Severe migraines

Noona, I have FMS/CFS and IBS along with the migraines.
We have a FB page discussing this connection and others.
If you use FB and would like to join us please PM me.
We have 2 doctors on there and of course Teri Roberts...

Take are now.
Pen

Becky,

Your neuro said pain meds would only make an M worse? Is he on crack? How are you supposed to have any quality of life if you have no pain meds? Sorry that struck me as strange. My neuro is a similar duck and they don't like to use certain meds but there are some out there that could possibly be used to just dull it. I guess if it was me, I'd be looking for a second opinion.

Hope you are doing better today.

Becky

HeelerLady wrote:Becky,

Your neuro said pain meds would only make an M worse? Is he on crack? How are you supposed to have any quality of life if you have no pain meds? Sorry that struck me as strange. My neuro is a similar duck and they don't like to use certain meds but there are some out there that could possibly be used to just dull it. I guess if it was me, I'd be looking for a second opinion.

Hope you are doing better today.

Becky

with the migraines I have and pain meds being used in the past, if I take any type of pain med whether it be ibuprofen, Tylenol or something stronger it mayessen severity but will then cause me horrible rebound. My primary care doc confirmed.

I also have to be careful with any pain pills cause I have some liver issues along with stomach issues and pain pills cause both to be worse. The liver problem is believed to be related to the fact I am insulin resistant and my GI doc said there is correlation between the two.

My mom tells me that if it weren't for one problem I may be able to fix another.

I turned in my leave of absence papers at work today for the last 3 weeks I have been off due to having the flu and pneumonia. I will be returning to work tomorrow and I am dreading it. And my little visit to work caused more stress. I was told that although my illness qualifies under FMLA, since I don't qualify for it and only leave of absence the company doesn't necessarily have to approve it if they feel that I could have worked even though the doctor has said I couldn't. It appears that they are already leaning towards denying which will mean I will lose my job.

After some research I found out that if I am let go for medical reasons, I can apply for unemployment and will be approved as long as I have a letter from my employer stating they will not allow me to come back to work. That makes things a little less stressful but then I worry about insurance as cobra will be $800 a month for what I have.

I went back to the pharmacy today to pick up the new imitrex injection. Thank goodness for insurance cause it retails at over $1600 for 8 little injection pens. Although I had to pay $110 I feel is quite a deal compared to the retail. Now let's all keep our fingers crossed that I can get rid of this daily migraine.

And for those of you who have gotten trigger point injections (mine were with steroids and lidocaine I think), how long after injection did you have relief if you got them while having migraine? I had mine over 24 hours ago and am pretty sure he said should have been relief already. I am still well over a "10" on pain scale. Just wondering. Hope everyone else is doing well.

I'm really happy with my doctor. He told me yesterday that he also has migraines and that is one reason he became headache specialist. Oh and I'm glad I found this site. Makes me feel somewhat better that there are others who understand and know that "take 2 aspirin and get over it" won't work!

Yeah Becky, I'm right with ya on the appreciation of finding this site. I was up all night last night just reading posts and replying to a couple here and there because it blows me away. I was fighting a migraine all day for staying up so long, but it's been one of the few things I can say that was worth it. Been 26 years for me dealing with migraines and I never met anyone that really understood it - even other migraine sufferers were surprisingly unable to relate to my particular symptoms and problems, so I don't even know if these people had real migraines. Maybe they just had very mild ones.

Anyhow, everyone here is incredible so far and I'm glad we're coming together here to work through this.

I also understand him staying away from certain pain meds. One of my biggest problems in the past year has been rebound migraines, and they are unbelievable because you get to the point where the only thing that works is the medicine that will make them progressively worse 'the day after' and eventually you have to face a few days of the worst migraines you've ever had to stop the rebounds. I get that a lot with caffeine too so I've tried my best to take no more then a cup of tea's worth per day. Ridiculous though that caffeine has often helped prevent and get rid of my attacks, but my body rebounds with it very quick. That's the problem with so many OTC pain meds is the caffeine, and acetaminophen. I don't know a lot about acetaminophen but it seems to lose it's effect very quick, even though it's dangerous to the liver in high doses. I have a friend that takes so much excedrin beyond the recommended that I told him, I'm concerned his liver will give out before he's 40 the way he's going.

Many of the other OTCs make me really sick if I'm getting a migraine too. I can take them for back pain or other problems, but things like ibuprofen don't mix well with my migraines. I can take prescription vicodin too for serious attacks, but I have to wait until the onset of the throbbing and dizziness or it wil make me sick also. The chemistry during a migraine seems really screwed up for me to have such drastically different reactions to meds based on the stage I'm in. So I think that's an important thing to monitor too, is when your 'ideal' time to take certain medicines is.

Tngirl,

So sorry you are having such a rough time.

Just a note...the Imitrex injections (with needles but they are small) are now generic, and I only have to pay a $10 co-pay for 8 injections.

Good luck.....Ann

Becky,

Oh my...well you are unusual in the fact that you can't have pain meds. Most of us don't have a problem with them. Pen has a thread going on MOH or rebounds and no one else that's posted really has a problem with them. That just sucks!

As for your job - don't worry about it. If they would terminate you for medical reasons you can definitely get unemployment. I know this because my brother used to drive semi over the road. He had a whole slew of health problems. Got some resolved but was having trouble staying awake. He went to the doctor and they were pretty sure he has sleep apnea. So the health office at his employer wouldn't sign off on him coming back to work and was requiring him to be cleared by a doctor. He had an appointment to be evaluated and his boss was requiring him to come back. He was caught in a catch-22. He wasn't cleared to go back to work but they were requiring him to and he was terminated. He actually is getting full unemployment benefits because he was terminated this way.

One other thing - if you would get terminated and on unemployment, my brother found out that if he went back to school (he's got a few unfinished programs) and was there full time he wouldn't be required to look for work. Something to think about.

Hold on the FMLA - if you qualify for it you qualify for it. Your employer has no say in it - it's a FEDERAL law. If you request it, and have a doctor back it up - you get it. If they deny it, they've broken the law and you can sue them for it. My mom works in the law field and had filed FMLA for my brother during his health issues and they had to grant it - they fought her on it but gave in eventually.

Hang in there and glad you found us. I know I was at the end of my rope when I found this site and it has been a life saver. Hope you are having a decent day where you can function.

Becky

I am sorry you are going through such a difficult/stressful time.

I had the bilateral occipital nerve blocks with lidocaine and the next day my migraine went from unmanageable to manageable. I wish you had the same good results.

Hang in there.

Heya, glad you found this site!

What vitamin/ supplements have you tried?

Ask your doctor about the butterbur combo (butterbur 75mg BID, B2, Magnesium and coenzyme Q10) If you are ok'd to take the combo I strongly recommend you try it.

I am a botox girl, and I also had my first nerve blocks (bilateral at C2, C3 and C4) about three weeks ago.

Your amount of botox sounds about right for 200 units, which my doctor says is needed to "properly" treat migraine. Most docs, however, are still using just 100 units.

Botox works for some only. For me it has been a life saver, though I still suffer a lot and sometimes the injections don't work.

I have had it covered in the past and also had to pay for it out of pocket. I still choose to get it because when it does work, I get about 75% of my life back. It's so much money though!

Botox has it's best efficacy between week three and week eight. My head follows this schedule almost to the day. That means, week 1-3 I still have killer migraines, then usually a break week 3-8 then week 8-12 they work their way back in to killer again.

If I win my appeal for botox coverage, we will be doing the shots at 200 units, every 8-10 weeks.

Feel free to PM me if you want me to look up the amounts of the vitamins in the combo.

Oh...and pretty please....can you please hit enter every few lines to make a break in the text because us migrainers have difficulty reading large chunks of text.

Cheers

Hi, I am new to this, but I have struggled with migraines since I was 13. I was at my neuro the other day and we are going to give Botox a go. I had a bad spell in the fall ( stress) and the headaches were starting everyday, and to this day they continue.

I am now having caffine withdrawl headaches because of all the different meds I take contain caffine as well as the caffine in my boday. Now I am to go off all meds for 3 wks to clear myself out ( how the heck can a person manage that!, and totally get rid of the caffine in my life.

My everyday headaches start about 2 hours after I get up and of course I take something because we all know what happens if you let them go. Well apparently I am feeding the caffine craving that I started in the fall. I made it all day yesterday with a headache and no pills, but when I woke up today and it had jumped sides and now light and sound sensitive and feeling like being stabbed in the temple I broke down and had to take something.

I don't know what supplements any of you take, but there are some that I am on and 1 that I know truly helps but takes 2-3 months to kick in. My doc who is very highly respected has put me on the following, mag, omega, B2 and Butterbur Extract.

I have taken the Butterbur before, it takes 2-3 months to get going, but it does help!!! I quit because it was hard to find. Take 1 cap. threetimes a day. I try anything. I also suffer from horrible hormonal headaches and he says the mag. will help load up the week before (like 1000mg a day, again needs a few cycles before a difference may be seen) and I am going to try an estrogen patch. As far as Botox here, it will cost me $450 for 26 injections which will last 3-4 months. The thing is I am not patient and want something to help now and not in 2 - 3 months, but I guess it is time to face facts.

Good luck to you all.

Teacher here again, sorry I missed the above comment about butterbur, there are 2 of us now who have mentioned it, give it a try.

pilot57 wrote:Tngirl,

So sorry you are having such a rough time.

Just a note...the Imitrex injections (with needles but they are small) are now generic, and I only have to pay a $10 co-pay for 8 injections.

Good luck.....Ann

these are injections with needles. It is a pen without a needle that uses air to push medicine thru skin. Just came out a few months ago. It's not actually imitrex but made by company that makes it. This med is called sumavel dosepro. Imitrex pill, nasal spray and injection doesn't do a thing for me.

Thanks for the suggestions of the vitamins/supplements. Some I can take and have tried and others I can't due to reaction with other meds and other medical issues that doc is not sure how will react.

I am a complicated case as I am not allergic to any meds but have several I can't take.

Went back to work yesterday and to say the least, it was the longest 9 hours ever. Staring at my computer all day reading and trying to concentrate all the while my head is pounding and I'm waiting for it to explode at any moment.

Getting ready for another long day today and then tomorrow is my four hour day then i will have 2 days off.

I was able to sleep for about 6 hours last night which hasn't happened in over a month. Unfortunaltely the M is still outta control. Each day the pain gets worse and worse. Called neuro office and said injections should have worked already.

I have an MRI with and without contrast sheduled on Wednesday morning. How long do those usually take? It's scheduled in the morning but I'm supposed to go to work that day too so just wondering how long I should expect to be at hospital.

Well hope everyone is doing well.

Tngirl83 wrote:
I have an MRI with and without contrast sheduled on Wednesday morning. How long do those usually take? It's scheduled in the morning but I'm supposed to go to work that day too so just wondering how long I should expect to be at hospital.

Like 20 or 30 minutes. Not long at all. Hope they find something that is able to help you. Just really feel for you - I know how it is when you have to be at work and feel like your head is going to explode or implode. Not fun.

Hang in there - we're rooting for you.

Here's an update:

went to work on Saturday. Was only able to work about 4 hours before the M pain along with the blurry vision, numbness/tingling, and dizziness got so out of control that I couldn't take work anymore.

Called my brother to come pick me up as there was no way I was driving home. I was still in middle of M that's been going on for 7 weeks now. As I was waiting for my brother to come get me, I started getting aura. I knew getting this in middle of M meant only thing: it is about to get even worse.

And oh boy did it ever. I left work when it was time for my lunch and my manager had come over to my desk to see how I was. I was telling her I was leaving and explaining everything to her. Previously I had said she was understanding. Maybe not so much.

After I told her what was going on and that my brother was coming to get me, she looked me in the face and said "well you don't look sick at all." she then just got up and walked off. It doesn't matter how many times someone says it, that always gets to me.

You don't look at a cancer patient and tell them they don't look sick just cause you can't see the tumor. Needless to say I was and still am a little pissed off. Next time I'm at work I'll take her with me to the bathroom all 15 times I throw up during the four hours I'm there so she can she I'm really sick. Ugh. Sorry had to rant a little.

Anyways I came home and went to bed hoping to feel well enough on Sunday to make it to work since it was only a four hour shift. That didn't work out either. I spent the entire day Sunday in bed with trashcan nearby.

The pain is increasing each day. The trigger point injections lessened the pain a little but unfortunately did not stop it as we had hoped. The pain is worse now than it was when I saw neuro last week.

If I miss just 10 minutes of work at the least I'm gone. Even though I'm beginning to think that may be for the best right now so that I can get better, it still stresses me due to insurance issue. I will be able to get unemployment no problem. I guess I'll cross that bridge when I get there.

Well tomorrow I go for a test on my stomach. Doc thinks I may have ulcers but wants to rule out anything else. Maybe the meds will help with the pain... I can only hope! On Wednesday I have my MRI of my head and then I have work again.

Hope everyone is doing well

Sorry you are still struggling. Looks like a number of us had a bad weekend.

Had my stomach test yesterday. Doc found a polyp he removed and apparently my stomach isn't emptying food.

I have to have another test for that but he said could be because of damage to a muscle in stomach.

With all the vomitting I do with migraines that is quite possible. I will add this problem to the long list of other problems.

I had my MRI today. Of course the noise made the M worse. They did give me ear plugs but when your head is in the middle of it they're not much help.

Went to work and luckily they let us leave 2 1/2 hours early since it was slow today. I spent more time in the bathroom sick than I did taking phone calls.

I have been taking zofran for the nausea/vomitting but for the past couple days it doesn't seem to be working anymore.

I had the same problem with phenergan both pills and gel after I took it for a while. Anyone else had this problem?

I am going to call neuro tomorrow to see if he has any ideas for different meds for the nausea. Maybe I can suffer through pain like I always do if I can just stop throwing up.

I am supposed to go to biofeedback appointment next Wednesday but I will have to reschedule cause of work. How many of you have went that route? Has it worked for you?

Another question: do any of you sleep for a few hours maybe odd times of day and then wake up and can't sleep for long periods of time again?

Here's what I mean. Not counting yesterday cause I had anesthesia from my test but other days like today.

I came home from work took my pills I normally take around 8 pm. I sat down in recliner which I can never sleep in and fell asleep and didn't wake up until 1 am.

I am now awake and kind of have a hangover type feeling but can't go back to sleep.

Other days when I was out on leave from work, I would get up around 8 or 9 am and take a nap around 2 or 3 for only about an hour (doc orders cause I had pneumonia!) and I wouldn't be able to sleep until 3 or 4 in morning.

I don't know if it is part of migraine thing or if it related to other illnesses I have. I just find it kind of annoying.

I have always been a night person and maybe I got my internal clock messed up somehow. Who knows. Just wondered if anyone else had this problem.

Now I'm beginning to rant cause the bad part of being awake in the middle of the night is everyone else is asleep and I have no one to talk to and my M is so bad I can't really watch or listen to tv. Oh well guess I'll try to sleep again.

Hope everyone is having a better week than I am.

Glad your tests went well. Hopefully something can be done.

As for the nausea meds - yup they don't always work. I'm on promethazine and it only works if I take it when I first start to feel nauseous or if it's mild. Full on feeling like I'm going to toss my cookies - no effect.

I'm scheduled to try a few things with the pain psychologist starting in July and I'm pretty sure biofeedback is one of them. Not terribly optimistic. He gave me a cd of relaxation stuff and after listening to the first track I think he's full of crap. Or perhaps if I wasn't in pain all the time it might work but battling this crap 24/7 - think he's out of his mind. Anyway, end of rant there and will try the other stuff he has in mind because I'm getting desperate.

Sleeping issues. Lot of us seem to have those. I'm normally a morning person and have a hard time staying up past 10pm. However, if I have a nap in the afternoon and either sleep too long or at the wrong time, I'll be up until the wee hours. I'll also have random bouts of insomnia. I have a feeling that all of this is due to the M - I think it messes with our sleep circuit. Nothing worse than wanting to be asleep and not being able to sleep.

Hang in there.

Becky

So sorry about your migraines and related conditions.

I have trouble, too, with nausea and vomiting, and my neuro finally gave me phenergan in suppository form. That doesn't always work, but does help some.

Sleep...tough for me, too. I take temazepam or I don't sleep much at all (at the right time!). This has helped me.

Biofeedback...I've tried it a couple of times, and although I do think it has merit, it is hard for me to think about warming my hands when I can hear my heart pounding in my head and the pain in blinding, almost literally. Maybe I should try it earlier before I get to that point.

Wishing you the best...

Ann

I tried promethazine and zofran to address the nausea associated with the migraines. I started taking zofran at a 4mg dose, and when that stopped working my neurologist increased the dose to 8mg. The new dose does not eliminate the nausea, but it does allow me to get and keep some food down. If you are on a low dose of zofran, your doctor may be able to increase the dose. I hope that you find some relief soon.

Jenny

Doc gave me new med for vomitting: compro. It's a suppository. Fun, fun. I remember those from when the migraines started when I was younger and had the vomitting. So far so good with it.

New weird symtom: my face feels completely numb but yet i can feel it tingling. I get the tingling in my fingers before I get a really bad M but right now I'm in the middle of one and this symptom is annoying.

So this past Sunday the pain level went down to about a 7 hich compared to the everyday 10 was somewhat tolerable. I tried to enjoy the day as much as I could.

The M of course cal back with a vengence about 10 pm Sunday night.

Just a quick update. Hope everyones having a good week

Hi Becky,

Your new weird symptom isn't new or weird to many of us. Some people get this and others don't. I know that lovely part started about a month ago for me. Felt like someone smacks me in the eye with a baseball bat then pain radiates around, down my face and back up into my head. It also goes numb or tingles. Usually a sign that a doozy is on it's way. I rather like having a warning so I can medicate rather than sudden blinding pain.

Hang in there.

Becky