MIGRAINES and Narcolepsy?

[stevie]

I think the shot is Immitrex. Just stronger and mainlined. I am not certain though. I will ask next time. I probably knew once........... I tryto judge wether or not it is an especially mean and wicked migraine, and if it seems like it might be especially mean and wicked then I am to ask for the shot ASAP, so as to avoid having any pills in my gut when I get the shot.

Usually the migraines are just bad. Once in a while though they are real skull crushers. Ooh, I hate those. It is then that I can not take any light at all. Not even the clock LED. Yikes! I am glad I only suffer a half dozen in a bad year, maybe three or four in a better year. I think that N has to do with it, from bonking my head from C. I never had a single migraine before I had a head bonker C.

[Andromeda1528]

i have a question for all of you--- do you only get migraines in the afternoon? seems to be the case with me for some reason, i think it might have something to do with the narcolepsy

[Countingsheep]

Not for me. Sometimes I wake up with them.

I also sometimes have those VIVID dreams that I have a headache. Unfortunately, sometimes they are true, and when I really wake up, it's really there.

However, if the headache doesn't get under control, it will worsen as the day progresses. I think my most common time of day to (sorry ) lose my cookies is about 5PM. So maybe there is something there.

I do know that the more sleepy I am, the more likely I am to get a migraine.

[lomv]

How are everyone's migraines? Usually for the tryptan class of drugs (like imitrex, zomig, relpax), you have to get the drug into your system within the first 30 minutes of the migraine or it is ineffective. The spray version is considered slightly faster for absorption. ask your neuro for some free samples. If you are getting frequent, say 4-6 or more, per month, you may be helped with a low dose of beta blocker, as long as you are not hypotensive.
If your migraine is unresolved after a certain amount of time (usually several days) and you ahve not been diagnosed with status migranus (status migraines taht last several days and require medical intervention-ie they will not go away on their own without drugs), your neurologist will usually ask to see you so other causes can be ruled out (like encephalitis, infection, etc). Youmay be offered a shot at this point, which is usually narcotic/opioid pain relief but could vary.

I keep opioids and narcotics at home for such pain. I have status migraines. Fioricet, whcih has tylenol-cafeeine-and butalbitol is pretty effective for me. though it can be addicitve, it is not classed as a narcotic. i have also found vicodin and codeiene to be effective. For all of these types of drugs, you can develop what is called a rebound headache if you take the meds for more than 2-4 days (depening on the individual). It is basically a withdrawl headache from stopping the medication, so you ahve to be careful not to take it too long. You may start to notice a headache creeping up in the morning and and you reach for the meds, and you create a cycle, since y ou are developing an addiction to the drug. Once you learn how your body handles it, it is fine.

Some people, including myslef, find some cafeeine is helpful to combat migraine. I jstmake sure I don't have too much, or it makes me more nauseous and prone to vomiting, and it may keep me up at night and the tiredness the next day contributes its own headache. For me, as soon as I feel amigraine coming on, I try to take a tryptan (except when I was pregnant and nursing) and if I feel symptoms still 9usually blunted) within the hour, I take a pain relieveing agent (prescription). I rotate my pain meds since this reduces the chance of rebound headaches and also increases the effectiveness of each of the drugs. I believe in very aggressive treatment of certain conditions and stay with doctors who are like-minded.

I am curious about those who feel their migraines are linked to EDS. Do you find that the migraines can be reduced or can go away if you sleep it off, without pharmaceutical intervention.

I hope you all find a treatment protocol taht works for you soon. ID of triggers is an important step.

[Countingsheep]

lomv,
Wow! Once again an informative post. Wish you lived near me so I could pick your brain in person!

Anyhow... Although I've had the migraines all of my life, they recently got horribly worse. I just started trying tryptan drugs. I am VERY hypotensive (try a resting blood pressure of 80/40 ), so I can't take beta blockers. I took beta blockers once when I was ~16 years old to stop a 2-week migraine -- it was like magic then. Too bad I can't do it now. So far, the tryptans haven't worked, but it could be because I wait too long. I'm allergic to Immitrex, so I couldn't use it. I tried Maxalt with barely noticeable relief. Now, I've tried Relpax twice. Again, it took the edge off, but that's it. I'll have to ask the doc about the spray type.

I can get 4 migraines a month. Some last for 3-4 days. I keep a diary, and easily 60% of my days are with some type of headache. I never heard of status migranus (sounds like some genus/species in the lizard family ). My new neurologist is asking a lot of questions about the headaches, so perhaps she will have some of these answers for me.

So what helps? Caffeine can help me if I'm not too far gone. Once the headache is too bad, I would just vomit if I drank it. However, if I drink it right as the headache is coming on, it sometimes helps a little. Sleeping is the best way for me to get rid of the migraines. Of course it has to be in pitch black silence for at least three hours. And, even then, that doesn't always work. So far, I have better results from sleeping and caffeine than drug intervention.

How do I ID my triggers if it's so frequent? The only thing I know for sure is red wine. One glass guarantees a migraine vomit fest! Too bad, as I used to really like red wine.

Migraines are hereditary, aren't they? I had a grandmother who used to get them. And, unfortunately, I think my 5-year-old may have them. He says he has a headache, then starts screaming until he falls asleep. He sometimes throws up, and then says he feels better. He also says he feels better when I turn the lights off. Scary that I think I may have passed that on to him. Fortunately, it's only happened a few times. My poor baby. I guess better that than my sleep disorder?

[lomv]

hi all.
countingsheep, your bp does sound too low to be on a beta blocker. Is yoru bp stably that low (the bigger problem seems to be the systolic-top number). Mine flutuates quite a bit with a range of 90-120 systolic, and 60-80 diastolic. It is high enogh to take a b blocker under proper neuro care. I was getting at least 4-6 status migraines per month so a large fraction of my time was with migraine. A lot of peopel don't undestand status migraines and though I could easily leave work if I had a migraine, it was less understood why I didn't reappera for several days after. For me cigarette smoke is a huge trigger and there is a high chance of migraine from the smoke. It can be really acute amounts of second hand smoke even, from someone walking down the block ont he same street. I hold my breath, move fast, try to cross the street and avoid the smoke if possible, etc. My husband realized how sensitive i had become to smoke and used to drop me off at restaurants, etc so taht I wouldn't have to walk past a lot of smokers ( we used to live in manhattan). When I would go to the burbs, I had much less migraines. We have recently moved to a small town in CA where there are very few smokers, though I work in the city (on a smoke-free campus). Some women correlate some migraines to their monthly cycle as well. If this is the case for you, then you have id's one trigger and can plan part of your life around that semi-predictable (depending) part of your life. Another common trigger is abrupt changes of weather or climate. when you live in the tristate, this is just a fact of life though. Have you noticed that you ahve more severe or frequent migraines during the changing of seasons or when it suddenly warms up, cools down, become rainy, humid, etc. My friend gets fierce migraines and has even needed to go the hospital due to undiagnosed migraines taht happen when the seasons change. Since her migraines seem "dormant" during the warms months from april-september, it is always alarming to see them. Now she is diagnosed and treated. She always thought they woudl go away or that she was overtired from raising her child. Another common trigger is chocolate and red wine or other food items (for some it is the flavor enhancer MSG-monosodium glutamate, which is common in fast foods, prepared foods, snack chips, dry roasted nuts, some asian restaurants also cook with it abundantly). Once you id the triggers, it is easier to change your lifestyle around them and avoid some of the migraines. It is also important to find the tryptan or drug )including the dose and timeframe you have to take it. For me, if I am around a smoker (and can smell the smoke) for more than 10 minutes, I feel a migraine starting I immediately take a tryptan high dose plus a fioricet. This combo works well for me. I have to ask fast, so i always keep medicine handy-inmy purse, the stroller, the car compartment, and my office (when I used to work). If you miss the critical window of opportunity for the drug to stop the migraine, you may be stuck suffering through it. Pain itself can leave you fatigued as well. you will need to determining whether sleep depravation itself is a trigger fro your migraine or whether the migraine and its associated pain makes you tired and sleepy.

well, i live on the opposite coast now. I had been onthe boards with a different login before (but have forgottenthe login/password) some years ago for a short while. I am only now revisting them. I will be restarting my drugs soon and wanted help remembering some of the experience of starting up on the drugs I will be going on.

[Countingsheep]

Yes, I forgot to mention those other triggers. I almost ALWAYS get a migraine the day before my cycle starts. Like CLOCKWORK. And, my husband actually figured out the my head is a weather predictor. Whenever a major low pressure system is coming through, I get a migraine. I also get the season-changing thing. The shift from winter to spring seems to be my worst. Those late winter/early spring days, I can get migraines that seemingly never end.

I guess I know more of my triggers than I thought, but what can I do about it? I can't change my cycle or the weather! I have eliminated red wine. I avoid a lot of processed foods, and I never buy anything with MSG.

Sounds like everything triggers me, huh?

My next neuro appointment is Thursday Feb 22nd. Wish me luck.

[lomv]

although you cannot a lot of your surroundings, you can try to plan ahead for things taht are somewhat predictable. Try to plan for a very low-stress, low-activity day, with little int he way of appointmenst and obligations. You can try to modify your environment slightly-temperature and humidity control within your house. If you ever consider moving across geographical zones, you can take weather and climate into greater account. If you have little in the way of family or work obligations, you may even be able to travel during times when you know the weather may adversely affect you. Also, you can be sure to keep effective meds on hand so you can take at a moment's notice. There is not much you can do abotu menstrual-related migraines. I am not sure if an of the contraceptives, some of which greatly reduce your cycle (like depo provera), might help. You may want to discuss it with your gyn and neuro.

If MSG is a trigger, you ahve to be especialy careful with food labels, since MSG goes by various synonyms in the food industry, and they sound very harmless and nothing like a chemical name.

[wayong]

well, my EEG shows I have Migraines/Seizure Disorder (when I was 16 & now current at 35). Apparently, my white matter my brain shrunk (not sure what that meant). I've been getting 2-3 migraines a week (wake up in the morning), with about 2-3 severe ones a month. I've been under a lot of stress- ovarian cysts (doctor is doing a "wait & see"), severe periods, difficulty at work, respiratory problems, upper GI problems... then beginning of this year I vomited 60 cc of blood, got carted off by the ambulance & police, received transfusions, was told not to take NSAIDS (anti-inflammitories) anymore & went back to work the next week (because I teach). I've been to the emergency room several times & now basically my job is now saying that I've used all my sick days & I better watch it because my attendance isn't looking good. I'm still feeling sick and somehow I have to ride it out for the next 4 months for my students.

My gynocologyst was unhelpful. She seemed unconcerned that I have ovarian cysts, even though I have been in pain for the past several months & been to ER several times for the pain. My menstral cramps (& associated migraine) are severe & I can't take anything for them, except narcotics, but then I'm out for the day. When I told her that I don't sleep for 3 days straight (severe insomnia) usually) each month, she said "drink red wine or take sudafed". My neurological symptoms & respiratory symptoms have been worse since the cysts & felt like I was getting no answers, so I am going to a different doctor, but wonder what to say to the next person.

Currently, I am taking Topamax for my Migraines and Seizures (mostly get visual/ partial seizures, haven't had a full one since I was about 20). I can't take Immitrex either (allergic to sulfur & not recommended to my age group). The bad thing is my N symptoms seem to be getting worse by the day, especially my EDS & hallucinations...It's not that they bother me, it's just with work & driving, it's a problem.

I used to "collapse" totally - but at the time it was unclear if it was a seizure (anxiety related) or possible cataplexy. More recently (within the past 15 yrs), I've had weakness, but not full weakness (more like dysarthria, or slumping in my chair. I usually can sense it happening so I'm not standing when it happens).

If anybody has had a combination these issues & has gone through evaluation, let me know. I am thinking of going through a Sleep Evaluation to get tested for Narcolepsy, as I can't handle things on my own anymore. I feel very overwhelmed. I'm concerned about loosing my job & my driver's license, but I'm at my wit's end.

Wayong

[lomv]

wayong,
can you take any tryptan drug (eg zomig, relpax, etc) and have you tried narcotic pain relief or other non-narcotics for migraine-specific pain and symptoms (as discussed earlier in thread)?


It sounds like you would benefit from a sleep dr consultation with a specialty in neurology, perhaps. i think a alot of sleep specialist who are board-certified are a aware enough of neurological issues though. You mention N symptoms but say you have not done a sleep study, so I am guessing you are not officilally diagnosed or under treatment. This may help a lot, but the procedure can be quite long (a month or 2 of waiting for consultation, the sleep study, the reading of the tests and another consultationa nd then the lead time for treatment to take effect). Good luck. I really recommend finding a board-certified sleep specialist and a good neurologist (also board-certified)for your migraines.
If youa re near Boston, Harvard has some excellent clinicians in both sleep medicine and general neurology.

[lomv]

One more thing, regarding your drivers license- they generally are not required to revoke or temporarily suspend driving priviledges due to N, even if you ahve fallen asleep at the wheel. However, if you ahve a had a seizure, you will not be able to drive for a minimum number of months and will need to work with your neurologist. In nY, I believe it was 3 or 6 months after a seizure.

good luck. I hope your boss is understanding. Perhaps it is a good idea to sit down and discuss some of your helath problems or see if there is a way you can take a temporary leave (perhaps without pay) where they will honor your position as long as you return within a certain time frame. Sounds like you ahve a lot to sort out.

[Countingsheep]

wayong,

Unfortunately, stress can be a huge migraine trigger. And, it sounds like everything is snowballing for you - - the more migraines you get, the more stressed... the more stressed, the more migraines. You've GOT to break the cycle! Perhaps a new neuro? From the severity of your symptoms, it sounds like you need prophylactic (sp?) preventitive medications for the migraines. I can't imagine trying to teach through a bad one. I'm sure you have no choice but miss days at work.

They told me the same thing about the anti-inflammatories. Don't take too much, or you can get rebound headaches. They never helped me anyway.

As for your job, I'm not sure if I agree with lomv. No matter how understanding your boss is, bottom line is that corporate america STINKS. All they want from you is your work output. If you teach in a public school, you have disability insurance, right? If they are threatening your position, get them to put your decline in attendance/performance in writing. Document everything! This could be the only way to prove your inability to work later if you ever need to get insurance or (god-forbid) social security.

If you really want to try to stick it out for the kids, take it ONE DAY AT A TIME. Be good to yourself. Perhaps a bit of pampering could relieve some of the stress? While it won't make your symptoms go away, a good massage or manicure can do wonders for your stress levels! Or, at least, they do for mine!

I also have ovarian cysts. They suck. But, I'm surprised your gyno didn't have anything else to say about them?! As you said, perhaps ANOTHER new doc? And, NEVER do the red wine!!!! Red wine is a HUGE trigger for migraines!!!! Avoid it like the plague. And SUDAFED? Sudafed is a stimulant! How is that supposed to help you sleep? Did she mean Benadryl?

As lomv said, if you haven't had a sleep study, you definitely should. And, with your issues, find a neuro sleep specialist.

[wayong]

Thanks for your replies. I'm also on another N list group but I've been having difficulty posting on that one. It helps to have input.

Well since I have been on Topamax, I've had 2 major migraines. So far, my "daily morning migraines" have been much better & I have been able to fall asleep after I wake up at night (but still have crappy sleep). However, my major migraines- while probably the pain severity is less, I'm still pretty bad off. One was triggered from driving in the snow, ice & slush for 2 hrs & ended up with nerve damage in my arm from stress (they didn't cancel school & then when I woke up from a nap I sent a nasty email to the neighboring public school, which got back to my school & I was very lucky that I didn't get fired for this, just a slap on the wrist). The other one was menstrual (along with severe cramps, which were made worse by my cysts) during break. I took Vicadone & Pecocet on top of my Nexium & Topamax, but still pretty bad off...I had to go back to work, so no narcotics. Still ringing in the ear, neck pain, head pain, naseau, no appetite, yup the whole Vah Gogh... on top of my cyst pain & other stuff.

Ha ha...alcohol is now out of the question with medication I take now.

I haven't had a "full seizure" - I don't think for quite a few years. My concern is at the rate I'm going, I'm risking a seizure or a stroke...

Well, I am on preventative migraine meds, it takes time... I probably do need to get further tested. I never got tested for N because I didn't drive for the most part until February 2001. I mention going for sleep study when I was younger to my therapist (about 11, 12 yrs ago), but my therapist & my parents discouraged me from getting tested even though it was my roommate that encouraged me to look into seeing if I had N (she had a friend who had N & apparently, I was a lot like her).

The problem was I was never given a chance to recover from my ulcer in January, plus, my ongoing ovary/hormone issue has thrown my whole system out of whack. I have no coping mechanism now & come home exhasted from work. It's not so much the actual work with the students- it's the stupid bureacracy, the driving, the extra duties I have to do, the times when I have to be outside for recess, etc. that really wear me down. I don't feel the place I work has a whole lot of "compassion or consideration" so I don't really talk to my coworkers about my problems (not that it's a bad place, but it's not a safe, warm fuzzy place- I've worked in residential programs & inpatient psych that feel more 'cozy' or 'safe').

Wayong

[lomv]

Hi Wayong, How are things going for you? It is too bad that your daily environment is not more supportive. Have you considered looking for work in other places, like those you mention, where the environment was better for you. It may free up some energy so you can also take more time to try to stabilize your health. It also sounds like your ob/gyn is not as thorough as you might need, so maybe you can seek a second opinion. In some centers, such as women's health centers in major hospitals, there are very thorough and up-to-date ob/gyn who regularly serve as primary care physicians. I would only recommmend this if the clinician is upt o date in a lot of area of medicince, as are mosst ob/gyns who work as PCPs out of academic hospitals. You can look up PCPs in academic hospitals under a variety of clinics and many group under the following: internal medicinice/primary care; womens health/primary care; and family practice. Family practice can serve you well if you have children who exhibit or are predisposed to any of your conditions, since one doctor will treat your whole family and beome familiar with your symptoms and what to look out for.

for some people it is difficult to make your own health a priority, as long as they are getting by. There is always so much to do, with work and families and drs appointements, and treatments, etc. It sounds like you are dealing with too many things, with your commute, work, past health issues and current ones. I hope you will be able to get some good treatment soon or find a way to decrease your load at work. Do you have summers off? Some specialists have a long wait time (2-5 months) to see first time patients,so you might want to plan ahead if you have vacation time coming up. It is terrible when one illness or its symtoms keeps rolling into another one. It can become very difficult to tease apart symptoms and get correct diagnoses/treatment later on.

What part of MA are you in? There are a lot of good drs in Boston, so I might be able to recommend someone if you are near there. We considered moving there and I ahve a lot of friends who moved or have lived out there.

[wayong]

Well, I finally decided to consider looking for a job for next year...but not for the immediate future. I find job hunting very stressful even when I get job offers & I have successful interviews...the process is too emotional for me (even though on the surface people say that I handle it very well & interview very well). I also care about my students & want to be professional (as it is really hard to find special education teacher who want to work in middle schools who don't have math phobias)...which means sticking through the next 4 months & forcing myself to drive to work unless I'm in the hospital or I have tests being done to me. It's just physically hard when I'm barely eating, sleeping & functioning (my sunglasses created an uproar in some of the classes today).

When I told her about my situation, my supervisor recommended the Mt. Auburn's Women's Clinic, which I already have an appointment with (she said that she's known other people who've gone through similiar situations with their gynocologists- it's often with doctors who have less experience with "older" patients.

I have summers off... I thought I would be working on professional development and/or hopefully doing something creative with younger children, but the way things are going I don't know what I'll be doing. I know the wait is long...I know doctor have heavy caseloads...they probably don't want patients to bother them & I don't want to be a bother. My doctors probably think I'm a big kvetch...this is coming from someone who didn't have health insurance for almost 5 years...who had a couple of bad experiences (and family has sued due to very bad experiences), been to specialtists as a young child (I had a variety of medical/neurological/orthopedic issues) & family in general tends to be reluctant towards doctors... I had distant family member that had/has OCD & Munchousan Syndrome, so I tend to be extra cautious, but my doctors don't know that, I probably just sound like a complainer.

Yes, it's just that everything is building up- if it was one thing: respiratory problems, migraines, cysts, IBS, PMS, N...I could deal with it, with my typical ADD way (don't deal with it and read 2-5 fantasy books, watch Heroes on TV, look up the Pan's Labyrinth Website obsessively, work on art, look at dollfie/ Korean/Japanese fantasy doll websites, etc. and maybe it will just disappear whatever it was). However, that's not working any more. I hope I can wait out the next 4 months, but don't know if I will physically be able to...I'll have to force myself.

Think of it this way: last night I manage maybe 2hrs of sleep? Mostly vivid randam dreams. Loud ringing in my left ear. Really stiff neck. Photophobia. dicoordination (often, though). frequently confused & forgetful. Yet I still I had to drive 35 min each way, work 7:30-4:30, with a 20 minute break.