lonely and in need of support

By debpeach Friday, September 04, 2009

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Hello! I have complex migraines with Ocular temporal lobe of the right eye.

I used to go outside and enjoy life.

I lost my job, due to all the different medications that the doctor tried on me.

Now, I sometime have stroke like bodily functions and my cognitive skills have become different.

I have had several test and the results were not good.

I think during one of my epsiodes I must have had a minor stroke.

My best friend (male partner) now has hesitations concerning me.

I am the same but different does anyone understand "how non-support and if you just have yourself to take care of that it is a very lonely world?"

debpeach

Comments (6) | Add comment

Nancy Harris Bonk, Health Guide

9/ 6/09 9:02pm

Hello, and welcome to MyMigraineConnection.com!

I'm sorry you are having such a rough time right now, but you've come to the right place for information and support! People here understand what you are going through and are happy to share their stories with you.

It sounds like at this point it is time to get an accurate diagnosis and treatment plan. That may mean seeing a "true" Migraine specialist, not just a neurologist who says they are headache specialists. See, here's the thing, neurologists treat so many different conditions, like MS, stroke and epilepsy it is hard for them to be experts in one area. A Migraine specialist treats one disorder - ours- Migraine disease and headaches. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

To simplify matters and make it easier for people to get information and treatment, doctors usually go by the gold standard for diagnosis, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). Under ICHD-II, there is no diagnosis of " Ocular or complex Migraine." We do see it used, but doctors use it differently, so it really doesn't tell anyone what type of Migraine you actually have. You can read more about this in Ocular, Optical, and Opthalmic Migraines and The Type of Migraine Does Matter.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. We hope to see you there. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click

HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com

.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk

MyMigraineConnection.com Expert

trble57

9/ 8/09 2:15pm

hi,

i'm nanc, and i'm alone, my family lives too far away to help. and i have a male friend who stops by occassionally to check on me. my life use to be good, until i fell 10 years ago, since then i've had on going migranes, had a neck fusion, been through trigger shots, nerve blocking and numerous medications. i did have medication that i took for 7 years and that has stoppedmworking. since this time, i have found out that i am allergic to all of the best medications that work. and now i have no health insurance, no job, no life. but have applied for disablity and am still waiting. my doctor gave up on me once i told him i didn't have insurance and he asked me if i was looking for a job!! imagine that, i have to go talk later my migrane is here.

lol

nanc

debpeach

9/ 8/09 4:51pm

this is the problem with migraines.

I am alone alot of the 90% of the year.

Most people don't understand and then doctors misdiagnosis

Now, I can not normally talk and have right side body functions that can go wirerly (made up word)

I understand your delimina completely.

Insurance is temporary for me.... I hope I can get this resolved before it goes away.

thanks for writing1

I just got up from a necessary nape due migraine.

:-)

Nancy Harris Bonk, Health Guide

9/10/09 6:25pm

Hey there,

Good to see you posting again, have lots of support for you here, and are happy to give it . I just got my disability in May. If you'd like to talk with other Migraineurs and get some additional information and support, come join our discussion forum. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.

I'll give you the link and you can read about it, maybe there is some helpful information. My Social Security Disability Journey.

It makes it extra difficult when you don't have insurance to cover your doctor expenses. No, I don't have an answer for that problem and wish I DID. I've been there myself and know how very difficult that makes everything. I can only tell you how I managed, which was to budget very strictly to get the money together for doctors. And if your doctor isn't paying attention to you, or clearly doesn't understand Migraine disease (if he did, he wouldn't be asking you those questions), it is time to find one who can. It is time for a Migraine specialsit - really. We have a few in IL in addition to the Diamond clinic. You can see that list HERE. Migraine and Headache Specialists - What's So Special? is an informative article, take a look when you get a chance.

I hope this information helps, let me know if I can do anything else for you, ok?

cindy

9/21/09 7:53am

I have the same problem! I also havedaily migrains and no one to really talk to that realy understands me or wants to be my true friend. My biyfriend is really the only one that has really stood by me.

that is why I usually turn to this site is because everyone here is pretty much the same issues.

debpeach

10/ 4/09 10:50pm

I will start on the forum. I went to the site, but GA does not have anyone listed.

thanks everyone! Deb

lonely and in need of support

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