Lost and Confused!!!!

My story started back in November 2009. Woke up one morning with a migraine that was a pain level 10. I delt with it for a couple of days and then went to the local satalite ER, had a CT and a MRI which were both normal, was given some pain killers there and sent home with a prescription for a narcotic pain reliever, that did nothing. A few days later went back to the local satalite ER because the pain was unbearable. Again was given pain relievers there and then sent home again with a different prescription for a narcotic pain reliever, which again didn't help. A few days later went back to ER, but this time the main ER at the hospital. They did another CT and also a Lumbar Puncture which were both normal, but this time they admitted me for 5 days. The only thing I got out of that was a bunch of medication and a Neuroligist. I saw that doctor for about 8 months, in which all he did was change my meds. around and around. I was then told about this clinic that only deals with the different kind of headaches, had my first appoinment in July 2010 and was admitted for 18 days. I had different classes teaching me about relaxation and the different trigger foods and also Bio-feedback. I had another CT and MRI and again they turned out normal. So the doctor told me that my migraines were hereditary. I can go on and on but the story only gets frustrateing. To sum up the whole story I have had severe migraines (pain levels on the average of 8 to 10) 24/7 for the last 16 months. I have been to the ER 6 times and admitted to the hospital 3 times. I have been on several medications which have not worked or I should say they were either changed because I had a reaction to them or they started to work and my body got ammuned to them. I have dizzy spells, that just seem to increase as the days go by. I'm nauseous and just plain sick day in and day out.

I don't know what to do anymore. I had to put my business aside and file for disability because I can't concentrate long enough or hold my attention long enough to one thing done. My pain is so bad 90% of the time that all I want to do is lay down in a dark room. I'm having a really hard time coping with all of this. I feel lost and discouraged. I feel like I have let down my whole family, because I can't be there for them the way I would like to. I feel as if I'm failing my children because I can't be there for them the way I was before all this started happening. I am depressed because I don't feel like anything as gotten better or will get better. I feel like I have lost who I am and I don't know how to get her back.

Please help. I welcome any advise, any coping skills and/or anything that others have tried.

Hello Jenhan.

I'm so sorry to hear about what a difficult time you are going through. Many of us can relate and I'm glad you are reaching out. What kind of medications are you on? Are you on abortives, preventatives, antidepressives? Have you been to one doctor, or a few? Maybe with some of that information we can help you out a little better.

Also, please put spaces in your paragraphs, it makes it easier for migrainers to read.

I so know what youbare going through. Being 35 and having headaches since I was 10, migraines since my early twentys. I know pain. I just spent the last 2 1/2 years fighting for disability. I won my case finally. Not being able to work. Having to watch my husband work long days just so we can get by and then I adding more to our bills with doc visits and meds after meds. Many times not even able to clean the house and take our dogs out. What a sickening feeling not being able to do much. I forced myself to not give up. I can't change my body, I can't go get a new brain. I have to learn to work with migraine disease. We all do.

STAY STRONG....STAY PROSITIVE.....STAY HOPEFULL....STAY CALM....

I have seen 3 doctors now, 2 of them were in the same clinic. My 2nd doctor retired at the end of this past year and the new doctor I have only seen once so far. I feel that I need to give him a chance before I decide to move on.

The meds I'm on now are anti-depressants, anti-seizure, a blood pressure pill (which I have been told that I am on for my migraines and my blood pressure), a water pill, an injection for pain and a med to help with my dizzy spells.

On top of all the pain with my head my blood pressure decided to start going up and off the charts. With the high blood pressure I am also having problems with my kidneys functioning 100%.

If i could have one thing under control you'de think that would be my blood pressure, but the meds. I'm on aren't working fully to keep it down. Plus it doesn't help that because of all the different meds. I have been on I have gained 30 lbs. and haven't been able to loose it.

It is hard to stay positive when the one thing you think you could have control over, your own body, is not able to be controled.

I don't know what else to do or try. I don't know if I should go off all my meds and see what happens, I mean really, the meds aren't really giving me any relief.

Very frustrated, very confused, very lost.....

You do want to give your meds a chance. Standard rule is at least three months. Make sure you are keeping a migraine diary. I have used online ones but I found that writing it myself in a journel was better.

Write: when you get the pain
how you fell, if you are dizzy, fatigue, mental confussion
what you take, now much
did the meds help..........on a scale of 1 to 10
what the migraine stopped you from doing

This is VERY important if you ever fille for disability. Doing this one thing is what helped me when my case. Try your very best to live a clean life. No MSG, getting as much organic foods as you can.

Now this is a hard one. You have GOT TO not let this overpower you to the point you are just digging yourself in a big hole. You have to rest your mind, learn to work with your body. Getting to over stressed over this will only give you tension migraines and put yourself in a cycle of not healing. I know it sounds rough but this is a time where you have to come first. You can't be good to anyone else if you do not take care of you. Find things that rest your mind and soul. Learn things that give you a calm mind.

For me it is scrapbooking, bike riding, reading.

It tooks me years of lessions to learn that I was the only one that was going to ge me better. I started to read everything I could on migraines, I wanted to know more than my doctors did. I started to take care of me. I am not cured but I sure do have a better take on this disease I have. I have learned what works for me and what does not. Things I know will hurt me or help me.

I will tell you this the one thing that really helped me to deal with this was for me to write about it. I did have a blog for years but now I just write for my personal use and family. Getting my emotions on paper was a healing tool for me to understand what my body was doing to me.

You can and will fight this. Remember to not let this disease win over you. Do not give in to despair.

So sorry you are going through this and I really feel for you.

It sounds like you have tried so many different medications. Have you tried Maxalt or the DHE spray that you spray up your nose?

I don't want to discourage you when I say I suffered with migraines for over 40 years but I am finally getting relief, although I still get the odd migraine and a few smaller headaches. I used to feel terrible when I had to spend many days in bed and my boys had to fend for themselves so often. They both turned out to be wonderful adults that I am so proud of, so don't feel like you're being a bad mum, I'm sure your children understand. How old are they?

Don't give up, hopefully you will one day soon find a medication that really helps you.

Hi Ruth and Chrissygirl-

Thank you both for the words of encouragement. This forum is exactly what I needed. I love my family and friends dearly but it get frustating when they are trying to give me advice on something they have no idea what I'm going through. I so wish I could express into words to them what I am going through, but there isn't anything I can say to help them understand.

I know they all mean well and I know they are having a difficult time with watching me go through this and knowing there isn't anything they can do or say to help me. It's a relief and a weight off my shoulders to actually get advice from other people that are walking in my shoes and know my pain.

The hardest thing I am going through is trying to explain to my 6 and 8 year old boys why there are so many days I can't play a simple bored game with them. Actually why there are so many days I sometimes can't even be in the same room as them, because they can be loud and roudy at time. But then again they are boys, I can't fault them for that.

I do thankfully have a 17 year old girl that does understand and is a great help to me. I just wish I could do so much more for them.

I have though about taking up a hobby, but so far the things I've thought of so far just aren't the right things for me to get into right now, because of the strain on the eyes it could cause. But I am still trying. I did want to go back to school and get my college degree, but I'm afraid that has put on the back burner too because of my lack of concentration. I can't see putting all that money into something I know in my heart I will not be able to finish right now.

But I am also getting to understand from this forum that things will just take time and to give it a chance. I am just so tired of not having any relief. There are days that I sit and wonder how I'm going to get through another day of throbbing, stabbing pain, but to my amazement I keep getting up day after day and just tredge through it.

jenhan35

Jen
So sorry to hear all that you have been going through. We all know how frustrating it is. Many of us have dealt with chronic daily migraine for a number of years. Yours sounds to be a particularly bad case. Here are a few ideas.

(1) Is the dizziness and nausea from the migraines or the meds? I know it may be hard to tell, but you may have some insights based on when you have changed meds. Some (e.g. Topomax, lamotirine) can give severe nausea like you mention. Dizziness and mental confusion can also be side effects.

(2) Have you tried any supplements? Many people here have reported good results from magnesium, vitamin D, and butterbur. Probably nothing to lose in trying this route and it just might help.

(3) Do you have any underlying neck or head injury? Past car accidents or whiplash? Cervical injuries can cause problems even down the road due to nerve compression, occipital neuralgia, etc.. You would need to see specialists to get a proper diagnosis along this line.

(4) Did you ever get headaches before this started? Or did it start out of the blue? Any precipitating events you can think of?

(5) if the headaches are all the time I'm sure it's very hard to figure out triggers. Some people have done a complete elimination diet and then added back foods one at a time. Might be worth a try.

(6) if female have you considered hormones? I finally got much better after going on a natural progesterone supplement. As I had headaches all the time and not just with my period, I was skeptical that it would work, but it made a huge difference for me (down to 2-3 per month). Like you I had headaches start out of the blue when I was 46, with no previous history of headaches.

(7) Have you tried chiropractic or acupuncture? This can help if you find someone really good.

( do they think you are a candidate for Botox?

A lot to consider, but maybe one of these paths will work for you. The important thing is to keep trying till you find what works for you. There will be no relief in giving up.

Is your doctor a migraine specialist? If not I'd recommend seeking one out. Some neurologists aren't as well versed in migraine as others are and having someone who's an expert working on your situation can be extremely helpful.

Here are a couple of links to check out for recommendations:

http://www.healthcentral.com/migraine/headache-specialists.html

http://www.migraineresearchfoundation.org/resources-links.html#doctors

WOW! DID I WRITE THIS??? IS THIS ME??? No, but I wrote something similar a while back. VERY SIMILAR. I had to read it a few times to be sure, I really was like woah! Well, I can definitely understand your pain and frustration. First, the BP meds are probably a necessity. Maybe you are just not on the right one, or right dosage, BUT you cannot let your BP run rampant. That can definitely lead to a stroke. Do you have an at home monitor? You might want to get one and keep track of you readings a few times a day.

Now, this may sound crazy, but there are techniques you can use to help lower you BP. When I first was introduced to bio-feedback and the like, I thought it was a load of crap. Well, I learned that when executed properly it can certainly lower or stabilize your BP. In fact I even used it when I was in labor and my BP was never above normal.

I am curious to know exactly what your meds are. Not just the drugs but the dosages. I am also wondering about a 'clinic'. Is this a headache clinic? I have been to several places before I found the right DR. I gave them each a fair shot, but it is very discouraging knowing that this can take time.

I went down the tubes for a while. I took that looong look in the mirror to see what I could. I found a little piece of me and built on it. It is so not easy, but you are in there and this may sound dumb, but you gotta go in and liberate yourself! I had a lot of denial about myself, my life, and my situation. I also had a lot of guilt. Unnecessary guilt about what this thing was doing to my family. Well, whatever it is doing to them it is doing to you, but a lot worse. They will be ok, but there comes a point when you have to focus on you. I am sure it is hard with children, but if YOU are not thinking the right way, then no one benefits.

I highly suggest looking at this site, maybe browsing past posts. Do research other places and keep track of everything. Write it down. I kept all the papers from prescriptions in a notebook. I have several notebooks with medications, procedures, treatments, all that in there. This really helped my Lawyer with disability, and actually cut some of my legal fees because I could provide so much info they would have to get from DR's. I know it is sooo hard to become motivated to exercise, but when I lost some weight, I lost my BP meds. Many anti-depressants make it hard to lose weight as well.

I think that is all I have for now. Keep us updated though!!!

stephgood wrote: I am also wondering about a 'clinic'. Is this a headache clinic? I have been to several places before I found the right DR. I gave them each a fair shot, but it is very discouraging knowing that this can take time.

It can be really hard to find the right doctor. Very frustrating!

Hi Somebody Heal Me-

The clinic I go to is a headache clinic. They treat migraines and cluster headaches. They are:

Diamond Headache Clinic
1460 North Halsted St. Suite 501
Chicago, IL 60642
1-800-HEADACHE (432-3224)

I have been with them since July 2010. The doctor I was first put with had retired at the end of last year. I was then put with another doctor and have only seen him once so far. I think if things don't change soon I will probably start looking for another doctor myself.

Jen

You have to find someway to relax and calm the mind. I've been learning meditation the last few months and its really starting to help me cope. Start off small. Try sitting in a quiet place, close your eyes and just concentrating on your breathing - deep breathing in and out. If you do nothing else for 10 mins just concentrate on your breathing. Try some peaceful music in the background if you can handle it as well. The more you do it the easier it gets and sometimes just sitting can be calming. Are you able to do any exercise at all? even just a gentle walk?

I understand about the depression too - I've been battling with it for a while now but there is light at the end of the tunnel. You have to think about something positive in your life - your kids maybe? Try and stop the negative thoughts from consuming you - I'm beginning to understand how much more energy is actually taken up with the negative thoughts. They still get me down too but I've been learning how to control them more. Stop, cancel, delete the thought, think of something happy - picture or place you'd like to be then just continuing repeating the process. For me, I picture my little Niece - she's only 18 months old but has the biggest smile and gorgeous laugh that makes you smile just thinking of her. She has no idea what impact she's having on my life. I know this sounds basic but it can help. Never feel like your alone - a lot of wise people told me that and I'm only just beginning to believe it. We are all here to help each other through these tough times.

Take care and God bless,
Lissy

Hi,

Your story sounds quite familiar. One day, I was playing field hockey, got a migraine and it hasn't really gone away since. (i had had migraines before, but never one that lasted more than a week. No, there was no head trauma during the game.} That was thirteen years ago, I have now been diagnosed with New daily persistent headache/chronic intractable migraine. It is one of the more refractory types of migraine. You might want to ask about this.

I have been treated at diamond and I remember a lot of emphasis on biofeedback/meditation. I use it, but in sort of a different way.

What medications are you on? I was on too many while I was there and they made me worse.

Do you have a local neuro or are you near the clinic? If you have a local dr, check in with him too.

I am so sorry you are having such a rough time. What helps you the most- abortively and preventatively. After 13 years, the preventatives that have worked best for me are- Zoloft, Zanaflex, Klonopin, ativan, and pristiq. The abortives that have helped are- Tylenol 3, Morphine, benedryl, periactin, a course of steroids, and if worse comes to worse, an IV of Depakan, benedryl, phenergan, toradol, and morphone.

I have greatly benefitted from an occipital nerve stimulator and from nerve blocks at C2-C3 bilaterally.

I hope this information helps.

Pain free days,
sailingm