possible your hormones and birth control may be causing the migraines. Also, I've never had an MRI and I've had migraines for 18 years. Jeez, I never realized what an entire lifetime that is. I did have a CT scan when I was 15 just to rule out the brain tumor I was convinced I had. Nothing showed except that I have mini-sinus cavity in my forehead. It just never developed, but no Drs. seem to think that has anything to do with the headaches.

Hope my story helps. And good luck to you on finding birth control that doesn't cause pain somewhere!!!

Betty Kashouty <bkashouty@gulfbend.org>
Friday, May 3, 2002 at 17:00:59

I have been suffering with severe migraines for over 20 years. I have been to every doctor and tried every medication they could think of. But I have'nt been able to get consistant relief. I can no longer work at my job as a phlebotomist due to these headaches. I have also been told I have fibromyalgia and high blood pressure (probably due to the pain i'm always in). I filed for social security disability and was denied. We are now in appeal. I would'nt wish these headaches on anyone.






social security said basically that if I worked before with headaches, I am still able to work. My headaches have gotten worse over the last few years and there were many times I had to call off or leave work due to my migraines. I was lucky enough to get FMLA through my company. I was wondering if anyone out there has filed for social security disability and been approved? I have a lawyer but I feel she does'nt think we have a good chance. Any info would be helpful. Thanks!

Donna <jaystec@prodigy.net>
Sunday, April 28, 2002 at 14:31:53

Hi fellow sufferers,
I saw your inserts that were posted about migraines and decided to add my story. That way, maybe new things that come available will be brought to my attention. Here is about my migraines and my miracle medication - maybe it can help you.

I am 39, have no children and have horrible migraines prior to my period each month. I may possibly be pre-menopausal - but my mother wasn't until she was 65 or so, so the doctor says it would be unusual. I use to only get them 2 times per year, then every 3 months and now almost every month and sometimes more. My migraines use to send me to the ER. My worst ones are definitely the ones that start while I am asleep because they don't wake me up until they are too far gone. I now get migraines (just over the last year) from smells such as cigarette smoke, strong odors, smoke of any kind and strong perfumes. Below is how I treat my migraines:

I usually start with Anacin - for some reason, this works great if you take it at the first signs of migraine onset. If that doesn't work, I then take Fioricet (prescribed). This is like the drug Fiorinal except it doesn't contain codeine, making it much easier to get. I switched to Fioricet because it is less expensive, it works just as good, is easier to get and I can work! It doesn't make me even sleepy.

If that doesn't work and I get a full blown migraine, I have to take an injection of Imitrex (the pills only absorb 30% and the nasal spray barely absorbs AND makes me sick, as does the pills - neither of these two options even remotely touch my headache). I also take Phenergan (by pill, suppository or injection) prior to taking the Imitrex because it makes me very nauseated. The injection works great because you don't have to wait for it to get into your system; however, it comes with a long needle that you have to stick in your leg muscle and it burns/hurts and is a little difficult to give to yourself because you have to draw back to make sure you didn't hit a vein. As you know, however, when you are in that much pain - it doesn't matter! I have to say, however, that this "wonder" injection always puts a stop to my migraine and has saved me a lot of money on Emergency Rooms (my brain actually swells and pushes on the nerves against my skull). With the Imitrex injection (which is about $109. for two shots), your body actually absorb 90% of the medication - thus making it work great! It is expensive, but worth it compared to my old ER bills. That Excedrin Migraine works ok sometimes, but they showed on TV that it contains a lot of caffeine and will later make your headache come back even worse, unlike Anacin. Hope this helps. If anyone has anything new, let me know. Someone on this board said that cheleated calcium works wonders - I will have to try that. Tanya

Tanya <stormerage@aol.com>
Sunday, April 28, 2002 at 03:38:40

About 3 years ago I had to leave work because of a horrible headache. It lasted for 20 days. I have never taken so much vicodin, morphine, and demoral in my life. I was finally put on elevil and sent to a neurologist. He put me on vivactil and told me to get used to it because it was called chronic daily headache syndrome. What the hell is that. How can a human being possibly live through a headache that lasts a lifetime? I finally have managed thru trail and error to at least get to the point where I am pain free most of the time. The only thing is that I can always feel my brain. It is very wierd but I am always aware that the pain is lurking somewhere in my brain just waiting for me. I have had all the scans and pokes and prods and I still have this damn headache. I am very angry that no matter which doctor I talk to no one can tell me how to get rid of it. And whenever I can't go to work I know that people are thinking what a lame excuse that is. I am also concerned about what these meds are doing to my other insides. My doctor tells me not to worry but how can I not. Last week I missed 3 days of school because of a migraine. I am so tired of this it just really pisses me off that there is no cure for this or even an explanation to why this is happening to me. Thanks for letting vent. kim

Kimberly
Wednesday, April 24, 2002 at 17:17:10

Crying and sitting there, blood coming out of your nose, blind in both eyes, and not being able to walk 'cause of the hard underground,...is something that I've been living with for the last 20 years...I'm 29 years old!

Angelique S. Payne <duckster27@hotmail.com>
Tuesday, April 23, 2002 at 08:52:52

Someone help me! I've gone through the whole website near enough and i think im the youngest here (16). I always thought migrains were for older people till i read people saying they had them since there teens. I've recently been getting them for the past few months and cant be arsed to go to the doctor because it takes up my study time and all the appointments are always booked so i just leave it. i always thought i had headaches until i realized they have a name for a certain type. MIGRAINES! anyways i need help, its putting me off study and i have exams in 5 weeks and i cant concentrate in lessons nor at home while im studying. i dont know what else to do. are there any rememdies or medicines i could use to get rid of them? i dont want to see the doctor because i have no time and nor do they. anyone help? please?
Please someone email me with some decent advice.
( selina_iqbal@hotmail.com ) Thanks.

Selina xXx

Selina <selina_iqbal@hotmail.com>
Monday, April 22, 2002 at 11:27:01

I am 32 years old and have suffered from daily headaches for as long as I can remember. Most of my headaches are probably stress-induced and they are different from migraines, but for the past 3 years I have had true migraines more and more frequently. This past year has been particularly tough. I have a migraine episode about once every two weeks and in between I have my "normal" low-medium level headaches.

I have noticed that I tend to get a migraine a couple of days before my period starts, but I have not been able to pinpoint any other triggers. I don't experience any visual auras, but my scalp does tingle and crawl right before the pain starts in my eyes. Many times I just simply wake up with a full-blown migraine. My migraines usually feel like someone is inflating my eyeballs with air--I feel a painful pressure in one or both of them. Then the pain moves to various areas of my head, and it isn't consistent from one migraine to the next. Eventually, it just feels like my whole head is going to explode. When it is really, really bad I can hardly move my body without it hurting in my head. It is like my brain is swollen and pushing against the cranium. My hair and teeth also hurt. I also have tinnitus which is probably due to the amount of aspirin I take. I can also barely keep my eyes open--I feel like I have been drugged and I have a hard time thinking logically and being aware of where I am at and what I am doing. I, of course, then get sick to my stomach and throw-up. I am also very sensitive to light and to odors. Odors like strong cologne, chemicals, or even certain foods particularly bother me and make the nausea worse. Sounds don't bother me at all. When I have a migraine I am also sensitive to temperature. I feel very hot and I sweat and I need to be in a cool room. The cool temperature makes me feel a little better and eases the nausea.

When I have a migraine it just simply makes me incapable of doing anything. I have missed too much work because of them and my boss has even talked to me about how my being sick is interferring with my ability to do my job effectively. That scares me. I am a very ambitious person and never before has my headaches ever prevented me from functioning relatively normally in everyday life.

I have seen several doctors and have had an MRI done and was told that I have an "unremarkable brain." I really liked that answer :P I have gone to the dentist to see if it is a dental problem and have gone to the eye doctor to make sure it is not ocular. Both the dentists and the eye doctors have no clue. I have also tried Inderol (which did not help), several allergy medications (which have not helped), and Zomig. Zomig does get rid of the migraine if I can get past the nausea and not throw up the medication. I have an appointment with my allergist this coming week and I hope that she can offer me something more constructive than "Well, you are not allergic to anything, but let's try another expensive allergy medication anyways." The last time she spent all of one minute reviewing my case and talking with me. I think it is time to move on to a neurologist or a pain management specialist.

Going through this experience has inspired me though. I plan on going to medical school in 2 years and I have considered pathology as my main interest. Now, however, I have become more interested in neurology and the possible genetic cause of migraines. I am quite certain that my headaches and migraines are genetic. There is a direct lineage in my family. Coming from my mother's side of the family, my grandmother, and great-grandfather both had migraines as does my mother, brother and my brother's son. There must be something about our brain physiology that pre-disposes us to headaches and migraines. I have yet to research any of the scientific findings on headaches and migraines. I don't even know if researchers have identified a "migraine" gene yet. I plan on spending some time during the next couple weeks digging for that information.

If anyone has any information or suggestions for me, please email me! I will also post any information I find that I think would be useful for others.

Heather K. Burgess <hburgess@bcm.tmc.edu>
Sunday, April 21, 2002 at 03:11:04

I came upon this website a couple of months ago while doing some research for myself since nothing else seemed to be working. Being a migraine sufferer for at least 5 years I finally had enough nerve to see a neurologist yesterday and was quickly reminded why I haven't done it sooner. The doctor I saw did absolutely nothing for me. All I got was "it sounds like a typical migraine to me....try these meds and call me if they work". Thanks, but no thanks!! He made me feel like I was wasting his precious time and in my eyes felt like he did nothing for me. It seemed like he didn't even bother to listen to me cause when I told him what previous medications didn't work for me, he tried to give them to me anyway. And of course he told me everything that I already knew. I am not stupid, I have suffered from this long enough and I think I have some kind of clue to what I am going through. So after an appointment from hell and no new answers and not even being sent for an x-ray or a catscan, I left very frustrated!! I have made an appointment to see another neurologist in about 5 weeks. While I am very weary of going to another doctor I have come to the conclusion that I have started this process, I might as well finish it. Have any others had problems like this? Would love to hear your stories and input! Thanks for letting me vent!

Carrie
Thursday, April 18, 2002 at 10:23:48

Hello, it's me again.
I just wanted to let everyone know that I had the DHE shots done and just got out of the hospital yesterday. So far I haven't had a migraine...knock on wood!
My family doctor decided to give me the DHE shots since I could not get to a neurologist soon enough. He did however discussed it with the neurologist I did see to get the protocol for it.
I was admitted into the hospital for 4 days....3 for the DHE protocol and 1 to make sure they didn't come back. They had to constantly moniter my blood pressure because this medicine will cause high blood pressure. He also gave me medicine to make sure that I did not have any swelling on my brain, since I had the cluster for so long.
I'm just glad to be home and without a migraine.
And good luck to anyone who tries this.

Tracy <ctcstalkfleet@machlink.com>
Monday, April 15, 2002 at 20:38:38

Hello to all.I had a migraine just last Thursday April 12.Today is Monday April 15 and I'am still very sore.I've had migraines for over 6 years.I know the pain all to well.It is and can be a living hell.This is a great web page.I have book-marked it already.

Barry <brussell@dis.umsmed.edu>
Monday, April 15, 2002 at 13:44:26

I came upon this website a couple of months ago while doing some research for myself since nothing else seemed to be working. Being a migraine sufferer for at least 5 years I finally had enough nerve to see a neurologist yesterday and was quickly reminded why I haven't done it sooner. The doctor I saw did absolutely nothing for me. All I got was "it sounds like a typical migraine to me....try these meds and call me if they work". Thanks, but no thanks!! He made me feel like I was wasting his precious time and in my eyes felt like he did nothing for me. It seemed like he didn't even bother to listen to me cause when I told him what previous medications didn't work for me, he tried to give them to me anyway. And of course he told me everything that I already knew. I am not stupid, I have suffered from this long enough and I think I have some kind of clue to what I am going through. So after an appointment from hell and no new answers and not even being sent for an x-ray or a catscan, I left very frustrated!! I have made an appointment to see another neurologist in about 5 weeks. While I am very weary of going to another doctor I have come to the conclusion that I have started this process, I might as well finish it. Have any others had problems like this? Would love to hear your stories and input! Thanks for letting me vent!

Carrie
Thursday, April 18, 2002 at 10:23:48

Hello, it's me again.
I just wanted to let everyone know that I had the DHE shots done and just got out of the hospital yesterday. So far I haven't had a migraine...knock on wood!
My family doctor decided to give me the DHE shots since I could not get to a neurologist soon enough. He did however discussed it with the neurologist I did see to get the protocol for it.
I was admitted into the hospital for 4 days....3 for the DHE protocol and 1 to make sure they didn't come back. They had to constantly moniter my blood pressure because this medicine will cause high blood pressure. He also gave me medicine to make sure that I did not have any swelling on my brain, since I had the cluster for so long.
I'm just glad to be home and without a migraine.
And good luck to anyone who tries this.

Tracy <ctcstalkfleet@machlink.com>
Monday, April 15, 2002 at 20:38:38