Sunday, May 27, 2012

Migraine Suffering, I am so scared.

By Doloxysi Wednesday, December 09, 2009

For those of you who suffer from migraines, I am so so sorry. I feel your pain and I can sympathize with you to the fullest. I have a big heart for those who have been through one. They are not just any headache. I suffer from A-Typical migraines with Aura. It's not a common migraine but one that is intensified causing paralysis of certain parts of your body. It's completely debilitating.

I fought one off today. I was lucky to dodge the 24 hour pain induced right after an Aura. I have had them ever since I was 7. But being pregnant has triggered a whole array of these terrible things. It's the most pain I have felt in a while. The first one I had since being pregnant was last month, when I started to see spots, then colors I have never seen before, a kaleidoscope of geometrical shapes that trigger eye pain in every direction you look. Then, after about a half hour of seeing funky things, the headache comes, it's an all-over headache. Mainly in the back where the cortex is. Light and noise become things you cannot even stand. A dark solitary confinement is all you crave. After the headache starts, then the state of confusion comes, (i.e. was I suppose to go on green or red?) Road signs become foreign to you, the lines in the road become mesmerizing as you temporarily forget what they all mean. Then as in your state you remain, you start to question your own sound of your voice, feeling shaky and sweaty you start to feel nauseated. Puking seems like the only thing you can do. I threw up about 5 times at once, feeling helpless. My hands were numb and so was my face. I couldn't understand how all this could stem from a migraine. I was in my own silent hell that nobody knows what you are experiencing unless they have had one.

Today it began with reading. As I was sitting there reading back to myself what I had typed, I noticed I couldn't read to myself in my head. I was so confused; words were not coming to me. I tried to depict what the word looked like but knew what it was but could neither comprehend saying it nor even voice it to myself. I was so helpless. As I sat there trying to read, trying to speak, I couldn't speak. I could not say a word. I tried, but all that came out was bu bu bu, or mumblings of only and incoherent drunk would slur. What if my phone rang? What if I couldn't say anything normal? How long was this going to last? Luckily for me, it was about 5 minutes. Then I took two Tylenol to prevent the headache from kicking in. I started crying because this has never happened to me before. I have been to the doctor numerous times and he told me all of this is normal for an A-Typical Migraine and they intensify with pregnancy. Men rarely get migraines. If there is anyone reading this, and you have suffered these before, I would like to know what you have gone through and how you deal with it. This is a scary experience and nobody should ever have to go through this and nobody would understand what I am saying, only if you have gone through it.

12/10/09 5:59am

I am so sorry that you are going through this. Ive been suffering from migraines since I was 15. I have several different types of migraines and some of them are like what you are talking about. I feel for you. I have had a numbness go on my hands, face, and arms down to my neck and seeing spots and like one minute your aware of your surroundings and the next  your not sure where you are and then you realize oh yea im driving pull off the road. Right now I really dont have a doctor I see, I go to ER alot. Ive taken probably 50 different medicines and they work for awhile and then they dont work anymore. Im a miserable mess its like I get them more than i should. I feel for you and I hope you are okay and everything.

12/10/09 11:02am

Thank you for sharing your experience with me. I am so sorry. I feel for you that you have to take so many medications. I havent gotten into any medications yet to control my migraines because they just come out of nowhere, very sporatic. The only thing i can take is tylenol for now. But while doing some research on Migraines, i ran into TIA's. Do you know what these are? they are mini strokes, or like a "fake" stroke. Im sure since you are a migraine sufferer you might be aware of it. Also, doing more of a deeper research on the onset confusion and no speech of a migraine, i ran into CADASIL. It is a Disease. It links migraines to early dementia. And if you type CADASIL on ask.com, it will help you understand the link between the two. Its really interesting. I suggest you read into it. I wish they had something that would eliminate migraines forever for us, but they do not. The only thing that comforts me through these things, is knowing that i am not alone in this suffering and also learning all I can about these horrible things and all of the effects that come with it. Again thank you for sharing.

12/14/09 8:01am

please have another talk with your OB. there are meds other than tylenol that you can take.

 

i took fieoricet and stadol with both of my girls ( they use stadaol in labor until 8 cm or so)

Anonymous
wiltshire
12/11/09 4:07am

I really feel for you and sympathise with any one who has a migrain, two years ago my megrains took a different pattern from what they normaly where, not only did I get the visual disturbances, and the head from hell but I started loosing the use of my limbs on the right hand side of my body and some wonderfull hulusinations, A ambulance was called on this occasion. I was assured it was a migrain and the symptoms were just changing. Well the intence pain did not stop, I would get maybe a day of relief befor the red hot pocker was being stuck in my eye and the vice was being wound even tighter aroung the right hand side of my head till I felt it could be crushed no more somtimes the pain was so bad I would have chosen child birth over what I was going through, I had to carry on with my life I would concentrate on my three children and  my work, that would leave my emotionally and phisially exahusted that I lost touch with many friends as I could not struggle to talk or concentrate this went on for 6 months, finally I was sent to a nurologist after a battery of tests and brain scans I was diagnosed with cluster migrains, I was put on a preventor (sorry I can not remember the name) whith in 4 months my head was staring to feel a part of me with in 6 I had a head back and was beging to live a normal life, after taking the meds for a year I was weaned off of them and put on a beta blocker I still get attacks but are mow managable, I found the triggers were my period, change in weather, to much exercise, and even one glass of wine. I can not thank my doctor or nurologis enough for every thing they have done, as with there help I now have my life back. The thing that I found difficult was the responce I had from people, I had to work through this as they only saw this as a bad head ache, they could not understand how your whole body would be effected- if only they knew though I wish this on no one

Anonymous
doloxysi
12/11/09 11:14am

Thank you for sharing your story with me, I am so happy for you that you got your life back. Thank God. Its only a matter of time now before i have to enter the world of numerous testing and medications before they firgure out what can stop mine. Doctors just think that your either over-exagerating or that its just a headache and they say get some rest and drink water. I dont need to pay anymore doctors to tell me to get some rest and drink water. I know there is more connected to these migraines then just callin it a headache. Im almost scared to even go back to any doctor for fear of mocking what hell i have been through. I sure havent had child birth yet, ill be approaching that in about 5 1/2 months, but if you say you'd prefer child birth over migraines, then child birth must not even come close to the pain of a migraine, especially the ones that just last for days and days. I guess that is more reassuring to me about having my first baby, because if i have already endured the worst pain my body could possible go through then i will be okay at giving birth. Again, I am so happy to hear a success story from a migraine sufferer, at least you got answers and help. If i had to choose between what type of migraines to have, i think i would just go with the migraine headache and not all the crap that comes before and after, like the puking, numbness, speech loss, flashing lights, loud ringing, and achey limbs. I wish you well and have a Merry Christmas. Innocent

Nancy Harris Bonk, Health Guide
12/11/09 8:28pm

Hello, and welcome to MyMigraineConnection.com!

 

I'm so glad you've found us, but sorry you have to be here. As you can see from the support you are already getting, this is a wonderful site, with caring, compassionate members. Now, let's see what information we can give you to help you.

 

An extremely important step at this point is to get an accurate diagnosis. This will simplify matters and make it easier for you to get information and treatment, especially while you are pregnant. Many doctors today use the gold standard, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). Under ICHD-II, there is no diagnosis of "A-typical 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.

I know you probably don't want to see another doctor, but at this point it would be a good idea to see a Migraine specialist. Here's the thing - a neurologist may be a fine doctor but is not an expert in one area because he treats so many conditions like MS, stroke and epilepsy. A Migraine specialist however, is an expert in one area - ours - Migraine disease and headache disorders.  It's important to note that neurologists aren't necessarily Migraine and headache specialists.. 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.

 

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. I 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

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By Doloxysi— Last Modified: 09/03/10, First Published: 12/09/09