By Stacey on Tuesday, March 23, 1999 - 08:01 am: Edit

Hello,
It is so nice to see that I am not alone. Before I was diagnosed, I thought that I was going insane. The doctors act as if you're making it up. The process to find out that it was B.A.M. was long and scary. First, they said Meniere's Disease, then brain tumor or M.S. I'm glad that it wasn't one of those.
I have had B.A.M. for about five or six years. Although, I remember having symptoms long before, but, I guess I just dismissed them.
I have head pain or some other problem every single day. It is non-stop for me. I have learned to deal with it as best I can. I take Elavil once a day. It helps keep the severity down a little, but mostly, it stops the vertigo. I also have scripts for Esgic Plus and Fiorinal. They help alot.
I have modified my diet. I think that anyone with B.A.M. should avoid processed foods of any kind. It's the preservatives that get you. I also avoid the common trigger foods: cured or processed meats, cheese, yogurt, whole milk, yeast products, beer and wine, garlic and onions, and ...well, you probably know the rest.
I think that it is unbelievable that our government does not see this disease as a permenant disability. I have applied twice and been denied. I can't hold a job due to frequency and severity of my illness. Not to mention when I have the "out-of-it's". I look and act as if I'm drunk. It's embarassing. I wish something could be done to increase public awareness.
Thanks for the web page and thanks for listening.
I welcome any e-mail from fellow B.A.M. sufferers.

By Anonymous on Wednesday, March 24, 1999 - 10:31 pm: Edit

I have just been reading the mail from other people on this page and realise that, at last, what happens to me makes sense. I gradually lose my speech,my sight, and then my consciousness. I have a high temperature and excrutiating pain. Then I get a right sided paralysis like a stroke. The neurologist says it is hemiplegic migraine but every hospital I land up in says you do not go unconscious with migraine. Could it be that I have BAM rather than pure hemiplegic migraine,as doctors who do not know me always end up testing me for some kind of brain stem injury - fixed and dilated pupil on one side, totally out of it, and obviously pretty sick. Is there anyone out there who has come across all of this? AN ENGLISH LASS

By Anne Hollister on Thursday, March 25, 1999 - 05:23 pm: Edit

I just got out of the hospital after 7 days of treatment for intractable basilar artery migraine, including 12 Decadron IV treatments, EEG, and other tests. I am finally hooked not only to my neurologist, but to the hospital's reputable pain management clinic (related to anesthesiology). I am now off all abortives (no more Midrin, Fiorinal, Vicodin) and on methadone 5 mg BID (2x/day) and have not truly had such pain relief in quite literally years, and I'm still in my 20s. To the above person (An Enlglish Lass), you certainly can and do lose consciousness from some migraines. Get some new doctors! I also was informed that my "third nerve" running behind my eyes has been permanently damaged by BAM and my lids therefore are drooping and a sort of surgery for tucking the lids may be needed in the future. I feel relieved for methadone, a bit stigmatized by the the drug, but thank God for the drug. I am sorry to learn of the damage this so unknown rare migraine can cause to me, but I do feel more hopeful than I've felt in years. I remain on verapamil, aspirin per day, Neurontin for peripheral neuropathy, Wellbutrin, lithium, and Klonopin. I would greatly appreciate having another yound person to correspond with about this illness, particularly regarding trying to work, function, be happy in life. Thanks to all and hang in there.

By Linda Heard on Friday, March 26, 1999 - 10:42 am: Edit

Having done research for a dissertation on migraine - I have discovered that what I have suffered from for the last thirty years is in fact BAM! The sypmtoms described are exactly like mine.

I have been looking at recall effects in migraine and have found that recall is causing a bigger reaction in the peripheral vasculature than recall of other 'stressful' events. I guess this is the same for BAM.

By jennifer balliet on Saturday, March 27, 1999 - 06:06 am: Edit

I was told last week that I have "variant migraine". After reading your web site, I am sure that it is BAM. My neurologist doesn't seem very worried, he prescribed 1 aspirin a day, and recommended that I see my gynocologist about stopping birth control pills. I had an MRI, echo cardiogram and brain wave tests--all turned out OK. I have had aura migraines for years, usually just the zig zag neon lights for 20 minutes, but rarely accompanied by the headache. I also had inability to think or make decisions during these periods. Then 2 weeks ago I stepped into a whole new scary realm...with no warning my vision "overlapped", I guess you call it double vision. Weirdly enough, I can see out of each eye individually, but when I look with both, the vision is overlapped. This lasted about a minute, I thought it was a stroke. I also got vertigo with it. For weeks now I have been feeling slightly dizzy...like I'm falling off to the left. Two years ago I started having trouble with my ears, they both felt plugged and I have constant ringing in them all the time. After reading your website, I'm starting to realize it's probably all connected. I also have some days where I just don't feel good, like my brain is in a fog, I can't think. I had encephalitus when I was 15, I'm 47 now---I wonder if that has anything to do with it. I am in the Seattle area, does anyone know a good doctor here? My neurologist was OK...I just don't think he's concerned enough. I am very apprehensive about my symptoms getting worse. I feel pretty lucky after reading some of the other accounts. Thank you for having this wedsite, my doctor didn't tell me much.

By Jessica on Tuesday, March 30, 1999 - 01:19 am: Edit

I was just diagnosed with BAM. Luckily, I did not have to go through years of searching for a diagnosis like many of the people I have read about. I am a 21 year old female with a history of juvenile "classic" migraine headaches. So, the BAMs are new for me. I present without the actual headache so many of the doctors that treated me while I was hospitalized totally missed the mark. Right now I am considering the Medic Alert bracelet, but agree that something other than migraine should be put on it. People hear that word and just seem to stop listening, assuming that it is just a headache. I am still a little bit confused about the difference between a TIA & BAM, they seem very similar. Anyway, I am going to a special Headache Clinic that Brigham & Women's Hospital offers here in Boston. Apparently they specialize in this disorder, so I hope to get more answers. Thank you so much for this great site. It is really wonderful to finally have an answer and see my symptoms making sense.

By Audrey on Tuesday, March 30, 1999 - 10:21 pm: Edit

Frist I would like the thank your for creating this web site. I can't tell you how many times I have looked on the web for information on Basiler migraines. I have found few dr.s that are aware of this problem and I am currently looking for one in the Dallas area(suggestions requested). I was diagnosised with it roughly 9 year ago along with possibly Mineare's; I am currently 33 yrs old.

There was a post from Margret on Feb. 5 that did not have an e-mail address and no way to respond. I would like to know more about your daughters seizures. Are they epliptic ones? I have convulsions at times during my "episodes" and would like to know if this could be associated with my Basilar Migraine attacks. A slight shaking accures in my left arm before I "passout" where I can go into full convulsions. I am not epliptic. I have normal brain waves, even during the convulsions;I am semiconsious, sometimes I can hear what is happening,but cannot respond. I have been searching for an answer for so long. One was recently brought on when I had testing done for my inner ear. They were changing the pressure in my ears. I had blurred double vision, passing out, could hardly walk and shaking.

Please e-mail me at w04fun@aol.com with any information, it will be greatly appreciated.

Again thank you for creating this site and any responses I may receive.

By qt_to on Monday, April 19, 1999 - 07:51 pm: Edit

I really appreciate the information I have found on this web site, as I think I also suffer with BAM. It is a big help, and I am in the works of discussing this condition with my Neurologist (if he ever decides returns my phone calls). Thanks!

By Kenda on Tuesday, April 20, 1999 - 02:36 am: Edit

Wow - I am so sorry to hear that there is so much suffering going on out there. Your stories sound so much like my own.

I have been so frightened by my symptoms. I have the aura's that completely rob me of my centeral vision in both eyes. My hearing becomes muffled. I experience numbness, burning and pain in my extremeties that travel around my body always settling in my face, lips and tounge. I can't talk without slurring my speach let alone formulate sentances or a cognisent thought. I have exercised poor judgement and have passed out while driving, resulting in one accident, fortunatly no one was hurt.

I have had a complete neuorlogical work-up but all the test results came back negative. Since they couldn't figure out the cause of my symptoms they labled them Complex. So I wasn't any closer to a diagnosis than before.

That was four years ago. My doctor perscribed Imitrex which helped shorten the durration of my episodes to about 1-2 hrs but they have become less effective. I have never liked taking them because I feel a tightening in my chest and my migrains always got worse before they got better.

In the past 2 yrs my migrains are coming more often I can go several months with out one but then I'll have 2-3 of them in one week. I am also noticing that I am experiencing residual symtoms, poor motor coordination, lack of energy, inability to think clearly, sensitivity to light especially when try to read from a computer terminal.

I want to thank you all for sharing your stories with me. I made an appointment to go back to see my Doctor in a couple of weeks and with the information I have found on Karyn Huntings BAM Page, perhaps we can finally get to the root cause of my Migrains and maybe I can get some relief.

Thank you!

By Terry Hartle-Feldner on Tuesday, April 27, 1999 - 04:08 pm: Edit

I've just been tolded that I have B.A.M. They are triggered by chemical Exposures.I haven't been able to work since Oct.

By LeAnn Campbell on Friday, April 30, 1999 - 05:14 pm: Edit

I was so excited reading the information on BAM. My Migraines suddenly changed a couple of months ago and I had numbness in my face. I went to a neurologist and had an MRI done. He called yesterday to tell me that I had suffered a small stroke! I was shocked...I feel fine and am only 29 yrs old with 3 small children that I desperately want to watch grow up. This information has really vendicated me...I was beginning to believe my symptoms were all imagined but now I understand so much more. I am also please to know that my neurologist seems to be very informed about this type of migraine.

By Tricia Robertson on Saturday, May 08, 1999 - 07:48 am: Edit

My husband has suffered 16 yrs from what was termed "variant migraine," for lack of a better diagnosis. Recently, his "attacks" have become more frequent and severe. Scott is now 32 and we finally have a doctor who is looking into the matter. Up to this point, all the many doctors he's seen have been able to say is that this is not epilepsy, though the attacks resemble seizures. Many observers have noted that he really looks like he's having a stroke. Our new doctor has order an EEG, MRI and blood work. However, her preliminary diagnosis was basilar migraine.

His symptoms begin with a tightening (extreme muscle tension) and drawing in of his left arm and sometimes left leg, followed by shaking which includes his head. Bad attacks include a feeling of "things not tracking" normally. He appears wooden and disoriented, and is slow to "give and receive info." Recently the attacks have extended to his right side as well. He is aware but unable to speak during the height of an attack, which can last for 5-45 minutes. Following this, he drags his left leg when he walks (it's still tense) and he experiences severe pain at the base of his neck and sometimes behind one eye. This phase lasts for hours and he usually has to sleep it off (10-14 hrs).

It seems like he has tried all the drugs on the market at one time or other, and a lot of the "alternative medicine" routes, as well. We would like to correspond with anyone who has similar symptoms, especially if you have found helpful treatments. I would also be interested in correspondence with other spouses of BAM sufferers. Is there anyone in the N. CA. area who has received successful treatment? Thanks.

By Andie on Sunday, May 09, 1999 - 07:09 am: Edit

Hi!

I am so thankful for this page. I have epilepsy and up until April 7th I just had migraines. On April 7th I got a doozie. I woke up about 3am to go to the bathroom and I was so off balance I could not hardly walk. As I got back to my bed things looked weird, out of focus, kind of bouncing. I went to bed and back to sleep and all was fine. I woke up and I felt great. Then it happened again. I was on the phone with my Mom and things in the room bounced and my head was hitting the back of the chair. Things started moving, not spinning(I have had that) moving. My vertical blinds moving up, the ceiling moving across side ways. I had another one this last Wednesday May 5th. I am not sure that I have BAM or not. My symptoms sure sound like I do. My nuerologist told me when the first one happened that if the meds did not start working then I would have to go to the ER because I could have a stroke. I saw him recently and he said that I have Chronic Migraine Disease. I will have to ask him about BAM. I just thought I would add my thoughts and say thanks for the page!

By Barbara on Wednesday, May 12, 1999 - 05:35 am: Edit

My name is Barbara and I live in Southern, CA. I started having migraines after a neck injury from an accident in 5/96. I had symptoms of BAM. But after my Disectomy surgery on my neck 12/97. The fainting and/ or stroke, seizure, convulsions depending on which Doctor I had seen had stopped but not the severe migraine pain and nausea. Until 7/4/98, when I passed out at our 4th of July party. As of 4/2/99 I have had 14 seizure like activity. on 5/6/99 I lost my sight for 1 1/2hr. I went in and out of conciousness and went in and out of convulsions. Luckily my friend was driving and she called an ambulance. The results of my EEG,EKG, MRI and other test show that I don't have epilepsy. My Neurologist says that I'm not having seizures. That I am going unconcious before I start having convulsions. I am schedulled for more test with the cardiologist to see if my Blood Pressure or Heart can be part of the problem. Has anyone had any test on their heart and what were your results? I lost my drivers license due to fainting and I have migraines daily but I can keep them under control most of the time with my meds but sometimes I have to go to the hospital for Demoral or stadol shots. I take stadol NS at home but it doesn't always work. I would like to hear from other sufferers and find out what works and what doesn't. I feel like a Test Rat! My Neurologist wants to put me in a 6 week intensive inpatient pain management program. Has it helped anyone? I have also been told that I could loose my sight anywhere from seconds to a couple of weeks! This frightens me! Anyone else going to complete blackness for periods of time? I'm sorry I took so much space. I would appreciate any advice or insights. My e-mail address is
. I keep all of you in my prayers!

By Sandra L. on Sunday, May 16, 1999 - 03:15 am: Edit

My son is 26 and about a year ago had a terrible headache accompanied by the following symptoms: blurred vision, racing heart, high blood pressure, inability to swallow, drooling, loss of use of left arm and hand with some tingling and numbness. The headache was centered over his left eye. A Cat Scan revealed nothing and a follow up visit with a neurologist was not conclusive (only suggested TIA). He did not have any more problems until recently. His is under severe stress. This time he has tremors in the left hand, some numbness and persistent headaches even after the severe headache (again over the left eye)has gone away. After another trip to the emergency room and Cat Scan -- still no diagnosis. He is scheduled to visit a neurologist and I am wondering if he should mention the possibility to BAM to the physician.

Thanks

By jenart on Sunday, May 23, 1999 - 06:09 pm: Edit

Hello! We've posted here before, but since getting an e-mail from a fellow BAM sufferer I decided to check in and update. My name is Jen Fisher and my husband's name is Art. Back in the beginning of October '98, Art was diagnosed with BAM. As I'm sure everyone knows, it's an extremely stressful time. Since then, we have moved on from seeing Dr. Israel (we already had a GP who we love) and Dr. Beg (who is a great neuro but wasn't covered under our insurance). Even though we have moved on from them they are great doctors and I would continue to say that they are wonderful people and the personification of what good doctors should be. I would like to let everyone who lives in the NYC/Westchester/Rockland County areas know that we are now seeing a doctor associated with the Montefiore Hospital Headache and Research Institute. The hospital and headache clinic are located in the Bronx, you can call information for the number. The doctor we're seeing is Dr. Randall Berliner who has absolutely been a gift from God. He has an outside office in Ardsley as well, which is where we first saw him. Soon after we began seeing him, Dr. Berliner added a couple of meds to the Depakote that he was already on. Since that time Art has not had a BAM episode. Now I'm not saying that Berliner is a miracle worker, but he is an incredible person as well as a brilliant psychiatrist and neurologist who has experience treating BAM patients. Although Art has had some setbacks with classical migraine clusters, he's been doing well. (I guess the next message should be from him!) Please, if anyone needs help, don't hesitate to write to us. There is a long wait to get into the clinic but these doctors are very much worth trying! Good luck and good health to everyone out there!

Sincerely, Jen Fisher

By Dorothy van Leesten on Saturday, June 05, 1999 - 09:33 am: Edit

Hello to all and thanks for this "migraine variant" clearinghouse. I am 45 and was hospitalized for 3 days in March with what was first thought to be a stroke.
I was later diagnosed with neither stroke nor TIA, but BAM. I have a great neurologist, and I'm going to forward his name to the woman looking for same in the D.C. area.
After suffering with headaches for the majority of my life, the episode in March was the most severe.
I am interested in hearing from people about how they cope and their methods of improving the quality of life.

By Pamela on Wednesday, June 09, 1999 - 11:23 pm: Edit

What an interesting site. I've been struggling with various symptoms for over three years. It started with tinnitus and hearing loss in one ear. The otologist diagnosed cochlear hydrops. Then, last fall I had my first vertigo episode, followed by an intense headache and disorientation. The otologist diagnosed menieres (although he did no testing). He recommended a low salt diet and prescribed antivert (useless!). I have had 10-15 "episodes" since then. These usually involve a period of vertigo (lasting from 10 minutes to 2 hours), followed by an intense headache behind my eye and an uncontrollable urge to sleep. I've also had tingling in my arm and problems swallowing. Then there's the "floaters" in my eye (which come and go and are often unassociated with any of the other symptoms). The vertigo can be intense (room wildly spinning for up to 2 hours) or more like a disorientation or drunken walk (this can last much longer). These incidents repeat each day for several days (up to two weeks) (this is what I call an "episode") and then I'm more or less symptom-less for up to two weeks (except the eye thing which comes and goes all the time and the hearing loss and tinnitus which is constant). Last month I finally found a terrific neurologist. He diagnosed me with VESTIBULAR MIGRAINE (has anyone else heard of this - the only other info I've seen on the web about this is in a John Hopkins site - this Doctor works at Johns Hopkins). He prescribed Zoloft (daily) and Clonazepam for the vertigo attacks. I've been on the Zoloft for about 4 weeks and I've been more or less symptom-less for the last 2 weeks. I'm keeping my fingers crossed. I'm seeing my doctor next week and I'm going to ask about BAM. Mostly I'm interested in the testing involved in diagnosing BAM. My doctor did a physical exam (and did this thing where he watched how my eyes responded to sudden movements) and concluded that I had a vestibular disorder and ocular disorder. This in conjunction with the headaches and arm pains lead him to the conclusion that I had Vestibular Migraine and possibly complex migraine. Can you let me know what you've heard about "Vestibular Migraine" and whether the tinnitus, eye thing, and hearing loss ever go away?

Thank you for a great site.

By Barbara Perez on Thursday, June 10, 1999 - 03:11 am: Edit

I am going in for a complete cardiology work up on Friday. My Neurologist is concerened about damage to my heart from my many, many seizures and the high blood pressure that follows them (165/115bp).(The next day I'm back to 120/70bp) I am on Neuromtrin now. I can't take Depakote, I'm allergic to it and many more. This Neurontrin has kept my seizure activity down to 1 every 4 days. (I have migraine inducessed seizures, my Neuro's terms) but I feel horrible, I haven't had a migraineless day in months and I'm exhausted and frustrated! Anyone else having problems with high blood pressure? i have developed it over time and as I stated above only following seizures.(shellyprz@yahoo.com)
Thanks,
BARBARA

By jsfsgusd@hotmail.com on Friday, June 11, 1999 - 12:40 am: Edit

Hi! What a blessing your web site is! It's been a relief to know that I am not alone in what I suffer. I have had migraine headaches for years and have only recently had them identified as BAM. I have had a difficult time locating a competent neurologist who not only knows about BAM, but understands the complexities of it as well. Can anyone recommend a neurologist in the Pasadena to Glendora area?

In addition, I have a question. Have any readers been faced with the perplexing issue of chiropractic treatments? I have had treatments for years, hoever, I am now coming across warning against such treatments for BAM suffers. Can anyone out there shed light on this?

Thank you for your assistance. Please continue to update this website. It's great!