Migraine

Hello everyone!

A member from another site that I participate on pointed me in this direction. I think my mom had also previously sent me articles from here as well.

My name is Kellye, I live in Houston and not only do I have frequent migraines but in April of this year I was also diagnosed with Idiopathic Intracranial Hypertension. I also deal with some other health issues including but not limited to fibromyalgia, TIA's, chronic insomnia, tendon impingement in my shoulder, osteoarthritis, chronic anemia, IBS and RLS.

As I said I have frequent headaches and at first it is difficult to determine if they are mirgaines, high pressure in my brain for the IIH, or pain due to pinched nerves in my neck. After a bit I can tell depending on how they respond to meds.

I have a neurologist who doesn't quite know what to do with me although his ego would never allow him to admit that LOL! Fortunately for me there is a Physician's Assistant who was actually a doctor in his home country who is fascinated by my ever increasing problems and he is my champion and advocate. He has advised me to start the application process for disability but I haven't yet out of fear and just being overwhelmed with all the work involved in it.

It was suggested to me that I try to find a headache specialist but I am not sure where to go or how to look for one. I hope to maybe find an answer for that here.

I will probably lurk here, at least for a while as I read and learn. Also, I have an obligation on the invisible diseases board and have to devote a good amount of time there fulfilling my duties.

I am very glad this place is here yet sorry that so many people need it. Migraines are awful!

So, that is my story.

Take care,
Kellye aka red65

Hi Kelley,

Welcome to the MyMigraineConnection 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 and Headaches - Where To Start

Living in Texas you are in luck because there are some awesome Migraine specialists you can see. With your "complicated" case (and believe me, lot of us are) it be great to be seen by any one of them. You can see them by clicking on this link: Patient Recommended Migraine and Headache Specialists

Our information on IIH can be found HERE. Have you had your eyes checked? Any vision issues with your IIH? I have IIH, and "very full optic nerves". I think that is a nice way of saying papilledema. They, the doctors, always talk about weight loss - yup I doing it down a bit. Still have the ringing, blurring in my eyes, and oh yes, the HEADACHE!! (Sorry, it is about you not me -

Anyho -

I'm so glad you've found us and let us know what else we can do to help you out, ok? Nothing better than having another IIH'er among us.

Welcome

I'm new here too, and have IIH or what they used to call pseudo tumor cerebri. Have you had a LP to relieve your pressure? Dont give up trying to find a doctor until you are satisfied that your needs have been met.

I hope you find this website and it's wealth of knowledge as useful as I have.

Nicole

[url=http://sweetmigraines.blogspot.com/]/url]

Nancy,

Thank you for the links and the welcome. I am fortunate to have the Texas Medical Center at my disposal. Problem is I am absolutely TERRIFIED of driving there LOL!!! Traffic is horrible, one way streets, crazy drivers etc.

I have not yet seen a neuro opthomologist although I need to. I was laid off from my job 20 days after receiving my diagnosis and while people would tell me COBRA is automatic, it's just not that simple. It took me until the end of July/first of August to get the people administering the program to load my information into the system, then load my family into the system and finally set it up where I could actually use it! Of course I could have seen someone prior to that and then claimed it afterwards but my husband was laid off the week before me so big expenditures were not a problem. People just didn't seem to GET that! Oh well, it's up and running now.

I do have papilledema. That was the first hint of what could be wrong. I also had/have at times non-stop headaches, horrible balance issues and vision issues including everything going blurry at times, lots of floaters, a sense that my peripheral vision was blocked. The two craziest things though were that I lost my ability to see in ambient light. I had to carry a flashlight with me because looking down at my feet when there was low lighting I couldn't see a thing. The other thing was a sense that you would get when you step off an escalator in a store. For a split second you feel like you are still moving. Well, I felt that over and over again every day even though my feet were on the ground!

My opening pressure was 280, they drained me down to 180 and started me on Diamox. They recently told me that the papilledema is gone in my right eye and much improved in my left eye. Still I have horrible headaches, like tonight, where I type with the left eye closed because it is so sore and irritated and involved in the headache.

Nicole (I love that - I used that as my daughter's middle name!), thank you for the welcome as well. I have only had one LP so far. The neuro has talked for several months about doing a second one but because I was laid off and didn't have COBRA in place I refused. We will see what the fall brings. Right now I am on Diamox. They started me on that right after the LP plus I had already been on Topamax due to migraines. It serves double duty in this case.

Thanks again to both of you for the welcomes. I had already read all the starting information but will most definitely check out the other links. Right now I hope to be going to bed soon!

Have a good night!
Kellye

Hi Kellye, please add my welcome to the pile

Are you close to Dallas? We have a Specialist located there that several of our members, including myself, see and we adore him! I also have a local neuro that I work with so you'd be able to keep your current PA. Just a thought for you to ponder over.

Applying for disability is easier than you'd think. I applied in August of 2007 and was approved a few months later. I did my entire application online and then brought all of my medical records and a letter from my former employer down to the disability office and that was it. Here's some information you can take a look at:

• Disability Benefits – SSI and SSDI

Welcome again! I understand about your obligation to the other forum, but I hope you'll still pop in from time to time and let us know how you're doing!

Hi Kellye

I'm glad you made it over here from Spoonie-land!

Laura talked about a specialist in Dallas... I too go to him- all the way from NC, and also have a HA specialist back here in Raleigh, NC.

My life has been changed dramatically for the better- I'm getting stretches of 2 or 3 weeks in between Migraines, whereas before I started with him,

I had been with various doctors for four years, and still had Migraines every other day, and was throwing up at work, and landing in the ER like a frequent flyer due to having Migraines last more than 72 hrs.

I don't know if you have Migraines that last more than 72 hours, but if you do, it's important that you get them broken, either at a doctor's office or the ER. After 72 hrs straight without a pain-free stretch of 4 hours- you're in Status Migrainous which leaves you at a higher risk of stroke due to the Migraine!

Anyhow- I just wanted to welcome you to the site, and make sure you're comfy feeling free to ask any questions that you may have. This place is a treasure trove of information!

Hi Kellye,

If I'm not mistaken, the vision issues with IIH, if not addressed properly, can become permanent. I STRONLY suggest you see a neuro-ophth as soon as you can. I'm not trying to scare you just take care of those eye. You get one set

Could your husband go with you to a Migraine specialist? It is always a good idea to take someone along because we may miss some of the details when meeting with our doctors.

quote:

Originally posted by red65:
Nancy,

Thank you for the links and the welcome. I am fortunate to have the Texas Medical Center at my disposal. Problem is I am absolutely TERRIFIED of driving there LOL!!! Traffic is horrible, one way streets, crazy drivers etc.

I have not yet seen a neuro opthomologist although I need to. I was laid off from my job 20 days after receiving my diagnosis and while people would tell me COBRA is automatic, it's just not that simple. It took me until the end of July/first of August to get the people administering the program to load my information into the system, then load my family into the system and finally set it up where I could actually use it! Of course I could have seen someone prior to that and then claimed it afterwards but my husband was laid off the week before me so big expenditures were not a problem. People just didn't seem to GET that! Oh well, it's up and running now.

I do have papilledema. That was the first hint of what could be wrong. I also had/have at times non-stop headaches, horrible balance issues and vision issues including everything going blurry at times, lots of floaters, a sense that my peripheral vision was blocked. The two craziest things though were that I lost my ability to see in ambient light. I had to carry a flashlight with me because looking down at my feet when there was low lighting I couldn't see a thing. The other thing was a sense that you would get when you step off an escalator in a store. For a split second you feel like you are still moving. Well, I felt that over and over again every day even though my feet were on the ground!

My opening pressure was 280, they drained me down to 180 and started me on Diamox. They recently told me that the papilledema is gone in my right eye and much improved in my left eye. Still I have horrible headaches, like tonight, where I type with the left eye closed because it is so sore and irritated and involved in the headache.

Nicole (I love that - I used that as my daughter's middle name!), thank you for the welcome as well. I have only had one LP so far. The neuro has talked for several months about doing a second one but because I was laid off and didn't have COBRA in place I refused. We will see what the fall brings. Right now I am on Diamox. They started me on that right after the LP plus I had already been on Topamax due to migraines. It serves double duty in this case.

Thanks again to both of you for the welcomes. I had already read all the starting information but will most definitely check out the other links. Right now I hope to be going to bed soon!

Have a good night!
Kellye

Hi, Kellye! Yet another hello for your pile!

Nancy used the word "complicated". Me, I prefer "quirky"! For all of us with multiple chronic ick, it definitely gets interesting in a hurry, huh? My main stuff to watch is thyroid, migraine, and fibro, but there are other back-burner things that aren't as prominent, too. It can be a full-time job trying to get them to just play nicely together.

We're glad you found us. My original endocrinologist claimed that I was just too quirky, and wouldn't ever stand a chance of finding other people in a similar boat. I can't tell you how relieved and excited I was to find the forums and prove that one wrong. I suppose you know just that feeling. I lurked about a month or so before posting, just soaking it all up. That one post was awful addicting, and here I still am.

It's nice to meet you.

Jamie pegged me, I am a spoonie in another life LOL!!!

To answer the question about the duration of my migraines, yes they do last days at a time. Four is not unheard of for me and since I have already had a T.I.A. and evidence of a prior bleed this information on status migrainous is important to me.

The last migraine I had (I mean prior to the one I've had for 5 days now) I had had for 4 days. I had a neuro appt that day and got my first ever shot of stadol mixed with phenergan. They made this big deal of it saying somebody had to come there and drive me home because it was going to knock me out. Please!!! I should be so lucky LOL!!!

So, my neuro has been out of the country for almost a month now. My past two visits I have seen Doctors who don't know me from Adam and focus on one thing only instead of my whole "quirky" self. Doc #1 was only interested in my papilledema from my IIH and because it has calmed down to almost nothing in my right eye and just a little in my left eye (which he missed but my PA caught) he pronounced that I don't have it. Since this isn't an IIH board I will leave it at that. While I am very fortunate that the swelling has calmed down (confirmed today at my request - residual in right eye but still some in left eye - will wait til my neuro is back to ask about neuro-opth, Nancy) I still have horrible balance and nausea issues and still a lot of floaters and tracers.

Anyway, today's visit I have been dealing with a horrendous migraine for 5 days now. I fell last Sunday early in the morning when I went to the bathroom and apparently hit my head right above the eye on the sink. I have no memory of it I just remember waking up on the floor under the sink in tremendous pain with my face so swollen it fit into my cupped palm of my hand! The Dr. du jour today declared it was post concussion migraine (the fact that I'm still walking around with a huge purple eye is a dead giveaway that something happened LOL!).

So, now I get to my question. Sorry I am long winded and detail oriented! He prescribed Maxalt to be taken 3 times a day for 10 days with 3 refills. Never mind that my insurance said no way, no how but has anyone taken it for post concussion? I have never had a black eye before much less a concussion so I am shooting in the dark here so I thought I would ask.

I go back in two weeks. My regular doctor will be back by then. He and I have not always had the best of relationships but I swear I am going to hug him when I see him because then I can address ALL of me and ALL causes of my headaches.

To those who ask where I am, I am in Houston. Driving to Dallas would not be an issue mile-wise but insurance wise I am afraid it would be. I am on COBRA from a healthcare company that was self-insured and if you don't use their doctors/their facilities they charge more and if you go out of network they charge even more. Since I live in Houston I am afraid I would have a hard time justifying a doctor in Dallas. I'm not sure but I will check.

Ok, anybody who has read this much must be a saint. Sorry, I get carried away!

Hugs to all. Time to try a Maxalt and pray for the best.
Kellye

Kellye,

-:¦:-•:*'""*:•.-:¦:-•*Hello!*•-:¦:-•:*'''''*:•-:¦:-•*Welcome to the family!*•-:¦:- •:*'""*:•.-:¦:-

Wow, you have your hands full, kiddo!

I'm a bit concerned about the Maxalt. Taking it more than two or three days a week can actually lead to headaches called medication overuse headache, aka rebound. You can read more about that in Medication Overuse Headache - When the Remedy Backfires.

Do you usually take triptans such as Maxalt? Some doctors won't prescribe them for patients with a history of TIA.

As for specialists, take a look at Dr. Randy Evans in Houston.

Welcome again!

Hi there again,

I am an "old pro" at post-concussion syndrome. Maxalt is not typically given as Teri said for that particular condition. There are some pretty standard guideline in diagnosing post concussion, and usually takes more than 5 days.

We have some information on mild traumatic brain injury, which is what a concussion is, in this article: The Significance of a Bump on the Head

Teri & Nancy,

Thank you both for the information, both on Maxalt and post-concussion.

To answer Teri's question, this is my first exposure to Maxalt and the first time I was given anything similar was at the end of July when they gave me the shot of Stadol in the office. They sent me home with 3 Treximet (?) I have taken two and still have one left.

I thought the use of Maxalt was strange but I looked it up on the net (I think WebMD but was in so much pain at the time I can't guarantee that) and it said that the use of a med like Elavil (which I am already on for fibro) plus something like Maxalt or a similar class of drug is sometimes used. Still, three times a day is excessive and I do not want rebound headaches. I will look at the links.

I have a fairly strong pain med for when things get bad but even that doesn't really do much. I'm at my wits end. I think it is time to find a headache specialist. I deal with headaches daily and to be honest, it is hard for me to figure out which kinds I am having, (migraine, high pressure from IIH, possible cluster, rebound???) I just know that I don't go a day without a headache.

I'm glad to be here and hope to learn lots from you guys and once I know more then I hope to also be a source of support as I am on other boards. But here I am the newbie LOL!!!

Thanks to all who have responded and Nancy, thank you for the links! We having a grand opening of our used book store this weekend so I'm hopeful that between customers (fingers crossed we will have customers LOL) I am going to look at the links you gave me.

Take care!
Kellye

Kellye,

You're very welcome. I love your spirit and attitude! We firmly believe that WE are in charge of our health, and that we need to work with our doctors as treatment partners. Learning about our condition lets us do that better.

Nothing you've described so far seems like cluster headaches to me, but I'm certainly not qualified to say what they are. Here's yet one more link for you. On this page, you'll find basic articles about different types of Migraines and headaches: Types of Migraines and Headaches

I agree about the specialist. Dr. Randy Evans is right there in Houston.

Used book store opening! I love book stores. Wish I could be there!

quote:

Originally posted by red65:
Teri & Nancy,

Thank you both for the information, both on Maxalt and post-concussion.

To answer Teri's question, this is my first exposure to Maxalt and the first time I was given anything similar was at the end of July when they gave me the shot of Stadol in the office. They sent me home with 3 Treximet (?) I have taken two and still have one left.

I thought the use of Maxalt was strange but I looked it up on the net (I think WebMD but was in so much pain at the time I can't guarantee that) and it said that the use of a med like Elavil (which I am already on for fibro) plus something like Maxalt or a similar class of drug is sometimes used. Still, three times a day is excessive and I do not want rebound headaches. I will look at the links.

I have a fairly strong pain med for when things get bad but even that doesn't really do much. I'm at my wits end. I think it is time to find a headache specialist. I deal with headaches daily and to be honest, it is hard for me to figure out which kinds I am having, (migraine, high pressure from IIH, possible cluster, rebound???) I just know that I don't go a day without a headache.

I'm glad to be here and hope to learn lots from you guys and once I know more then I hope to also be a source of support as I am on other boards. But here I am the newbie LOL!!!

Thanks to all who have responded and Nancy, thank you for the links! We having a grand opening of our used book store this weekend so I'm hopeful that between customers (fingers crossed we will have customers LOL) I am going to look at the links you gave me.

Take care!
Kellye

Hi Teri!

Thank you for the referral for Dr. Evans. I will look and see if he is on my plan. Currently I have a headache that I cannot get rid of no matter what. I have pinched nerves in my neck and I am concerned that I may have inflamed those or done more damage when I fell and busted my face last Sunday. Of course me spending a majority of the day bent over with my head past my knees arranging books at our shop didn't help but it has to be done. I think tomorrow I'm going to use my rolling chair and see if that helps.

Honestly I don't know enough yet about these headaches and what happens when nothing I try works. Because I have several different kind of headaches and multiple health conditions it is always a catch-22 or guess-the-cause with me. Add to that the fact that I have the constitution of a horse (seriously, things that knock "normal" people out don't phase me and I have to have double versed, double novocaine, double everything. I hate it!) So, the things in my arsenal include Topamax 100mg daily, muscle relaxer if I have it in my neck, now Maxalt, Ibuprofen which I take 800mg at a time and a fairly strong opoid (strong per normal standards anyway LOL!)

The idea that nothing that I do makes a difference is quite honestly scary. I guess I am just unclear what types of treatments a "typical" headache specialist would use. Different preventative, tens unit, I'm just not sure. As I said before I'm new at this. I will read the links, this just happens to be the busiest week I have had in a long time. Not only do we have our grand opening this weekend but we have my birthday, my husband's birthday and our wedding anniversary!!! But I will take time to read, I promise. I try to be an informed patient so that I can discuss causes, treatments and any concerns intelligently. Some doctors like it, others not so much.

My head is pounding so I will close but wanted to say thanks again.

Good night!
Kellye

Kellye,

Sweetie, you are very welcome.

I hear you on meds and strong meds. I can inject 150mg of Demerol and keep working. Everyone thinks I'm crazy, that it should make me sleep. Nope. But the pain goes away, and I can do things! (Now, meds like that for me are what we call rescue meds, not something I use often at all.)

There are still many, many things a specialist can help you with. First, identifying your triggers. You may have some triggers you could avoid if you knew what they were.

There are MANY, MANY meds that can be used for prevention and would hopefully work for both your headaches and your Migraines.

There are also lots of things other than Maxalt that you can try when you get a Migraine.

I specialist can also work with you on how to identify if you're having a headache, Migraine, or whatever.

The GOOD thing is that it doesn't seem that you've tried many things yet, so there's LOTS for you and your specialist to choose from.

I'd go ahead and call Dr. Evans's office for an appointment. I have no idea if there's a wait for an appointment with him, but I do know he'll be out of the office most of next week. He and I will be at the same conference. Oh, that's another thing. I'm leaving next Wednesday morning and will be gone for a week. If you post, and I don't reply, that's all that's going on.

quote:

Originally posted by red65:
Hi Teri!

Thank you for the referral for Dr. Evans. I will look and see if he is on my plan. Currently I have a headache that I cannot get rid of no matter what. I have pinched nerves in my neck and I am concerned that I may have inflamed those or done more damage when I fell and busted my face last Sunday. Of course me spending a majority of the day bent over with my head past my knees arranging books at our shop didn't help but it has to be done. I think tomorrow I'm going to use my rolling chair and see if that helps.

Honestly I don't know enough yet about these headaches and what happens when nothing I try works. Because I have several different kind of headaches and multiple health conditions it is always a catch-22 or guess-the-cause with me. Add to that the fact that I have the constitution of a horse (seriously, things that knock "normal" people out don't phase me and I have to have double versed, double novocaine, double everything. I hate it!) So, the things in my arsenal include Topamax 100mg daily, muscle relaxer if I have it in my neck, now Maxalt, Ibuprofen which I take 800mg at a time and a fairly strong opoid (strong per normal standards anyway LOL!)

The idea that nothing that I do makes a difference is quite honestly scary. I guess I am just unclear what types of treatments a "typical" headache specialist would use. Different preventative, tens unit, I'm just not sure. As I said before I'm new at this. I will read the links, this just happens to be the busiest week I have had in a long time. Not only do we have our grand opening this weekend but we have my birthday, my husband's birthday and our wedding anniversary!!! But I will take time to read, I promise. I try to be an informed patient so that I can discuss causes, treatments and any concerns intelligently. Some doctors like it, others not so much.

My head is pounding so I will close but wanted to say thanks again.

Good night!
Kellye