Migraine

I was diagnosed at the age of seven and they have gradually gotten worse, to the point that I am now disabled.
I live my life in pain, but have learned to appreciate the less painful days.
I'm a mom of six, so needless to say, I have learn to suppress a certain amount of pain, which we all know is the worse thing for a migraine.
I have tried all meds out there, been thru numerous procedures, and have watched the complexity of my migraines increase.
Now a new symptom... seizures... never had them before, but i have them frequently.

Does anyone else feel as hopeless as I do these day?

Hello Denise and welcome to the forum family, it's great to have you here. You've come to the right place for accurate information and caring support.

When you have a moment, please check out the Start Here Folder for information and guidelines about the forum.

A great article to help you begin is:

Learning About Migraines - Where To Start

I know after being in pain for so long things can seem bleak, but remember, we are here for you and understand what you're going through. It may seem as though you've tried every medication out there but there are over 100 medications that can be used for Migraine prevention and virtually endless combinations of them.

Migraine preventive medications: too many options to give up!

Are you currently seeing a Migraine Specialist? I didn't even know they were out there until I joined this forum. I began seeing mine in January and I've seen improvement in my Migraine patterns. I travel from Virginia to Texas and it's worth every penny.

Do you know what types of Migraines you have? Here's a list:

Types of Headaches and Migraines

Did you tell your doctor about the onset of seizures? It's important to let him or her know about any changes in our Migraines.

Welcome again! I look forward to seeing you around the forum. If you have any questions, just ask

Hi Denise,

I'd like to add my welcome too. Being in chronic pain is exhausting and frustrating. Laura has given you great information to start you off.

Please don't lose hope. It may feel like you've tried everything out there, but hopefully with the right combination of medications and a good working relationship with a Migraine specialist you can begin to get your quality of life back to manage your refractory Migraines.

Teri and I are just finishing up at a headache conference, stressing the importance of early, effective abortive Migraine treatment. Reducing the frequency and severity of attacks is the goal of these doctors - be assured there are things that can be done to help.
This is more important then ever because evidence show that people with a long history and/or frequent Migraines are at an increased risk for silent brain damage. Continue reading Yes, Migraines Can Cause Brain Damage for more information.


Have you looked at trigger management? Identifing and managing Migraine triggers is a vital role in a Migraineurs health care plan. Some of these triggers may include dehydration, changes in the weather, certain foods, and even different sleeping patterns. We have more information on Migraine triggers HERE. On that page you can also download a Migraine diary.

We are here with plenty of support and information, and happy you found us. We look forward to hearing more from you.

Hello, Denise, welcome to the forum. We're glad you found us. It looks as though others have done all the work, and I just get the pleasure of giving you a warm welcome.

I'm glad you are with us.

Welcome to the forum family!

Please feel free to ask any questions you may have. We are all here to learn and educate each other!

Welcome again!

Thank You to Everyone! It is nice to know that there is others suffering from this disease, understand the pain. Although, I wish that no pne here should feel this incrediblly bad pain.

I have seen so many doctor over the span of 30+ years. The list is very interesting to see

I only find that they want to give me drug, other drugs, and more drugs.

Its very scary to me when I wake up and it is three day later and have no memory to what happen.

As I sit here typing, tears well up in my eyes dreading the next attack.

I want to live life, not fear it.

Thank you for the warm welcoming!

Denise,

I'm concerned about what you said. How often does something like that happen? Do you have a doctor who is aware of your situation?

quote:

Its very scary to me when I wake up and it is three day later and have no memory to what happen.

I know you said you've seen many doctor's over the years and I can certainly relate but I've found that with the help of a Migraine Specialist, things are improving for me and it's something you may want to seriously look into for yourself. I gave you the link of Patient Recommended Headache and Migraine Specialists in my post above.

Headache and Migraine Specialists – What’s so Special?

I also used to dread when my next Migraine would strike but I've learned to appreciate the days that I'm pain free and cherish the time with my DH and my kids. Coming to this forum has also been a tremendous help in getting support and becoming educated. So, come here often, you'll get a lot out of it

I have been diagnosised with Acute Chronic Complex Hemiplegic, Basilar Migraines, with dissociative amnesia and seizures.

When the pain gets to a certain level, I mentally 'check out'. I'm still doing things, usually look drunk and slurring words - all symptom are due to the headache. Since I have had them primarily all my life, I have found that there is three different personality sides which seem to coincide with points in my life that the headaches increased or became complex.

I have seen the "headache specialist" here and the last time they had to admit me due to the "drug" holiday" they ordered, knowing the severity of my condition. I was in a coma for three days.
Then I saw another physician that was sure that the answer was 'occipitol' nerve injections. That didn't go so well. The numbing agent was decreasing and the mind blowing headache to it's place. When I called to ask what I was suppose to do, I was told I would have to 'tough it out' and it would get better. ( remember these are the specialist in the northwest ).

Then came the first stroke. I was at work and I really could tell you what all happened, but I work at a doctors office and there was an ER across the street. No one called 911, no doctors came from the back. I ended up at a hospital across town... they said I drove myself. It was to days later when I started remembering things.
I lost my job due to 'not having all my facilties'.

I was also a patient in another office but was managed by the same company, and they "dismised me" because I had 'clean UA' and was told that I was selling me drugs. They further said that no one should test clean with my meds, even though there record on me was right in front of him and saw that I had a shot at their office just within a few days of the test. ( my body metabolisis fast ) It was an excuss to get rid of me. In the process they labeled me in all the other offices and I was without a doctor.

I now have an ARNP that is treating me - as a whole person, not just the migraines. The mental part of these was devistating to me. - I don't have to go to the ER anymore - he treats me whenever I need it. We both explore different preventatives, but haven't found a reasonable plan.

The depression is getting worse, and we are going into a bad time of year for me. My third daughters birthday is coming up - she past away when she was 4 months old - my TCH has bottomed out, but my T4 is good, so I have gained a bit of weight, and for a long term anorexic, its getting harder and harder.

I always have ALL my med slips with me and I rotate them so I am carrying the most resent information, as well as all the doctors all the letters and current information on the treatment. I have emergency contacts all over my purse, bags, ect.and I alway have a current letter from my doctor, since I see him weekly. None of this works.

I have plotted out many controllable and non controllable triggers, but a person does need to eat, and with that diet, I wouldn't have anything left to eat.

I see myself dying and I don't know if it would bring sadness, or a sense of relief, not to have the burden of caring for me.

The pain, it's unbearable, and the light at the end of the tunnel usually isn't the sun, it's another train, which train will be the last one I have to face?

Hi Denise, So absolutely sorry you are in such pain.

You asked if anyone feels hopeless. It has been three good days for me, but this last year I have had more bad days than good. I have suffered with CFS/Fibromylagia/ and HMs since 1989. I also had severe dysmennorhea and endometriosis until I had a hystoerectomy a few years ago. I have suffered from anxiety and depression for years because of the chronic illnesses and the disabling effect they have had on my life.

I understand being discouraged, depressed, and in pain so does most of this forum. We even have a special folder for support of each other--Support, Vents, and Gripes. This forum has been a huge support mechanism for me the last year.

The information and contacts means were not alone in our daily nightmares with Migraine Disease.

Mary in NM

Denise, it certainly does sound as though the depression is getting worse. Have you made the doctor or ARNP aware of how depressed you are becoming? Do you have a counselor or therapist you can talk to? Please make the doctor or ARNP aware of your increasing depression as soon as possible. I know things lookand feelhopeless, but please try to remember that feelings are not facts.

Hard as it is to hear and believe right now, there IS hope. Please don't give up. We are here for you.

Yes, My ARNP is very aware of all my medical issues. I see him weekly for couseling and for meds check up. We usually have an hour together so we can work on all the issues.

I feel like I have to take meds to wake up, meds so I can eat, meds for anxiety, and meds to put me to sleep.

Never ending cycle - one that seems hard to break.

Hi Denise,

Your posts hit on a few points that we all deal with from time to time. Migraine disease at its best, is a few attacks a year, easily managed with triptans. This is what we all would like to have. But for many of us that is not our reality.

Our reality entails overseeing a chronic neurologic condition, Migraine disease. We manage Migraines like others would manage diabetes, epilespy and asthma. This may mean going to many doctor appointments, taking mulitple medications, seeing a therapist and seeking complementary therapies.

Someone with asthma may have to change their medication regime, I know my son has had to. Certainly people with diabetes do. Migraineurs aren't really different, except it may take a LOT longer to find the right combination of medications to work and there are considerably fewer Migraine specialists then endocrinologists (doctors who specailize in hormone inbalances and treat diabetes)or pulmonologist (doctors who specializes in lung conditions and treat asthma.)

I can't tell you how many medications I have been on and off and on again. With multiple conditions it only gets worse. What has worked for me is coming to terms with this whole chronic condition thing. And let me tell you that was not easy. I was always looking for that "magic bullet" to make all my pain go away. There is no one size fits all for us. Chronic means for the rest of my life, acute means short term and will go away. A friend, who is a breast cancer survivor once told me she would rather go through her ordeal because she knew it would end - one way or the other. With me, she said, my chronic pain is just that, chronic, never ending, and she didn't know how I could live like this. I almost fell off my chair. This from a cancer survivor. This game me plenty to think about.

It can feel like a never ending cycle, but sweetie, working together with together doctors, and having the support of our family and friends, and of course this forum ( ) we can help each other through the tough times.

Very well put, Nancy!

Denise, I am so sorry to hear that you are suffering!

Depression and Migraine are co-morbid - one does not cause the other, but for a lot of us, are both present. And why wouldn't depression be present? Having more bad days then good, in pain all the time.....it's bound to happen!

I know that you are still new here, but this is such a great place for information and friends! It is so wonderful to know you can come here and get the "I know what you are talking about because I've been there!" instead of the blank stare you get from co workers or friends and relatives.

I am happy to hear you have someone who is helping you out. Maybe they would like to check out this website as well? We have a friends and family section, plus the SO's (significant others) section, too.

Please keep us posted on how you are doing. If you need anything, please ask! We are all here to help and learn!