Migraine

Hi Everyone:

My name is Rose and am new to this forum. It was so nice to see that this existed. Like all of you this has been very frustrating to be diagnosed with FHM, but hey, at least I have a diagnosis right? After many lab work, scans, MRI they finally know what I have. I am married to a wonderful man and we have 3 kids. I am 40 years old.

I believe, looking back now, that I had symptoms for quite awhile but did not get so severe until May of 2008.The scary part was not knowing what was wrong with me and the most frustrating thing was not to be believed by the medical community. I was very persistant with finding a diagnosis and looked to several specialist to try to help me. Of course they had no idea what was going on either. I left my primary doctor who I was with for a long time because all she wanted to do was put me on a bunch of antidepressants. (I saw her partner the day after 1 ER visit and she actually said to me "Look, what do you want me to do, I only have 20 minutes" I let her know I was upset to say the least.)

They didn't even bother to recommend me seeing a specialist after 2 ER visits, I did everything on my own.The final straw was after maybe 2 months of difficulty walking (especially to and from doctors visits at cleveland clinic) she would not even help me with a handicap sign.

I also have Meniere's disease that complicates and triggers the HM. I have been able to isolate many triggers by keeping a journal and some I can and can't avoid. I have had Chest pain and neuropathy pain with the episodes as well. My meds have helped to decrease the symptoms and are much better than what it was last year.

I was bedridden most of last year and had awful leg pain to left side. My hands have difficulty grasping things, I still have difficulty with walking and my memory not so good and vision blurry, with the episodes. My speech can be slightly slurred as well, not bad enough for anyone to notice. I wear 2 hearing aids for my bilateral hearing loss but sometimes choose not to wear it because I get headaches with noise-visual and auditory overload are triggers as well.

I was finally diagnosed at Cleveland Clinic and so far have been pleased with my neurologist and have found a wonderful primary care doctor. I am able to e-mail them both for questions and that really helps to decrease the cost of doctor visits.MEDICAL BILLS ARE KILLERS, as all of you know and with an insurance with a high deductible everything is out of pocket except for preventative. If only FHM was preventative!

Some of meds are diamox, cymbalta-great for neuropathy and migraine (although neurologist wanted to increase to 60 and I became depressed so stayed on 30-weird huh?), Magnesium, Calcium, Vitamin D ( I was severely defecient in this as well and encourage everyone to have a vitamin d level especially in northern states where there is little sun in fall and winter), and Verapmal ( very helpful).

I use an AFO boot to left leg when it's real bad, I have a cane and a walker and wheelchair as well when I need it. I have 12 steps that were difficult to manipulate and my husband last year had to carry me up. This year I do better although during episodes we have a certain way of walking up the stairs where he stands behind be. (Looks a little like dirty dancing

Good thing is I still have normal days and can now pass football with my boys, I might not play anymore, but passing the ball is just as good.

Again, thank you for this forum. Wow this was way too long, sorry. I reallllly appreciate a support group like this.

Many happy days without episodes to you all.
Rose

Hello Rose and welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.

It sounds like you are already a very well educated patient so kudos for you in becoming such an active part of your treatment. I'm so glad you were finally able to find a doctor who would listen to you and get you started in the right direction.

I also take Diamox, but I take it as a preventive for weather related Migraines. It seems to be working fairly well. I don't trigger every single time a front moves through so that's an improvement for me!

I'm going to give you some links to some articles I think you'll find helpful, although, you are probably well aware of the information that is in them. I'll also give you the link to our free, downloadable diary and you can see if you like it any better than the one you're currently using.

• Hemiplegic Migraine - The Basics

Headache and Migraine Diary

• Common Migraine Triggers

• Managing Migraine – Migraine Trigger Foods

These should give you a good start. Have you had a chance to check out the Hemiplegic Migraine folder yet? You'll find several members who know exactly what you go through in there.

Welcome again! I look forward to seeing you around the forum. If you have any questions, just ask and we'll do our best to help

Hi Rose,

Welcome to our forum! I too have FHM as well as prinzmetal angina. Just like you, I've been bedridden most of the year and have a cane, walker, and wheelchair. On my good days when I'm able to get out, I just take my wheelchair with me now, i.e. push it whereever I go to give us peace of mind. I know all about those stairs too. We just moved from a 2-story condo to a 1-story, first floor apartment with no stairs or stoop...perfect.

Isn't it so frustrating (and a few other words) when the medical community doesn't believe you or just dismisses you!?! I'm so glad you find doctors you are helping. And yes, a diagnosis is something!

Question for you: You said you have chest pain. Have you had that looked at? Reason I ask is: there are a few of us here with HM who also have prinzmetal angina (vasospasms). Our cardiologists believe that HM and PA are linked. If you haven't done so, you may want to see a cardiologists.

Stop by and join us in the Hemiplegic Migraine section. We have a thread there where you can introduce yourself.

Wishing you a pain-free day, Tonya

Hi, Rose! Welcome to the forum family! I'm sorry you ended up with FHM, but I'm glad we're here to be able to offer you some support. Definitely check out the Hemiplegic Migraine folder. It's fairly new around here as folders go, but it's been pretty popular among those with FHM, as far as I've seen.

Good for you for going in new doctor direction when the relationship with the last one proved to be lacking. Good for you for standing up for yourself and voicing you concerns with the way she was treating you, too. We like empowered people.

You just take all the space you need to get out all you need to in your posts. Our unwritten rule is that everyone gets their space here. Sounds like you have a really supportive family at home, and now you've got a supportive family here, too.

Again, welcome!

Hi Rose!

Welcome to our forum family!!!

I am so sorry to hear of the FHM and the Meniere's Disease. I do understand your relief to finally know what it is that is causing you the pain. I went for over 15 years thinking that my Migraines were normal headaches that everyone got. I never thought they were different from anyone elses, so I never thought to ask my doctor about them until they became daily and more intense.

We take a lot of the same meds and supplements! I take Diamox daily as my preventive, and all of those supplements and vitamins and minerals you mentioned, yep, me too!

My jaw dropped when I read about your ER visit! I cannot believe that doctor! I hope they sent you a survey asking how your treatment was and you complained! That is horrible! I would have told her where she can go!

Do you have a med-alert bracelet? This can be very beneficial to have with this type of Migraine since it can mimic stroke among other things. Then again, I think all Migraineurs should have one, but that's just my opinion.

I am so happy you have found us! Get comfy, check out the info the other moderators have given you, and if you have any questions about the info, or anything else, please feel free to ask! We are a very friendly group who love to help each other out!

We look forward to getting to know you better!

Welcome again!

Hi Rose,
Just wanted to add my welcome to the list. I'm so sorry to hear that you've been suffering so long. But lots of kudos to you for taking your treatment in your own hands and finding a doctor who knows what they're talking about and is willing to help you to the best of their ability.

Hope to see you around often!

Meli

Hi Everyone:

What an unbelievably grand welcome that was, so refreshing. It is difficult to connect with others who are unaware of what you are going through. Thanks for the links as well, can't wait to look into those. Thanks for the advice regarding the chest pain, I will research this some more and maybe start looking into a cardiologist. I had one ER event due to the CP and all my enzymes were negative including EKG, they dignosed me with costochondritis, basically saying I had muscle inflammation to my chest area likely due to the HM. I have never heard of prinzmetal angina and am anxious to read more about that.

Thanks again everyone.

Rose