New Diagnosis, Meds change, feeling weird
I am 35 y/o female full time military and athletic (training for a half marathon right now). I have been having migraines for 12 years (initial diagnosis). When it began it was a silent migraine, I would get an aura and the left side of my body would go numb. Over the course of a few months stroke was ruled out and I was diagnosed with a silent migraine. They have progressively gotten worse over the years to now where I have chronic migraine. I am lucky to get 5 days out of the month without some sort of pain in the head. I have tried about every preventative and prophylactic out there with no luck. The only time I didn't have migraines were during my pregnancies, but I ended up with hormone headaches instead (not sure which was worse).
I have recently moved and have a new Dr. He reviewed my history and told me it looks like I have Hemiplegic Migraines-no family history so I am assuming it is listed as sporadic. Not something I have ever looked into because I don't think I have weakness, although I do get full sided numbness and other sensory problems. He has also switched my meds. I was on amitriptyline (side effects were horrible- mainly weight gain and menstrual problems). He has put me on Propranolol, which I was on before with no help but I am trying anything at this point for relief. I also take Maxalt during a migraine (reduces the pain and duration about 40% of the time- better than all of the other drugs I have taken) and get Botox every 90 days. I just got the cefaly prescribed as well (haven't received it yet). I have also receive Auricular acupuncture- doesn't seem to help with the pain but I noticed if I get with a migraine I actually can't feel it in the side I have the headache.
My known triggers are weather changes (NOT barometric), and certain alcohols, mainly beer (I get one at the smell of Shiner Bock- weird). Other than that I cannot figure anything else out.
For the last few months my "side effects" have been changing as well. I have started having speaking problems and memory problems. I have been extremely tired. Last week I started getting one on Monday night (Aura came Sunday through Monday). Had my apt with the Neuro on Tues and swapped meds by Friday. The headache from Monday has never left I am on day 11. 2 days ago at night I had issues swallowing solid food- almost like my throat forgot how to swallow- liquids were fine so stuck with meal replacement shakes (issue not as bad but still present). I haven't had any breathing issues (though allergic reaction, but no other issues and it doesn't seem swollen). I have also been getting these weird chest pains almost in the breast area but on the side-more like pressure than pain and is sporadic.
I am at my wits end. I am normally a very active person and am so tired of this. Any help or feedback would be appreciated.
Shawna
Hi Shawna,
Thank you for reaching out and being part of the Migraine.com discussion forum - we're glad you're here!
I'm so sorry you are having a hard time right now - migraine disease can be debilitating, exhausting and frustrating. Getting an accurate diagnosis is important so we can get the correct treatment and learn all we can about our disease. You can read more about that here; https://migraine.com/?s=diagnosis&submit=Go.
You mentioned weather changes and hormones can trigger a migraine attack. There may be other triggers as well. To figure out what they are it may be a good idea to keep a detailed migraine diary for a few months. This will allow you to identify and manage your triggers. We have more information about this here; https://migraine.com/?s=triggers&submit=Go.
Try not to lose hope, there are over 100 medications that can be used to treat migraine disease. If we add up all the various combinations that number goes up dramatically. Something else to keep in mind is when we start new medications it can take up to 90 days before we see a reduction in our migraine frequency and severity. During this time potential side effects can lessen as our body adjusts to the new medication. When you get a chance take a look at this information on migraine prevention medications; https://migraine.com/blog/migraine-preventives-start/.
Let me know what you think
NancyThank you for the links. I have done so much research, and unfortunately I have been on the majority (90%) of the medications on the list including the herbal supplements, right now it is just finding the right combination for me. It is very frustrating, but I am trying to not let it get me down. I have 2 young boys and I do not want to miss anything.
I suspected hormone headaches in the past, but it was hard to determine because my period always seemed to coincide with a weather change- very coincidental...and if there is no weather change I do not get a headache, but it is always a possibility especially since I didn't have migraines for either of my pregnancies. I know for a fact drastic changes in weather- tornando, hail, going from sunny to rainy for more than 2 days- vice versa, and very high winds (40 knots+) will all cause a migraine and I will start getting the prodrome 48 hours out...I am better at predicting than the weatherman sometimes!
I do keep a diary and have done a food elimination diet along with cleaning supply elimination- dye/fragrance free everything!!! I am healthier not eating certain things, but they won't cause a migraine (dairy/soy).
Being able to talk to others in the same boat is very refreshing, I am sure there is a lot I have not thought about yet that I can try. Sometimes we all just need to vent too 😀
Thank you for the response. I had a status migraine when I wrote this (up to 15 days now)...so I am still working with the new medication...My Neuro prescribed me some steroids to see if we can break it, worked the first day for 90 min...and a little longer each day this weekend until I started weaning off. Headache returned (maybe just increased in pain is a better way of saying it) last night and is back now....of course they are calling for T-storms as well, so again I am not sure if it is the weather, but I highly suspect it....I have had these types a few times before ad always end up in the ER. Worst one for me lasted about 45 days....
I have kept a migraine journal for a few years, other than weather its really hard to see any other triggers. I have cleaned my diet completely out of the high allergen foods (dairy, soy, gluten-for the most part). Completed some other elimination testing (chocolate, red wine, bacon- those high triggers). I move about every 3 years so it is interesting to see if any of the new locations are better or worse in regards to weather and the only thing I can see is they are just different. Different extremes still cause a migraine. Germany had very little sun, would still get migraines- even in the winter. Hawaii was full of sun but the weather changed very little- still got migraines. Japan, Fl, NM....list goes on. Have not found that magic location.
After 12 years you would think I am in a place of acceptance, but I am not and I don't "WANT" to accept this.
I will press, and try as much as I can.Hi Shawna,
I've just been diagnosed with hemiplegic migraine as well, didn't even know I suffered from migraine until my stroke-like event 2 weeks ago. I also have the chest pain all over my rib cage area, not a specific location as it kind of bounces around. Sometimes it's severe, sometimes just a dull ache but always there. The swallowing thing is something I also just experienced last week at a work conference, prior to my diagnoses. I freaked out a little but stayed calm since I could still breath and my throat wasn't swollen. But as you stated, it's like my throat muscles forgot how to swallow! My neuro placed me on Topamax to "stop the cycle". I guess this type of migraine can continue on a roller coaster cycle until you can get it to stop and then try to prevent the next one.
I did just read that a short food fast has been known to help break the cycle and I'm going to try it now as I've had a headache and tons of other unpleasantness for over a month. Your original post was over a month ago so hopefully you've found some relief and I'd love to know any tricks that may have helped!
Kristi
I am sorry you are going through this too. I was on Topamax 7 years ago came off 5 years ago due to wanting to get pregnant (known to cause birth defects and has to be out of the system for at least 4 months before getting pregnant). The only thing I noticed with Topamax is it eliminated my aura for the most part (very irregular and had it without headache). I would like to say it reduced the severity of the headaches as well but that was one of the times I had a 2 week-er and ended up in the ER.
Since my last post its been a rollercoaster like you say. I am currently in the middle of a 3 day-er but only mild- 4-5 on the pain scale and came off a 60 hour one on Sunday (ran a half marathon on Sat with the migraine...glutton for punishment?..creating pain to forget pain?...). Noticed the weather is actually drastically changing this weekend....
Aphasia is my newest constant issue. I am now having it affect me even before the aura almost 48 hours out along with burning skin pain. The swallowing thing hasn't happened since, but it was scary. I actually am having a hard time believing the diagnosis because I did not think I have the muscle weakness, but my husband and my running partner just pointed out that in the last month I fell twice running. I keep thinking I had tripped, but maybe I wasn't actually picking up my foot. So much to look at now and be careful of. I have also started getting terrible shooting pain going up the side of my face from my jaw to my temple. Its like all of my nerves are on overdrive when the migraine is in full swing.
