Migraine

Hi,

First off, thank you to everyone who has already welcomed me. I replied to a few posts a few days ago. Everyone is so sweet.

My name is Pam. I am a 27 year old and have been getting hemiplegic migraines for the last 9 years.

I have not been offically diagnosed, but I know that have hemiplegic migraines. When these orginally started, I met with neurologists and other specialists had numerous test done. I was given a clean bill of health. I was happy I didn't have a deadly tumor or diagnosed with epilepsy, but a clean bill of health wasn't good news either.

My first neurologist, basically called me a liar. This was seconded by my dad, who for years has tried to tactfully tell me that it isn't nice to lie about my health to make people pity me. No matter how hard I try to explain to people I am not making my symptoms up, that they are very real, I will always find a skeptic.

My first episode occured just after I drove 45 minutes to my college in at 7:45 am. I was sitting in my car. I had just put my car into park, took my key out of the ignition, reached for my bag in the passenger seat, and passed out. I woke up drooling, confused, anxious to get to class, my left side was tingly numb, dizzy deperately thristy - 2 hours later at 9:45. I was in a parking lot. I dragged myself (literally) into the building.

My intent was to aplogize to my psychology professor and make it to my Spanish class. My Psych professor saw me walking, hanging on to the wall and ran up to me. I tried to apologise and all I could hear was this mumbling coming from my mouth that made absolutely no sense. He said under no certain terms to go to the health kiosk and not to worry.

Tests, MRI, CAT, EKG, EEGS, blood tests, etc were given. Nothing was wrong. When my neuro said I was lying, I asked for a recommendation for a new doctor. He yelled at me, called me name, made me cry and gave me the recommendation.

That neurologist said I was just having migraines. Regardless of my question that how could this be migraine, he shrugged his shoulders and sent me out the door. I never saw him again.

Since a person can't quit/go part-time college and be on insurance with their parent, I had to get a job to get insurance. My health issisted on it. I quit college and got a full time job with health ins. However, insurance doesn't want to pay for preexisting conditions and I haven't been able to afford to take care of myself since is seems like. If I can afford my bills, I can't afford ins. If I can afford ins, I can't afford doctor appointments or the ins doesn't want to pay for it.

I can't keep a job for more than a year due to my need to take more than approved days off. They always come up with a legal way to fire me, but I can read through the lines. There is a total attitude change once they know what I have. I don't have to tell them I have a med problem before they hire me, or they won't hire me. When I tell them what I have, they are working on ways to send me out the door.

Has this happened to anyone else in this forum? How do you tell your employees, how do you handle taking days off? How do you answer the questions on your symptoms.

I keep going. I am close to finishing my BA in Information Systems. I am worried about getting a job and keeping it after I graduate.

How does anyone support themselves with this disease?

Sorry for this really long post. I have so much to say and ask, yet. I will stop here and ask a little at time.


Wishing I had more answers,

Pamela Kelly

Hi, Pamela. First of all, never worry about the length of your posts.

I'm sorry about your experiences with doctors. It's time for a migraine specialist. See this list:

Patient Recommended Migraine and Headache Specialists

It's really important that you get the right kind of help if you are going to meet your other goals. These doctors should be able to diagnose you and be aware of your treatment options.

Please, don't give up. There is hope, and we will be here to support you as best we can.

Hi Pamela

Welcome to MyMigraineConnection, we are so glad you've found us.

Many times MRI's, CT's and the like will be normal, which is a good thing, but that certainly doesn't mean you don't have Migraines.

Hemiplegic Migraine is a rare form of Migraine disease best treated by an expert, a Migraine specialist. I know how hard it is not having insurance, but not having the correct diagnosis and treatment plan is no good either. I would encourage you to seek out the help of a specialist. We have a few in Florida on our patient recommended list you can see HERE. .

Hemiplegic Migraine - The Basics will provide you with good information on HM.

We hope to hear more from you, and please let us know how you are doing, ok?

Hi Pamela, looks like you've gotten some good information already. Just wanted to add my welcome to the pile. You are definitely among others who understand what you're going through - migraine is a difficult disease on the best of days. Glad that you found us.

Hi Pam!

I'm not sure if I welcomed you somewhere else, but you can never have too many welcomes!

Looks like you've gotten some good links already and are managing your way around the forum nicely.

Let us know if you need anything.

Welcome again!

Hi Pamela,

I just wanted to say "Hi" and welcome to our little family!

I'm just a "regular" migraine with aura sufferer--I can't even imagine how frightening HM is for you!

I know that I manage to pay my bills because I have a husband who works really hard! I am currently on leave from my Graduate School program because I am unable to finish my dissertation--daily migraine pain, nausea, and aura have really impacted my ability to care for my kids, let alone attend college!

The others have given you good info and advice...Please try to find a way to see a good migraine specialist! A good doctor can make all the difference in the world!

I look forward to your future posts!

jenny

Hi Pamela and welcome "officially" to the forum family

I was very, very lucky to have a great job before my DH was transferred to another state. I let them know that I had migraines but I was willing to make up the hours when I could; ie: lunch, coming in early, etc.

I was also lucky because I started out part time and was able to "prove" myself to them first and then they hired me full time despite my migraines. I also had a "code" that if my office door was almost closed, I was in pain and they accepted that. I also had the ability to leave early when necessary. I worked there over four years and they are a great bunch of people who took time to understand and help when they could.

Unfortunately, when we moved it was around the same time my migraines increased so I'm not working right now but as soon as they are back under control I will be back at work.

If they don't want me because I'm honest about my migraines, I don't want to work for them anyway

Welcome again!!

quote:

Has this happened to anyone else in this forum? How do you tell your employees, how do you handle taking days off? How do you answer the questions on your symptoms.

Hi Pamela, welcome to the forum

Hi Pamela and welcome,
I don't have the same type of migraines that you do. Gaining control of my migraines has been difficult. You have been given some great links to information I hope you will investigate. Gaining control over migraines can give you your life back, it did me. But it takes the right doctor to do it.

Again welcome.
Cindy

Hi Pamela and officially Welcome!!

Others have already given you some great advice. I think I have already seen some of your posts So glad that you are here!! As you know there is a ton of information here to help you manage your migraines and great people to support you while you do it!! See you on the posts

Dar