ER Trip Last Friday

3/13/08 3:15pm

Dear Chelsea,

Your ER trip sounds terrible. My 12 yr old daughter has migraine disease and we are soooo tired of going to the ER. Her family doc said we can go get a shot of anti nausea medicine at their office when necessary and save a trip to the ER. We did that this morning, it is much quicker than the ER but not as effective. The barometric pressure was way down, and that is one of my daughter's triggers. The only thing I know about migraines for sure is that they are poorly understood. Good luck and I hope you find a solution that gives you some control over your migraines. I am trying to stay positive and still searching for answers. best regards, Chris

stampinamyb

3/13/08 4:28pm

Chelsea,

I am so sorry you are going through this. It sounds so much like what I am going through and I'm sorry I have no answers for you. I just wish there were an answer for us. Hang in there and I hope things get better for you.

Amy

happyarch

3/15/08 3:57pm

Hi Chelsea,

I'm sorry to hear you're having such a tough time with your migraines. Unfortunately, your progression sounds fairly "normal" from my experiences - though I'm not a doctor, just lots of experience.

I have been experiencing daily headaches for the past 10 years and occassionally for the 5 years prior to that. They used to call the change from occassional headaches to daily headaches "transformed migraines". Now they call them "Chronic Daily Resistant Migraines". I interpret this to mean, you have a headache every day and we don't know what to do.

My migraines occur on one side of my forehead, wrapping around to the side of my head. The blood vessels that expand are next to my optical nerve and often put pressure on it causing me to partially or completely lose vision in that eye. I also experience numbness, confusion, and lack of energy. There has been many a time I really thought I was having a stroke. My doctor always smiles and says, "No, it's just a migraine."

You mentioned that you went to the ER. I tend to stay away from them as far as possible. In our area we have a shortage of nurses, doctors, and patient beds. If you show up with a "migraine" (interpreted as headache) by the nurse you can expect to wait up to 8 to 10 hours. The doctors and nurses also tend to be suspicious thinking that you are just seeking drugs - this can be very frustrating.

In partnership with my doctors we have come up with a plan so that I can treat the migraines myself without having to go to the hospital. Here's my plan (just for your information - discuss your plan with your doctor(s):

1. Take a triptan medication - Zomig (sublingual), Imitrex (nose spray)*

*I don't digest things well when I have a migraine

2. Take 1 or 2 T3s, 1 Toradol (or another NSAID), 1 or 2 Gravol (or Dramamine).

3.

happyarch

3/15/08 4:01pm

Hi Chelsea,

I'm sorry to hear you're having such a tough time with your migraines. Unfortunately, your progression sounds fairly "normal" from my experiences - though I'm not a doctor, just lots of experience.

I have been experiencing daily headaches for the past 10 years and occassionally for the 5 years prior to that. They used to call the change from occassional headaches to daily headaches "transformed migraines". Now they call them "Chronic Daily Resistant Migraines". I interpret this to mean, you have a headache every day and we don't know what to do.

My migraines occur on one side of my forehead, wrapping around to the side of my head. The blood vessels that expand are next to my optical nerve and often put pressure on it causing me to partially or completely lose vision in that eye. I also experience numbness, confusion, and lack of energy. There has been many a time I really thought I was having a stroke. My doctor always smiles and says, "No, it's just a migraine."

You mentioned that you went to the ER. I tend to stay away from them as far as possible. In our area we have a shortage of nurses, doctors, and patient beds. If you show up with a "migraine" (interpreted as headache) by the nurse you can expect to wait up to 8 to 10 hours. The doctors and nurses also tend to be suspicious thinking that you are just seeking drugs - this can be very frustrating.

In partnership with my doctors we have come up with a plan so that I can treat the migraines myself without having to go to the hospital. Here's my plan (just for your information - discuss your plan with your doctor(s):

1. Take a triptan medication - Zomig (sublingual), Imitrex (nose spray)*

*I don't digest things well when I have a migraine

2. Take 1 or 2 T3s, 1 Toradol (or another NSAID), 1 or 2 Gravol (or Dramamine), and 1 Ativan (helps me calm down).

3. Lie down, cool dark room, with ice pack on eyes.

4. Repeat step 2 every 4 to 6 hours as necessary.

If these steps don't work then I might try Aleve or Robaxacet to help with the pain. I hope this helps a bit and possibly gives you some ideas.

I'm thinking of you as I suffer through today. Big Smile

Nicola

pianoann

3/18/08 6:20pm

Hi, my name is Lori Ann. You can find me under "Music Therapist with Migraine" in Share Post.

Anyway, I read your comments and totally understood every word that you wrote. I remember my first ER visit was when I was in highschool. I was with my mom and I then found out what the word "migraine" really meant.

All I can say is that Doctors and nurses tend to treat us chronic migraine sufferers as narcotic pain medication seekers. Drug abusers. That's why they treated you and will treat you like they do. I get the same thing. I am not a drug addict. I am on maintenance medication that helps to decrease the pain of the migraines but doesn't decrease the frequency. (Topamax) So let the doctors and nurses get a migraine every day for years and see if they need some relief once in a while.

I'm genuinely sorry that we share the same experience. I'm trying another maintenance medication ontop of the Topamax called Lamictal. I'm only on the 6th day of trying it, so we'll see if it works.

Find it in your spirit to not give up. You are not alone...

pianoann

Anonymous

3/25/08 9:15am

My name is Natalie and I am new on here, but I am in the exact same boat as you...(well at times feels like a sinking ship). I am 24 and have the same Er visits with the vomiting and collapsing. I actually am just beginning topamax this week, and on day 2 experiencing tinling in my left hand, which scares me a little. I take relpax or an immitrex shot along with something on the side for pain and vomiting...not pills anymore I am down to suppositories since the vomiting is so bad. I am glad to find someone in my age range who can relate.

If you ever want to chat or need some moral support I am definately here. It is just to hard to suffer with these things. I am luckily in a position that I am married and not having to work...seeing as how I am down with each headache. good luck and hope to hear from you.

Natalie Stainkamp

Chelsea

3/31/08 8:31am

thanks for the comment!

this is my 2nd go on TOPAMAX, the side effects the first time were too intense for me....but this time around I know what to expect, and I really don't have much of a choice--I need a preventative that is going to work. Don't worry the tingling is annoying for a little while but it will start to go away the longer your on topamax.....

Lately my headaches have been worse then they've been in years, and I just can't seem to get them under control. I'm having difficulty finding a good neurologist, one who will actually listen to me and work with me----and the 2 migraine specialists I found, there are quite lengthy waiting lists to see either of them (not to mention, quite expensive). I do have insurance, but its PPO and there are not a lot of provider's around my area. So I would have to pay everything up front and get reimbursed--but with missing so much work because of my headaches that is kind of difficult--know what i mean??

I do work full time though.....My boss is very understanding, and my stubborness to not let my migraines/headaches take over my life completely is what keeps me going to work everyday !!!

My boyfriend of 2 and a half years is my best friend and hes seen me through my worst times. He helps quite a bit, but were both to the end of our rope.

know what I mean?

What type of headaches do you have??How old are you??

send me a msg if you'd like! I would love to talk more!

chelsea

Natalie

3/31/08 4:02pm

Well,

I have had a common migraine on primarily the left hand side every time. I used to not have them with the vomiting, only nauseau, however its seems they are getting worse. I have begun the second week on topamax (50mg) with only tingling in my fingertips early last week. I havent' noticed any changes with food or beverages...yet!

I get around 2 headaches a week if the weather is being nice, if there is a chance for rain I usually have a migraine move right in with it. Those are the ones usually affecting my vision in the left eye also.

Oh yes, I am 24. Sorry, I get so carried away rambling to someone who understands.

I just went in for my first MRI last Friday and I go back to the neur. May 9th. How soon on topamax did you notice your headaches getting better. Last week, being my first week on it, seemed like I had a record high number of headaches. I know it is not an overnight thing by all means, but WOW!!

Also, I was on Yaz birthcontrol which they told mme had to be changed considering it was lower dose b.c. pill. So instead of going on a high dose which creates more migraine problems for me i have opted for my husband (of 1 1/2 years) to use a barriar method...I sure hope topamax is my "miracle" drug!! LOL Good Luck this week and would love to hear from you soon!!

Natalie

Chelsea

3/31/08 5:22pm

My daily head pain is localized to the low RT backside of my head, radiating into my RT temple. My migraines usually are RT sided, but they can switch to my left (those are usually the nasty ones Pinch . Daily nausea sometimes with vomiting, daily visual disturbances (I don't want to call them an aura, because I do have troubles with flashing lights, blurry vision, wavy lines--daily), and an assortment of other fun side effects of my migraines. Like I said before, my headaches have changed drastically in the past 7months, I was diagnosed with Idiopathic Intracranial Hypertension back in 2003---and I think that it might be playing a part in my present headache problems.

My topamax was stopped at 50mg a day, and yes I have noticed a difference in my migraines---I used to have daily migraines, or just every other day--- this month I've only had 3 really bad ones so far (that is great for me :-) ). It took about a month for the topamax to make a difference. Although, the tingling can get a little bothersome---and the nausea can be horrible if you already have nausea from your headache......

My headaches started changing in August (I had a horrible ectopic pregancy and miscarriage in July--they had changed my birth control from YAZ to nuvaring). August, Sept, and Oct I had one horrendous migraine a month--the week after my period--so horrible that I was hospitalized for a night each month. In December I went off Birth Control all together, thinking hormones were the trigger---and low and behold, my migraines turned more frequent---then daily head pain!!

I am still off all birth control (except for barrier), and that has made a difference in my headaches. The topamax has helped with migraines, but I still have my daily head pain.

I couldn't find you on the website to send you a private msg----send me one if you would like and we could talk some more--which I hope you decide to do.--its so nice to have someone to talk to---who actually relates to me.

ps--Thank you so much.

I'm looking forward to hearing from you.

Chelsea

Alicia

4/ 2/08 12:28pm

Chelsea,

my name is Alicia. I am 22 years old and agree the only kind of headaches we should be getting at this age are hang overs! I have been suffering from migraines since I was 15 years old. I tried Topamax, Timilol, Pamelar, Inderal...ah the list goes on. I have found that none of these work. If you have tried Beta Blockers and they don't work it is very unlikely you are going to find a medicine that will. I have been desperate to find a cure for migraines. I just recently moved to Missouri where I went to a neurologist here. I get these migraines about 4x a week. I sometimes have rebound headaches and I find around spring I get them in the morning also I guess because of allergies. I take maxalt and the pain subsides after a few hours. Maxalt is the only thing that will work for me. When I first started taking it I used to get dizzy and pass out. I decided that I would rather do that then viciously vomit throughout the day as you described. Sometimes I feel as though my head will just explode and that'll be it. Do you take your treatment meds at the first sign of a the migraine? I find that if I do that I can get through the day. I am trying to get a Master's degree right now and the stress of all taht doesn't help. I miss study days sometimes because of the pain and the medicine makes me exhausted and unable to focus. You described a time when you fell from the migraine. I had a similar situation, I was driving to a final at my undergrad school. A migraine came off as fast as lightening could hit your car. I lost complete control and believe I blacked out for a few seconds. My arms and legs were dumb and I threw up compulsively over and over again. I described this to my neurologist and she said it was a chronic migraine. If you have received MRI's, blood work, ect then there probably isnt to much of a reason to worry about what happened. My doctor here is Missouri said that the original theory on migraines was that the blood vessel constrict and you get a migraine. He said that the new theory is that people with migraines actually have a structural brain problem and they don't why. Its the worst thing you can hear but that is all I needed to go on to my journey of helping myself. I got a book called "Food Cures" by Joy Bauer. She has a specific diet on what you should eat with Migraines....my whole feeling on the situation is that I have to be either depriving my body of something or I am putting to much of something in my body. Last week I started taking magnesium, fish oil, calcium and a one a day. I am going to start this migraine diet tomorrow when I go food shopping. I also hear yoga and relaxation techniques can also help. I tried to see a physical therapist but my insurance doesn't cover it. I know that neck stretches and light exercise are advised. Did you get in an accident or does your family have a history of these migraines?? Ok well I would love to talk to you more about this. Noone seems to understand when I say I cant be up all night Ill get a migraine, I cant be around loud music, I cant do this I cant do that....noone understands what it is like to deal with this so feel free to email me it's aliciaspinelli85@live.com

Good Luck and best wishes to you!

Alicia

icgrnis

4/26/08 2:03pm

I've had a similar experience to the "falling on the ground, can't move with nausea & vomiting". I've had what they call "vaso-vagal" response where I pass out with all the above symptoms. But one day, my husband had just started my Zofran piggyback through my pic line, and I felt a stabbing head pain, the rest of my body went numb and heavy and I fell over and started vomiting uncontrollably, my speech was garbled and unintellligible. Very scary! My poor husband saw this came running shut down the infusion, started looking at the bag and inspected the line, nothing. Meanwhile, I'm not getting any better, I was literally a prisoner in my own body. And to see the anguish it was causing my husband made it all the worse! He called the Dr. spoke to her and called the ambulance, oh joy to the er! I was left on a gurney in the hallway, symptoms starting to subside, gone by the time the "doubting" Dr. came to assess me. I was accused of being a "drama queen", that went over real well with my husband. Just a few months ago I saw an article here on "hemiplegic migraine", BINGO! Just identifying these symptoms was a tremendous boost and I could tell my husband finally, it was nothing he did. He was soooo relieved, I didn't realize just how guilty he felt, thinking he had caused this! And the er staff fed this, since he isn't in the medical field, but he has learned about PICC lines, infusion pumps, Rx and how to give injections. Just being able to relieve him of any wrong-doing was a god-send.

Heidi

11/ 8/08 8:22am

Chelsa

I am so sorry for you. We are fellow travelers. I have suffered from these monsters for 35 years and fel for you. I end up in ER for them 2 to 3 times a year and have tried all that you have..preventative meds, exercise, stretching. accupunture and the list goes on and on. I am always treted like a drug seeker for ER Docs as well as my neuro and family Dr.

When I passed out I was sure I had had a seizure. I swolled a piece of my pride and went to se my primary Dr. He diagnosed it as Vago-Vagel syndrome. He said I fainted and didnt have a seizure. He said Im sure that if someone were there with you and say it happen, they woud have sworn it was a seizure also.

Many times during a (Im affraid to say the word) my migraines when Im vomiting so crazy I have felt like I am going to to pass out but had never before. I would always make sure I was on my knees when vomiting just so i didint have so far to fall.

My prayers are with you sweetie.

docs thought after my hystorectomie(s?) that maybe they would dissapear or get better but they have not.

Peace Hschaefer

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